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-sites of the Autoimmunity Research Foundation.
 
This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but most of this site is now out-of-date.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 General Questions -- for reading only
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-03-05 16:52

Many folks arrive at SarcInfo and just get 'blown away' by the huge amount of information here. It will take you some time, maybe weeks, to read all the stuff which is important to your remission.

SarcInfo focuses on the medical and technical issues surrounding Sarcoidosis and how to implement the Marshall Protocol.

Every message you post on SarcInfo will be read by the moderators, who include nurses and other health professionals.

Since many of your questions are more general, like "What do I do?", and don't fit into any of the specialized topics already created, this thread is for you to leave those questions in. Questions you leave in this thread will generally be archived after a week or so, so feel free to ask questions about your specific situations and past history.

Welcome to SarcInfo
Trevor Marshall (Admin)

ps: Don't forget to click on the
"Older Messages" link at the top-right of the front page, there is much more
information here than can fit on the front page.
pps: There is a "Search" button on every page. Make sure you select a date range of "all dates" if you want an exhaustive search of the whole database.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: M Powley (---.akl.callplus.net.nz)
Date:   06-04-05 21:48

Hi

I was told that I may have sarc in my lungs about a year ago after having a chest xray - the doc won't commit to a diagnoses as he says there is no way to confirm I have sarcoidosis. I am wondering firstly if that is true?
As well as having chest pain I get headaches, cramps in my legs, nausea, memory loss, back pain, tingling in my hands and feet along with a few other things. The doctor has told me these things are unconnected with the sarcoidosis but after having done some reading I'm not so sure.
Can you advise as to the likelyhood that these may be connected?
The doc also tells me that if I do have sarcoidosis that I don't need any treatment at this point and if I do then he will put me on a course of steroids - from reading I am getting the picture that this is not the best course of action - can you tell me what I should be doing?
I am quite confused about this whole issue as the doctor is telling me one thing and any research I do is telling me completely different.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-04-05 23:05

M Powley,

Welcome to SarcInfo.

Sarcoidosis can be diagnosed with a biopsy, but that isn’t necessary. A test of your D-metabolites, which is a blood test can confirm whether or not you have a Th1 illness which can be treated by the Marshall Protocol.

The symptoms that you describe are very common with Sarcoidosis. Many doctors consider it only a lung disease, and, in fact, it is a systemic disease. It can affect any and all of the organs in your body. Check the list of HYPERVITAMINOSIS-D SYMPTOMS here, and see how many seem familiar to you.

We now know that it is caused by cell wall deficient (CWD) bacteria which have learned to hide from and live within the immune system. In other words, it is a bacterial infection. The bacteria are slow growing. But the longer you take to start treating it, the more ill you will become. It will not go away, it will only get worse. Steroids do not cure Sarcoidosis. They only stop the immune system from working, and reduce the inflammation causing the symptoms for a while. But without a functioning immune system, the bacteria are allowed to multiply without anything to stop them. The steroids also cause additional problems for the body as well.

You can start helping yourself by avoiding all sources of vitamin D, in food and supplements. The most obvious foods are fish, egg yolks, fish oil, and fortified dairy products. Read all labels! Also avoid the sun and bright lights. Cover the windows in your home, and if you must go out during the day, cover up completely. Long pants, long sleeves, hat, scarf, and gloves.

Please read the tutorials at the top of the page, and I will send you additional information via email. Feel free to ask any questions that aren’t answered.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   06-05-05 08:29

Hi M,

It's no wonder you are confused. Your doctor is citing what he has learned about sarcoidosis from the self-appointed experts. Unfortunately, most of what he has learned is incorrect. Please click on the NIH ACCESS study at the top of this page to see that this huge official study demonstrated that sarcoidosis does not go away on its own or with the standard treatment of prednisone.

All the literature on sarcoidosis states that sarcoidosis is a systemic disease that can affect any body part. Yet many doctors refuse to acknowledge any symptoms other than those affecting the lungs. This stems in part because the disease is usually ignored until the patient cannot breathe. And that is partly due to the fact that doctors are hesitant to use the toxic standard treatment unless there is major organ damage. In the meantime, patients suffer with symptoms that greatly reduce their quality of life and will eventually take that life.

There are many studies demonstrating the presence of bacteria within sarcoidosis tissue. Dr. Marshall took that premise and devised a protocol to eliminate those intracellular bacteria. The result has been hundreds of patients safely recovered and recovering from sarcoidosis. We are in the process of trying to persuade the medical establishment that this novel approach represents a cure for a devastating illness. So far, it's been a tough sell despite our recent letter campaign from hundreds of patients to the NIH. No one wants to be told that they have been wrong for fifty years and that the problem has been solved by someone outside the establishment.

I hope you will keep reading our webites. You can join the rest of us who have fired our specialists and found compassionate PCPs who are helping us recover our health with the MP.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: norman wetmore (---.client.dsl.net)
Date:   06-06-05 13:15

Hi,
Sorry ..I posted a question in the latest archived questions by mistake ! Sorry about that. Could you please redirect it ?
Thanks,
Norman

dx sarc 1992, keveim test, nasal and skin biopsies. Lung , skin, both eyes, spleen, extreme nasal and thoat involvement, and prob cardiac. 10/2003 d levels were 68/31. 4/2005 d levels 40/8. Started phase1 5/05.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-06-05 13:24

Author: norman wetmore (64-145-52-61.client.dsl.net)
Date: 06-06-05 11:41

Hi Belinda, Meg, Lottie, et al........

i was wondering how much longer I should continue with Phase 1 before I started Phase 2. Just to recap.....

When I was 17 took Minocycling for acne...on it for (as I recall) 6 months to a year - no problems.

When I was 25 I got what I now believe to be a sarc nodule on finger. At the same time I was put on tetracycline. I took 2-3 pills and had a REALLY bad reaction ! I had probs breathing, my ENTIRE...and I mean ENTIRE body was covered with tiny clear blisters.....took some allergy medecine and it went away...I'm sure it was a herx response though

Started Phase 1 a year ago or so and had no probs with M - no real bad herxing that I could detect. Started Phase 2 and had HUGE prob with not following the doctor's orders ! LOL Stupid me ! Now I know better. I had to stop because of my shoulder prob / surgery, etc

Now I am back on the MP (yeah !!!!). So far I have taken 2 times (x) ( eod) 25mg, 2x 50mg, 3x 75mg and 2x 100mg. I have not had any problems really. I am taking the M the right way...1 x eod


So....while wanting to go to phase 2 asap, but respecting Dr. Marshall and alll of you, I wanted to ask you what you think I should do.

Also...some of my M is a year old. CVS pharmacy said it should still be ok.

Thanks for everything!

Norman

dx sarc 1992, keveim test, nasal and skin biopsies. Lung , skin, both eyes, spleen, extreme nasal and thoat involvement, and prob cardiac. 10/2003 d levels were 68/31. 4/2005 d levels 40/8. Started phase1 5/05
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-06-05 21:55

Hi Norman!

I'll send you the questionnaire for phase two, so we can be sure you're ready to move up

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-07-05 14:10

Author: Gail Cantave (adsl-64-108-200-182.dsl.chcgil.ameritech.net)
Date: 06-07-05 05:46

I read on the net that sarc patients will die 10 to 20 years even with treatment or with out it. I am afraid as I have a friend to die of this. I have others telling me that they have sarc as well. In your opinion is this true?
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Jeremy (---.misawa.af.mil)
Date:   06-07-05 16:28

Just recently I've been experiencing severe tiredness and disorientation upon waking and it is extremely difficult to open my eyes for about 15 minutes after waking; it feels as if they're glued shut. And I am waking up too early. The fatigue lasts throughout the entire morning and into the afternoon. Could this sudden onset of fatigue and insomnia be an indication of a flare up of my sarcoidosis? Is it possible for a person’s sarcoidosis to flare up while taking prednisone?

Thank you,

Jeremy

Dx-Pulmon. Sarcoid (stg II) Oct04. Init: Weight Loss(40lbs), Fatigue, Cough, and CP. Diag: X-ray/HRCT/Biopsy. Treat: Pred. Taper(Jan 05)40mgx2wks/30mgx2wks/25mgx2wks/15mgx6mos. Now off pred. Symptoms returned Dx-stg III (stable) Feb06. No treatment.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Jeremy (---.misawa.af.mil)
Date:   06-07-05 18:59

One more question, I tried to do the research on my own but couldn't find anything about it. I have a problem with my feet and I don't know if its related to sarcoidosis or prednisone. My feet have been itchy, burning and peeling like there’s no tomorrow. I can't put and lotions on them because it only further irritates them and itches more. The peeling however is out of control.

I have Ichthyosiform scales on my shins that the dermatologist says is related to my sarcoidosis and I wonder if the flaking of my feet be a form of Ichthyosis as well?

The Dermatologist said that I have Candida on my upper torso, back and arms from the prednisones effect on my immune system, could the foot thing be caused by Candida?

