Sarcoidosis Answers for Physicians, Nurses and Patients

Here at SarcInfo, between 2002 and 2004, we identified the cause of Sarcoidosis, and successfully trialled a curative antimicrobial therapy. During 2005 and 2006 the US FDA designated the antibiotics Clindamycin and Minocycline as Orphan Products in the treatment of Sarcoidosis, and studies are ongoing elsewhere.

For information about this breakthrough, please post your questions at the current study-site, or the Autoimmunity Research Foundation.
 
This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but much of it is now out-of-date.

** Patient Tutorials **

 Click here to read "WHY DID I GET SARCOIDOSIS? WHY ME? 

  Click here to read "REMISSION IN SARCOIDOSIS"  

 How a Pathologist can see Bacteria causing Sarcoidosis 

"How does Doctor measure my ACE, and my D-metabolites?"

 Weaning from Prednisone

 Protecting your eyes in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Hypervitaminosis D Symptoms    The SarcInfo F.A.Q.

Medical Abbreviations          CBC Radio Show

Protocol Phase 1-First 3 months

  

** Papers for Physicians **

Antibacterial Therapy induces Remission 

Implications for Autoimmune Disease 
(Here is Fulltext preprint)

Antibacterial mechanisms for ARBs 

Antibiotics in Sarcoidosis- The 1st Year 

Rationale for abx in Sarcoidosis 

1,25-D and Angiotensin II

"New Treatments Emerge.."

Jarisch-Herxheimer in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

The NIH ACCESS Study finds Sarcoidosis does not go away - Click here to see, and print, the brochure


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 Archived minocycline thread-Please do not post here
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   10-28-02 15:17

Hey Trevor and everyone,

What should I know before using Antibiotic therapy?

Trevor and others have noted that antibiotic therapy causes changes in the natural intestinal flora. Most of us are taking replacement flora on the days we do not take Minocin. I noticed that the common gastrointestinal problem (noted in the literature) from minocycline is nausea and diarrhea, but the effect I have is constipation, not diarrhea. One other thing I noticed is that I had to increase my dosage of replacement flora after about one month, when I began having vaginitis. It seems minocycline can also change the normal flora in the female vagina.

Thanks, Belinda
 
 ** Things to remember when using Minocycline
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-28-02 16:12


>>> Make sure you read the "Minocycline Dosage Issues" Tutorial to get the latest info for your Doc on how to use Minocycline to cure Sarcoidosis<<<

>>> Make sure you read the information about the Herxheimer Reaction before taking Minocin <<<

The only way you can get rid of the microbes that cause Sarcoidosis is to kill them inside the inflamed cells that they have colonized. Your immune system has failed to do that, which is why you have the sarcoid inflammation.

Plaquenil (hydroxychloroqin) was one of the early drugs found to be capable of killing some microbes, but not many. At this point we have no experience with using Plaquenil to bring on remission.

The primary way to kill the bacteria is to use Antibiotics. There are three main antibiotics that have been used succesfully to improve Sarcoid symptoms. This message will examine each of them in turn.

The thing to remember is that your body picks up lots of different microbes as you journey through life. If you have the genetic pre-disposition to Sarcoidosis then each time you are exposed to these microbes a few of them will find a home in your granuloma. Thus you are likely to have many different types of bacteria that have to be killed in order to get a full remission/'cure'. And the bacteria is living deep in the tissue, they will not be all killed overnight. From time to time you will need "boosters" if symptoms return.

SarcInfo folks have a unique tool, in that we can use the D-Ratio as a measure of the effectiveness of each antibiotic therapy. It indicates total inflammation, and typically drops in steps each time a species of bacteria is eliminated. When the D-Ratio has reached 1.5, or so, the effect of the antibiotics will be slight, and any suffering that you still have is most likely due to your D intake/storage, or to the drugs you have been given over the years, and you will need to deal with that issue as well.

There is a seminar article on the following antibiotics "New Uses for Older Antibiotics" that is worth reading, and printing for your Doctor.

------------------------------------------------------------
1a. Minocin - minocycline
The antibiotic that gets rid of the worst bugs, Rickettsia and Borellia

Minocycline, of which Minocin is a well-metabolized form, is a synthetic variant of Tetracycline. It is more effective than Tetracycline because fewer bugs are resistant to it, and also because "compared with conventional tetracycline, minocycline is ten times more lipid-soluble", "minocycline has particularly good tissue penetration and excellent CNS penetration" (read more here)

I took a photo of a Lederle Minocin capsule:

http://www.sarcinfo.com/lederle.jpg
Note that on the left it says "Lederle M46" and on the right "Lederle 100mg". Lederle is owned by Wyeth now, and there may be different markings used throughout the world.

Don't take Minocin with Calcium tablets or antacids, or with Orange or Grapefruit Juice. I recommend weak Hot Tea (not coffee) to wash the capsule down. Carnation Hot Chocolate mix (in water) is also suitable.

I suggest taking your blood pressure twice a day to make sure it is heading downward. An allergic reaction to the Minocin should be sending it upward, herxheimer should send it down (over 2-3 weeks).

STEP BY STEP TIMELINE:
1. Antibiotic therapy will not be fully effective in immune-suppressed patients. Patients must be weaned from Prednisone and Methotrexate if reliable results are to be acheived
2. Take your first Minocin on a weekday morning (when your Doctor will be in his office) and wash it down with plenty of weak hot tea (or Hot Chocolate in water)(not coffee). If you have not confirmed that your 1,25-D level is below 45 pg/ml then the initial dose should be no more than 50mg.
3. You may feel unusual within 2 hours. This is usually Jarisch-Herxheimer shock. For those with low 1,25-D levels (under 30 pg/ml) this is light-headedness and mild nausea and mild muscle and joint pains. And irritability. If your starting 1,25-D level is higher, then you can expect to experience some greater degree of Herxheimer.
4. Herxheimer feels like a worsening of all your Sarc symptoms at once. This is because the bugs are driving up the production of 1,25-D as they die. Some patients have reported worsening airways constriction and difficulty breathing. Don't tough this symptom out - get some oxygen immediately (eg at your Doctor's office). Similarly for "heart flutters". If you get any noticeable cardiac symptoms then stop taking Minocin until you can get an Angiotensin Blockade in place.
5. YOU DO NOT HAVE TO TAKE ANOTHER MINOCIN if you could not control the symptoms of the first - kill the bugs gradually, don't attempt to do it all at once.
6. If you have herxheimer discomfort, you can reduce the dosage to 50 mg every other day, and gradually work up to the point where you can tolerate the full 100 mg dose again as the bugs, and the herxheimer they were causing, gradually die off. Your dosage and antibiotic may vary - be sensible - you have plenty of time to kill the bugs - you have already lived with them for years
7. There are many different species of CWD bacteria. Not all of them will succumb to Minocin. You will need to be creative in your antibiotic therapy beyond the initial 60-90 days on 100mg Minocin every-other-day. Three other antibiotics known to be effective in Sarc patients are listed below.

-----------------------------------------
2. Doxycycline

Doxycycline is often preferred by doctors, for some strange reason. This tutorial explains "minocycline has particularly good tissue penetration and excellent CNS penetration; although doxycycline does penetrate the CNS, it does not do so to the degree that is achievable with minocycline" It is capable of killing a slightly different spectrum of microbes than Minocin. Both are capable of killing a lot more than Tetracycline. Take a look at the "Doxycycline worked for me" discussion thread.

-------------------------------------------
3. Clarithromycin (Biaxin)

This antibiotic is frequently used for Strep infections, chances are your Doc is comfortable with prescribing it. It is very effective against Mycobacteria, that are certainly capable of causing sarcoid inflammation, and also H.Pylori and a number of other common pathogens. I recommend you ask Doc to try a 7 day course of it at two tablets (morning and afternoon) every second day. Calrithromycin also works well when added to a minocycline regimen. One 500mg tablet qod with the minocycline.

--------------------------------------------
4. Bactrim DS (Sulfa/Trimeth)

Bactrim acts to stop bacteria replicating. Because it does not actually kill living bacteria there should be less herxheimer from using this antibiotic (it still gave me quite a lot of discomfort, but not pain). Not to be used for long periods, just a week or so at a time. Doc should be comfortable with prescribing it for a short trial at 2 (morning and evening) every second day. Bactrim seems to work best when added to a minocycline regimen, one Bactrim DS qod with the minocycline. It has better eye and ear penetration than minocycline alone.

---------------------------------------------
You need to be 'creative'
(This is where an Infectious Disease specialist might be able to help)

Personally, Minocin worked wonders in the first few weeks, and continued to reduce neuropathy out to 60 days, but after 120 days it got to a point where there was little incremental benefit. I found that soaking a hottub (maybe a hot bath might work) at 102 degrees until my body temperature had risen by about 2 degrees (using a digital thermometer)(but don't let it get too high, and certainly not over 100) made a huge difference, kicking in some minor herxheimer again and then fixing the remaining neuropathy, and more importantly, making my eyes less hyper-sensitive to bright light.
--->Update - 2/17/03 - 200mg qod Minocycline found bugs that 6 months of 100mg therapy had missed
--->Update - 2/17/03 - Study and implement the new Minocin Dosing Tutorial

---> Be creative - Herxheimer is your friend - you have to kill all the gram-negative bacteria

----------------------------------------
Constipation
The 100mg every-other-day Minocin dosing regime eliminated the side effects that are reported in the literature (but your mileage may vary...) Constipation was the only problem I had with antibiotic therapy. "Solaray" "Multidophilus" lactic flora, taken three times a day (but NOT within 3 hours of taking the Minocin) seemed to help a bit.

I found that Milk of Magnesia worked well, at quite low dosages.

For severe constipation the Over-The-Counter laxative 'Dulcolax' (Bisacodyl 5mg) worked fine (but only use it occasionally - it is addictive).

-----------------------------------------

When you get remission - you need to strengthen your immune system with Vit D supplements

As the antibiotic does its job be careful that your 1,25-D level does not fall too low (mine fell to 13.5 pg/ml when I went into remission, well below the optimal 20-25 pg/ml). You will probably find it more convenient to take a D supplement that to try and juggle sunlight exposure. Keep it very, very, small. I used some Calcium/Magnesium and Cholecalciferol softgels ("Nature's Life") which give 200 IU when you take three capsules a day. Take only one capsule (66IU) every two or three days, as needed, and take capsules more frequently as needed to maintain the target 1,25-D level (you will recognize the symptoms of low 1,25-D after a while)... If you take too much D then you will need extra ARBs to knock back the symptoms...

I think that trying to use just sunshine to boost up your D supplies (when in remission) is too erratic. But don't take a 'normal' 400 IU capsule - or you will be guzzling extra ARBs for a week

It seems as though your calcium/bone system gets back into normal kilter when the 1,25-D is at low levels (in remission), but I haven't rigorously proved this yet...

..Trevor..
ps: Remission (IMO) is defined by "a wonderful feeling of liberation from all those years of suffering"...
 
 Re: Things to remember when using Minocin
Author: carol (---.proxy.aol.com)
Date:   10-29-02 05:23

what a wonderful place to come to obtain information. Actually someone e-mailed me with the best advice i would like to share--he said"please don't do like I did at first .It is ok to trust your doctor but don't believe everything he tells you because he really doesn't know(THAT IS WHY THEY CALL IT A MEDICAL PRACTICE.)continue to seek out information on your own. good luck and god bless. I don't know where you people are getting the doctors who take the time to read or discuss anything. my son asked the pulmonogist about minocin yesterday and needless to say he did not prescribe it. he said the enlarged lymph nodes may go away anyway. his ace was 97 yesterday.
 
 Re: Things to remember when using Minocin
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   10-29-02 06:28

Carol,

Those of us who have found doctors who take the time to read and discuss things with us have worked at the doctor-patient relationship to get it to be one that will work. We also have left doctors who didn't want to work on our case.

The "wait and see" approach is cautious enough. Use the waiting time to read everything you can on sarcinfo.com and print out key articles. I took the key articles to my doctor, covered them briefly, and asked him to read them. On a follow-up visit, I asked for the vitamin D and ACE tests. When those came back high, I followed up with the article about minocyclines used to treat sarcoidosis, P. Acne found in sarcoid lymph nodes and Rickettsia Helvetica in sarcoidosis granulomas. It would be nice if our doctors knew about all things, but some of the medical research is new, and sarcoidosis is not a common illness they encounter daily. Be generous in supplying copies of the medical research. If you send an article in the mail, follow up with an extra copy to discuss and leave behind at the next office visit.

We have to understand the disease and our symptoms ourselves, then take responsibility for our own health. Staying out of the sun and avoiding vitamin D foods and supplements is something only we can do. These steps don't cost anything and have no risk of harmful side effects. Staying out of the sun and avoiding vitamin D brought me a great deal of pain relief, and lowered my ACE level some.

Patience, persistence and knowledge will pay off.

Take care,
Belinda
 
 Re: Things to remember when using Minocin
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-29-02 11:42

Carol,
Your son must be suffering. An ACE of 97 IU/L is high. It would be nice to have had the D metabolite values in order to confirm the extent of the inflammation. Good luck in your search for a new doctor, or a good lawyer to go after the last one.
..trevor..
 
 Re: Things to remember when using Minocin
Author: Betty Campbell (---.52.194.203.acc03-dryb-mel.comindico.com)
Date:   11-13-02 18:26

Trevor,
Re AVAPRO. Having spent 2 wks taking 75mg daily, as prescribed by my careful, but understanding general practioner, we found my BP reading had increased to 160/80, as against the previous (before Avapro) of 145/80, so my doc indicated affirmation of your higher dosage being best!
His directions on new prescription is for 150mg in the morning, once daily, I guess) Is this enough? I'll go back for review if all goes well with this lot. I had no side effects from the 75mg. and feel really good in comparison to a few weeks ago.

>>>Update by Admin - Betty is now comfortably on 150mg every 8 hours

Re MINOCIN. My prescription for this (from careful doctor!) is labelled MINOMYCIN and says to take two tabs daily immediately after food. They are for 50mg. tabs. Would MINOMYCIN be our Australian equivalent? Our chemsit assured me they were LEDERLE brand and gave me full printouts of data re both scripts, and the package clearly states "Lederle" and is reg. trade mark (AUST R 4075). I will start taking 100mg alternate days.

I thought you might be interested to know these 2 scripts cost me a total of 90cents Aus. the Avapro = nil and the Minomycin = 90cents Aus. I have a part pension and now, nearing end of year, when our individual prescriptions reach a certain number of same, many of them have no charge. The new year starts all over again. I was expecting about $3 per tab for the Mincin (Lederle) which would be something like double that in US dollars.

Cheers again, Betty
 
 Re: Things to remember when using Minocin
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-13-02 18:59

Betty,
Yes, Lederle Minocin is called Minomycin in Australia. The dose that we know works well is 100mg every two days. This gives your body a chance to recover between doses. You will probably get a Herxheimer reaction after the first dose. Take two 50mg capsules at once with a big cup of hot tea and no calcium or antacids for 2 hours...

I found Avapro worked best at 150 mg every 8 hours, but most Docs tend to draw the line at 150mg every 12 hours. They just don't understand we have all those extra receptors in our inflammed tissue

If you are only at the 150mg/day level then you want to break the tablets in half (or whatever) in order to take half the dose (75mg) in the morning and half in the evening. This ensures that the level in your body is more constant during the whole 24 hours.

The rise in blood pressure is because 1,25-D is a positive modulator of the renin-angiotensin system in sarc patients, not a negative modulator, as it is in most of the population. I know that's complicated. It is explained in our latest (doctor's complexity) paper.

All you need to know is that your BP will go up as your 1,25-D goes up. Consequently your BP comes under control at the same time as your sarc systems. On the other hand, maybe that's not so strange after all

..Trevor..
 
 Re: Things to remember using Minocin
Author: Kathy (65.121.96.---)
Date:   11-18-02 15:52

Trevor,

I saw my doc last week, and he is very interested in your material. He did prescribe Minocin (although I forgot to get non-generic); and I have been on it for about a week now. I am worse, my heart rate goes up, I am dizzy, etc - and I am very happy about it, since that apparently means it's working! My doc has not yet ordered labs - he wanted to get through all your information, and then do his research - but he is very, very happy to have an alternative to steroids. Even though some symptoms are worsening (I assume a herxheimer reaction) - I am feeling so much better in other ways! I was actually hyper one day! A lifetime of hyper, followed by 3+ years of dragging fatigue - it sure felt good!

Thank you so much - we'll put the other pieces together, but it's a great start!!

THANK YOU!!! Kathy in Wyoming
 
 Re: Things to remember when using Minocin
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-18-02 19:08

Kathy,
This is where the D metabolite test results would have been very useful. If I knew for sure that your 1,25-D was high then I could fortell a long period (a month or two) of adjustment as it fell. I am just assuming that, like 94% of the values that have come in from other sarc patients, yours would have been reasonably high.

Belinda can probably help us a little here, but I recall that when my 1,25-D was fluctuating I would get symptoms both on the way up and on the way down. certainly the heart rate is one of the things that is most easily noticed. Unfortunately my memory is hazy, it was some time ago for me. But I also recall that difficulty swallowing was related primarily to fluctuations in 1,25-D status, as well.

I would suggest you should start taking your blood pressure and make sure it is on a downward trend as your 1,25-D lowers. An allergic reaction may send it upwards, so it is probably worth taking frequent blood pressure levels.

If you were a diabetic I would expect your diabetic control to get better as the 1,25-D dropped back towards normal as the Minocin was doing its job.

That having been said, Minocycline is capable of causing allergic reactions, and you will need to be diligent and watch out for signs and symptoms of those. Minocin, which uses a different formulation from the generic, should have fewer side-effects, as Dr Mercola has not really had any such problems in the 2000 (or so) patients he has treated with this dosage protocol. Other doctors have also reported fewer problems with Minocin in their discussions at the "Dermatology Online Journal".

