Sarcoidosis Answers for Sarcoidosis Physicians and Nurses

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 The material here provides useful background, but much of it is now out-of-date.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 1^st 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