I am skeptical however that the bumps on my back are caused by Candida however because the ointment that the Dermatologist gave me for it has done nothing and the bumps really look like small Sarcoid nodules.

Dx-Pulmon. Sarcoid (stg II) Oct04. Init: Weight Loss(40lbs), Fatigue, Cough, and CP. Diag: X-ray/HRCT/Biopsy. Treat: Pred. Taper(Jan 05)40mgx2wks/30mgx2wks/25mgx2wks/15mgx6mos. Now off pred. Symptoms returned Dx-stg III (stable) Feb06. No treatment.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Tom Rogers (---.twcny.res.rr.com)
Date:   06-07-05 19:02

Hello all,

I am still on Phase I (50mg) this is my 4th week. I am wondering a couple of things...

1) Is Prilosec OTC ok to take while on the MP? It's once a day for 14 days. Since it inhibits the proton pumps, it will cause everything to be slower in assimilation - any problems with MP? (I am going to try this cause I think #3 below may be GERD)

2) I am on the look out for any cardiac herx (not dx'd with cardiac sarc, but still wonder), which I have not had so far. But in order to tell the difference between heart disease and herx, I have had an echo (normal), chest x-ray (normal), ekg's (normal), physical stress test (normal), event monitors (normal - beside PACs here and there), Total Chol 114, LDL 70, HDL 24, overweight but not obese, I move around at least 30 minutes a day, only 40 years old - is it safe to say I have no heart disease? I have not had a cath though - docs say I don't need it. So if any heart issues - do I blame herx?

3) I have been having a pressure feeling in my esophogus from the top of my stomach all the way up to my neck, and on RARE occassions, the swallowing muscles hurt when I swallow (only for a few minutes). It feels like I need to burp but just can't - like gas build up but not in stomach or lower end - only in the esophogus area. It also feels like when you burp, the feeling you have when you only burp half way - it feels like that in my esophogus area. This is VERY hard to explain and I wondered if anyone else has had this type of symptom. It feels worse when I bend my head down and forward, but better when I bend my head back. Also, I notice it much more if I bend over at the waist and kind of crunch my torso forward. When I do burp, it feels better after that, but then seems to build up again.

Finally - anyone else feel like a vampire here? (Avoid the sun like the plague?) Since summerlike weather is here, it is TOO HOT trying to keep fully covered. How do you all do it? I am doing the best I can, but it is very hard.

Take care,

-TRogers

Biopsy Dx Sarc on 1/29/03 - lymph nodes only - 05/03 (SACE - 133, Vit D 1,25 - 35.3, Vit D 25 - 20,) 11/03 (SACE - 49, Vit D 1,25 - 25, Vit D 25 - 17) 1/05 (D,25=10 - D1,25=35 - SACE=34 - CRP=1 - SED = 4) - MP Phase I 5/15/05 40mg B 3x day, 25mg M
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-07-05 19:29

Hello Gail,

Welcome to SarcInfo.com. I sent you some information by email.

I am sorry you had a friend die of sarcoidosis, and you have other friends who have this disease. We've also had friends die of sarcoidosis, and seen other people suffer due to this disease.

It was the researchers who wrote the article "The clinical management of sarcoidosis. A 50-year experience at the Johns Hopkins Hospital" who said end-stage pulmonary Sarcoidosis usually develops over one or two decades.

The widely accepted initial treatment for sarcoidosis is corticosteroids. An initial reduction of symptoms in response to steroid treatment does not, however, preclude progression to pulmonary fibrosis and death.

We know that Reggie White, the famous football star who died of sarcoidosis in December 2004, had a diagnosis of pulmonary sarcoidosis in 1997, when he struggled with his health. We can easily assume that Mr. White received some of the best medical care available, yet he died from sarcoidosis.

We have good news on this website, though. Why don't you suggest that your friends with sarcoidodis join us/you at this website? We will be happy to share with them what we know about sarcoidosis, ways to manage it and how to overcome it. There is a new treatment using widely available medications that is showing amazing and exciting results. It is based on the understanding of the cause of the disease, which is antibiotic-resistant bacteria that are not easily identified in common laboratory analysis.

Many of us here were once disabled due to the symptoms of sarcoidosis and now we have our health, our strength and our lives back, thanks to the Marshall Protocol.

Best wishes,

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Audrey (---.252.148.123.Dial1.Chicago1.Level3.net)
Date:   06-07-05 19:51

I am not on the MP yet,I am still searching . But I have had wonderful results with cutting vitamin d and reducing sunlight. I am off prednisone and MTX for one month now.It has been very difficult without the Benicar. When I cut the Vita-D my cough got so much better!! I have my Noirs and I just have minimal eye pain. Before I had blurred vision and so much pain. I want to be on the MP so much,because all the information here is so on target. I may have to travel out of state to see an MP doc.

One question I have for people who have been on the MP for a while. Do you know of any people who have developed antibiotic resistance for other infections?

Audrey
Dx;Fibromyalgia-1999/Pulmo sarc Dx -02-2004/Prednisone-for 1 year/Mtx for 6-months Pre Mp /severe pain and fatigue/taking Ultracet for pain Hyzaar for HTN.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: nwetmore@b.. (---.cable.mindspring.com)
Date:   06-07-05 19:54

Hi, sorry to bother you. I was trying to find out if it is ok to take asprin on the MP? I seem to be having a bit of chest pain...just taking a precaution. I guess it's a slight herx, but chest pain freaks me out....not clammy or sweating , just a bit of discomfort.

Thanks,
Norman
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-07-05 20:10

Audrey,

People who have sarcoidosis already have antibiotic-resistent bacteria - that's what makes the bacteria that cause sarcoidosis different. The Marshall Protocol was designed with an in-depth understanding of the etiology of the disease, its biochemistry and how antibiotics work.

You will want to read Won't the bacteria become immune/resistant to the antibiotics if I take them a long time?

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   06-07-05 20:11

Audrey,

It would be well worth your time, energy and expense to travel as far as necessary to see a doctor who will help you with the Marshall Protocol. Let us know if you need a list of doctors.

Best,

Meg
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   06-07-05 20:16

Norman,

Please see:

What is a cardiac Herx? When should I be concerned?

You should check with your doctor first before you take aspirin. It is not an innocuous drug. It can have adverse effects.

I see that you are posting under another screen name. This makes it more difficult to keep track of our members. PLEASE add a signature line so that the moderators can answer your questions accurately. If you need help doing this, let us know.

Best,

Meg
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: nwetmore@b.. (---.cable.mindspring.com)
Date:   06-07-05 20:19

Sorry..posting from home which I don't normally do.

Thanks for answering at this hour, but more specifically, is an asprin going to do something bad if I take it now? Scheduled to take another Benicar in a few mins also.

I will add a signature line from this computer as well...thought it would work since I think screen name is same.

Norman
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   06-07-05 20:23

Audrey,
I am pleased to hear you are restricting D and sunlight and ejoying some relief of your symptoms. In your post you mention the symptoms you are having with your eyes. Have you had your eyes examined recently? The symptoms of eye pain and blurry vision can indicate iritis or uveitis. If you would happen to have either, you risk your vision if left untreated. If you haven't done so, I urge you to make an appointment.

Sue Caroline

Sx.95, iritis 96. Pred. to 3-01. Pred., IV Medrol, MTX,neoral end 02, Dx. Neuro w/Cardiac sx, severe hip and hand pain, M-9-02, Benicar 12-02. MP-I Jan. 03. 1,25 D 58. Cardiac, & joint pain resolved w/MP-1. MP-II Feb. 04. Oct. 04, 25D=10, 125-D=34
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Audrey (---.252.148.123.Dial1.Chicago1.Level3.net)
Date:   06-07-05 20:30

Thanks Belinda and Meg.I read the thread you suggested and it answered my question. Meg I am getting finances together to travel to Illinois. All the co-pays I have had to pay and a wasted trip to Mayo Clinic this year have left me financially strapped. I have not been able to work because going off the pred and MTX. left me so ill. I have seen so many doctors tellling me such stupid things. I just wish I had found you guys earlier. No sense looking back though. I will move ahead hopefully on the MP. Thanks you guys are wonderful!!!

Audrey
Dx:Fibromyalgia 1999/Pulmo Sarc 02-2004/Pred for 1yr/MTX 6 months/pre MP/severe pain and fatigue/taking Ultracet for pain/Hyzaar for HTN
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   06-07-05 20:42

Norman,

If you are considering taking aspirin to help your heart, please read this article first.

Best,

Meg
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Audrey (---.252.148.123.Dial1.Chicago1.Level3.net)
Date:   06-07-05 20:46

To Caroline:
Yes I was at the Mayo Clinic in March .They examined every orifice. They said nothing wrong with my eyes (ha),My eyes were red and blurry. I had lost my sense of smell they said nothing was wrong with my nose.(ha) I could not hear out of my right ear they said nothing was wrong with my hearing. They said I was on too much prednisone(duH) and I should keep taking MTX. Said I should come back there in six months. I got a bill for 4,500 $ before I got the results of all the tests.