If your "herxheimer effects" last more than another day or two I would change to the Lederle Minocin. (take a look at the new information I am putting into message 2 on this thread)

..Trevor..
 
 Re: Things to remember using Minocin
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   11-18-02 22:06

Kathy,

My Herxheimer response lasted four days, followed by four days of the Herx symptoms improving. On the ninth day of Minocin, dizziness set in. I was so thrilled to be able to have more sensation in my right side, I simply ignored the dizziness. On the tenth day, Trevor (I think) suggested I check my blood pressure to see whether it was related to the continuing dizziness. My blood pressure tends to run lower than normal. The only time my blood pressure has seemed normal was when my 1,25-D levels were high.

It turned out my blood pressure was dropping to 89/60. I have a blood pressure cuff at home, so began monitoring it. I drank V-8 juice (since it contains a lot of salt) to get the BP up a bit, and that helped the dizziness. I had been staying indoors with the blinds closed. Then Trevor explained that I could perhaps begin to allow myself a little sunlight exposure.

When I had dizziness without low BP, I usually recovered after a nap, and it didn't last more than 24 hours. I also needed to eat at regular intervals after I began taking Minocin, ensuring I ate at least three small meals per day, to keep from feeling woozy. That was a change, because when I was sick with sarc, I often forgot to eat and I was never hungry.

The interesting this is that after the initial four days, I was improving in other ways (such as sensitivity to touch) although I had some dizziness.

Belinda
 
 Re: Things to remember when using Minocin
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-19-02 02:41

Belinda and Kathy,
I doubt that Kathy is having a problem with too low 1,25-D, but we don't have the D-Metabolite readings so we can't be sure. Also, it took several weeks for the Minocin to really affect my D levels. But if your 1,25-D level falls too low (mine fell to 13.5 pg/ml when I went into remission, well below the optimal 20-25 pg/ml) you will get a different type of symptom. Then you will have to take a D supplement. Keep it very, very, small. I found some Calcium/Magnesium and Cholecalciferol softgels ("Nature's Life") which give 200 IU a day when you take three capsules a day. Take only one capsule (66IU) every two or three days, as needed, when in remission. If you take too much D then you will need extra ARBs (and an understanding doctor) to knock back the symptoms...

The problem with using sun exposure to boost up the D is that it is so hard to control during the critical pahse as your life changes and you try to get to grips with the "new you". Also, sunlight generates 1,25-D immediately (in about 2 hours) and it only stays around for a day or so. By building up your 25-D reserves with a dietary supplement you maintain a more stable level of 1,25-D over time.

..Trevor..
 
 Re: Things to remember when using Minocin
Author: Sylvia (---.proxy.aol.com)
Date:   11-19-02 09:32

Trevor, I need some help understanding this. I hope you haven't covered it before.

Does a person need to take Minocin for the rest of their life? From what I understand, getting the Vit D under control will cause the sarc to go into remission but the Minocin is needed for the (possibility) of microbacteria. How do you know when they are dead? Can they live in the scar tissue of the granulomas? If you get the Vit D under control, what symptoms go away? Can the Vit D be controlled and a person still be 'sick' because of the microbacteria? Does a person have to take the Minocin to become symtom free?

I hope that doesn't beat around the bush too much. I guess where I am having the problem is the Vit D can be monitored so you know with lab work when your ratio is normal but the microbacteria can't be monitored. You don't know if you need it or how long you need it for. And since it seems to come with its own set of side effects, it seems it could be a hard sell, ie: more meds that make you feel bad :-(

Thanks so much, s.
 
 Re: Things to remember when using Minocin
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-19-02 10:09

Sylvia,
You cannot easily stabilize the surges in your 1,25-D (that occur, for example, on sunlight exposure) unless you get your D-Ratio down to somewhere near normal, which I currently suggest is something under 2.5 Remember that 1.25 is normal, while most Sarc patients are up around 4 to 6.

The D-Ratio rises above the normal 1.25 when there is active inflammation energetically converting 25-D to 1,25-D in the granuloma. The D-Ratio is the only way to measure and track the inflammatory activity of the bacteria. As the D-ratio drops it reflects less inflammation (and less bacteria).

You only need to take Minocin, and maybe other antibiotic therapies, until the bacteria living in your granuloma are dead. Of course there is a risk of recurrence, but monitoring the D-Ratio (as well as keeping track of how you feel) will allow you to cease taking the antibiotic while there are no, or few, bacteria feeding the sarcoid inflammation.

I personally found that the biggest changes occurred in the first 30 days, and certainly everything was stable by 90 days. I had no side effects except constipation. I felt wonderful, with a new lease on life. I certainly did not feel 'bad'

Not everybody has to take Minocin to become free of sarcoid inflammation. Most cases of sarcoidosis remit autonomically within the first two years, because the bacteria do not manage to get a decent presence before the immune system rejects them. Once the bacteria have established themselves they have to be destoyed within the granuloma cells in which they are living. Minocin is one of the few antibiotics that is capable of reaching them there.

Once the D-Ratio is lowered to somewhere near normal then ARBs can become more effective at blocking symptoms from occasional surges in the 1,25-D. The ARBs are innocuous meds with no side effects (at least in my experience).

(If Doc is bothered by some of the complex issues behind all this, he/she should call me and I can walk him/her through some of the more theoretical aspects that have been glossed over in this summary).

..Trevor..
ps: as far as we know, nothing can live in the collagen which comprises the fibrosis that many refer to as "scar tissue"
 
 Re: Things to remember using Minocin
Author: Denise Testa (---.connect.com.au)
Date:   11-20-02 15:54

Hi Trevor, Belinda and fellow sarc sufferers.

I went to the doc yesterday and my great doc gave me a script for Minomycin (Aus).

Unlike Betty ( Betty where do you come from?) I don't get a part pension and I had to pay $47-50 for the capsules. I went to two chemists - both would have had to order them in anyway as they didn't have them.

As I have had an acute sinus infection on and off since early october I wanted something to clear that up first. I compromised and took the tablets which are half the strength and price of the capsules until I can get the sinusitis (sarc now) under control.

Is it OK to take these twice a day until the infection is gone and then go onto the 100 mg b. d. ?

I had two courses of Rulide and the infection came back. the second time when I was only three days into the treatment.

This infection along with the strong Australian sunshine (in drought mode) has eventuated in a full sarc flair. I had been in remission for about six months, feeling almost normal. (I could almost get to the top of a flight of stairs before the heavy feeling of fatigue in the muscles as opposed to getting it three steps into on) I felt normal and my muscle strength returned. Since the start of the flair the most disillusioning thing is the muscle weakness that comes with the pain. The fatigue of sarc is not normal - it in no way equates with tiredness and is not in anyway helped by rest.

I have had a lot of problems with my lymphatics with this infection. Especially in my neck, left shoulder arm and left side of my face. It feels heavy, cold and full. I hate this most of all. Especially since it was all a bad memory such a short time ago. I was beginning to think my remission was permanent but along came my four year old virus laden niece to coincide with summery drought conditions and that was a long remission shot to hell.

Luckily it rained last night and is overcast today. I am on Minocin, and 5 mg of pred to get the inflammation under control, just for a week or ten days. I see the specialist again on the 18th.

I plan to go back and we'll get ACE, CRP and ESR done when i come off the pred. If they are abnormal I will get another D-ratio also. It will be interesting to see if there is change from the first ratio which was approaching normal.
 
 Re: Things to remember using Minocin
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-20-02 16:15

Denise,
You want me to tell you how Minocycline TABLETS will work? Heck, I am having enough trouble sorting out the capsules

So I think your plan is a good one, use the tablets until the Pharmacist can get the capsules in. Dr Mercola has said that the Wyeth/Lederle generic minocycline (which used to be sold in the USA until recently) was almost as good as the Minocin, since they came from the same factory, so I suspect you will be fine with the capsules, when they come in

I was interested to note that the UK formulary has two separate entries for "Minocycline", one for the generics and one for "Minocin MR".

Viruses might elicit a slightly different type of inflammation in Sarc patients - a B-lymphocyte type. Still get 1,25-D problems from it, though. So keep an eye out for this, especially if the Minomycin can't find any bacteria to kill...

Sorry to hear you 'singing the blues', oh well, 'all things must pass'.
Keep Smiling,
..Trevor..
ps: not sure that pred is a good idea. It will tend to reduce the susceptibility of any granuloma-dwelling-bugs to the Minocycline
 
 Re: Things to remember using Minocin
Author: Betty Campbell (---.55.194.203.acc04-dryb-mel.comindico.com.)
Date:   11-20-02 19:39

Denise,

I have realized that you and Cher are from Oz and I know Cher lives in my old home state of W.A, but have not yet discovered in which state you live. I am in Melb.Vic...suburb of Hampton, and please feel free to email bettyv@austarmetro.com.au if you feel like it anytime.

Re cost of prescriptions....As each New Year starts our lists of prescriptions anew, there maybe will be a cost for Avapro/Minocin, but right now, we are on the "Safety Net", which means we have reached the number proscribed and after that they are free or minimal charge. After being self-funded retirees for so long, I now get a part pension, which makes for much less hassle. For 3 1/2 yrs I just present my medi care card to my dermatologist. I recently had a first visit to an ENT spec..and the a/c was for a very reasonable $58. which I paid, and then got a refund chq for $10 in the post. I rang to verify but it was right. Even tho my lungs clear, I was for a long while having problems getting breath thru my nostrils.. one can only mouth breathe for so long, I found...I would even wake at night gasping for breath...This ENT man found me a perfect speciman..no sarcoid..he said..no polyps..I was in and out in about 15 minutes. I have top health cover and receive 70% rebate on a/c's from physio, osteo, dentist, etc.
For extra comfort I can now recommend driving cars with high seats..No more groans and moans caused by steroid myopathy in legs.

I have often wondered how you and Cher managed getting result for 1,25D, having read my blurbs on this phorum re my difficulty. If state of SA send blood for that test to RMH, I wonder if same goes for W.A. NSW of course, have Concord hospital.

I have found no difference here between 50mg tabs and the 100mg capsules of Minomycin, and also, that Lederle Lab, (Div of wyeth Aus. P/L--Qld) no longer distributor. It is now CIGMA TEL. 1800 036 073--in Melb.and soon their name will appear on package.

I have been on Avapro everyday for some weeks, but only 4 times on Minomycin 2x50mg alt. days. Both yesterday and today have been dizzy. My local doc had me on 150mg Avapro daily but I upped it to 150mg every 12 hrs when I had no side effects. Tonight I will take 75mg Avapro and see what tomorrow brings forth in the dizzy stakes, altho I guess it is the Minomycin.

Cheers, Betty
 
 Re: Things to remember using Minocin
Author: Denise Testa (---.connect.com.au)
Date:   11-21-02 19:01

Hi Betty,

We are all over the place. I am in Sydney.
I reached the safety net at the end of last year and got free perscriptions. Obviously this year I have had a decent span of remission and have not needed so many drugs.
I am a Phd Student on a tax free stipend. It is enough to live on - just. I earn $80 a month too much to get a health care card. This is fine if you are a twenty one and fully fit but if you have a chronic illness and twice the age, when you do get sick, you notice the hole the dent leaves in the budget. I must have outlayed about $300 in the last two weeks on scripts and specialist fees. This is about half my income and doesn't leave much in the kitty after paying the bills. Mum offered to pay for my Minomycin but the chemist and I already came to a compromise. I am expected to part fund an overseas trip next year for research, but I keep telling my supervisor that when I have to buy drugs I really cannot save a cent. It always comes to forty or more dollars every time I go there and I've been there a lot lately.
Thanks for the proffering of email.

And Trevor thanks for the advice. I will get off the Pred asap.
I don't like taking it but it seems to reduce the inflammation.

Den
 
 Re: Things to remember using Minocin
Author: caroline (---.win.org)
Date:   11-29-02 19:53

Hi All,

For grins I typed, "antibiotics + sarcoidosis" in Google Search -- this site is one of many hits:
http://www.digitalnaturopath.com/treat/T190809.html

Under the heading of Sarcoidosis, it reads:
Benefit may be obtained by using an antibiotic that is capable of attacking the bacteria which are living in the soft tissue and granuloma. The antibiotics that have been most successful against this type of bacteria are the tetracyclines. Minocycline has been proven effective in sarcoidosis.

Further suggestions to those taking antibiotics:
See your doctor if a course of antibiotics is required. Remember to use a broad spectrum probiotic afterwards to help repopulate your colon with good bacteria and thus keep pathogenic (bad) bacteria and yeast in check.

Something to keep in mind whenever using antibiotics is that they may be more effective when taken with bromelain. In humans, some undetermined activity of bromelain has been documented to increase blood and urine levels of antibiotics. Combining bromelain and antibiotic therapy has been shown to be more effective than antibiotics alone in treating a variety of conditions including pneumonia, bronchitis, staph skin infections, thrombophlebitis, cellulitis, pyelonephritis, perirectal and rectal abscesses, and sinusitis.

Trevor, do you have any thoughts on combining minocin or doxycycline with bromalain? Have you seen this website? It was last updated this month.

Caroline
 
 Re: Things to remember using Minocin
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   11-29-02 20:43

Caroline,

Bromelain is an enzyme found in the fruit and stem of fresh pineapple. I found out from a nutritionist I consulted that it has natural anti-inflammatory properties. Since I love pineapple, I was happy to have an excuse to indulge myself.

Only fresh pineapple has bromelain, because heat from canning kills this enzyme. The enzyme is supposed to be good for digestion, and pineapple contains some vitamin C (but no vitamin D).

I haven't seen any information about interaction with antibiotics, but I haven't been eating fresh pineapple since I've been on Minocin. I've been having a good response to Minocin. My skin lesions continue to recede.

Belinda
 
 Re: Things to remember using Minocin
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-29-02 21:26

Hey, Folks, WAIT A MOMENT

The primary problem we have at the moment is from patients deciding that they have allergies to Minocin and giving antibiotic therapy a bad rap, when they really are only experiencing severe Herxheimer flares. It is hardly helpful to recommend anything that might make the bugs die even faster, and the herxheimer even worse

I will be posting more info about this as soon as i get time to THINK it all through. Sheez, you all move SO FAST...

Anyway, Belinda has sent me some links on Bromelain. It is a salicylate, like Aspirin, and I am hesitant to recommend to a sarc patient before we see some safety data from sarc patients. But it looks quite interesting for patients who have been on Minocin for more than 2 months, and are seeing little incremental gain.

Look at these links for more info:
http://lassesen.com/cfids/herxheimer.htm
Bromelain: biochemistry, pharmacology and medical use
http://www.oceanasoul.com/hawaiian/ingred.htm
http://www.hollandandbarrett.com/Supp/Bromelain.htm
Monograph:Bromelain

Another thing I am looking at right now is hot baths and hot-tubs. I personally have been on Minocin and Minocycline for many months now and, even though it has turned my life around, it has lost any progressive effect on me, and my D-Ratio is stuck above 2. When I stopped for two weeks and started again I got mild herxheimer, indicating there were still some bugs there to be killed, just as the D-Ratio would indicate (remember 1.25+0.5 is the target)

Before you go out and try Bromelain I suggest soaking in a hot bath or hot tub at 100-102 degrees F, or so, for long enough to make your skin hydrate or dehydrate (I can never figure out which of those it does) Do this 3-6 hours after taking the antibiotic. Measure the temperature with a $7 digital fever thermometer from the drug store. The theory behind this therapy is this: there are no macrophages near the skin surface, and, unless we have skin lesions, no granuloma. Bugs of the Rickettsia/Borrelia/Mycobacteria type can apparently hide in the skin, avoiding the immune system. If we can get the antibiotic to perfuse the dermal tissue we might be able to get at those pesky critters.

Try a hot-bath/hot-tub sometime, because except for herxheimer (if it works), the 'side effects' are guaranteed to be pleasant

..Trevor..
ps: thanks for the post Caroline, its an interesting one
pps: of course I realize that bugs in the skin could be the reason for sun sensitivity, and of course I am working up the biochemistry for all that and will share it with you soon..

                                               (C)Copyright 2002 SarcInfo.com
 
 Re: Things to remember using Minocin
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   11-29-02 23:48

Trevor,

You are so thorough! I didn't notice that Bromelain might cause an intensified Herxheimer reaction when taken with antibiotics. I am glad I had stopped my fresh pineapple snacks before I began taking Minocin. Otherwise, I would probably never have known what had happened - if pineapple had caused a problem.

Belinda
 
 Re: Things to remember using Minocin
Author: Kathleen (65.121.96.---)
Date:   11-30-02 14:15

Trevor -

I was prescribed Minocin 100 mg BID - I can feel the effects very quickly when I take this - my symptoms return, including shortness of breath, chest pain, dizzy, mental lapses and aches. I have stopped for a day or two when the effects are too bad to work (I've only been on about 2 weeks), and I can't yet take 2 per day. However, although I am allergic to every painkiller known to man (which really bites), I am certain that this shortness of breath is simply a Herxheimer reaction - an allergic reaction has more of a sense of urgency about it - and the effects linger much longer than Herxheimer effects, which subside fairly quickly when you stop the Minocin. I am so grateful to NOT be allergic to this!!! I read in other places where at some point, you just need to deal with the side effects and get through them, and I will do that. (I am taking some time off work) - BUT - I CAN work, and that makes me incredibly happy!

Of course, all shortness of breath has a sense of urgency, and I know I have needed to calm myself recently with the Herxheimer effects. I am trying to be glad that I am temporarily worse, in order to get better - and then it seems okay - even feels like progress (which, of course, it is!!)

Trevor, I have a question - I recently had a bone scan of my foot - and there are "reactive changes" on the metatarsal with "periosteal thickening" on the xray, and the scan states "increased activity" in the area; 2 years ago, I had the same results on the other foot in the exact same location. They are calling them stress fractures - but could this be granulatomous inflammation? If so, could (or should) this be biopsied (all the docs I have seen would prefer a tissue biopsy for a definitive diagnosis); and will the Minocin take care of it also?