Sorry they said my eyes had no signs of sarc.

AudreyDX:Fibromyalgis-1999/Pulmo Sarc-02-2005/took Pred for 1 year/MTX for 6 months/pre MP/severe pain and fatigue/taking Ultrcet for pain/Hyzaar for HTN
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-07-05 21:01

Norman,

I am quite sure that I have cardiac involvement. I have been on phase two for several months now, and my last increase started up chest pain, and arrhythmias (PVC's... skipped beats, rapid heart rate, etc) those have been my cardiac symptoms for about thirty or more years, long before I ever knew I had Sarcoidosis and/or anything about the MP. I was diagnosed with Mitral Valve Prolapse around 1978, which I have since learned can be due to the inflammation from Sarcoidosis changing the shape of the opening that the mitral valve is supposed to close off completely.

The chest pain has mostly been mild, with some very "attention getting" episodes, and the arrhythmias... have just annoying as they have been in the past. I'm not ignoring it all, and did let my doctor know about them so that he could decide if we needed to check anything. Everything settled down last week, and I have increased my MP meds to the next level.

Other than that, my doctor hasn't recommended any change in my regular medications.

I'll be honest, it never occurred to me that taking aspirin would change anything for me and my heart. I know that it's the MP that will do that. I did take extra doses of Benicar for a few days when the chest pain was really bothering me, and that seemed to also help settle things down.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-07-05 21:28

Tom,

Even though nothing has shown up on all of your cardiac checkups, you could still have some cardiac inflammation. It could be that there isn’t much, and might not show up on all those tests. I did have inflammation (thickening) show up in my left ventricle wall on an echocardiogram, and lower output, but I have also had cardiac symptoms for about thirty plus years. I suspect that it has always been Sarcoid related. So you, like anyone else could have some cardiac herx, but aren’t as likely as someone who has had a history of cardiac symptoms in the past. You may want to read my reply to Norman, in the above post.

As for the symptoms that you describe in your esophagus, it very well could also be Sarcoid related. Remember that Sarcoidosis is a systemic illness and can affect any and all parts of your body. What you’re describing doesn’t sound like GERD, and I don’t think that taking Prilosec will help. The fewer medications that you take, the better off you’ll be in the long run. I’ve had difficulty swallowing on occasion, and some soreness at times as well.

Yes… I definitely feel like a vampire. I sometimes cringe if I’m switching my NoIR glasses outside… even with my eyes closed! Fortunately, it hasn’t been real warm here, except for a few days, and I haven’t had to be outside much either. If you can wear loose clothing… such as a loose shirt, or even some sort of cape over your clothes, that actually helps insulate against the heat.

Lottie
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-08-05 00:58

Post moved to appropriate thread...

scar found in Lungs during chest XRAY
Author: Pramila Pinto -Kuwait (62.215.3.61)
Date: 06-07-05 23:21

Recently we discovered that a Scar was found on my lungs during a chest Xray.i had undergone an operation for Fibroedenoma,abt(in Jan 2005) 5 months ago and after that 3months(march 2005) ago i got infected with Chicken pox.Kindly help me out of this situation.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-08-05 01:09

Pramila,

Have you had anyone suggest to you that you may have Sarcoidosis? There are other reasons that you could have a scar show up in your lungs on an x-ray.

We deal with helping patients get well from Sarcoidosis and other Th1 illnesses.

If you have reason to believe that you have Sarcoidosis, you are welcome to come back and we will do what we can to help you recover from it.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: diane napoli (---.iad.untd.com)
Date:   06-08-05 07:00

general question on flying.

18 mths prior to positive diagnosis to pulmonary sarcoids I had alot of pain on a flight. I have to leave town this weekend on a flight and I am hesitant. I am off prednisone and all meds, and have been searching for m.d. for 3weeks. Seen 6 who either don't want to take the case or can't see me for 8-10 weeks. My question is, should I go back on prednisone before flying?
My symptoms are a.m. neruopathy, fatigue, chest spasms, short of breath, and increased heart rate with activity. These symptoms have improved with no vit-d foods, Noir's and avoiding sun, and bright lights.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   06-08-05 07:24

Jeremy,

Your increase in symptoms sounds like an exacerbation of your sarcoidosis.. Yes, you can have a flare-up of the disease while you are on prednisone, especially since you've been on a prednisone taper.

The body has a complex mechanism for keeping the pathogenic bacteria out of the immune system. Prednisone destroys this mechanism and bacteria can quickly invade the immune system while a person is using prednisone. It is clinically proven that 78% of patients relapse after trying to ease up their prednisone dose: Outcome in sarcoidosis-the relationship of relapse to corticosteroid therapy. Patients who never took prednisone end up healthier in the long run. Now we know why.

The skin aflliction on your feet is likely to be another manifestation of sarcoidosis. Cutaneous manifestations of sarcoidosis are varied, and one patient can have different types of sarc skin lesions at the same time. Sarcoidosis is a systemic inflammatory disease, so be suspicious of sarcoidosis if you have a skin problem and you've already been diagnosed with sarcoidosis. You can find more information and lots of pictures of skin sarcoidosis (to compare with your rashes) in the thread "Skin Sarc, What Does it Look Like?"

Best,

Meg
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Alan Barker (193.34.231.---)
Date:   06-08-05 08:15

Hi,

Just a question.

Are there any drugs that can stop the advance of fibrosis in my lungs or even reverse it ?


thanks,

Alan

Diagnosed with Sarc thro' lmyph biopsy in Jan '05. I don't have blood results in the UK. I started phase 2 in october '04. Currently 40mg olmetec 4 times a day. Minocyclene 100mg every other day. phase 2 for 8 months
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Tom Rogers (---.twcny.res.rr.com)
Date:   06-08-05 10:13

Lottie,

Thank you for your answer, but I think you misread my post. I was actually referring to the MarshallProtocol.com thread about Cardiac Herx. It says to make sure you do not have regular heart disease first, then you can be assured that any heart related symptoms can be herx.

I had all heart tests done (all came back fine) but a cath, so my questions was, is it safe to assume that I do not have normal heart disease? So if I get any heart symptoms while on MP, it is herx from undetected cardiac sarc?

Thanx - BTW, I loved the DVDs on the Chicago conference. My wife thinks I am a freak for covering up so completely when outside, but I have to do what I have to do.

Take care,

-TRogers

Biopsy Dx Sarc on 1/29/03 - lymph nodes only - 05/03 (SACE - 133, Vit D 1,25 - 35.3, Vit D 25 - 20,) 11/03 (SACE - 49, Vit D 1,25 - 25, Vit D 25 - 17) 1/05 (D,25=10 - D1,25=35 - SACE=34 - CRP=1 - SED = 4) - MP Phase I 5/15/05 40mg B 3x day, 25mg M
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-08-05 12:11

Alan,

Sarcoid inflammation can eventually lead to damage of the walls of lung's small airways, alveoli (air sacs), small blood vessels and supporting sturctures. The ideal way to stop the disease is to treat the root cause, which will stop inflammation and therefore fibrosis.

The Marshall Protocol is the first therapy that has proposed to treat the cause of sarcoidosis.

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: norman wetmore (---.client.dsl.net)
Date:   06-08-05 13:04

Hello again all,

Well, at the risk of beating this subject to death..and all of you beating ME to death for asking so much, I'll ask again....a slightly different way...

I understood the literature and research on the Benicar to suggest that the BP lowering effects on the systolic and diastolic were in the neighborhood of 10 - 20 points. I used to have bp in the neighborhood of 136 / 85 give or take a few points. I started the benicar and my bp was kind of stable around 100-110 / 60-70. However in the last few days my bp has been much lower...in the order of 80/50 and this is really bothering me.

Besides the possibility of passing out, is there any other dangers associated with low BP (heart attack, stroke, etc )???

I'm due to take another pill, and I really and truely believe in this protocol...I will continue, but this problems seems to be nagging me.

Would 20 mg every 4 hours work any better for me ?

Thank you sincerely,
Norman

dx sarc 1992, keveim test, nasal and skin biopsies. Lung , skin, both eyes, spleen, extreme nasal and thoat involvement, and prob cardiac. 10/2003 d levels were 68/31. 4/2005 d levels 40/8. Started phase1 5/05.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: norman wetmore (---.client.dsl.net)
Date:   06-08-05 13:07

ps...meant to also say that the lowering seems to be more prevelant since I started the M for some reason ..only a feeling , but maybe there is not a correlation.