Thanks! Kathy in Wyoming
 
 Re: Things to remember using Minocin
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-30-02 14:41

Kathleen,
100mg BID is the traditional dose, but you may not need that much. Only time will tell. The problem with using the 200mg BID is that there are actual side effects that Minocin can cause, and they are mainly noticed at high dosages. The rationale behind the 100mg QOD is that it is still effective at killing the bacteria, while making side effects virtually non-existent. It is therefore useful when all the bacteria are not immediately available for perfusion, and longer-term therapy is required. This seems to be common in RA and Sarc.

The half life of 1,25-D in serum is 4-6 hours, so the effects dissipate quickly once the bugs stop dying (when you stop the Minocin)

The best review paper on Bone Chemistry is this paper from Endocrine Reviews.There are two ways that the bones of sarc patients become weak. Firstly, the high levels of 1,25-D stimulate osteoclast activity, which breaks down old bone. Sometimes it is not replaced by new bone (the job of osteoblasts). The most frequent cause of this is when the patient is taking a corticosteroid, which blocks the proper operation of NuclearFactor-kappaB, and the RANK-RANKL reaction by which bone is regenerated. The calcium metabolism in Sarc patients also does not funtion correctly to regenerate bone when the patient's 1,25-D levels are high.

I would not recommend any biopsies beyond the first - provided that it was definitive (in any case - the Herxheimer is telling you the diagnosis was correct). You should assume that any other inflammation is likely to be sarcoid related, and they are all treated the same way - get rid of the bacteria which feed the 1,25-D generation and get that 1,25-D back to normal levels so that the normal Calcium metabolism kicks back in as your kidneys regain control of the D-metabolism from the granuloma.

I would not be surprised at a thickened periosteum. 1,25-D is heavily involved in the transformation of collagen into cartilage and 'fibrosis' (click here).

..Trevor..
 
 Re: Things to remember using Minocin
Author: Mary Hall (---.tnt2.saginaw.mi.da.uu.net)
Date:   11-30-02 15:33

To Caroline & Trevor,
The website that Caroline is talking about is the exact same info I came across and e-mailed you about. www.digitalnaturopath.com I'm not so sure that it is a coincidence that I
saw the same info. I know Bromelain is a digestive enzyme, whose main source is fresh pineapple. My own research on enzymes is that it has shown to be effective as an anti-inflammatory for sports injuries,etc.
Whether or not it works synergistically with antibiotics, I don't know.
An excellent book is; The Complete Book of Enzyme Therapy by Dr. Anthony J. Cichoke.
Mary
 
 Re: Things to remember using Minocin
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-30-02 15:38

Mary and Caroline,
A bigger question in my mind is whether it has the same effect on Sarc patients as it does in the normal population...

..Trevor..
 
 Re: Things to remember when using Minocin
Author: Admin (---.vnnyca.adelphia.net)
Date:   12-10-02 07:51

I have added some updated information to message #2 at the top of this thread
..Trevor..
 
 Re: Things to remember using Minocin
Author: Meg (---.188.243.46.euc.wi.charter.com)
Date:   12-17-02 18:33

Trevor,

In the discussion of bone chemistry, mention was made of 1,25-D being heavily involved in the transformation of collagen into cartilage. The left side of my sternum is very prominent and is in fact the initial reason a CT scan of the lung was finally ordered after chest xray and ultrasound indicated only a thickening of the cartilaginous junction. None of the specialists I saw was impressed by this finding. Is it possible that this is also a symptom of sarcoidosis?

Meg
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   12-17-02 19:27

Meg,
1,25-D is an essential element for the production of collagen (fibrotic tissue). Collagen chemistry is still being fully worked out. It is complex. I am not sure that the thickening of your sternum could be blamed upon a high 1,25-D value, while the general tendency for collagen to form where you don't want it (soft tissue) and disappear from where you do want it (joints) is most definitely attributable to varying concentrations of 1,25-D.

The problem with medical specialists' understanding of 1,25-D or Cytokine release or even the biochemical action of Prednisone, is that most were trained before we discovered how organic molecules interact by "signalling" to each with messenger mRNA and messenger proteins. Their concept of molecular chemistry stops at about the molecular weight of glucose. It is tough for them to get to grips with the huge new molecules and polymeric proteins that we have now found to be critical elements in the body's operation.

I was trained in that same time period (the 70s and early 80s), but I have used the Internet and taken 2 years of sabbatical to learn up on all the new theories. It is not in the job description of medical specialists that they do this. It is just not the way things are done...

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Denise Testa (---.connect.com.au)
Date:   12-17-02 19:47

I had to see my immunologist early after having a sarcoid flare due to virus followed by intractable soft tissue swelling of sinuses.

He has put me on a week of Fluoxicillin.
Some antifungal I have never heard of because he said some colonisation of sinuses has proved to be fungal rather than bacterial according to new research but also it will counteract any thrush caused by the antibiotic.
He as also put me on a 25 day course of predisone beginning at 25mg reducible and finally a month of the antihistamine Zyrtec. OH dear!

I did find some benefit with the minomycin of both sinus and sarcoid symptoms but the inflammation of both is proving intractable. I cannot afford to be ill both from a time and money standpoint.

I know these will not please you Trevor put apart from putting a gun to the doctor's heads we cannot get them to prescribe the beneficial medication.

I am glad I have got some cover for the thrush this time, if nothing else.

I lost no weight or put it on on the Rulide.

I lost weight while recently being on the minomycin and prednisone. I have now lost 12 kg since July.

Denise
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   12-17-02 20:27

Denise,
Your D-Ratio was only 2.1 and your 1,25-D was 30
So you are very close to where you need to be.
It is likely that the Minocin was doing nothing for you, having already killed the bugs when you took it years ago. It is also possible that the Rulide (Roxithromycin) also did not threaten the cell-resident bugs that were still in your body. Remember, you have already used Minocin before, and you have used plaquenil as well.

So you will need to be a little creative in figuring out how to get at the rest of the bugs. But giving them care and nurture by shutting down your immune system with Prednisone, is something I never thought any decent immunologist would recommend.

Many of us have figured out ways to bring our Doctors up to date. They prescribe ARBs for other patients every day. Why not to us? As you say, we can't afford to waste the time messing around. Maybe a stun-gun would be a suitable compromize

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Kathleen (65.121.96.---)
Date:   12-18-02 19:00

Trevor -

Don't we wish...I could put a stun gun to great use!!!

Kathy in Wyoming
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Meg (---.188.228.34.euc.wi.charter.com)
Date:   01-03-03 13:58

Trevor,

In the above message on Minocin use, you state that the optimal level of 25-D is 20-25 pg/ml. But in 2 previous posts you've said that it should be much lower. Can you clarify?

Also, since my ratio is close to normal at 1.5 and I have not had any significant negative effects following the Minocin, would it be advantageous and safe to take it daily instead of q.o.d.?

Thanks,

Meg
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-03-03 15:03

Meg,
The optimal level of 1,25-D is 20-25 pg/ml. This is the important target.

The optimal level of 25-D is the level that creates the target level of 1,25-D

Some patients, who had high D ratios, managed to depress their level of 25-D very low (10 ng/ml or less) by D avoidance, in order to get their 1,25-D down into the target range.

The target range is lower than the average value for 1,25-D in the general population because sarc patients get surges in their 1,25-D which are uncontrolled, a result of the 'genetic predisposition'.

We do not know enough about the D-ratio yet to draw any significance from your 1.5 value. On first glance it appears that the 1,25-D entering your blood stream (from your inflamed tissue) is small. Does this mean the inflammation is in the skin or some other poorly perfused region of the body? - we don't know yet.

Maybe the 1.5 indicates that most of your active inflammation has been knocked down and all you are dealing with is the surging of 1,25-D values during 'normal life' caused by the 'genetic predisposition' to sarc. I tend to think it is this latter factor. In this case the ARB (Benicar) and D rationing are the keys to achieving relief. Antibiotics generally are of most help to folks with higher D-Ratios.

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Kathleen (65.121.96.---)
Date:   01-03-03 16:27

Trevor -

I saw my doc today - I am taking two weeks off, starting Monday, to stay out of the sun/and light. I am waiting for my new sunglasses, and tinted and more protective regular glasses.

My optometrist was fascinated my your article (I took him "Remission in Sarcoidosis"); and he pointed out he told me two years ago how important eye protection was (he is right - he did!!!) My lenses will be 90% filtering; and if possible, he will get the Zeiss lenses. He was very interested in making sure everything complied with your article.

My GP will re-measure my D-metabolites at the end of the two weeks, and see where we are. He also increased my Benicar to 40mg, TID.

I am very hopeful!!!

Kathy in Wyoming
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-03-03 17:20

40 mg TID, Kathy - you hit the jackpot!!!

Don't forget that the NoIR provide a good standard of comparison. they are not really expensive (with the on-line discount) and I still recommend you get them as a standard for comparison, or for days when you get completely wiped out

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Meg (---.188.228.34.euc.wi.charter.com)
Date:   01-03-03 20:15

Trevor,

Thanks so much for your easy to understand explanation. I've noticed more skins eruptions lately so maybe that is a result of the Minocin. At any rate, my fatigue is certainly lessened. I don't care if it is a result of avoidance of sunlight/Vitamin D and the Benicar or the Minocin. I'm just grateful to be able to get though an ordinary day without napping and less aches/pains.

Thanks,

Meg
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Caroline (---.win.org)
Date:   01-03-03 20:57

Meg,

Less fatigue is what I have noticed first. Isn't it wonderful to not feel you need a nap after every waking hour?

Secondly, my right hip is pain free! I recently had x-rays which were negative, followed by MRI, also negative. The pain would not allow a good nights sleep. It's completly gone. Standing felt like my hip would break at any time.

My PCP prescribed minocycline and will consider benicar if he feels my condition has improved in a month. I hope relief of these two important symptoms are enough. Now I am greedy and want my walking to improve to where I don't have to hold onto everything in sight to take two steps. Internally I feel I should be able to run, maybe soon? (8-)

Caroline
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Meg (---.188.228.34.euc.wi.charter.com)
Date:   01-04-03 06:39

Hi Caroline,

It's good to hear you are feeling more energetic. Fatigue is so misunderstood and disrespected as a symptom that I never mentioned it to my doctor. And the onset was gradual enough to allow me to deny that it was a part of my health problem. After all, who isn't tired these days? And isn't it normal to be tired at the end of the work day when you're 56? Doesn't everyone sleep all weekend to gear up for the work week? Now, I know the answer is no!

My aches and pains were/are transient enough to ignore. I had talked myself into accepting that this too was part of the aging process. The skin eruptions were labeled rosecea and they did respond to tetracycline. Now we know why. My leg cramps were dismissed with a prescription for quinine. The nodules on CT scan did not impress pulmonology. I could go on but you get the idea. I believe that diagnosing this disease in the early stages is a rarity.

The one symptom I and the docs couldn't ignore was a gradually atrophying left foot and lower leg muscles due to tibial neuropathy. The solution? Come back in six months. Translation: we have no idea but since you can still walk we'll wait and see.

Thank god for the internet and Trevor. I didn't nap at all yesterday and I'm looking forward to the resolution of my 'jello' legs. Of course, all these symptoms are subjective and I am sensitive to suggestions by family/friends that I might have been/be imagining them. The D-levels are my proof and I dream of the day I can show my neurologist a normal left foot.

I hope that your improved condition will give you the confidence to insist that your doctor prescibe the Benicar. Don't you feel like a pioneer?

Be well,

Meg
 
 Re: Things to remember when using Minocin
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-20-03 09:18

I have updated the description in my message at the top of this thread (message #2).
Take a look at the new info.

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Bastiana (---.olympus.planet.nl)
Date:   01-21-03 04:09

Dear all,

After my pulmanory posponed the appointment, because she did'nt find time to read the articles, I went to my primary for crisis concult. The thing that impressed him most probably was that I didn't want to loose another 50% of my hearing just because of a lazy system. So, he described minocycline! And willing to cope with crisis!
Yesterday evening I took my first pil 50 mg. I had my first quite night dreaming of food! I started to breath really deeply. Things were happening all over, intensily, but I could hardly describe them. Exept that this is going deep, very DEEP in my whole system. The uncertainty of the going abouts in my body as before vanished, as it seemed as if the inflammation part, was quitened down.
Today I feel the throat tighteting extremely, and the whole of the spine is like hard rubber, slightly painfull. I could also say as if elastic bandages were tigheted up on the whole of my body, pressing. Is this a herxheimer??

So much happening by one little 50 mg pill? Am I imagining all this?

Regards Bastiana
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-21-03 05:54

Yes, Bastiana,
That sure sounds like Herxheimer. You have started on the road to recovery.

The tight throat is very common sign of high levels of 1,25-D from herxheimer. Be careful of it - two folks had to go to the Emergency Room to get extra oxygen because of the tight throat. Also please be careful of cardiac arrythmias.

These are the reasons I recommend starting Benicar ARB first. But you did the right thing for your circumstances. Now let's see what happens over the next few weeks (unfortunately, the herx can last that long...)

..Trevor..
ps: Now you understand why some people think they are "allergic" to Minocin.
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Rick MacKinzie (---.snvacaid.covad.net)
Date:   01-21-03 16:20

Hi There,

My name is Rick and I am a 58 years old w/m, in excellent health other than having sarcoid . . . I have had a flu like sickness, especially fatigue for 3.5 months, treated 3x with antibiotics and nothing has worked, at least that I can tell. Now they will be doing a cat-scan with an injection in the veins to track the areas more clearly. I think we all know that they will say that I have sarcoid. And then want to put me on steroids, which I have already said no to . . .

So, I am wondering if there is any validity to treatment with vitamins, minerals and herbs as presented at www.gethealthyagain.com/sarcoidosis.html
If so, what works?

Thanks for the assistance.

Rick MacKinzie
Napa, California
 
 Re: Things to remember when using Minocin
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-21-03 16:42

Rick,
What antibiotics were you treated with, and at what dosage?

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-21-03 17:09

Rick,

The person who wrote the information at the site you mentioned told you what he does: he has "marketed nutritional supplements for years." He truthfully reported that it is unlawful "to sell supplements and say that they treat, prevent or in any way are used to cure a disease."

When it comes to deciding what treatments to use for sarcoidosis, you must use your own common sense on "nutritional therapies," just as you do with any treatment offered by medical practioners. Where is the documentation of the claims being made? The author here did not give you any documentation for the jumbled "compilation" of medical information that supposedly relates to sarcoidosis. Not one footnote or reference.

I suggest you dig a little deeper. For instance, you said you were treated with antibiotics 3X. Did you check to see what antibiotics you were on and whether they are effective on the types of microbes that have been found in sarcoid patients?

Belinda
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Bastiana (---.olympus.planet.nl)
Date:   01-23-03 04:54

Dear all,

Yesterday I took my second little pill of 50mg minocycline.
It works, it works thoroughly. I did not know me being that ill. It is as if every cell in my body is turned over. Burning feeling.

What I do wonder about, is how you folks all cope with 'normal life' ?
I actually am not able to do smallest things. If you put me in a corner, I would just start to sleep.

And then to consider my very low dose...some of you take double...do you all sleep that much? Not really able to run a normal day??

I comfort myself by saying: you have never been lazy, you used to do so much always. But still I have to cope also with inner uncertainty really.

Trevor, if you say, the herx lasts for weeks, how many weeks do you mean really? Two, three, four?

Bastiana
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-23-03 05:05

Bastiana,
In my case I had no Minocin herx beyond about day 3.

But Sulfa/Trimeth keeps finding new bugs to kill all the time. Small episodes of herx occur as I intermittently check to see whether any new bugs have been exposed to the blood stream.

All my herx has been minor because both my 1,25-D and 25-D were already under control when I started on the antibiotics. My 1,25-D was 23 pg/ml before I started, so it could have surged a lot with minimal symptoms.

The Clarithromycin gave me the wierdest herx. The first day I walked around in some sort of narcotic dizzyness. Still was able to function OK, but it was obviously doing something pretty profound. After day 1 I have had no more herx with that, even when I periodically check with a "top-up" treatment.

The bugs are exposed to the blood stream incrementally. Not all are exposed at once. that is why the herx may last longer than a day or two. Only the folks with the worst infection seem to last longer than a week, though. In your case it seems as though the Minocin will continue to have a beneficial effect out to about 90 days (I am guessing). Most of the severe herx is the first few days.

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Bastiana (---.olympus.planet.nl)
Date:   01-23-03 06:36

Trevor!

Thanks god, this doesn't last for several weeks, I thought you mentioned this before...ONE week like this is enough, actually. I could cope with a minor effect, but the reactions now are severe. I am really curious for next week.
Do you know that my stupid belly bubble has already disappeared? It looks as if I have 'muscles' again in that area...isn't that strange? Also my breathing is so much deeper. I suddenly went to constipation after having diarrhea for, my God, certainly 1 1/2 year in episodes, then constantly last few months...

I think sarc-patients are museum-ripe: the magic body - life show - come and see!

Good that you mention the Clarithromycin. I think (but you better confirm this) that those involved with 'real' neuro-sarc, like you and Jane, seem to react on that. The most extreme reaction came from my spine, after the first minocin. That's where, for me the process of sarc also started (25 years ago), in my sensation. The spine getting strangly stiff and stiffer...

Well, I''ll try to hang on.
Thanks for your answer again, comforting me.

Bastiana
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-23-03 07:03

Bastiana,
Yes, the wierd effects with Clarithromycin probably did indicate that the endotoxins were being released in my brain.

Minocin stopped my skin sun sensitivity. very quickly. Within a few weeks. But it was the Sulfa/Trimeth (Bactrim) (with the help of the hottub) that cleared up my eyes. And you can't put a value on that

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Kathleen (65.121.96.---)
Date:   01-23-03 16:30

Trevor -

My sunlight sabbatical is over over - I am back to work! I wasn't able to just stay indoors in the dark the entire time (there was a death in my family), but I did the best I could!