Thanks ,
Norman

dx sarc 1992, keveim test, nasal and skin biopsies. Lung , skin, both eyes, spleen, extreme nasal and thoat involvement, and prob cardiac. 10/2003 d levels were 68/31. 4/2005 d levels 40/8. Started phase1 5/05.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Alan Barker (---.access.as9105.com)
Date:   06-08-05 13:54

Belinda,

I know the aim of the MP is to fix the cause but this can take several years to address. In the meantime permanent damage is being caused to my lungs.
So are there any drugs that can stop the advance of fibrosis in my lungs or even reverse it ?

thanks,

ALan

Diagnosed with Sarc thro' lmyph biopsy in Jan '05. I don't have blood results in the UK. I started phase 2 in october '04. Currently 40mg olmetec 4 times a day. Minocyclene 100mg every other day. phase 2 for 8 months
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-08-05 14:03

Tom,

Yes, is it safe to assume that you do not have normal heart disease. So, if you get any heart symptoms while on MP, it is most likely herx from undetected cardiac sarcoidosis.

That is what I meant when I said... "Even though nothing has shown up on all of your cardiac checkups, you could still have some cardiac inflammation." I should have added, "because of Sarcoidosis".

It is definitely something to be aware of. If you should have cardiac symptoms, or other extreme form of herxheimer while on the MP, you may need to increase the Benicar to 40mg every four hours. You should discuss that possibility with your doctor as well.

Hope that helps.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-08-05 14:17

Norman,

Low blood pressure is a result of the disease, not the Benicar. You’re right, there is probably a correlation with your taking the minocycline. Your low blood pressure is probably a herx.

My BP has been running 90-100/60 for many weeks now, and I just increased one of my antibiotics on Monday. I just got back from my doctor’s office. My BP was 70/40. Made him more nervous than it made me. I mentioned to him that it tells me that the “darn” bugs were being killed.

Hope that helps you. If not, I know you know where to find us.

Lottie
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-08-05 14:36

Alan,

One of the primary medications that is used on the in the Marshall Protocol, is the ARB with the brand name, Benicar. It serves two purposes. It helps the immune system to locate, and kill the cell wall deficient (CWD) bacteria. And, it is also useful in protecting the body’s organs from damage resulting from inflammation. It should help protect your lungs from further damage while you are recovering on the MP.

This FAQ on our sister site may help you understand that it is being used even for patients not on the MP to protect organs.

Where can I learn about Benicar used for applications other than anti-hypertension?

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-08-05 14:44

Norman, Alan, and Tom,

Here is more information about Benicar that may be of interest to you...

Does Benicar cause dizziness?

How does Benicar work? Why is it superior to other ARBs?

My blood pressure is already low. Can I take Benicar?

When and why should I vary my Benicar schedule?

Lottie
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-08-05 14:53

Diane Napoli,

I wouldn't go back on Prednisone if I were you. It may not help, and it will allow more bacteria to flourish unimpeded while you are on it.

Continue to be diligent about vitamin D foods, and covering up. If possible when you get on the plane, try to get a window seat in the front row, and close the windows. That will help reduce some of the light that you receive.

I hope that whereever you're going, that you will be able to cover the windows there as well.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Question about biopsy
Author: Sheila Brown (---.dyn.grandenetworks.net)
Date:   06-08-05 15:02

Hello
My pulmonologist told me that I might have sarcoidosis based on chest x-ray and CT Scan. No biopsy was done.

For the past 6 months, I have been having neuro symptoms - paresthesis, dizziness, etc.. My neurologist did a brain scan and saw white lesions that he said are usually normal for my age (40 year old female), but because I might have lung sarcoidosis, he couldn't rule out neurological sarcoidosis. He told me to get in touch with my pulmonologist to discuss a biopsy to confirm sarcoidosis. I've been trying to either make an appointment or get a telephone consult with my pulmonologist for 2 months. I have some questions before I get a biopsy:
-- If my lung biopsy is postive does that necessarily mean that the brain lesions are neuro sarco?
-- If my lung biopsy is negative, does that necessarily mean that the brain lesions aren't sarco?

Also, my neurologist suggested a skin biopsy. If I don't have any sarc lesions on my skin, is a skin biopsy any good?

-- What are the false positive and false negative rates for lung biopsy
(my ACE levels are normal)
--


Thanks
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Jeremy (---.misawa.af.mil)
Date:   06-08-05 17:36

Dear Meg,

Thank you for your response. Do you think that even without the display of pulmonary symptoms i.e. cough and difficulty breathing (except upon physical exertion) my sarcoidosis could be getting worse? I can definitely tell that something is increasingly affecting me because I am so tired in the morning and my eyes hurt from pressure and the strain of being open. Even more so than when I was initially diagnosed.

Thank you,

Jeremy

Dx-Pulmon. Sarcoid (stg II) Oct04. Init: Weight Loss(40lbs), Fatigue, Cough, and CP. Diag: X-ray/HRCT/Biopsy. Treat: Pred. Taper(Jan 05)40mgx2wks/30mgx2wks/25mgx2wks/15mgx6mos. Now off pred. Symptoms returned Dx-stg III (stable) Feb06. No treatment.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-08-05 18:12

Jeremy,

Always remember that Sarcoidosis is a systemic disease. Most of my symptoms have not been related to my lungs. Having difficulty breathing, even if it's "only" upon physical exertion is a symptom of Sarcoidosis. You also have chest pain listed in your signature line. That could be from coughing, but it also could be due to cardiac inflammation caused by Sarcoid.

Weight loss, and fatigue are symptoms of Sarcoid. I also hope that you have seen an ophthalmologist, and are having your eyes checked routinely. The eyes can be affected as well, and it is very important that they are checked at least annually by a doctor.

Have you read all the symptoms of hypervitaminosis D?
HYPERVITAMINOSIS-D SYMPTOMS
They're pretty much the same as those of Sarcoidosis.

I had worsening symptoms, especially cardiac, while I was on Prednisone. An echocardiogram confirmed that things were worse than they were before I started Prednisone.

Believe me, things can and will get worse while you are on it. Many doctors might suggest that you increase the Prednisone. I hope you don't consider doing that. As you have probably have learned from this site, the bacteria flourish while on Prednisone, since the immune system is totally stopped from killing the bacteria. I hope that you will wean from Prednisone instead and start the MP. Benicar is very helpful with weaning from Prednisone.

If you haven't read this already, it also made it easier for me to wean from it.

Weaning from Prednisone

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-08-05 18:49

Sheila,

Welcome to SarcInfo.

You can easily find out if you have a Th1 illness that can be treated by the Marshall Protocol, without going through a biopsy. A simple blood test for your D-metabolites will let you know if you have inflammation indicating a Th1 illness. Your neurologist or your primary care physician can have these tests run, and they can also treat you with the MP.

Sarcoidosis is a systemic disease, and can affect any and all parts of your body. If you look at the list here, you will see that you can have neurological symptoms even if the lesions in your brain are not Sarcoidosis. While you're there, check and see how many of the symptoms seem familiar to you. HYPERVITAMINOSIS-D SYMPTOMS

A skin biopsy without lesions would probably not show anything.

I can't tell you what the false positive and negative rates for biopsies are. Many people with Sarcoidosis have normal ACE levels, even though they have been diagnosed with Sarcoid with a biopsy. I'm one of those. I also have neurological symptoms, and don't have any physical reason for them.

I will be sending you further information by email.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: anne r (---.bowie01.md.comcast.net)
Date:   06-09-05 10:40

Has anyone written a sample letter for doctors to send to disability insurance companies -am out on disab, leave for first weeks of MP and have gotten sick with kidney inefficiency - taken off protocol temporarily dr will need to explain reason for disabil leave. too sick to finish this - any suggestions pl
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: norman wetmore (---.client.dsl.net)
Date:   06-09-05 11:27


Hi all ! Lottie you were RIGHT !! (just thought I'd say that again!) Here's a link stating some of the J-H symptoms, and sure enough hypotension is listed right there! Hope it goes through.

Just out of curiosity, how would one know if one was having an allergic reaction to an antibiotic instead of a J-H response w/o lab tests?

THANK YOU !! THIS has made me feel worlds better ! I stopped the M (supposed to take it today) and guess what....BP is going right back up again PROVING that it IS NOT the benicar (just like you said) but rather a J-H response from the M. I never realized it could just wipe you out and lower your bp becuase I never had any other symptoms with the M. I'm going to prove this to myself for the next couple of days by skipping the M, then I'm gonna go a bit slower !

THANK YOU !
- Norman

dx sarc 1992, keveim test, nasal and skin biopsies. Lung , skin, both eyes, spleen, extreme nasal and thoat involvement, and prob cardiac. 10/2003 d levels were 68/31. 4/2005 d levels 40/8. Started phase1 5/05.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-09-05 14:28

anne r,

Disability insurance deals with leave in terms of the illness or injury involved (not any specific treatment). So, your disability leave is all related to your chronic illness, and it sounds as if your kidney inefficiency would simply be another facet of that illness. Your doctor's office should know how to deal with any insurance issues, even those dealing with disability, and they are the ones most familiar with your case. If you have any concerns, check with them.

Best wishes,
Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-09-05 15:14

Author: Julia (dsl-80-43-192-213.access.as9105.com)
Date: 06-09-05 14:58

Does anyone know what's happened to the film of last year's CFS conference that used to be at http://www.documentary-film.net/marshallprotocol.torrent ?
It keeps giving me error messages. I never managed to download it all with my old dialup connection, and now that I've got broadband I can't find it!

Julia

Belfast, UK. Sarc dx Spring '03. No D tests. Light/Vit D restriction 8/03, Mino 2/04, +Benicar 5/04. Phase 2 from 8/04, Phase 3 from 11/04. Benicar 4x40.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-09-05 15:21

Julia,

Alas, the internet changes daily.. maybe even by the hour.

I am sorry you missed the video clip, but it looks as if it is no longer available at that address. If we hear that someone is hosting that video clip on the internet, we will let you know.

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-09-05 19:51

Norman,

I'm glad I was right, and thanks for mentioning it

From one of your earlier posts, you said that you had already gone up to 100mg of mino every other day. You are also right in that it sounds as though you need to go slower. I think you realize how, but just in case...

You probably want to drop the amount of Mino to 50 or at least 75 mg every other day for a bit, and stay at each level a bit longer. Now that you know that it's the Mino, you'll have a better idea of how to proceed with each level.

Sometimes, you may still have some of the "BP herx" if a larger number of bacteria than usual are exposed and are killed. That can happen when you start a higher level, or even if you've found a level which doesn't seem to cause you any problems most of the time. Don't let it worry you, just be aware.

I'm glad you were able to find out what the culprit was. In reality, it's the "darn" little bugs!! But, the good part is that it means you killed a bunch of them!!!
Congratulations!!!

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Beverly Vickers (69.15.197.---)
Date:   06-10-05 06:44

Belinda: I have had a set back this past week. Not sure if it was the increase of Minocycline to 100 mg every other day (only a few days) or not being cautious about the sun intake. Anyway I am developing a serious sinus infection that is draining into my chest. Want to know if I can get off the minocycline for a short time and take another antibiotic while still on the Benicar. I have a fear that this will develop into another serious asthmatic condition if left unchecked.

Thanks
Bev
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-10-05 09:10

Beverly,

Increasing minocycline so fast that Herxing becomes intolerable may be part of the problem.. but so is the issue of sunlight exposure!! I realize that it's very difficult to restrict sunlight exposure in a place as sunny as Texas, but it can be done.

If sarcoidosis patients are not cautious about restricting sunlight exposure, then sarco-sinus inflammation can flare, restricting small areas in the sinuses and allowing infections to take hold. Staying away from sun and bright lights will give you a much better chance of avoiding sinus infections.

Here are some answers to FAQs that should help you:
Why is my 'herx' more intense after exposure to Light &/or Vitamin D?
My Herxheimer reaction is too strong. What should I do? This FAQ has detailed options for handling a strong Herx.

Anxiety and fear can be part of the Herxheimer reaction, too.

Sarcoidosis usually causes problems breathing enough air IN upon inspiration. It is possible that inflammed airways and lymph nodes in the chest can cause obstructions that result in symptoms similar to asthma (not being able to breathe OUT), when they are really due to sarcoidosis. During an asthma attack it is harder to breathe OUT than it is to breathe in.

You may be able to get this under control by severely restricting sunlight exposure and adjusting the dosing of your meds, as suggested in the FAQs above. Be sure to discuss any dosing changes with your physician. If s/he senses you feel able to manage this Herxing episode, s/he may decide those adjustments may be all that is needed.

If your doctor wants you to take a course of another antibiotic, you will need to stop taking Benicar. Detailed suggestions to accomplish this are in I need to take a different antibiotic for awhile. What should I do?

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-10-05 09:30

Bev,

Many of the people with Sarcoidosis have had a long history of sinus infections, and/or have been diagnosed with asthma. They didn’t really have asthma, they had Sarcoidosis. I was one of them. And, as I’ve gone through the MP, as part of my herx, and the few times that I’ve gotten more sun than I should, I’ve had major sinus congestion, and wheezing. With the sinus congestion I also had some dizziness, and vertigo. The last time, I had a lot of lung congestion as well, and was coughing a lot.

There are two possibilities. It’s possible that you are having a herx to the increased minocycline, or you’re having a sun flare. My guess though is that if you aren’t being extremely careful about avoiding the sun, then you are probably also having symptoms of a “sun flare”. It will make you feel awful, and can also increase symptoms that you have.

I know it can be difficult for people to stay out of the sun, especially during the summer, but it is very important while you are on the MP, especially during the first year or so. I hope that you will spend the next several weeks, diligently avoiding the sun, and see if you improve. That will probably also help you to understand the importance of avoiding the sun. It only takes a few minutes of sun exposure to cause problems.

If you should decide to take another antibiotic, you must stop the MP and wait forty-eight hours before you start the antibiotic. This link will take you to more information about doing so, and you should be sure to read it.

I need to take a different antibiotic for awhile. What should I do?

I hope you will work at avoiding the sun first, and see if that helps. It does make a difference.

You also need to add a signature line to help the moderators answer your questions.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-10-05 11:18

Ketoconazole Cream 2% Questions
Author: Elizabeth Isenburg (cache-dtc-af10.proxy.aol.com)
Date: 06-10-05 11:02

Ketoconazole Cream 2%

Ok, I’ve heard I could use this cream to exposed areas when I am outside. I can’t find any info on the Food & Drug Site or their web site answering the following questions:

1. How soon do I have to apply before I am in the sun?
2. How long can this cream effective? How soon do I have to reapply.
3. How much is an overdose and how would I know I am having an overdosing reaction?
4. What if once in a great while I wore it on my legs, full arms?
5. Does this cream wash off with hand washing? Is it water proof at all…..could it be applied and then I put waterproof sun screen on?
6. There is a 2% Ketoconazole shampoo (prescription) and does that decrease exposure and if so how long?
7. There is a pill form, does this prevent sunlight from being absorbed in the body?

I understand ketoconazole comes in a foam now, but my pharmacy doesn’t carry it. It’s suppose to be better for applying. I like to swim in my pool and so I have been wearing my scuba suit with hood, gloves and booty. With my 2% glasses. I can pull my hood over my nose and month, but if I could get a water proof cream then I wouldn’t have to do this. I have not started the MP yet, but am gearing getting everything ready. Blood was drawn this morning. Thanks for answering my questions and my doctor hopes this works so he can get his other patients on this.

Lyme Disease since May 2004.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-10-05 11:44

Elizabeth,

Welcome to SarcInfo.

Please go to this link in the FAQ section of our sister site MarshallProtocol.com.

How does ketoconazole cream work?

I will send you additional information via email

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury

Elizabeth,
The emails I tried to send wouldn't go through. Would you please check and be sure it's correct? And, please write a new post so that the moderators will have access to your email. Thanks, Lottie
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: anne r (---.bowie01.md.comcast.net)
Date:   06-10-05 21:20

Belinda and all-Thank you for responding to my question about the disability letter, etc. I was feeling so bad when I wrote it that I didn't make sense. There are more serious questions that I now have and admittedly I need to read some more about benicar and the kidneys.

I have been home on short term disability since May 13 to give myself the best chance of getting through the herx response as I began the MP - began benicar on May 13 and the minocycline 2 weeks later,

This past Sunday I ended up in the ER - had extremely swollen left leg and infected big toe - moderate swelling in other leg - called my new dr who I found at the conference in March and he said to go to ER immediately in case it was a blood clot. Test from er showed no blood clot but high creatinine - 4.6 when mine is usually 1.1, so I was later told. They told me to follow up with my dr the next day.

The next day I was totally out of it - did not even realize the day passed until my husband returned home and found out I had not called the dr. Called him and got appt to see my GP the next day - he and my mp dr are working together even though the gp would not administer the protocol - the mp dr lives further away and all my other medical needs are centered in another city/hospital. My gp said that my kidneys were getting ready to shut down - he and the mp dr had already said to stop the benicar when they learned of the swelling in the leg. He sent me home with an antibiotic - omnicef - told me to take 1 a day and have my blood drawn each day to see if the creatinine level would come down - told me to elevate my leg and to walk around but not sit for over 30 minutes at a time.

Yesterday the count was 2.6 and today it is 1.5 so the dr is happy and so am I about my kidneys and now feeling better - I was so out of it just 1.5 days ago - now my gp is talking like I will never take the benicar again and that we tried the protocol but it did not work. I still have to talk to my mp dr but he already told me that we would have to wait awhile before trying the mp again and would probably have to do it much slower.

I am totally confused and disappointed but not giving up on the mp because I do not know enough yet to know what happened to me. I am looking up articles and trying to find out what experiences others have had on the website, etc. I don't know how to proceed with the short term disability as my employer is expecting me back soon. Any light that you can shed on this is appreciated as right now I am not taking benicar or minocycline - am still eliminating vitamin d in all forms and careful of the sun, wearing my noirs, etc. My current bothersome symptom is a rather intense pain and extreme soreness on the right side under the right breast and through to the top and mid back on the right - feels like a knife in my back - dr checked it today by just looking at me and said if it gets worse to get a sonogram but he thinks that the kidneys almost shutting down threw off the rest of my system and it has to take time for the environment to get back to a more normal condition.