I started the Minocin 1 week ago - I started every other day, but stepped it up to once a day about 5 days ago (although I skipped today, my first day back at work). The herxheimer effects I had previously have been greatly reduced this time! I have had effects, but nothing like the severe cardiac effects I had before! In fact, so far, no real cardiac problems, and my shortness of breath is improved....I am clearer mentally than I have been in a long time (although I do have that narcoticy type of feel - just a sort of physical shakiness) - but otherwise, so far, so good!!!

I have my new glasses that cover my eyes better and are tinted and UV treated - my eyes felt better almost immediately (although I look like Charlie Sheen in Major League!) My new 90% restrictive sunglasses are also done.

I am still excessively fatigued - but hopefully this will improve with the momentum of going back to work (still part time for a few weeks); and I had an extreme histamine/rash/itching episode last night - but my parasthesias are resolving (they cause extreme itching).

I can now pinpoint after I take the Minocin that most of the effects are within the first few hours, and then they subside. Do you recommend I continue to take 100 mg/day or every other day, or as tolerated?

I can't tell you (of course, you know!!) the difference the ARB makes!!! I would definitely recommend having this in place prior to the Minocin; as well as the vitamin D reduction; I envisioned these as separate parts, but they are not - one isn't very helpful without the other!!!

Thanks!! Now I need to catch up on all the new information and discussion from my absence....

Kathy in Wyoming
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-23-03 18:30

Kathy,
It is great that the Benicar is helping you get through the herxheimer. I would actually suggest 100mg qod, as the rest day seems to give a useful "bounce back". These bugs reproduce very slowly, and there is little risk of developing resistance because of the off-day. Your reaction may be different, see how you feel on and after the off days. I always found the symptoms were also worse on the off day. But you have plenty of active bacteria, and your symptoms peak in a few hours, so you may be better qd.

I am glad you can see that all 3 parts of the therapy have to be put in place to make things rapid and successful. I would also add that the antibiotic therapy does not work until the patient is weaned from prednisone (which was not a factor in your case, but it is important for some folks)

Also, the sunlight sensitivity and the bright-light sensitivities both can be fixed by antibiotics, but they may need a different antibiotic than the Minocin. You might be interested to read this article about CWD bacteria in the eye causing uveitis.

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   01-23-03 18:35

Hi Kathy,

Welcome back. I've missed you and wondered how you were doing. It sounds like your 2 weeks in the 'dark' on Benicar and Minocin were a success.

I'm glad your new glasses help. Are they both prescription and infrared blocking? What do you mean by 90% restrictive sunglasses? I feel a bit conspicuous too but only a few people ask about them and they assume I've had eye surgery. I have a variety of answers I use depending on the circumstances.

I suspect your continued fatigue is a lingering Herxheimers. You might want to go a little easier on yourself and take it only every other day. I thought of taking mine every day too because I am the impatient sort. But I realized that, although the obvious Herxheimer usually dissipated in a day, I didn't feel better until about 40 hrs after each dose.

Congratulations on your improving health. It's good to have your enthusiatic input here once again.

Meg
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Caroline (204.184.54.---)
Date:   01-23-03 20:16

Trevor,

I have a question regarding uveitis. "CWD bacteria in the eye causing uveitis". Are the oral antibiotics, (minocin, etc.) enough to combat uveitis? I continue to have occasional but regular blurry vision and floaters. Is there a antibacterial drop that would help? The computer screen raises my awareness of the condition of my eyes. The longer I read, the worse the blurryness. Now that I have my Noir glasses I always use them at the computer. Any suggestions?

Caroline
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-23-03 20:47

Caroline.
I used Minocin qod for about 3 months. Then I started to 'experiment' with other antibiotics and therapies. After about another month my eyes suddenly 'went dark'. OK, the world went dark, as my eyes lost their hypersensitivity. I started to fall over things in the house, and had to wear a lighter pair of lenses. It was at the end of a 3 day course of Bactrim DS, with hottub enhancement to 99 degrees or so. I was not aware of anything happening until my eyes suddenly dropped back to 'normal' sensitivity.

I continue to be amazed at the way that different patches of bugs seem to be exposed to the antibiotics. I judge this to be so, because eveything is intermittent. I might have a mild herx this week from the same therapy that gave me no herx the week before, and so on.

I still have partial deafness and numbness and very faint tinnitus in my left ear (the one injured by a fragment of an anti-tank grenade about 30 years ago). But it gets better every month. In steps. The last step was 2 weeks ago, again during a 3 day Bactrim therapy. I have no doubt it will eventually come back to normal, based on the continuing trend.

Whereas my eyes changed very rapidly (and both at once) my ears have changed in more noticeable steps. Both need to have antibiotic penetrate into their inner regions, and that is asking a lot from any antibiotic. So it will probably take a while for your eyes to get rid of the bacteria, you will just have to plug away at it.

Meanwhile the Benicar should prevent any further uveitis or retinopathy.

I have no experience with the IV antibiotics. I am not sure that they would be any more effective against this type of bug. But this is what we still have to learn...

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Steve (---.server.ntl.com)
Date:   01-24-03 06:10

Hello Trevor

You may recall suggesting the non use of steriod eye drops a couple of weeks ago to me. I thought I'd just keep everyone up to date as I have just come back today from two appointments at my hospital having seen the dermatologist & the Eye specialist. Unfortunately the eye specialist wanted to give me further drops of the steriod variety due to my current re-occuring iritis, he wouldn't listen to your alternative suggestions as he'd never heard of any developments.

I took along a hefty but well vetted amount of literature thanks to sarcinfo, not wanting to bog them down too much all at once. I was a little apprehensive being in the UK and knowing I could be shown the door with my new found non BMA knowledge, but to my surprise a Dr Lyon (the dermatologist) who resides in York and has a clinic in Scarborough periodically was quite encouraged by the detailed documents I'd printed out and even said "this is the kind of thing we need" and as if by coincidence was going to suggest a course of minocin anyway in preference to the usual prednisone which I'd stating I wasn't interested in. He has taken the literature and is preparing another appointment in the next week or so to do the VitD blood test along with a precautionary check on the state of my liver. He seems quiet happy to "try" a course of minocin as soon as the results are through. I was dreading this appointment thinking they would dismiss all your suggestions and send me away sulking, but unless I'm mistaken I think the new findings are filtering through, although not to everyone it would seem.

Thanks again and I'll keep you all informed of my "progress".
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   01-24-03 06:27

Steve,

Congratulations on finding an open-minded doctor. This should encourage everyone else who is hesitant to show this material to their physician for fear of rejection. You just never know who will be the one to say "yes, I'll help you with this".

Meg
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Steve (---.server.ntl.com)
Date:   01-24-03 06:49

Meg

Quite true, that's one thing I've learnt from other suggestions here on sarcinfo. I went with a positive attitude (rare for me), and got a result. Time will tell how I get on, but as I'm sure others will confirm, you start feeling better as soon as something positive happens.

So! yes, everyone out there get it done, print out those papers and hand them in next time you go to your doctor/specialist, and the message WILL get through.

All the best

Steve
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Margo (---.adsl.duke.edu)
Date:   01-24-03 09:56

I'd like to add to the comments regarding sarcoid-associated uveitis and CWD bacteria.
It is well known that uveitis can be caused by bacterial infection. Many uveitis cases that were once called "idiopathic" now have identified causes. When the cause is some lingering infection (such as Lyme disease or cat scratch fever), the uveitis clears up when the infection is treated.
(For general information on uveitis, see www.uveitis.org.)
For my family, we hope the sarc-associated uveitis clears up with the right anti-biotics.

Margo
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-24-03 10:05

Margo, you have my best wishes (and expectation) that the sarc also clears up with the correct antibiotics.

..Trevor..
Remember that MTX and prednisone supress the immune system and will therefore block the effectiveness of antibiotics
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Margo (---.adsl.duke.edu)
Date:   01-24-03 10:52

Trevor,
Thanks for your best wishes.
Are prednisone and methotrexate expected to effect the action of the ARBs? To control the Herxheimer, we are planning to begin the ARBs first. Then, if we see good results, we should at least have no prednisone in the picture. (The doctor is very anxious to end all steroid use, and is planning to taper the steroids in any case.)

The uveitis is detected by the presence of immune system cells and precipitates (KPs) in a slit-lamp exam. Do you know if the ARBs will decrease their presence? The eye doctor would more readily support stopping the methotrexate if the eyes were looking good.

It is tremendously worrisome to take this into my own hands, and stop the methotrexate. (For those who don't appreciate the dilemma, it is not treatment for myself that I am deciding about, but for a child.) Trevor, I have read your comments on methotrexate elsewhere in this site. We began these treatments when they were the best we could find, when we had a child in tremendous pain from eye inflammation, whose vision was beginning to be affected. Since sarcoidosis is so rarely diagnosed in children, the doctors were hesitant to make that diagnosis. They were mostly puzzled since our daughter didn't present like cases of JRA-associated uveitis.

There is a positive study of remission or cure of sarcoid-related uveitis with methotrexate therapy, in this paper by Samson and Waheed, et al: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11382642&dopt=Abstract Unfortunately, only 10 patients with sarcoid-associated uveitis were in the study. However, all ten had remission of the uveitis.

Margo
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-24-03 11:38

Margo,
Yes, A difficult dilemma. My statement regarding Prednisone and Methotrexate blocking antibiotic therapy is based on the biochemistry, and on published reports in Lyme disease (see the SarcInfo thread here)

I looked at the reference you mentioned which is here on PubMed.

You will note that the study specifically excluded patients with infectious causation. I am not sure how they did that selection. I doubt that your daughter's illness is non-infectious, based on the high D-Ratio she exhibits. I interpret that as widespread inflammation, powerful inflammation that, according to me, Dr Moller and Dr DuBois (et al), can only come from a bacterial source.

The problem with evaluating studies of these "last ditch" drugs is that the doctors often have different expectation for their patients than a 'full recovery'. You will note they say no "mortaility" was associated with the drug use. That means nobody died. I would hope so. There should be no thought in their minds of such a thing. Phrases like this make me wary of their ability to assess 'success'.

'Remisson' is a subjective thing. In your case, your goal is not to achieve 'remission' for a few months, it is to achieve a 'cure'. It serves no purpose to only try and reduce damage in the short term, you are interested in the long-term. The doctors in the study you cited, in my opinion, were happy to see short term improvements. And small short-term improvements at that. Only 90% of the patients benefited from the therapy. There was no control group, and it is impossible to tell how many would have relapsed without any therapy at all. Also, a "retrospective" study involves looking back through past records and seeing what the attending doctors wrote about the case. This is very subjective, and, all-in-all, an unreliable study, in my opinion. But I am biased, as I see no biochemical basis for the prescription of either prednisone or methotrexate in ocular inflammatory disease, especially now we know (some-of-us know) there is a bacterial pathogenesis. Steroids are known to cause cataracts.

There are no reports of ARBs interacting with prednisone or methotrexate. You should be able to get a good blockade in place and then reduce those drugs.

The problem is that a good blockade is going to be hard to achieve with Avapro, the only ARB tested by the FDA in kids. In adults we use 150mg every 8 hours of Avapro, and it was only partly effective by comparison with Benicar at 40mg every 8 hours,

Take a look at
"Angiotensin II and vascular endothelial growth factor in the vitreous fluid of patients with proliferative diabetic retinopathy", and "The angiotensin II receptor antagonist candesartan cilexetil (TCV-116) ameliorates retinal disorders in rats". This tells us what we are trying to reverse, because there is no doubt that Angiotensin II is highly pro-inflammatory.

The main problem is that Internists know all about Angiotensin, and Opthalmologists know all about steroids and methotrexate. I hope you can find somebody who appreciates both disciplines. The other problem is that most internists have considerable experience with ACE Inhibitors, and have not yet come to appreciate the benefits of Angiotensin Receptor Blockade.

Well there we are, Margo. I am sorry that I speak mainly of problems, but I think you need to know all the issues, and anticipate what you will come up against. Hopefully you can get your daughter onto Avapro (at about 0.8mg per pound of body weight every 8 hours). Then the improvement should become noticeable within weeks. It will be more quickly noticeable if the doctor is expecting an improvement, of course.

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: E (---.brndml01.va.comcast.net)
Date:   01-24-03 16:38

Trevor, Meg, Belinda -
Can you please tell me what you know of the side effects of Plaquenil, temporary and permanent - I don't know much about this drug. Also, I searched through all the thread topics and didn't find it named in any of them - which thread(s) discuss plaquenil? What do I need to know about this drug? I know Trevor referred to it having an adverse effect on the eyes in my previous post. Why is it "superior" (according to docs) to the minocin / ARB therapy? Thank you.
~E
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-24-03 17:13

E, Plaquenil is hydroxychloroquine, a drug that is used to fight malaria. It is sometimes useful against sarc microbes. Somewhere under 10% of the time, reportedly.

At the dosage given to sarc patients it can cause loss of eyesight, and the FDA recommends frequent checking of a patient's eyes while they are on Plaquenil.

As for why doctors might think it is superior - you would have to ask them, I am afraid.

I think you will find that most will not even admit to it being an antimicrobial - according to pulmonology folklore it is supposed to have some (unidentified) magic compound in it that suppresses the immune system.

Poppycock! I took low doses in 1974 when I was teaching in Papua New Guinea, and it never modulated my immune system, or the immune systems of the hundreds of thousands of folks there that were also taking it as prophylaxis against malaria.

Now don't get me wrong - any antimicrobial/antibiotic that has has some effect in Sarc is worth trying - it is just that I would try some of the less drastic antibiotics first. I consider them to be much safer. You will note that the FDA gives the same advice - try other drugs first...

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Kathleen (65.121.96.---)
Date:   01-24-03 18:09

Meg -

Definitely good to be back - and I'm feeling pretty darn good! I am like you, an "inpatient" sort (to put it nicely) - so I will take your advice and go every other day for a while. I am having just a teeny bit of cardiac discomfort, but today was a take-it day. My every day glasses (bifocal, actually) are tinted, with full UV protection; the frames cover and protect me eyes as much as possible. Not pretty, but they sure feel good! My sunglasses are also prescription (but not bifocal); I assume the 90% means that 90% of all light is filtered out. My optometrist was very interested in Trevor's information, and making my glasses work as well as possible!

Bastiana - I know exactly how you feel with the Herxheimer - you just feel worse, and it feels really awful - and it is difficult to imagine this is helping you - but hang in there! Mine lasted a few weeks, until I stopped the Minocin and started the Benicar/ARB (as Trevor advised in the first place!) After a few weeks of just the Benicar, and no sunlight, I added the Minocin again, and the effects are minimal this time.

Trevor - thanks for the information about the eyes! I will keep that in mind - unfortunately, most of my life, I have not worn sunglasses at all - certainly contributing to any difficulties I have now! I do have a question about sunlight - is there a difference between direct and indirect sunlight? Obviously, I know direct is bad...but what about being in a room with curtains open; or I work in a glass-ceiling (although UV coated) atrium. I can avoid direct sunlight, but not indirect...

Thanks for your help!!!

Kathy in Wyoming (altitude 7,200 making sun exposure more intense!)
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-24-03 19:10

Kathy,

Production of vitamin D in humans is a sort of photosynthesis: light on our skin and eyes causes us to produce vitamin D from cholesterol.

If you look around the room and there is enought light for a plant to grow (another type of photosynthesis), then your body could manufacture vitamin D there.

Belinda
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   01-24-03 19:46

Hi Kathy,

It's a bit of a dilemna avoiding those rays, isn't it? I really noticed a difference when I acquired my NoIR sunglasses that shield the infrared rays as well as the UVs which my old ones did not. I'd love to eventually get prescription glasses that offer infrared protection too but I'm waiting until my D-level comes down and presumably my eyes won't be as sensitive so maybe the glasses can be light enough that my eyes can be seen. Was your regular optometrist able to provide you with the infrared protection? I'm thinking that for outside I will always need some side protection so I can just pop the lighter NoIR over the protected prescription glasses.

It's too bad about your work environment. It sounds a bit too bright. Can you relocate? I traded my prized desk by the window for the previously scorned but now appreciated darker corner cubicle. I have to keep my cherished car sunroof closed too! But it's all worth it, isn't it?

I'm glad you are taking it a little slower with the Minocin. Life might be a little easier.

Meg
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-25-03 07:03

Kathy (and all)
There is a lot of variation between sarc patients in their skin and eye sensitivities. It all depends on how widely the microbial infections have spread, and the species that you have accumulated.

However, it is wise to assume you, too, may be badly affected, and shield your eyes with the NoIR lenses for a week or so, until you can get an idea of what happens to your moods when your eyes are challenged. For it is the eyes' action on the brain that is most important - the migraines, the irritability, and even worse, the neuroses - can all be brought on merely by exposing your eyes to normal light. Even the glare of headlights when driving. It is not until after you have experienced withdrawal that you are in a position to notice the problems when they come back.

UV absorption is a worthless statistic. Forget it. It was the visible and infra-red that used to get me...

Ordinary lenses are no real protection, please don't even bother with them. If you need prescription lenses, then get the 901 series NoIR and add them over the top of your prescription glasses until you can learn to sense the sensations which mean that trouble is just around the corner...

Trevor
ps: International folks can get a lesser degree of protection from "Ray-ban" Aviator style with the G-15 glass lens L2846 or L2821. These are nowhere as good as the NoIR lenses, and are far too bright, but they are better than all the plastic lens alternatives. You will need to get the Ray-ban leather side-shields, or fashion your own
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Kathleen (65.121.96.---)
Date:   01-25-03 18:34

Meg - thanks for your suggestions! (I really did mean impatient!) I am in kind of a catch-22 - I was put in our sun-filled Atrium as a reception and information person - the easiest job in my hospital! So, in order to move, I need to be well enough to be relied upon in a regular schedule, with sound judgement and coping abilities, along with physical abililty to handle full shifts with much stress! Until I can clearly do that, there is really no where else for me to go...they have been so good to me to keep me employed - I haven't been full time for a couple of years now, but they are giving me my fulltime benefits...very generous and kind employer!!! They do understand my predicament, and also very much want me to be well, so they are okay with protective covering, as long as it is professional looking....and I generally work evenings, so I never get direct sun....