I also have been having many more of the jerks that have been a mainstay of the sarcoidosis since I first was diagnosed - am having jerks every minute or so to the extent of breaking 2 computer mice by them being thrown to the floor by my hand jerking beyond my control - also knocked myself in the head with the telephone 3 times - I know this sounds crazy, but it is what is happening - have never had any seizure related problems - this is all since the sarc.

Any knowledge that you can share about what might have happened to me is greatly appreciated. Through all of my extensive reading on the website and from the conference, etc, I h ave not read much about the kidneys related to benicar, etc. Thank you.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-10-05 22:24

Anne R,

The following document on our sister site MarshallProtocol.com should help you and your doctors understand what happened. There is also information referenced there that you can print and take to your doctors. I know that my kidney function tests went up when I started on the protocol too. It did settle down though.

My kidney function tests are worse since I started the MP. What should I do?

Among other things, Benicar is used to protect the kidneys in patients with diabetes. Here is more information about Benicar…

Where can I learn about Benicar used for applications other than anti-hypertension?

Remember that Trevor does accept calls from physicians. His number is on the documents in the Physician’s Tutorials at the top of each of the SarcInfo.com pages. There is also a thread on MarshallProtocol.com for medical professionals only that they can post on which is closed to public viewing. Meg and Trevor moderate that part of the forum. They would go to Marshall Protocol.com, and then click on the link for…
Private Section for Medical Professionals

The pain you're describing could be due to inflammation in that area. The liver is in that area, and can also be inflamed due to Sarcoidosis.

Hope that helps you out, and that you feel better. It sounds as though your MP doctor is willing to work with you.

Lottie

PS... please add a signature line to your profile, so that the moderators will have information readily available to help answer your questions

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Sue from St. Louis (---.dsl.stlsmo.swbell.net)
Date:   06-12-05 11:33


My Prednisone is finally down to 3.5 mg a day thanks to the MP withdrawal protocol. I've been on and off 50 mg. of Minocin for almost 2 years while I've gone from 10 to 3.5 of Pred. This week the
Dr. and I decided I should stay at 3.5 Pred. and increase Minocin to 100 mg. I took 100mg Mino on Wed. night. Over night on Thurs. and all day Friday I had Herx. I don't know how to judge how bad it was. Every joint hurt, skin crawling and itching, muscle aches, night sweats, restless leg synd., stomach upset, depression. lethargy, lack of concentration, and inability to think straight. I took 100 mg. again on Friday night. Not much Herx on Sat. but a little more on Sunday (mainly joints hurt and tired). How do I judge the Herx? Is the next step to increase Minocin to 200 mg. or go on to Phase 2 (There seems to be different suggestions on the Sarc and MP sitres)? Or do I stay on Phase 1 for 3 months even though I've been off and on the Minocin for a year? I've been on Benicar qid since Aug. 27, 2003 weaning from 10 mg Pred. to 3.5 now. Have I screwed up the treatment since it's taken so long to wean from the Pred. with the help of Benicar. (started Pred. Feb. 1995 at 100 mg a day)?

Thanks for any help you can give.
Sue from St. Louis

Thanks so much,
Sue in St. Louis
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   06-12-05 12:42

Sue,
The Protocol has changed and been updated, no longer is 200mg of minocycline recommended. Please read and also print a copy of the revisions here: Phase I. I will be sending a questionnaire for you to complete for moving on to Phase II.

I must ask you why you have not weaned from 10mg of prednisone in two years.

Herx is an exascerbation of your sarcoidosis symptoms, sometimes this will include new symptoms. Here is the link to the Marshall Protocol FAQ's (Frequently Asked Questions). This will most likely answer all of your questions regarding herxheimer response.

If you need further help, just ask.
Sue Caroline

Sx.95, iritis 96. Pred. to 3-01. Pred., IV Medrol, MTX,neoral end 02, Dx. Neuro w/Cardiac sx, severe hip and hand pain, M-9-02, Benicar 12-02. MP-I Jan. 03. 1,25 D 58. Cardiac, & joint pain resolved w/MP-1. MP-II Feb. 04. Oct. 04, 25D=10, 125-D=34
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-12-05 14:28

Sue,

I'm sorry you're having so much trouble. Minocin is never taken above 100mg throughout the entire Marshall Protocol. After you reach 100mg of Minocin, and are not having problem with herx, other antibiotics are added. And, you need to be off of Prednisone to advance to phase two. If it is found that you are unable to wean off of Prednisone because your adrenal glands don't start functioning at all, then you need to get down to the lowest dose that you are able to.

I'm not sure why you restarted the Minocin before you completed weaning of of Prednisone, but as Meg had mentioned to you in September, you need to stop the Minocin, and finish weaning off of Prednisone. One of the things I will always be grateful to Trevor for is strongly suggesting that I wean off of Prednisone before I started the Minocin. He told me that I really wouldn't want to have to deal with the issues involved with weaning off of Prednisone, while I was also having herx from the bugs being killed. He was right. Just coming off of Prednisone was quite enough to start, and deal with.

You really won't lose much time, because as you wean off the Prednisone your immune system will kick in more and more, and you will probably be killing some bugs at that time as well. You're in the range that your immune system should be "waking up" more and more.

You need to remember is that for the MP to work properly, you do need to get off of the Prednisone in order for your immune system to function at it's best. The Benicar helps reduce the inflammation, helps the immune system to find the bacteria, and protects the body's organs. Remember, that in the MP, the antibiotics are supposed to work WITH your immune system to kill the bacteria. They are "assistants", and not the main killing factor in the MP. Your immune system carries the big guns, the antibiotics provide extra ammunition.

You are obviously having way too many problems dealing with weaning off of Prednisone, and the additional problems of herx. So, you really do need stop the antibiotics, and get off of Prednisone. The worst pain that I had was the ten days after my last dose of one-half milligram of Prednisone. So don't plan on starting the Minocin until after your body has recovered from getting off of the Prednisone. I had some symptoms of herx while I was weaning off of Prednisone, so be aware that you could still have some herx even without the Minocin.

Are you also still avoiding vitamin D, and sunlight? Wearing your NoIR's inside and out, etc?

I hope that you will post more frequently to keep us informed of your progress as you wean off of Prednisone, and any problems that you may have along the way. Then we can help you with suggestions.

It will also help us if you add a signature line so that the moderators will have an easier time answering questions. It will appear each time you post. I will send you information on creating one.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lynne Guimond (---.citenet.net)
Date:   06-12-05 19:50

Hi Belinda;
I really need your advice.Tomorrow a T.V station is coming to interview me and do a story on my greenhouse and orchid growing.I live in our capitol region where a lot of big gun s live(government people)As I have mentioned before I am doing very well considering they told me I would be dead from SD a few years ago.Thanks to your site I dropped all dietary vit.D and was able to get off methotrexate in 5 months.Have not even needed it at all since Feb.
The T.V. people always ask personal questions and I hope to be able to plug the MP.They will notice that I am totally dressed in long slacks,blouse and hat despite the 95degree heat and 86% humidity....off course they will be curious.How do I explain the vitaminD thing in 30second or less??? Because of my work in a greenhouse 10 hours a day they will notice that I do have a tan on my face and hands and will probably ask more questions.Nor can I wear Noirs as I have to be able to see spidermites,aphids etc. and only wear polaroid glasses.I am doing extremely well on 100mg mino every other day and only have a little stiffness in the morning and all skin issues were resolved earlier by the methotrexate.Benicar will be available at 1 pharmacy in a few weeks and then I will have to change my strategy.
I really have to be able to mention MP and give a short explanation in less than a minute as a lot of very influential people watch this show. Lynne
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Admin (---.ventca.adelphia.net)
Date:   06-12-05 23:02

Lynne,
Belinda and Meg are attending the conference in Denver this weekend. I spoke with them a few minutes ago, and things are going well

30 seconds really isn't a lot of time!
Really the key thing is probably to say that you were told you were dying a few years ago, but you read medical papers about a special type of antibiotic-resistant bacteria which seemed to be causing these chronic diseases, and, once you understood that your beloved sunshine was part of the disease cycle, and how to find antibiotics which would kill these bugs, you are still alive to do what you love, and to work in your greenhouse making sure that bigger bugs stay away from your lovely flowers

..Trevor..
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Freddie Ash (---.ipt.aol.com)
Date:   06-13-05 05:43

HI ALL

This is Fred in WV. On sunday I was watching the Dora cartoon show and at the end of it they were doing something with a real man and his child and Sue and I saw the man wearing the NoIR glasses. I told Sue that he must have sarcoidosis. Did any one else see it??? I was watching the Dora show with my granddaughter.

Your friend in sarcoidosis
Freddie
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Tom Rogers (---.nys.biz.rr.com)
Date:   06-13-05 11:42

I am on Phase I, 50mg Mino - Week 5 total, Week 2 start of 50mg Mino - I have been herxing somewhat, (my sarc symptoms I have before) as a run down and tired type of feeling, some breathing tightness, some muscle aches and pains, and some dizziness, no PACs though. The MP seems to have stopped my PACs - so are they or are my PACs related to Sarc?