I'll keep trying!!!

Thanks, Kathy
 
 Re: Things to remember when using Minocin
Author: Denise Testa (---.connect.com.au)
Date:   02-17-03 21:05

I managed to get a script for minocycline. Once on it for how long does one take it for? In one of the papers it said to be reviewed on a case by case basis.

It wasn't easy getting the right stuff. It took negotiation, fights with a computer that wouldn't allowed the script to come out 100 mg bd. Got round this by doing what computer wanted to do. I ended up with doxycycline, which I took back. Had to ring doc to get minocycline again, then chemist didn't have it in stock. So when I do get it, for what period of time should I take it, bearing in mind that I will probably have only a week or two's supply anyway. D. Ratio was almost at remission values when I had it done, but we have had an extremely hot, dry summer in Australia and I have had a flare of symptoms. I actually see my immunologist tomorrow but I found him to be unreceptive to this therapy. He's a plaquenil, prednisone fan. I ain't taking no prednisone no more. Hate the stuff.

Denise
 
 Re: Things to remember when using Minocin
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   02-18-03 05:34

Hi Denise,

I'm sorry you had so much trouble getting the minocycline. Trevor has written a new tutorial for physicians called Minocin Dosage Issues. It's at the top of the page. Also read the topic Things To Remember When Taking Minocin.

Generally, you should start out slow with the Minocycline. If your D-ratio is fairly low, then I think you could tolerate 100mg the first time without fear of a drastic Herxheimer reaction. Take 100mg every other day until your Herxheimer reaction isn't very strong, then increase to 200mg every other day.

If you are not already taking a ARB your tissues may be too inflamed to allow the antibiotic to penetrate. In this case you would not feel much of a Herxheimer reaction. Mincocycline or any of the other antibiotics are taken as long as you feel they are doing some good. This may take months or even years as the inflamed tissues heal and more microbes are exposed to be killed by the next dose of antibiotic.

Good luck with the doctor visit tomorrow.

Meg
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Denise Testa (---.connect.com.au)
Date:   02-18-03 20:41

Thanks for clearing that up. I thought it was every second day and not twice a day. There was a bit of confusion over this I think because the computer wouldn't allow it to be administered this way. The chemist insisted it was twice daily, though I showed him the literature from the site including the dosage thing. Eventually after a phone call from the doc, the doctor said that I would know how to take it. It has on it to be taken twice a day.


With thanks for clearing the confusion.
Denise
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Eileen (---.client.attbi.com)
Date:   02-19-03 04:35

Trevor,
Well after my second dose of Minocin yesterday, I got back the deep pain within my right lung that I haven't experienced in a year. Yeah! This time around, I can tolerate it much better due to knowing what is going on.
I also got the weirdest pain sensation behind my right leg. (back of knee region that radiates upward) I remember getting those a year ago too, wonder what the heck that is?
Anyway, I keep reading about this Benicar. Should I be taking that at all? The Herx I can handle fine on my own, but does the Benicar help in any way other than for reducing the Herx symptoms? For if it would make me heal any faster, than heck, I am for it!
Also, I noticed on my prescription bottle that it is a generic brand that says it is by Tevau. Who in the world is that? What brand do I need to get it from that has the most benefits?
Also, how often should I get my blood checked for my D levels, and Ace? (which I have never gotten done)
When can I up my prescription to 200 mg qod? When it is qod, do you always skip weekends? My bottle says M-W-F to take the Minocin, but I was wondering about taking it every other day without skipping a couple.
Thanks Trevor
Eileen
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-19-03 04:54

Eileen,
About the generic minocycline brands, read message #2 above.

In order for the antibiotics to really start killing the bugs, the inflamed tissue where they hide has to be quenched. That is why it is so important to get your D-metabolites down, as the inflammation is fed by the D-metabolites. Yes, it is worth getting them measured. Most definitely. At least every 3 months or so.

Benicar is an Angiotensin Receptor Blocker. It blocks a critical part of the inflammatory cycle, and can cut the concentrations of 1,25-D in half. It not only helps to reduce inflammation and expose more bugs to the antibiotic, it also reduces the symptoms you get from the high levels of 1,25-D that the endotoxin is generating.

I would talk to doc (but probably not Dr Mercola) about moving to 200mg to see what happens. Generally, the herxheimer can be a lot worse than you are experiencing, and most folks tend to be impatient. Especially after they start to realize that they are feeling WELL again.

It is very important to have the rest days in-between the Minocin doses. They allow the 1,25-D to leach from the tissues and expose more bugs. Brown's MWF routine is actually quite clever, becuase it gives you one 3 day break, and that is when you most want to have fun, over the weekend. But Dr Brown was dealing with patients that got less herx than sarc patients, and the herx during these off days can sometimes be worse than during the dosing days. It all depends. Obviously, the herx all disappears as the bugs are killed off. It may take months, even years if you are as sick as I was, but you feel each incremental boost, and at some point, well before ALL the bugs are gone, you start to begin really enjoying life...

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Eileen (---.client.attbi.com)
Date:   02-19-03 05:04

My D ratios were 33/23 so should I go on Benicar? Or try the 200 mg qod instead?
Sorry, I am a bit confused if I need to take the Benicar or not. If I do, do I need to stop the Minocin first? If yes, how long do I stop it before the Benicar begins?
Today, the pain in my right lung is very slight, nothing like it was yesterday during the dosing. I am doing mine on Sun=Tues=Thurs. I started it on Sunday with my hubby being home just in case anything bad happened that I needed help.
Thanks
Eileen
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-19-03 05:09

Your D is under control so you may not get a lot of herx. You can stay on the 100mg Minocin as you are or talk with doc about trying out an increase if you want quicker (and more widespread) bug killing. Benicar and Minocin have two totally seperate actions, take a look at my last message. Benicar does assist the Minocin, but they shouldn't interact too much.

Especially starting from your good D levels.

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Eileen (---.client.attbi.com)
Date:   02-19-03 05:11

Thanks again Trevor
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Jan Lewis (---.lgeenergy.com)
Date:   02-19-03 08:13

Trevor, when I went last night to pick up my Minocin renewal, the pharmacy gave me a generic (Minocycline). I didn't notice it until I arrived home. I phoned and they said my insurance company did an "intervention" and phoned my dr. and asked if generic was ok. Remember I had to plead with an Alternative healthcare physician who is nearly 78 years old to write this for me the first time. So, he probably doesn't remember what we discussed as he wasn't keen on writing it anyway. Rather than fight all of this, I'm thinking about just taking this for a month and then going to the other physician who said he'd help me as much as he could and get a renewal for the Lederle Minocin, which I'll need to do anyway since this prescription was only for 1 refill.

I really am not experiencing any herx now that I've adjusted to the Benicar. My side is still really sensitive, but does seem somewhat better (holding my breath here!). I may take Bactrim for the remainder of the month since I have plenty of that prescription and then do the Minocycline next.

I'll let you know how it goes.

Jan Lewis
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-19-03 08:22

Jan,
I think you would be best to try the 200mg Minocin dosage for two or three days first (I am assuming Doc wrote you up for 100mg bid, which is the usual, and that thefore you are approved at that dosage). This dosage doesn't seem to be so sensitive to whether you use the generic or not.

In my experience Minocycline is much more effective than any other antibiotic against the CWD forms. Try it and let us know what you think.

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-04-03 12:50

This thread had dropped into "older messages". So I thought it was time to bring it to everybody's attention again

..trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: stephen (12.111.2.---)
Date:   04-21-03 13:05

hi.

i was just diagnosed through a biopsy with either Sarcoidosis, or some harsh form of Rosacea. ...about a year ago i was bitten by a tick. then went on antibiotics ater i got really sick 2 weeks later. all was fine til August when i got a rash on my face....which i still have. all lyme (and tick associated diseases) tests came back negative....
after researching i am pretty convinced that it's bacteria related, if not Lyme related sarcoidosis....

so anyway. my question is:
i just started Minocycline. (100mg 2 times/day) and the 2nd day into it i got a pain in my neck...then the next day (today) it's hard to swallow (due to the neck pain)... feels like maybe in the area of my thyroid or something. i stopped the drug last night, at least until this pain goes away.....do you think this is this a Herx?
i have been on a lot of antibiotics since last spring, but none have really had a significant herx. seems strange after 2 minocycline pills i'd have this.
hmmm.

just wondering...

thanks!
stephen
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   04-21-03 15:52

Stephen,

If you spend some time reading the posts on this website, you will find that your reaction after 2 minocycline pills isn't strange at all for someone with sarcoidosis. Many of us are only able to tolerate 50 mg of minocycline every other day, and most of us begin with only 100 mg every other day if we have our vitamin Ds down to manageable levels and angiotensin receptor blockers in place to help us deal with the Herxheimer response.

Stiffness in the neck, tightness in the throat and increasing difficulty swallowing are Herxheimer responses that sarcoidosis patients have reported. These can get problematic if they should temporarily interfere with breathing (or even if you begin to feel anxious that they will.) My guess is that you will have to cut the dose down and work to increase it as you can tolerate the Herxheimer. The Herxhimer response is discussed in this thread, "The Herxheimer Flare- worse symptoms as bugs die. You need to understand that the Herxheimer is a temporary worsening of symptoms with antibiotic therapy. It's a good idea to keep someone at your side when you take the antibiotics and for a few hours afterward - as you see what you can tolerate and what effects you manifest.

Your doctor probably would have told you this if he/she had understood how sarcoidosis patients react to antibiotics (though Herx is well documented in other diseases. The reason other antibiotics didn't affect you this way is because specific antibiotic treatment provokes an inflammatory response. It's a good sign you have the right medicine.

Belinda
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-21-03 16:09

Stephen,
There is a lot of difference between various "antibiotics".

Only Minocycline and Doxycycline have the ability to kill the CWD bacteria that cause sarcoidosis, so only these two drugs will cause the bugs to die, releasing endotoxin, and only they will give you herxheimer.

..Trevor..
ps: Cut the dosage back though, your tissues need time between doses so that they can recover and expose more bugs. There is a paper, top right on this page, explaining dosing issues.
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: stephen (---.nycmny1.elnk.dsl.genuity.)
Date:   04-21-03 18:36

trevor and belinda,

thanks for the info!
i was starting to think the drugs casued some weird bad reaction to something in my neck. something other than a herx.

as for my doctor...while he is great to have given me minocycline for this, i think he is thinking it's rosacea....so he wasn't really expecting me to have a herx.....he did say to cut down to 100mg /day if i cant handle 200.
perhaps this is proof that it's not just granulomatous rosacea?

i have been on high doses of Doxycycline before with minimal herx or side effects. i am amazed how different Minocycline is...then again....that was last fall, so maybe the infection has gotten worse since then....

i will wait til this neck thing subsides a bit before starting up Minocycine again though. then just 100mg/every other day.

thanks so much for the very-quick help!

-stephen
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Catherine (---.rev.o1.com)
Date:   04-25-03 10:06

I just started the Minocin on Wednesday this week. I will take the second dose today. I am really glad that my family doctor was willing to give me the prescription. I had some minor herx symptoms which I know is good. From reading this again , I notice the second dosage can be a bit stronger herx but since I know it is a good thing, I'm prepared!!!!! I am really hopeful and anticipate that it will help me over the next 3 months since that seems to be the length of time Trevor indicated . Thanks everyone for all of the information, the encouragement, the support and understanding.
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Jack (---.nrockv01.md.comcast.net)
Date:   04-26-03 08:00

Hi Trevor,
A few weeks ago my lab test results were, D 1.25Dlhydroxy : 111.2 and 25 Hydroxy : 29.7. This week I met with my doctor and he gave me prescription for Minocyline. He was not sure how to prescribe, after he read your paper, he suggest the following dosages.: 50mg for 12 days and 100 mg for 100 days. Shall I take them every day? Also I remember reading in one of the sites about you recommending to start with Benicar ARB. Is that something I should look into? My involment of Sarcoidosis have been with lungs and skin I do not have any other symptoms. When I finish my Minocyline treatment will I be able to see any improvement?
Thank you,
Jack
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-26-03 08:19

Jack,
You can work on getting that 25-D level down a bit by figuring out where the D in your diet/medications is coming from. But it sure sounds like you have a sensible Doc. Great news!

The ARBs cut down the 1,25-D level by blocking the inflammatory biochemistry. When you take the antibiotic your sarc will probably flare in a herxheimer reaction while the bugs die. You can either reduce the antibiotic dosage, killing bugs at a slower rate, or add ARB therapy so that you can tolerate more endotoxin and recover more quickly.

You will find it amazing where all these bugs are coming from - they have burrowed deep into the inflamed tissue (and muscle) over the years and it can take a long time to fully get rid of them. Luckily, you should notice an immediate improvement within a month or two - its just that at the lower doses it takes so darn long for all the herx to go away - for all the bugs to be killed off.

It is important to only take the minocycline every other day. You need that 'rest' day for the tissues to quench. Be careful when you start taking it - the initial herxheimer reaction can be dramatic. As the level of herx fluctuates you can work with Doc to lower or increase your dose to whatever you can tolerate, up to a maximum of 200mg every other day.

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Kirk (---.ph.ph.cox.net)
Date:   04-26-03 18:04

Hi,

Well, started the Minocycline therapy this last Monday. I have been hesitant to do son after reading the messages, but decided to bite the bullet and give it a go. The first 2 doses didn't give me much of a reaction other than my joints aching some. Then last evening I really had swollen knees again and a lot of congestion. Today I was rather a mess. I have tried to work some this week and today was very difficult. I am having a difficult time breathing and my joints are really bad. I took oxygen with me but the tank ran out so had to leave work early and come home to hook up to the concentrator. Guess the bugs are biting the dust! I hope I don't feel this miserable for too long and that I soon get some improvement. At least I don't work anymore since I'm on disability now and only did so today mostly as a favor. (I do enjoy it though) After having sarc since probably the 60's, I'm sure there are many bugs left to die!

Kirk
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-26-03 18:16

Kirk,
Cut down the dose until the herx is bearable. You can throw away half of a minocycline capsule contents, if you are careful. You will feel incrementally better as the bugs keep dying, but the herx can make you miserable for months and months. It takes a long time to perfuse all the muscles and all the tissue.

Stop taking the Mincycline for a week every now and then and see how much better you feel... it makes it a lot easier to understand what is happening.

ARBs will help you step up the dosage a bit. I had no herx for 4 months at 100mg minocin, but my left ear was still deaf. The moment I stepped up to 200mg Minocin(and a Bactrim DS) I had herx like never before, and my hearing has been gradually coming back to "normal" every week. But herx is a drag, even with ARBs.

My eyes and skin (and brain) fixed at the low dose, however, without herx, so I always suggest folks cut back the dosage to what does not cramp their lifestyle.

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   04-26-03 20:05

Hi Catherine,

I'm glad you're experiencing Herxheimer reactions. According to Dr. Friedrich Flachsbart, MD "Jarisch-Herxheimer is in fact the maximum of evidence possible in search of occult microbes."

I just had to comment, though, on your three month expectations. I think it's reasonable to assume that you will have experienced considerable relief of symptoms by then. But, depending on how many mycobacteria you've accumulated over the years and the tissues they're hiding in, you may find that you need to continue antibiotics for many more months.

I think it's easy to underestimate the extent of the inflammation and the length of time it may take for complete resolution. Tuberculosis treatment is typically 6-9 months long and is probably a fair comparison.

I've been taking antibiotics for almost 4 months and it is a rocky, unpredictable road. I've had days in a row lately with little or no Herxheimer reaction and then been surprised with debilitating symptoms. The wonderful good days between reactions con me into thinking that this disease will leave quickly, quietly and gently. And there are days when I need to take inventory of distantly remembered symptoms in order to remind myself why I'm enduring this 'punishment'.

You're at the exciting beginning of your road to recovery. We'll be here to guide and support you with our experiences even as we continue to learn more ourselves.

Meg
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Catherine (---.rev.o1.com)
Date:   04-27-03 08:37

Well, I thought I was prepared !!! But , yesterday was really bad with the aches pains, totally debilitated and stayed in bed half of the day. I read that usually after the third day or the first week the symptoms improve so I am currently contemplating whether to reduce the dosage to 50mg. or to go with the 100mg and hope that after a few more days things will improve. I also had the constriction in the throat but since I had read about it in the past it was not scary. Somehow, I did not expect this reaction to be as severe as it is but I know it is a good thing !!!! Thank you all for being there for support.
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Tom Rogers (---.twcny.rr.com)
Date:   04-27-03 17:51

I am just curious as to whether the ARB and Minocin treatment has helped *everyone* who has tried it, or if it has failed for anyone.

Thanx,

-Tom
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Margo (---.adsl.duke.edu)
Date:   04-27-03 20:24

Tom,
I can't speak yet about the Minocin treatment, since not enough time has passed. However, the ARBs make an enormous difference in symptoms.

Margo
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Jan Lewis (---.lgeenergy.com)
Date:   04-28-03 06:30

Tom, I've been on the Minocin about 4 months or so now. Benicar 1 month less. I was diagnosed with sarc in July 2000. I never took prednisone although 2 physicians told me I should take it or face dying. I had read enough info at various Sarc websites to be pretty well convinced that prednisone was not the answer. I took a food supplement that helped me eliminate the symptoms although not the disease. In December, things had worsened (I grew very confident that I was going into remission and had nearly stopped my supplements). Anyway, it was at this time that I found a physician who would put me on the Minocin and then the Benicar. I lowered the 1,25 D blood level by half in 2 months. I had much pain in my right side (liver area) and all of that is gone. Other than wheezing, which I can't seem to get rid of, I feel ok. Other issues are not sarc related, but more due to being a secretary for 33 years (neck/back/shoulder pain). Start PT tomorrow. My last ACE test was still 98--way too high. I will have a repeat of that at end of May. Feel like if I can get that back down to normal, I'll be out of the woods. I haven't really experienced severe herx episodes. Just a few in the very beginning, and then some "yuckiness." Other than that, nothing to be concerned about. Hope this helps.