Anyway, I just started noticing once again that my heart beats really fast (170s) and it pounds whenever I do something somewhat physically demanding. I NEVER had this while off the MP, and it has never been a symptom of my Sarc. And it is not herx, as it only happens when I do something physically demanding.

Has anyone had this happen to them, is it normal? It is very bothersome as I feel very restricted in what I can and cannot do. This is the reason I stopped the MP before. And when I stopped - this problem went away.

I just lowered my Synthroid from 50mcg to 25mcg - but I was not on Synthroid the last time I tried the MP.

Thank you,

-TRogers

Biopsy Dx Sarc on 1/29/03 - lymph nodes only - 05/03 (SACE - 133, Vit D 1,25 - 35.3, Vit D 25 - 20,) 11/03 (SACE - 49, Vit D 1,25 - 25, Vit D 25 - 17) 1/05 (D,25=10 - D1,25=35 - SACE=34 - CRP=1 - SED = 4) - MP Phase I 5/15/05 40mg B 3x day, 25mg M
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Elizabeth (---.proxy.aol.com)
Date:   06-13-05 16:47

Lottie,
My email is correct in my profile, but incorrect on the posting site.

Thanks for directing me to the article on the 2% Ketoconazole cream. It sounds like it is a once a day dose and it absorbs in the skin, so it won't wash off.

I have another question, at present I go weekly to a Japanese Accupturist, a deep tissue massage therapist and take sauna's to make my body a hostile place for the bacteria. Can I continue these once on the MP?

Elizabeth

Lyme Disease since May 2004. Lyme Screening 1.14, IgG Reactive on bands 41 and 66, 25-D 16, 1,25-D 41 making the D score 2.56- classic dyregulation of Vit D. Senitive to Milk Protein all my life, no supplements except for 4-6 weeks, no predisone.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Sue from St. Louis (---.dsl.stlsmo.swbell.net)
Date:   06-13-05 18:28

Thanks Lotti and Carolyn for your responses, The reason I've not weaned off al the Pred. completely is that my Adren. glands aren't turning on much at all. I've been on Pred. for 10.5 years and tried under several doctors to get below 8 mg with no success. Being at 3.5 is unbelievable to me. When I talked to Meg in Chicago, she said to go ahead with the MP. Trevor said he'd rather have me off completely, but to go ahead if I couldn't get much lower. I think I've misunderstood or gotton differing opinions from different moderators. I know this is an evolving treatment, so i expect some changes in what the advice is. Trevor talked with my doctor over a year ago and we've followed his advice to this point. We both try to keep up with sarcinfo and MP sites.

Loptti, I created a signature line on the MP site, but didn't realize I needed to do both sites separately. I'll fix that ASAP. My mental confusion is sometimes out of control and my concentration poor. I've had CNS sarc since 1995 or before and my thinking and concentration have been a problem since then.

Here's what I think I will try to do. If the Herx doesn't get any worse, I'll stay on the 100mg of Minocin and Queritin. I'll also continue weaning from the Pred. I now take 3 mg. in AM and .5 mg. around 3:00. I only took .25 mg. at 32:00 today. I'm tired but don't seem to have any other symptoms.
If you think this is the wrong approach, let me know. Thanks,
Sue from St. Louis.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Iris (---.qld.bigpond.net.au)
Date:   06-13-05 19:31

Hi! I have just located this site and would like to ask a few questions if I may. I was diagnosed with asthma and sinusitis in 1985 following the irritation to my airways from stripping and sealing floors for several years without wearing protective breathing masks. I started a new job in 1987 right away from chemicals and my asthma became stable. In 1989 I started in another job which required me to work in a building which was airconditioned above workshops which used chemicals. In 1995 where I worked on the top floor we had a mal functioning aircon and the chemicals from downstairs were circulating through the building which had sealed windows. My asthma and sinusitis were exacerbated requiring me to be hospitalised and administered 100mg of intravenous cortisone 6 hourly. During 1997 I was at my lowest point with the asthma and still at work and then was diagnosed with Sarcoid in the skin and joints but nothing showed up in my lungs. They treated me with further prednisone. I have had several ACE tests since then which show it has not returned. For the past year and a half I have been on continual prednisone with a vist to hospital in Nov 2004 requiring 100mg of intravenous cortisone six hourly for 4 days. I am still on prednisone and in the past few days I have a feeling my sarcoid has come back. I have joint pains, sore lympth nodes in my body, not feeling well, stomach pain, my feet burn and hurt, my toes are the same, my body feels on fire at times and I sweat profusely when this happens. Is it possible it has returned and is taking the prednisone all the time making it worse? No one in my immediate family or other relatives has sarcoid except me. Can the fact that I got asthma and so bad with my body reacting to the chemicals have brought on the sarcoid? I have read a lot of what is published here and found a lot to be helpful. Keep up the good work. Not sure if I make sense.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-13-05 19:49

Elizabeth,

The program for the site won't allow the email addresses to be shown publicly. I'll try again to send you the additional information again.

Do keep in mind that we still don't know the complete picture on the cream, and highly recommend that people with Th1 avoid the sun by staying inside with covered windows, and/or being completely covered up.

If the sauna is infrared, you need to avoid it even now. Heat can also cause an increase your symptoms. Some people have found that massage also causes them to be more symptomatic.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-13-05 22:54

Tom,

Your PAC's could very well be related to your Sarcoid. It is possible for you as with anyone with Sarcoidosis to have undiagnosed cardiac inflammation. The fact that you are having symptoms only on the MP indicated that it is probably herx.

I have had cardiac symptoms in the past, such as rapid heart rate, pounding, as well as chest pain. My echocardiograms indicate that I definitely have inflammation in my heart, and I found that, even after I started the MP, I had to stay on Altenolol which helps maintain a lower heart rate, however, I’ve had recent herx which has still pushed my heart rate up to 160 for periods of time even when I’m not doing anything! A recent Holter Monitor showed that even with various changes in rate, my heart’s rhythm seems to be normal. It also showed that I do have PVC’s or “skipped beats”, but not enough to be a concern.

As suggested in this FAQ, you should let your doctor know what’s been happening, and he is welcome to phone Dr. Marshall for input.

What is a cardiac Herx? When should I be concerned?

I hope that this doesn’t scare you off the MP, in that it sounds as though you do have cardiac involvement. Without the MP the inflammation in your heart will only get worse, as mine did while I was on Prednisone.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-13-05 23:12

Sue,

I know how difficult it is to get so much information from different people. And we don’t always know what each person has been told, especially if the information has been given off the boards.

The sites are “related” but the programs don’t share information. So, when you can, please do create a signature line here as well. I understand the problem with thinking and concentration myself… from personal experience. It can change from one hour to the next, and others don’t always understand our problems with that.

If your herx is bad, you do want to drop back down to Minocin 75mg. With your doctor’s okay, you can increase the Benicar to as often as every four hours to help you with the herx. Don’t take the Quercetin more often than four times a day though.

I believe that you were sent you a questionnaire. It would help us to help you if you will answer the questions and return that to her when you have a chance. If you didn’t receive it, let us know, and we’ll send you another one.

Lottie

 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-13-05 23:41

Iris,

Welcome to SarcInfo.

Sarcoidosis is a systemic disease. It can affect any and all parts of your body. Many people don't have lung involvement, although it sounds as though you have lung involvement. They diagnosed it as asthma though. Many of us with Sarcoidosis have previously been diagnosed with asthma.

We now know that Sarcoidosis is caused by cell wall deficient (CWD) bacteria. Sarcoid does not go away on it's own, and Prednisone is only allowing it to get worse. Since Prednisone shuts down the body's immune system, it allows the bacteria to multiply without anything to stop them.

Many people with Sarcoidosis do react badly to many chemicals, including perfume, and odors from deodorants, cleaning supplies, etc. But that didn't cause your Sarcoid. It is a symptom of Sarcoid.

Your other symptoms are typical of Sarcoid as well. Take a look at the list on the following page, and see how many you can relate to.

Hypervitaminosis D Symptoms

You will need to read as much as you can starting with the tutorials at the top of each page of SarcInfo. The more you know, the more you will be able to help your doctor understand what needs to be done for you to get well.

You can help yourself feel better by avoiding all forms of ingested vitamin D from food and supplements, including vitamin supplements. Primary foods to avoid include egg yolks, fish, fish oil, and fortified dairy products. Read the labels on all foods for vitamin D, and avoid all foods with it added. They're adding it to some orange juice and breads now. So be careful.

Avoid sunlight and bright lights. Cover up completely when you go out. Long pants, long sleeves, hat, scarf, and gloves.

You should also familiarize yourself with this document, take a copy of it and discuss weaning off of Prednisone. It will be much easier if you are on Benicar, one of the Marshall Protocol medications while you are weaning off of it. It will help to reduce the inflammation that will occur while you wean off of Prednisone.