Jan Lewis
 
 Re: Things to remember using Minocin
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   04-28-03 07:19

Jan Lewis,

Don't be tto quick to attribute your shoulder/back/neck problems to being a secretary. You are probably doing a lot of the same physical activities you did as a secretary, right? Sarcoidosis can cause inflammation and symptoms in the shoulder/back/neck. The fact that these symptoms have improved with the drug therapy suggests a correlation.

I know I had shoulder/neck/back problems for years and attributed it to everything else: poor posture, getting older, etc. I used to stuggle with it daily, but with Minocin and Benicar therapy, I am 97 percent improved. My osteopathic physician taught my husband some manual stretches we do on my ribs every day to keep them in shape and monitor my progress. I still get inflammation in my ribs if I get too much sun. The inflammation is something I can feel when I do the stretches - because a few ribs become sensitive to touch.

The good news is that the constant pain I used to have in my scapula, shoulder and clavicles (collar bone) is gone, but that didn't happen until I began taking Minocin. The pain in these areas kept me from sleeping on my side for years and used to make me shun bear hugs and "cuddling." Life is much better now.

Belinda
PS. Like Wendy, I've been doing "twilight gardening" and my neck and shoulders are not bothering me, even with the manual labor!
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Jan Lewis (---.lgeenergy.com)
Date:   04-28-03 08:20

Hey, Belinda. Thanks for info, but don't misunderstand. These issues have not improved with Benicar/Minocin. In fact, I have gotten 10x's worse. I can barely lift a can of beans to the side due to extreme weakness. The Liver pain improved , but these shoulder issues have not. In fact, I told my husband last week that if they didn't get better soon, I was going to have to go out on disability or quit my job which we really can't afford for me to do. I had someone come and look at my workstation today and they made some adjustments and will order me a new chair. I do have constant pain in my scapula, shoulder and clavicles as well. I went for massage on Friday and felt like I'd been in a major car accident on Saturday. Could barely move from the pain. I'm not convinced this is sarc related. My Physical Therapist said he sees this all the time in secretaries. The muscles "shorten" causing pulling on all of these areas. He did an adjustment type thing on my shoulder and I had instant pain relief...just didn't last. Anyway, I do thank you for the response.

Jan Lewis
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   04-28-03 08:49

Jan,

Thanks for clarifying this. Of course sarcoidosis patients can have other medical problems and symptoms unrelated to sarcoidosis. I'm just glad you are getting care for your shoulder/neck/back problem, and I hope the physical therapy brings relief. Thank you for sharing this with us.

Best wishes,
Belinda
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Kirk (---.ph.ph.cox.net)
Date:   05-04-03 10:42

Hi everyone,
Been on the Minocycline treatment now for almost 2 weeks. Had to take some days off and recover. The Herx has knocked me for a loop. It does change for me over the course. I have gone from severe joint pain to sinus and chest congestion and today I'm having lots of tightness in the throat. The joint pain and congestion are markedly better today however. I have had the oxygen on almost 24 hours a day for the last 3 days because of shortness of breath. So far this morning I'm off of it and other than a horse throat and the tightness feel fairly good. I can actually take a good deep breath! This isn't an easy thing to go through, but I can sure feel it working and it's reassuring to know that something is happening.
Kirk
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Sarah (---.ath.bellsouth.net)
Date:   06-06-03 08:36

Since I am allergic to all Tetracyclines am I out of luck as to curing my Sarcoidosis? Thanks for your help with this.
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-06-03 08:43

Sarah,
If you read the info here very carefully you will find that your "allergies" to tetracyclines are (almost certainly) misdiagnosed herxheimer shock.

Herxheimer is not something the average physician bumps into very often, and half a century of physicians has missed the diagnostic symptoms in sarcoidosis - until SarcInfo came along.

I recommend you listen to the CBC Radio Show about CWD bacteria in the Tutorials box at the top left of this page.

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Sarah (---.ath.bellsouth.net)
Date:   06-08-03 06:42

Thank you for your input, but please be aware that my adverse reaction to Vibramyacin occured when I was a teenager, and didn't have Sarcoidosis.
I also have 4 other family members that DO NOT have Sarcoidosis that also have this life threatening allergy.

I will ask again, if there is an alternative to the tetracycline family?
Please DO NOT tell me that my reaction was a misdiagnosed Herxheimer Shock reaction. The emergency room and lab know better.

Thanks,
Sarah
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-08-03 07:13

Sarah,
The tendency to form sarcoid inflammation is due to a genetic predisposition. It tends to run in families. Most of the folks here at SarcInfo will tell you that they had their sarcoidosis long before it was diagnosed. It is usual for our families to exhibit a variety of lesser immune disease, including RA, asthma as well as full-blown sarcoidosis.

The inflammation is a condition that most of us have had, to a greater or lesser extent, all of our lives. I certainly had mine as a kid, and Xrays taken at age 16 show early sarcoidosis, even though it was not diagnosed until 10 years later.

You can find a piece I wrote about another herxheimer misdiagnosis on the British Medical Journal at URL
http://bmj.com/cgi/eletters/326/7390/613
My analysis has been undisputed. Maybe you could discuss that reference with Doc.

I am (genuinely) interested to find out what lab tests confirmed the diagnosis of drug allergy to Vibramyacin. Sometimes eosinophils can be a marker, but the presence of specific antibodies is usually required. Did they say what was found in your labwork?

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Kathleen Stuart (65.121.96.---)
Date:   06-08-03 13:27

Sarah,

I sympathize with your drug allergies - I am allergic to every single opiate based pain killer known to man!!!! Definitely a bummer! (I am also allergic to non-steroidal anti-inflammatories, except aspirin, and neurontin.)

I'm sure you are more aware of what is happening in your body, but I would just like to share that when I began the Minocin, I reacted as if I were having an allergic reaction - in fact, after six months, I still usually need to take an antihistamine with it, since I get incredibly itchy rashes. The herxheimer definitely feels like an allergic reaction, but fortunately, I knew this in advance, so I can handle the reaction. I can also get the same chest tightness, shortness of breath, and sore/raspy throat; the throat symptoms are my main tip-off of allergic reaction.

I also find that I can react to certain things that normally, healthily, I would not react to - I tried to drink a beer on baseball's opening day - got the throat tightness immediately!!! Since then, I have had one beer, with no problems. My body is so incredibly confused!!

Anyway, I hope you can determine if yours truly is an allergy (I understand, as I often have a hard time convincing physicians NOT to give me painkillers!!), and if there is an alternative.

Take care, Kathleen in Wyoming
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Sarah (---.ath.bellsouth.net)
Date:   06-08-03 14:22

Kathleen,

Thank you so much for taking the time to answer my post. You seem like a very caring individual and I really appreciate your concern.
Regarding my family and Sarcoidosis, I have a total of 6 family members with the disease. We all seem to be diagnoses around our mid to late 40s and we all have asthma, allergies etc.

The reason that I am really hesitant to even try Minocin, is that I almost died from anaphalatic shock, and really don't want the "cure" to be worse than the disease. I'm sure that there must be a erithomycin (spelling) or other penicillian based antibiotic that I can take in place of the Tetracyclin based Minocin. By the way, I also can't take any NSAIDS or aspirin based drugs due to my triad Asthma, so I certainly understand about your opiate based pain relievers. By the way, my sister (also a Sarc sufferer) is deathly allergic to opiate pain relievers as well.

Thanks again for caring,
Sarah
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Sarah (---.ath.bellsouth.net)
Date:   06-08-03 14:30

Trevor,

Thank you for your concern and your answer. I really don't want to get into a "p....ing" contest with you, but am wondering just what your clinical background is. I notice that you are a PHd, not MD so I am wondering just what you are basing your theories on.

I would like to present some of your information to my Pulmonologist, and Internist but hesitate to do so without some explanation as to where you base your conclusions. I have already contacted the doctors from some of your references (Johns Hopkins, CDC, and Vanderbilt University Medical Center) and am waiting their responses. I would just feel more confident presenting my doctors with hard facts and not just speculations or "pipe dreams." I am also hesitate to put my life in jeopardy just to "cure" the underlying disease I have. Please understand, that you are just one of the many folks on the internet with so called "cures" for Sarcoidosis, and therefore I am just being cautious. Please don't be offended by my probing.

Thanks,
Sarah
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-08-03 14:50

Sarah,
We all have had problems with "shock" upon taking minocycline for the first time. I can't think of one sarc patient who has been able to work up to the dose normally given a teenage acne patient without suffering severely. Early on we have had two folks who had difficulty breathing and needed oxygen, one went to the ER room and was given treatment for anaphylactic shock, just like you apparently were. But the doctors were incorrect in their diagnosis. Both of these episodes were caused by herxheimer muscle tightness constricting the airways.

The document on Minocycline dosing (top right of this page), which I produced to assist your doctors in prescribing this drug, goes into great detail on how the patient has to start at a very low dosage and work upwards. Nowadays the minocycline is not sending folks to the ER, even though almost everybody gets pretty uncomfortable for the first several months.

We recently had a sarcinfo'er go to Johns Hopkins and a pulmonologist there prescribed the FULL 100mg bid dosage of doxycycline, as well as a full dosage of plaquenil. IMO that dosage would have sent her straight to the ER room. But she knew that, and, amidst a flurry of emails between all concerned, started off by throwing away half the contents of the first single 50mg doxycycline capsule which she took. Even that gave her annoying herxheimer, but she stuck with it, and her last CAT scan showed shrinkage of her lymph nodes. She is back at work now that the ARB (Benicar) has controlled both the sarc and herx pain for her, and is trying to wean off the prednisone that Johns Hopkins forced her to take.

So, even at John's Hopkins, the home of some of the most competent sarc specialists in the world, they evidently don't have the personal experience needed to understand this disease properly.

The decision you have to make is whether to test out "my theories", which have now been pretty widely published in the medical literature, without professional dispute, and successfully applied by dozens of patients, or listen to the physicians who are telling you there is no hope, that there is no cure for this disease.

..Trevor..

ps: The specialist at Johns Hopkins has not yet had the grace to say "thanks". Maybe they still figure I am wrong...
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Kathleen Stuart (65.121.96.---)
Date:   06-08-03 15:06

Sarah,

Is your sister allergic to both the natural and synthetic painkillers? Apparently this is very rare - apparently something to do with the opiate receptor sites.

I absolutely understand your hesitance to go through another anaphyllactic experience - it really scares me too!

Your questioning is very wise - too bad more patients don't participate more in their treatment - although many physicians are not accepting of such interest. I very, very fortunately found a wonderfully bright, open, encouraging GP, who has taken control of my care. I had previously questioned my care, and as a result, was "discharged" from one of the main sarcoidosis centers in the country. They clearly did not wish to be questioned, or have alternatives suggested to them. My GP here at home accepted Trevor's and the related information, studied it himself, and is treating me with Minocin and Benicar, and I am without a doubt improving.

I guess the only advice I can give is to be careful about what answers you receive! You would expect the "experts" to know about this research (and I'm quite certain they do!!), but they don't want to acknowledge it, for their own varied reasons, and have not rushed to validate it.

Your allergies can pose a significant problem in your care, and again, I applaud your questions - and so will anyone who is truly concerned with your care. Everyone on this site has been gracious and kind, no matter what questions have arisen, and I would expect no less now!

I can assure you that, at least for me, this has been an amazingly successful treatment. I am not a biopsy diagnosed case; mine is based on my family history, and my symptoms. Once I read this site's information, my labs began to fit the profile, which they didn't before. My C-reactive protein has been elevated my entire illness, signifying inflammation, but not my Sed rate, which indicates acute infection. My ACE is elevated; and, for the first time ever, my triglycerides were elevated - both again, indicating inflammation. My D-metabolites are also elevated, just as Trevor said they would be. My family is absolutely certain of my sarcoidosis - although my symptoms are different, the illness is the same.

Hope this helps!!! Take care,

Kathleen in Wyoming
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Donna Bennett (---.jan.bellsouth.net)
Date:   06-12-03 11:57

Trevor,

I was diagnosed with two large lymph node masses in my abdomen ( 1 just behind the pancreas, the other one is lower abdomen). After 5 CAT scans, many doctors later, they took a sample of a lymph node behind my sternum. It showed positive for Sarcoid, but my ACE level was within normal limits. I have several symptoms of sarcoid, asthma, spots on the skin, knee & ankle swelling, extreme fatigue, and sometimes almost like I'm Hypothyroid .

Currently I do not take any medication for the sarcoid. Would I benefit from trying the Minocin and Benicar together. The doctors don't seem to know of anything else but the steroids (will not take).

My current doctor is willing to listen to what I can find out. Any suggestions would really be great.

Sincerely,
Donna
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-12-03 14:45

Donna,
Although the information on Minocycline/ARB therapy is scatterred all over this website, everything you need to know is here. Several dozen Sarc patients are already on this therapy, and improving.

Not just "remaining stable", which Pred and MTX therapy sets as its goal, but improving. Many of us have already acheived 'remission', a few of us have been 'cured'.

But it is a longterm therapy. In my own case, even though I could see results in a couple of months, it took almost a year to progress to a disease state that Doc calls "asymptomatic" (he can't find anything obviously wrong with me any more)(except my Xray and PFTs and the 12 inch biopsy scar on my back).

The thing to emphasize when discussing this with your own Doc is the relative risk - point out to him/her that it can "do no harm" - that both minocycline and ARBs are considered safe drugs, and are being taken by millions of people all over the world.

There are many other (more complex) arguments supporting this therapy, you can also find them scattered all over this message board. Please remember the herxheimer, and ramp up the dosage very gradually.. (as described in this tutorial)

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-12-03 15:18

Hi Donna,

Welcome to SarcInfo. By the sounds of your symptoms, you would certainly benefit by testing your D-metabolites, avoiding all forms of vitamin D and taking Benicar/Minocin.

Please spend some time reading the patient tutorials and physician papers at the top of the page, the links to articles at the bottom of the page and the topic messages (threads), especially those that are starred.

There is also a search feature on the site where you can type in words and find specific intormation. Be sure to click on 'all dates' so you will get the most complete search.

If a phrase is written in bold type in a message, you can click on it to automatically get more information. Then press your back button to return to the text.

You may need a medical dictionary (you can find one online) for some of the papers but I hope you can get the basic idea of Trevor's description of sarcoidosis etiology and treatment. Let us know if you have any specific questions.

I'm happy to hear that you have a supportive doctor. That should make it a lot easier. This protocol can be difficult to follow but it's definitely safe and many are finding it effective.

Meg
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: DJ (---.nas4.billings1.mt.us.da.qwest.net)
Date:   06-12-03 17:03

Hi Donna!

Don't be thrown off by the 'normal' ACE test. Although many physicians use this as a confirmation of Sarc, many sarc patients have a normal ACE. The D-metabolite tests are proving to be a much better indicator of immune system overactivity that is characteristic of sarcoidosis.

While waiting to get started on the Benicar/Minocin treatment, I avoided sunlight, wore the NoIR protective sunglasses, and eliminated all the vitamin D from my diet that I could. Those actions alone reduced my sarc symptoms by 50%. After 3 months on the antibiotics I am seeing a slow but steady improvement in my health (slightly masked by the herx response which makes you feel worse periodically.) Even my thyroid levels are improving.

Good for you for saying NO to long-term steriods. In my experience, with the Benicar/Minocin protocol you have nothing to lose and everything to gain.

DJ
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Donna Bennett (---.jan.bellsouth.net)
Date:   06-13-03 06:35

I have a question to anyone:

Last night I did not feel well at all......my abdomen was very swollen, the lower right side of my neck and a mild headache. Can the sarcoid be causing this. This problem usually happens every 3 to 6 months.

Last year when I saw my oncologist I had the same problem....he had no answers....even with all of the tests. He just told me to take a diuretic. Anyone have similar problems.

I read the other messages and I have found out many answers to questions that I have had. Thank you for setting up this web site.

Donna
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Jan Lewis (---.lgeenergy.com)
Date:   06-13-03 07:59

Donna, I had an ultrasound for possible gallbladder problems and techs discovered a mass around my pancreas too. After discussion back and forth, finally they decided it was probably a swollen lymph due to my sarcoidosis. I had terrible headaches for the last year until I was able to reduce my 1,25 D level from 51.6 to 25.6. Since that time, I am proud to say I have not had anything but a very mild headache which went away quickly. My lymph nodes in the right side of my neck have been swollen for quite some time, which was pointed out to me by a massage therapist. Haven't been back to her for awhile, so not sure where that stands but it seems to feel better.

I've been on the Minocin/Benicar treatment plan since January.

Jan Lewis
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-13-03 14:59

Hi Donna,

I'm glad you are finding the website helpful. The symptoms you mention: abdominal bloating, probable swollen lymph nodes in your neck and headache are all common symptoms of sarcoidosis. They are either related to the inflammation in the affected tisues or the elevated dihydroxyvitamin-D. Just 3 more reasons to get your 25-D and 1,25-D checked asap.

Meg
 
 No magic Bullet
Author: luiggie (---.rasserver.net)
Date:   06-13-03 17:37


Hello everyone;
This is an open letter to my fellow Sarcodians. It seems we're looking for a magic bullet for sarcoidosis. There is none. Although
they claim sarcoidosis has been around for over a hundred years, they still have not come up with anything to cure it, but remember, that a lot of doctors are still ignorant when it comes to sarcoid. Cancer has all this research and funding, and it's still killing people (sorry to put it do bluntly).
Every now and then a newsletter comes out about good news on Sarcoidosis and stuff, and then they see it was all a big nothing. I have pulmonary sarcoidosis, which means it's mostly concentrated in the lungs, but not the only place it could be. I have learned to live with it. I know what affects me and what helps. Medicines treat the disease, but they will not cure it, not yet anyways. Sometimes we blame everything either on the sarc or the meds, but we get sick just like every body else. Please do some research and see what works for you as our bodies react different to the same things. Prevention is always the best bet, keep your doctor's appointments and take your medicine. This is a great site, hope every thing works out well.
With the best intentions and respect to all, Luiggie.
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-13-03 18:02

Hey Luiggie,
I can assure you that, for me, there was a "magic bullet".

I just flew up to San Francisco today for a meeting. Flew back straight after 2 hours. I have made this journey many times before, but this time I didn't have to wear dark glasses. This time my hearing was back to 'normal' again. This was the first time I have left the window open on a plane in decades. I actually looked out at the scenery , something which used to make me very ill (less than a year ago). This time I enjoyed myself. I was not 'stressed out'.

Doc says I am fine, as far as he can tell. My bloodwork getting better every month. Even my PFTs are improving, despite the fibrosis.

I want to find somebody who can scan my Xrays so you can all see how sick I was after 20 years of Stage IV sarc. And your Docs can see it too. And see the change in the last year.

By the way, I will be visiting Boston to Chair two panel sessions at a conference around 26 June. Maybe it would be a good time to get together and compare notes?

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Kathleen Stuart (65.121.96.---)
Date:   06-13-03 18:02

Luiggie

I must respectfully disagree - I am finding that the Minocin and Benicar are full of magic!!! After suffering for 4 years, I am ecstatic to find out that there is a treatment to help me feel BETTER!!! The key word when I was really symptomatic was WORSE...and even any time I felt better, I knew I would pay for it by feeling worse later - and I did!!! Remission may not be a "cure", but I am ever so grateful for remission! And even if I don't feel any better than I do today, the improvement is truly "magical"!

Of course, you are correct about taking care of yourself, watching what we eat, keeping vitamin D out of our lives - and being very careful about other diseases. Although, I must say, I have not had anything in the last 4 years that I cannot attribute to sarcoidosis...our immune systems are working overtime!

Thanks for your post, and your good thoughts for all of us! This site has become as life-giving as the medicine I now take - the sharing and encouragement of fellow sufferers is invaluable and is a large part of my healing also!!!

Thank you all!!! Kathleen in Wyoming
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-13-03 18:29

Dear Luiggie,

Your message truly puzzles me. You say that this is a great website but you also confidently imply that Trevor's protocol doesn't work. I don't know your background but it doesn't sound like you have tried ARBs and antibiotics. If you are not speaking from personal experience, does that mean you don't believe any of our success stories?

I would be interested to know what motivated you to post this warning. And why you would be adverse to trying medications that are known to be safe and reported to be effective.

Just what is it you would have us prevent? Have your doctors helped you with their standard medications? You sound as though you don't have any hope of getting better and I don't understand that. I know that you care about your fellow sarc sufferers and have helped them with your website.

I hope you will reconsider your conclusions about this treatment and give it a try. I feel so much better and I wish you did too.

Meg
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-13-03 19:39

Hi, Luiggie,

I want you to know that I think skepticism can be a good thing. Maybe that's why they call it "healthy skepticism." I can tell you that I was skeptical about EVERYTHING discussed here on SarcInfo.

The first thing I was skeptical about was the use of Prednisone for sarcoidosis. I researched the medical journals to try to find whether Prednisone was a cure, whether it helped the outcome of sarcoidosis, whether it could prevent organ damage, and what the short-and long-term side effects are. All that research led me to refuse Prednisone when it was offered to me.

I did the same sort of research into the other treatments discussed here: avoiding sunlight and vitamin D, using minocycline to treat sarcoidosis, and using ARBs to protect organ function and control the angiotensin II in sarcoidosis. In addition, I shared much of the research I found (available on this website) with my doctor and discussed it with him. We didn't try anything until we had researched it thoroughly and felt comfortable with what we were dealing with.

No one should feel out of place for being skeptical, because it's only fair to tell you that I was, too. It's just that now, I've applied enough of Trevor's protocol of antibiotics, angiotensin receptor blocking drugs, controlling all sources of vitamin D and monitoring blood levels of vitamin D metabolites and ACE - to see that it works. When anyone is willing to take the information from this website, share it with their doctors, and implement the treatment, I hope their health improves as much as mine has, and I hope their doctors are as pleased as mine are!

Please understand that the people here still are diligently seeking the truth about everything related to sarcoidosis, and are committed to sharing it on this website. I hope you keep reading and considering the information here.

Best wishes,
Belinda
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Terry A Ash (---.anc.elnk.gci.net)
Date:   06-14-03 12:47

What if someone is allergic to tetracyclenes/tetramiacins? What would they take to get rid of the microbacteria? I became allergic as an older child. I am also allergic to sulfur/sulfa, ceftin, and have been 'killed' by aneasthesiologists in day surgery three times from them using SUX on me (they no longer use this aneasthetic, thank the Lord!).
I was diagnosed in 02/1997 with sarcoidosis by an Anchorage pulmonologist. Prior to this year, they have treated me with mass, lengthy doses of prednisone off and on (which I abhor), but now they have begun treatment with methotrexate for six months. I am disgusted with nothing working and that after 20 years of studying this disease, they still can't find better ways to treat the symptoms. Although I would like a cure so I can work again. I was making 50K a year in the IT field when it hit me. Of course, I lost everything. Talk about culture shock!
Now the state funded chronic and acute medical assistance program funding has been cut/vetoed by the current govenor of Alaska and almost none of my prescriptions are covered. Just one of my presciptions costs $130.00 per month! I only receive $280.00 cash assistance while awaiting Social Security to approve me and I have to pay $160.00 for rent, $20.00 for phone, and $60.00 for auto insurance out of that. So who can afford medicine?
Sorry about the gripe and moan session. I also suffer from severe depression and am on zoloft. I don't think its working anymore...

 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-14-03 13:57

Terry,

One of the subjects frequently discussed on SarcInfo is the Jarisch-Herxheimer reaction, a transient, short-term intensification of disease symptoms as a result of the microorganisms dying - when effective antibiotics are used. This happens not only in sarcoidosis, but also in other diseases, such as Lyme disease and Q fever.

Medical literature is filled with reports of things such as "hypersensitivity" and "immune response" reactions to antibiotics, when patients taking antibiotics become worse. This is probably a confusion both in terminology and understanding, because the Herxheimer response is not widely understood. In these cases, the antibiotics are usually stopped and patients just remember an adverse reaction.

There are many discussions here about how to manage the Herxheimer reaction, something to be celebrated because it means antibiotic therapy is killing microorganisms. Some of the ways Herxheimer can be managed are with education, so the patient knows about the Herxheimer response, and special dosing requirements of low doses and every-other-day doses to allow the body time to recover from the Herxheimer before the next delivery of antibiotics.

There are reports on this forum from sarcoidosis patients who have had responses to antibiotics that they were told were allergic reactions, but their subsequent attempts to tolerate the same antibiotics have been successful, understanding the Herxheimer reaction and using dosing requirements to accommodate it.

You said you are allergic to tetracyclines. A true allergy means antibodies are produced. Is this what happened to you: you have antibodies as a result of taking these drugs?

Belinda
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Luiggie (---.rasserver.net)
Date:   06-14-03 18:41

Hello Trevor;
I'm happy about your trip. My eyes are also sensitive to light and that is a bummer. It seems I said something to upset some readers, that was not the purpose, I reffer a lot of members for information to this site and send links to some postings, so I am confident with it and am glad it's here.

Hi Kathleen;
Remission is always better than active, so keep doing what you're doing to keep it in check and congratulations, stay well.

Hello Meg:
I beleive you misunderstood my posting. This is a great site and I'm not putting down Trevor's methods in any way. I think he's done great. I said meds don't cure sarcoidosis. They don't. Sarc may go into remission, but it's always there, active or not. I have every intention of getting better.

Hey Belinda:
I agree with all of the information on this site. I myself have learned a lot from this site, but I think I will rephrase my words more carefully next time.
Thank you all
Sincerely;
Luiggie
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-14-03 18:59

Luiggie,
I myself also said "meds don't cure sarcoidosis .. Sarc may go into remission, but it's always there" in one of my early tutorials. I think it may even be still on line

But as I come up to the end of my first year on Minocycline I have found that I am probably wrong. I had to go scurrying back to the drawing boards to re-examine the action of the bugs causing sarcoidosis, trying to get them to fit the model which I am observing in my own life - which is actually way beyond remission, and real close to (on track to) a real cure.

I have now found that mode of action in the research being done on the DNA profile of SARS. The SARS bugs work in a similar way to the way I now predict that the SARC bugs act. There is an article here which explains some of the complexities...

At the moment I am way "less sensitive" to sunlight than I ever remember. Certainly less sensitive than I was an undergrad, 10 years before my diagnosis.

My eyes lost most of their sensitivity quite suddenly, at about month 4, and they seem to have been getting even better every month since then.

Sorry for this rambling, but I just wanted to let you know I am changing my mind, and assembling data on this disease as we all go forward. At this point I do believe that a cure is possible, that once the bugs are all killed you will be left with fibrosis and scarring, but that the disease itself can be expected to never become active again.

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: wendy (---.res.east.verizon.net)
Date:   06-14-03 20:11

Hello.
I can't believe I have stumbled onto this website. My husband has struggled with Sarcoidosis for almost 10 years. I can't believe that there is a way to get to remission. Are you guys for real?? I have read all of your web pages and am amazed.
Please tell me this is not a dream.
Wendy
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-14-03 20:21

Yes, Wendy,
This is all some kind of bad joke.

For the last year I have posted all these 6400 messages myself, adding another 2 or 3 every night.
Oops - wait a minute:- 365 days x 3 messages = 1095, which doesn't account for all 6400

OK, at the rate of ten every night
Oops, 365 x 10 = 3650 - Nope, that won't do

Alright, at the rate of 17.5 every night
I must have been working like a dog

Welcome to SarcInfo, Wendy. Here we have recovering sarcoidosis Physicians, Nurses and patients who have already recovered their sense of humor 

Sincerely, Trevor
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-14-03 20:36

Wendy,

Yes, we are "for real," and Trevor's math is usually much better.

There are a lot of people here who are recovering their lives - along with their sense of humor - using the protocols discussed here: controlling all sources of vitamin D and monitoring serum levels of D-metabolites, and special dosing of antibiotics and angiotensin receptor blocking drugs.

Welcome to SarcInfo. You will probably want to devote some time to reading and digesting the information here. As you read, when you run into bold text, there are links to more information and documentation. There are tutorials at the top of the page and good background information at the bottom of the page. If you need help, just post a question under "General Questions." There is usually someone online within a short time to help with technical questions related to sarcoidosis or to direct you to references to help you.

Best wishes,
Belinda
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-14-03 21:25

Hi Wendy,

Welcome to SarcInfo. If you have read all of our webpages then I am truly amazed. Now all you have to do is find a doctor who will order the D-metabolite blood tests for your husband. When they come back, get the exact numbers for Trevor to analyze. If they are elevated, he can begin treatment with ARBs and antibiotics and get on the road to recovery.

I hope we will be reading his success story soon.

Meg
 
 Re: **** Please Post General Questions Here ***
Author: Mike (---.res.east.verizon.net)
Date:   06-15-03 07:17

Hi, Trevor, ( & Meg, Belinda, and everybody),

Thanks for your kind responses to my wife (Wendy). She didn't tell you but she is an NP (not currently practicing). Between her background and mine (as a research engineer), we've been pretty tough customers for a lot of docs and very unsatisified with our progress to date. After 8 years, I've still got a cough, some decreased PFT numbers, and progressively worse skin lesions and chest CTs.

We've been through all of the standard approaches and a bunch of non-contventional ones and I'm currently on Advair, Allegra, and psuedofed. This combination appears to be somewhat effective in controlling the cough.

OK, now for the questions:

1) I assume that I should get off the Advair immediately since it may be allowing proliferation of the bugs in my lungs, yes?

2) Anybody know a doc in the DC area friendly to the ARB/Minocin therapy regimen?

3) Are ARBs indicated for patients who have relatively normal D ratios?

4) I typically wear contacts all day and use quality off-the-shelf sunglasses outdoors. Are there compelling reasons to consider Zeiss prescription lenses over continued use of my contacts with NoIR Plano lenses?

5) I do sit in front of a computer on many days and I assume this creates light exposure issues. Mostly, I use active matrix LCD (laptop) screens, but sometimes Trinatron CRTs. Any advice on this?

Also, I get out to Thousand Oaks sometimes on business. I work in wireless network R&D and used to play AC/DC in high school garage bands. I don't want to alarm anybody, but I think Trevor may be my evil twin (or vice versa)...
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: DJ (---.nas4.billings1.mt.us.da.qwest.net)
Date:   06-15-03 08:15

Hiyas Mike & Wendy!

Re: point #5

I also spend full days at the computer, developing severe eye inflammation and headaches after just a couple of hours in front of the screen. My suggestion is to turn down the brightness and contrast on your monitor. I also used a special set of lighter NoIR lenses just for my computer work and TV viewing. Now, after 3 months of Minocin treatment, my eyes are much less sensitive and I have given up my indoor glasses.

The ARB/Minocin protocol has done amazing things for me, and it is safer than any other treatment I have seen for sarc. (even safer than many OTC products IMO)

Keeping a Stiff Upper Lip

DJ

Trevor - maybe you should do some statistical research on the correlation between AC/DC and Sarcoidosis - You Can't Stop Rock & Roll!
 
 Re: Things to remember when using Minocin
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-15-03 10:48

Mike,
There is no hurry to do anything if you are stable. Measure your D metabolites (will take about a week to get the results). Then apply the ARB blockade, then wait a week or two and start the Antibiotic therapy using the protocol in the "Minocycline Dosing Issues" tutorial (at top right).

At that point you will want to stop the steroid inhaler, after the ARB blockade has gotten stable. It will be easier then.

The NoIR lenses provide perfect protection. Have them mounted into some frames that stop light coming in from the bottom and wear a cap to stop light from the top. I had to use Zeiss because the amount of astigmatism correction I needed was greater than can be achieved with contacts. They are wonderful lenses... but expensive...

Finding an understanding Doc is going to be your biggest challenge...

..Trevor..
ps: Let's wait till your bloodwork data gets back before we start contemplating "normal D ratios"
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Brian (---.ne.client2.attbi.com)
Date:   06-15-03 13:57

Good Afternoon Trevor,

Monday will mark the beginning of my third week on the minocycline. I have been taking one 100 mg capsule on Mon, Wed, and Fri. since June 2.

My reaction to my initial dose on June 2nd was for my blood pressure to shoot up to 150/100....and no, the doctor never would prescribe the benicar, so I've just rolled with whatever has happened. My blood pressure is now in the 125 to 135 over 75 to 85 range. Still high, but not as bad, and does not shoot up when I take a capsule. It only happened on the first one. I don't remember being stressed or anxiety ridden over that first one ( which maybe could have made it go up)...I was too happy to finally have them in my possession.

Over the first few days, my main reaction was that I was very lightheaded and "woozy" with some tightness in my chest. Pretty much the same chest tightness as usual. Friday morning - June 6 - I woke up with a knot/lump in my throat that made swallowing/swallowing food or drink uncomfortable. This lasted until the following Tuesday, and then pretty much disappeared during the day. Right after the lump in my throat went away, the chest tightness/pain increased. This has been very uncomfortable until mid-day yesterday when it subsided and it's not very bad today either.

I am not sure if these are common herx reactions. Is that lump in the throat thing a herx. reaction? One thing that I can say though, is that I feel like I can take a deep breath of air and that is a good thing as far as I'm concerned.

I really cannot avoid the sun as much as other people. I have to do quite a bit of work outside due to my job...painting, carpentry, landscaping etc.. Will this be a great hindrance to my recovery? That is the one thing that I've been most concerned about.

My next set of bloodwork is in mid to late July. I'll be interested to see what the results show after being on the minocin for approx. 1 1/2 months.

Thanks,

Brian
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-15-03 21:19

Hi Brian,

Yes, those are common Herxheimer reactions. Since you can't avoid the sun, you are bound to have some doozies. I would suggest that you document these reactions for your doctor, especially the throat tightening. Take him some information on the Herxheimer reaction and point out that it is proof positive of the presence of occult miicroorganisms.

You need to insist that he order the Benicar inflammatory blockade for you. To refuse to do so, in the presence of your significant Herxheimer is medical malpractice, IMO. I don't know what your situation is, but a second opinion is always a good idea when you are not satisfied with your currrent medical care.

Good luck to you!

Meg
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Tammy (---.cox-internet.com)
Date:   06-16-03 17:49

Hello Everyone!

Say a few prayers tonight! I go to the Doc tomorrow to find out his opinion of the info I gave him almost 2 weeks ago. I really hope he is open to the minocin/benicar treatment. I do have good news! Because of the surgeries and meds I have already taken this year due to Sarc, my out of pocket insurance copay and personal expense has been met; for the rest of this year I do not have to pay for any meds! That will sure help with this regime, which can be VERY EXPENSIVE!!!!!! YEAH! I am still on pred. and will have to wean off some before I start the minocin. I know I may have asked this question before, but when do I start the benicar? ....as I am weaning off pred?...Ad was it when I reach 5mg of pred...do I start the minocin. Do I need to have my D-metabolites done tomorrow or after I am off pred? I am on pred. 20mg qod and lisinopril/hctz 10/12.5...1/2 tab qd right now.
Thanx...~Tammy~
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-16-03 18:36

Tammy,
Lisinopril is an ACE Inhibitor. It does not block the inflammation like an ARB (Benicar) does, but it will make any reading of your ACE bloodwork totally useless. So would the pred.

But 1,25-D is not affected as much by the pred (or the ACEI). This is sort of what you expect, since the 1,25-D is a good indicator of underlying inflammation, which you know is still active, even with the drugs. I would get both D metabolites measured right now, to give you a baseline. Once you start Benicar that will dpress the 1,25-D reading.

Talk to Doc about starting the Benicar maybe 20mg every 8 hours and keep taking your Lisinopril and then when BP is stable increase the Benicar to 40mg q6-8h and slowly decrease the lisinopril. You probably don't want to keep using the HCTZ, as the kidneys are usually pretty dopey already in a sarc patient, and you don't want anything else beating them into submission (like HCTZ does).

You can start the Minocycline as soon as you get to stability on the Benicar - you should feel your head clear and symptoms reduce at that point. Prepare to have the minocycline make you feel crummy again as it kills the bugs... Taper the pred from that point too. See what Doc thinks.

..trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Tammy (---.cox-internet.com)
Date:   06-16-03 20:37

Trevor,

My bp is stable now, and even runs on the low side. Do I still need to to start with benicar 20mg q 8h, or 40mg q6-8h?can Istop the lisinopril immediately if my BP is stable ?
~Tammy~
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-16-03 20:53

Tammy
You are taking two BP medications, each of them more effective at reducing BP than ARBs alone. It usually takes a week or so for your BP to restabilize after changing medication, and that is why I wouldn't quit any of them cold-turkey unless you (and Doc) are monitoring the BP continually. Additionally, there are a lot of systems inside your body that have to readjust to the new regime.

The only thing to remember is that the ARB has to be taken every 6-8 hours, even if you start it off with quite low doses. It still has to be 6-8 hours and then you increase the dosage until it gets to 40mg. At this point you vary the intervals between dosing to deal with bad bouts of herx, sun exposure, etc.

The effect of the ARB on BP is usually much less than you (or Doc) expects. Over time, as the sarc gets under control, your BP will drift down to normal, but if you look at the graph you can see the max pressor effect of Benicar is relatively small, regardless of the dosage.

http://clinmed.netprints.org/content/200301/images/medium/2003010001v1/F3/fig3-ah.gif

Trevor
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Tammy (---.cox-internet.com)
Date:   06-16-03 20:57

Trevor,

Thanx..I understand now. Have a good night!
~Tammy~
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Michael (---.cvx2-a.man.dial.ntli.net)
Date:   06-18-03 05:19

Hello Trevor,
My name is Michael and I need some advice but my e-mail seems to have disappeared into cyberspace! Not used to this Type of site.
Will have to try again.
Michael
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-18-03 09:23

Michael,
To protect your privacy, and to make sure you get no spam sent to you from spambots harvesting this site, your email address is visible only to the Moderators and to me, the Admin.

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: John T. (---.proxy.aol.com)
Date:   06-25-03 17:05

I've read that you shouldn't take minocin with orange or grapefruit juice. Is this true of all citrus? I love lemon and ginger tea. Would this be a problem?

John T
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-25-03 20:39

John T.,

Orange juice and grapefruit juice are notorious for preventing proper absorption from the GI tract of medications. Lemon and ginger tea would not have the same acidity (just flavorings) and, therefore, would be fine to use.

Cheers,

Meg
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: John T. (---.proxy.aol.com)
Date:   06-26-03 14:23

Thanks, I start minocycline tomorrow.
John T.
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Tammy (---.cox-internet.com)
Date:   06-26-03 18:50

Hello,

When I go to the dr on the first, other than the d-metabolites and the ACE tests, are there any other tests that would be beneficial for reference? I believe he will run these tests if asked.
~Tammy~
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-26-03 20:27

Tammy,

A serum calcium and urine calcium would be interesting information.

Meg
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Mike (---.res.east.verizon.net)
Date:   07-08-03 20:36

Hi, Trevor and everybody,

I'm happily on the full protocol for over a week now (200 mg minocycline qod & 40 mg Benicar tid). My cough disappeared with the ARBs a couple of week back and my skin lesions seem to be slowly responding since starting the abx. My only herx symptoms seem to be a little pain (headache and joint), a little lightheadedness, and an unquenchable thirst for water when I take the minocycline. I have a few fine-tuning questions:

1) Should I be concerned about the limited herx response? Am I just lucky or should I be considering Bactrim and/or other abx?

2) I'm currently on generic minocycline, should I push for a script for the Lederle? Any motivation to increase dosage or frequecy at this time?

3) Any reason to think I should incrase the Benicar to qid? The conversations seem to indicate this only to control herx. BP is stable at either freq.

I know that it may take a while to get my bugs, but after 9 years with this disease, I'm anxious to be sure I'm on the right track.

Thanks in advance for any advice.

--Mike
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-08-03 21:03

Mike,
200mg is a high dosage, you may have to reduce it as time goes by. The herx often gets worse as different layers of inflamed tissue are exposed. I wouldnt be worried about not having any crippling herx for two months or so - it will come, and if it doesn't you should have seen tangible results by then.

I no longer think there is any need for lederle brand. Now that we vary the dosage, based on the herx, then the absolute bioavailability becomes unimportant.

Wait and see if your symptoms require Benicar qid. It may change as the herx changes, too. Maybe suggest that Doc considers the qid or tid to be PRN and get clearance for dosage on that basis.

..Trevor..

qid: four times a day
tid: three times a day
PRN: as needed
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Bonnie (---.ties.k12.mn.us)
Date:   07-10-03 14:47

I did an internet search on Minocin. There were a few sites saying it causes Lupus and Lupus type symptoms. With so many people saying they are experiencing "herx", could they be harming themselves?
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-10-03 15:52

Bonnie,
There is no known biochemical reaction through which minocycline could "cause" an immune disease like Lupus, unless it was merely bringing an undiagnosed immune problem to the surface with a herxheimer reaction.

The Doctors who have reported a wide variety of "side effects" from Minocycline did not even consider that the reactions could be Herxheimer. You might call it incompetent of them, but I would characterize it merely as ignorance.

Here is a discussion at the BMJ of a particularly imaginative "side effect" and my admonition that it sure only sounds like Herxheimer.

The way that most Docs get to come across Herxheimer is by treating either Syphilis or Lyme. Very few PCPs get to do that these days. Yet it is the PCPs who are confused when a teenage acne patient start to exhibit symptoms of Lupus.

IMO, there is no known biochemical action of the Tetracyclines which can induce the illnesses attributed to Minocycline and Doxycycline. Only Herxheimer.

I hope that SarcInfo folks are not harming themselves by pushing herx too hard, you will note that I frequently admonish them to "slow down". But I guess when you have suffered so much for so long that the realization that you are at long last achieving relief might well drive folks to push the limits. Besides trusting their personal physicians to advise them on this, are there any other steps you think I should be taking?

..Trevor..
ps: Yes, I know there is an old-wives-tale about some 'magical' "immune modulating" power that the tetracyclines possess. IMO it is unscientific hogwash produced to try and explain the actions of mycoplasma by physicians who still do not accept that mycoplasma exists.
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Jack (---.nrockv01.md.comcast.net)
Date:   07-16-03 08:03

Hi Trevor and everyone,
I have started app. 3 months ago with 50mg. Minocyline for 12 days. After that 100 mg. every other day. I did not have Herx. symptoms except some headache couple times in the past week. My involment with Sarcoidosis have been with lungs and skin which I did not notice any change. Shall I do any tests again before I continue with 200 mg. a day?
Thank You,
Jack
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-16-03 08:11

Jack,
I would have expected that you would be noticing some tangible improvement after 3 months.

Are you taking any steroids, or other drugs or supplements? Have you had your D metabolites measured?

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: chelsear (---.psych.pitt.edu)
Date:   07-16-03 12:35

Are there people taking the Minocin or Doxycycline treatment without Benicar who are able to get thru the regimen and see positive results??? I'd like to hear from others that have doctors who would only prescribe the antibiotics....how are you doing with the Herxheimers? I'll take antibiotics over nothing at all which are the options available to me.

chelsea
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: ~Tammy~ (---.cox-internet.com)
Date:   07-16-03 18:39

Hello,

Due to a nasty sinus infection, I've had to start some Bactrim ds 1 bid x14days. Do I continue with the mino or lay off? Still having HERX with each mino treatment. Thanx for your help!
~Tammy~
 
 Re: Things to remember when using Minocin
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-16-03 18:48

Tammy,
Message number 2 of this thread explains that Bactrim works well to potentiate the minocycline. They can be taken together. The herx will be worse, as they symbiotically kill the CWD bacteria.

..Trevor..
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Jack (---.proxy.aol.com)
Date:   07-17-03 11:54

Hi Trevor,
In April before I start to take the Minocycline I measured the D metabolites and they were 111.2/29.7. I am taking some medications and supplement.
Zoloft 12.5mg, Buspirone 45mg,Nexium 40mg,Dicyclomine20mgUrsodiol 600mg.
B1&6 100mgMagnesium/Calsium 1000-500mg and Inositol 5tbs aday.
thank you,
Jack
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Meg (---.188.239.198.euc.wi.charter.com)
Date:   07-17-03 19:51

Jack,

Can you tell me what your understanding is of why you are taking each of the medications you've listed?

Meg
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Jane (---.ap.plala.or.jp)
Date:   07-17-03 22:03

Hi Chelsea

My experience of antibiotic therapy without ARB prophylaxis was as follows. Shortly after starting a high dose Doxycycline/Bactrim regimen to treat an acute exacerbation of spastic paralysis, I began to experience random bouts of tachycardia. Since the antibiotics were doing such a good job of treating my neurological symptoms I ignored it. My D2 had come down to 33 pg/ml after the Doxycycline/Bactrim bolus and I was in a hurry to achieve remission. Switching to Minocycline at 100mg qod and then 200mg qod increased the incidence and severity of tachycardia and I rapidly developed chronic shortness of breath, orthopnea, fatigue, syncope and chest pain. EKG 'abnormal' for the first time ever. I had to sleep sitting upright and was housebound for nearly three months. Stopping Minocycline for four weeks did little to reverse these symptoms and I became alarmed. Showed Trevor's letter to 'Chest' to Cardiologist who refused to prescribe ARBs in the absence of a 'mega study'. Advised to resume steroid therapy which I declined. On confirmation of Vitamin D ratio of 4:1 (D2 had shot back up along with ACE while off Minocycline), neurologist acquiesced and prescribed Diovan at 80 mg tid. Six days after commencing Diovan alone orthopnea resolved. Other cardiac symptoms ameliorated substantially. I am now able to tolerate Minocycline at 100 mg qod with minimal cardiac herx. Failure to take Diovan for 19 hours one day recently however brought back all symptoms in full force.

I should mention that I was steroid dependent for three years prior to starting Minocycline. The apparent de novo development of cardiac symptoms was therefore most likely a severe and unmitigated Herxheimer response to inflammation previously masked by steroid therapy. Having been relieved of a lot of my neurological "baggage" I am now stuck with something almost as disabling. Hardly a wise trade off in hindsight. Obtaining Diovan has involved substantial effort and I am having to pay $160 per month out of pocket. I had to negotiate all this in Japanese and receive the full prescription by using two sources but it has been worth it. I would do anything to be able to turn the clock back six months

If you have a high D ratio and are considering antibiotic therapy in the absence of ARBs, I would suggest extreme conservatism with the starting dosage and ceasing immediately at the sign of any cardiac abnormalities.

Good luck and keep up your efforts to get the ARB

Jane (Tokyo)
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Jack (---.nrockv01.md.comcast.net)
Date:   07-19-03 05:04

Meg,
I am taking Zoloft&Buspirone for anxiety.Nexium for gastroesophagel reflux,
Dicyclomine and Ursodiol for gastrointestinal problem. The others are vitamins.
Jack
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Meg (---.188.239.198.euc.wi.charter.com)
Date:   07-19-03 08:02

Jack,

I'm assuming that you would like one of us to comment on the meds that you are taking. Of course, your doctor knows best, but there seems to be a contradiction. You are taking two presciptions meds for anxiety and probably the B-vitamins and Inosital, as well. However, the Ursodiol has listed anxiety, insomnia and depression as common side effects. I hope these problems did not develop after you began taking the gastrointestinal meds.

Have you tried altering your diet to correct the acid reflux? Reducing carbohydrate intake can help significantly. Do you have gallstones? The only use listed in my book for ursodiol is to dissolve gallstones. Dicyclomine is listed as rarely used so I'm assuming your doctor has tried more conventional meds first. Nexium is the new generation Prilosec which was developed, IMO, to maintain pharmaceutical profits. The older proton pump inhibitors for acid reflux are far less expensive and should work well unless you also have esophageal erosion.

Be sure to limit your calcium intake to less than 1200mg per day including your food intake. Taking a combination supplement gives you less flexibility for dosage adjustment.

As your D-metabolites and inflammation are reduced with Benicar and minocycline, you may find that your anxiety and gastrointestinal problems were due to sarcoidosis. Hopefully, you won't need these other medications too much longer.

Meg
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Jack (---.nrockv01.md.comcast.net)
Date:   07-22-03 08:19

Meg,
Thank you for your time. I will be stopping some of the medications in the next a few months. I will talk about the side effects of Ursodiol with my doc. I have a few more Minocycline 100 left. When they are finished. What should be my next step? My doctor is following my instructions in this matter.
Shall I measure my D-metabolites again? [ Last test was in April.]
Or continue wiyh 200mg Minocycline?
Jack
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Meg (---.188.239.198.euc.wi.charter.com)
Date:   07-22-03 14:20

Jack,

Talk to your doctor before you stop any of your medications. You may still need them for symptom relief. Discontinuing them one at a time will help you determine if you still need them.

You reported that you are not having any Herxheimer reaction with 100mg of Minocin qod. Please reread the list of hypervitaminosis-D symptoms to be sure you aren't experiencing symptoms you didn't know were Herxheimer. Is there and change in your skin lesions?

Increasing the Minocin to 200mg qod would be the next logical step. Rechecking your D-metabolites isn't necessary but the comparison to April's numbers might give you some information. In general, we would expect to see the 25-D down as your fat stores are depleted while you are avoiding exposure to vitamin D. The 1,25-D may or may not still be elevated.

Are you taking Benicar? If not, getting levels checked before starting would be a good idea. Benicar brings the 1,25-D down nicely. And it is an important part of Trevor's protocol.

Hang in there,

Meg
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Jack (---.nrockv01.md.comcast.net)
Date:   07-27-03 09:07

Meg,
I have never taken Benicar. I have been taking Monocycline 100 mg. every other day.I am planning to check levels before I start to Benicar. How much mg. a day should I take? Can I also take Monocycline at the same time? And for how long?

Thanks,
Jack
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Meg (---.188.239.198.euc.wi.charter.com)
Date:   07-27-03 19:07

Hi Jack,

It's a good idea to check your 25-D and 1,25-D levels before starting Benicar. What were they when last tested?

Benicar blocks sarcoidosis inflammation and is an essential part of Trevor's protocol. It is taken ideally 40mg every six hours. Every 8hr dosing is the minimum. Some patients have had to compromise by taking lower doses initially than working up to the full blockade. There is a tutorial for your doctor at this url

Benicar facilitates the effectiveness of minocycline and they are taken together until enough bacteria are killed to effect a remission.

Keep reading the tutorials/threads on SarcInfo and the information will begin to fall into place.

Meg
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: John Tavares (---.proxy.aol.com)
Date:   07-28-03 17:22

Hi Trevor, Meg, and/or Belinda,

I,m back on Mino after finishing my course of Cipro that the urologist wanted for a prostate infection and I have a question. I have been taking 50mg Mino. At first, the herx was minor and I was going to up it to 100mg, but on the third dose I got wacked. It took 3 days for the herx to ease up. That was pre Cipro. I started back at 50mg after finishing the Cipro and got a tolerable but healthy herx reaction. I waited til the 3rd day to take another dose (50mg) because I didn't feel recovered from the first dose and the Herx was more than the first dose, like it was added to some that hd not quite cleared from the previous dose.

I am taking Benicar at 40 every 6hrs. My last D tests were 25D-8, 125D-55. At this point I can tolerate the herx I'm getting (not sure about my family, I go through about 24hrs of being super irritable) My question is, am I better off staying with 50mg every 3rd day, should I go to 50mg every 4th day, or should I cut the dose lower and try to find a dose I can take every other day without a cumlitive build up of herx?

Thanks for any advise you can send my way,

John T.

ps: Does your body get rid of the endotoxins through the liver, kidneys, or both? I have been pushing fluids hard to try to flush thing faster.
 
 Re: ** Things to remember with Minocin Antibiotic Therapy
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-29-03 06:53

John Tavares,
It is interesting that the Cipro gave you no herx. that indicates it was not killing the bacteria causing Sarcoidosis.

50mg is a low dose of minocycline for you to be getting herx from. That indicates a pretty bad infection somewhere in your body. I really would try and put up with the herx from 50mg for a month or so. I think your family will understand.

If you were at 100mg I would have suggested cutting back. But our aim is to kill those bugs... and in a reasonable period of time (6-12 months).

It is fine to stretch to 4 days between doses, I think. The herx will be a little more intense, but you will have more "quality time"

..Trevor..
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Historical perspective on Sarcoidosis:


  1. The John's Hopkins Vasculitis Center: Prednisone Side Effects (incl. PHOTOS and PHOTOGRAPHS)
  2. Steroid-Treated patients Have higher risk of Cardiac problems
  3. "Evidence Growing That Inhaled Steroids, Like Steroid Pills, Can Cause Bone Loss"
  4. "Corticosteroids contribute to the prolongation of the disease by delaying resolution"
  5. "No data to suggest that corticosteroid therapy alters long-term disease progression"
  6. Cochrane Review - "Oral and Inhaled Corticosteroids have no discernible effect on lung function"
  7. Prednisone Improves Symptoms but not Lung Function in Sarcodiosis
  8. There is no conclusive evidence that corticosteroids affect the development of irreversible pulmonary damage
  9. Clinical Guideline For Treatment Of Arthritis Pain
  10. Angiotensin II receptor on BALF macrophages from Japanese patients with active sarcoidosis

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