Weaning from Prednisone

I will be sending you additional information via email.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Iris (---.qld.bigpond.net.au)
Date:   06-14-05 00:13

Hi Lottie,
Thank you for responding to my email. When I first got sarcoid I had swellings in my left arm, left hand and left leg. I had nothing on my right side so they did biopies of the lumps which they then came back with sarcoid. I had already had asthma for 10 years before that. How does the CWD bateria enter ones body to cause sarcoid. The last few days I have felt the worst Ive felt in a long time with breathlessness that prednisone doesnt help, codiene phosphate for the hacking cough, and all the other things like sore ankles when the sheets touch them, when I walk I feel like there are lumps in the souls of my feet but when I check I can not feel any. I will continue to read all the inormation on this site and see what my speciualist says. The first diagnoses of sarcoid they gave me prednisone and as Im already on that Im afraid if I had gone to him today they would have uped the dosage. It helps knowing that you are all out there because if im honest right now Im scared of what my bodies doing to me and how I feel. If it doesnt run in my family or any relatives how did I get it? I will printy off all I can so I am armed with enough infor for my specialist to listen to me. Is sarcoid dangerous if left untreated for any length of time? I probally still dont make much sense when putting it in words because I feel lousy and theres no one to turn to for support until now. So thank you Lottie and all that contribute to this site. Should my children watch out for signs of sarcoid and their children?
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-14-05 02:07

Iris,

As I said before, the asthma diagnosis was very likely, actually Sarcoidosis.

It is a bacterial infection, it’s just some very smart little bacteria that have learned how to survive against the body’s immune system. Among other things, they actually hide within it. Here is information on the cell wall deficient (CWD) bacteria explaining that we are exposed to them all the time…

CELL WALL DEFICIENT BACTERIA AND THE MARSHALL PROTOCOL

Your body is actually trying it’s best to defend itself against the bacteria. Inflammation is one of the results of the body trying to defend itself.

They are slow growing bacteria, so it isn’t an “emergency” situation. But untreated, it will only get worse.

Iris stated: “The last few days I have felt the worst Ive felt in a long time with breathlessness that prednisone doesnt help, codiene phosphate for the hacking cough, and all the other things like sore ankles when the sheets touch them, when I walk I feel like there are lumps in the souls of my feet but when I check I can not feel any.”

I definitely can relate. I have had those symptoms since before I was diagnosed with Sarcoid, and I wasn’t on Prednisone. Prednisone only took care of some of the symptoms, and only for a while before I began to get worse.

Just so you are prepared, very often the specialists are the least open to the idea of this new therapy for Sarcoid. You are probably correct that the doctor would consider increasing your Prednisone to reduce your symptoms. Many of us have found that our primary care doctor is the one who is most apt to be willing to use the Marshall Protocol against Sarcoid, and other Th1 illnesses.

I strongly urge you to start avoiding vitamin D, sunlight, and bright lights. It doesn’t sound like much of a solution, but it will help reduce your symptoms while you read, and get ready to approach your doctor. It will also help you realize that the information here is correct. There is a lot of information at this page…

Avoiding Vitamin D and Sunlight, on our sister site Marshall Protocol.com

You will want to have your doctor test your D-metabolites. Instructions for that are here…

D Metabolites Tests

It is a good idea to be aware that your children could become ill with a Th1 illness. Here is a list of diseases that the MP will treat. If they should show signs of asthma, it would be a good idea for them to have their D-metabolites tested. That will show whether or not they have a Th1 illness.
The Th1 diseases are characterized by the generation of Interferon-gamma and with it, 1,25-dihydroxyvitamin-D.

Confirmed Th1 diseases include:
Sarcoidosis
CFS/ CFIDS/ ME/ (chronic fatigue syndrome)
FM (Fibromyalgia)
Chronic Lyme
Rheumatoid Arthritis
Lupus
Diabetes type 1
Diabetes type 2
Parkinsons (based on 1,25-D data again)
ALS (Lou Gerhig's)
Anorexia Nervosa
Psoriasis
Crohn's Disease
Sjogren's
Polymyalgia rhuematica
polymyositis
Bulbous pemphigus
Lofgren's syndrome
…and the list goes on and on

I sent you an email with more information. Did you get that?

Lottie
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Iris (---.qld.bigpond.net.au)
Date:   06-14-05 05:02

Thanks Lottie for your help and answers. No I have not recieved an email from you. Reading your list in the last response reminded me I have just being also diagnosed with steroid induced diabetes while on 100mg intravenous cortisone 6 hourly. That made my sugar levels rise to 17. I also have had several removals of Lukoplakia which they put down to the prednisone. I will talk to my GP when he gets back next week and see if he will start me on the Marshall Protocol which I have printed a copy of for him. I think he will be the best to start with as he listens to me. I have printed off a lot of other things as well and I have passed this information onto another lady who has similar symptoms to me and she is going to ask her Docotor to do the tests also. So we have helped another person through me finding this site and having the courage to ask you questions. Thanks again and I will let you know what happens and when the tests are done so I can let you know what they say. I do have another email address if that one doesnt come through.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Kaye (---.dsl.bcvloh.ameritech.net)
Date:   06-14-05 07:24

Hello all I recently started having stomach pains could that be related to my sarcoid I am taking 40mg of benicar every 8hr and mino at 25mg every other day I also feel foggy and tired I recently was in the hot sun in May in Florida.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-14-05 09:49

Iris,

I have attempted to send you another copy of the email I had previously sent. I know that the email carrier that you are using often directs mail to Spam folders. You may want to see if there is an email in a spam folder there.

The subject heading of the email is "Welcome to SarcInfo". If you don't receive it, you should go into your profile and change your email address to your other one. You may want to check and be sure that it is entered in your profile correctly.

Prednisone has many horrible side effects. If you go to the bottom of the SarcInfo pages there are many papers about these side effects. This is a link to just one of the papers. The John's Hopkins Vasculitis Center: Prednisone Side Effects

Please let me know if you find the email or not.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-14-05 10:00

Kaye,

It is very possible that the stomach pains are related to your Sarcoid. Remember that it affects any and all parts of your body, and it is not umcommon for the digestive tract to be affected. I wouldn't be surprised that you are having herx symptoms there.

I'm sure that your outing in the sun in Florida didn't help your situation any, but your fogginess and being tired are most likely herx. "Brain fog" and fatigue. or feeling tired are very common symptoms of Sarcoid, and you are probably also experiencing them as herx.

Please add a signature line which will appear with each of your posts. It will help moderators answer your questions in the future.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Elizabeth (---.proxy.aol.com)
Date:   06-14-05 20:02

Lottie,
Just wanted to let you know I got your email. I will have my doctor re-check my heart to ensure no Cardiac Herx reaction. My sauna isn't IR and monitor my deep tissue massages. My accupturist is helping my weak functioning of my liver, kidney and speen. He will see marked improvement once I can start the Benicar. In July I have an appointment for any advice from the Yale Lyme Clinic. To the best of your knowledge, have they reviewed the MP?

Elizabeth

Lyme Disease since May 2004. Lyme Screening 1.14, IgG Reactive on bands 41 and 66, 25-D 16, 1,25-D 41 making the D score 2.56- classic dyregulation of Vit D. Senitive to Milk Protein all my life, no supplements except for 4-6 weeks, no predisone.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-14-05 20:21

Elizabeth,

I'm sorry, I don't know if the Yale Lyme Clinic knows anything about the MP, or if they do, if they are implementing it.

Very often specialists are less open to the new ideas of the MP, although it seems that lyme doctors are more open to it.

Keep in touch, and let us know how you're doing.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Iris (---.qld.bigpond.net.au)
Date:   06-15-05 01:33

hi Lottie,

I have not recieved your email and can not locate where it went so I have put my normal email here to see if it will go to that. I feel better today as I stopped taking 1000mg Vit E, flaxseed oil and garlic oil. I also have looked at foods I have been eating that have vit D and calicium as additives and did eat them today. My lights I have changed as well. I was told by an immunologist to take the vitamin E for the rest of my life as I have an immune diffiency and Vit E is what will improve it. The lumps in my feet when I walk are not as bad today either. To me what I have been taking has been making my immune system over active. In the bin they went. Thanks for all the good info here.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-15-05 02:01

Iris,

I resent the letter to the new address. Don't worry, only the moderators can see email addresses.

Sounds as though you're getting a good start towards feeling and getting better.

Your immune system has been trying it's best to kill bacteria that it can't find. So, has been overactive. It's probably functioning normally for the situation that your body's in.

I do hope that you won't have problems with your doctor and starting the MP.

Keep in touch!

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: norman wetmore (---.client.dsl.net)
Date:   06-15-05 10:07

Hello all,

It's been a week or more after discovering that the low bp is really a herx symptom! It's been such a relief discovering and affirming the cause. I really cannot tell you what a relief that has been ! I went back down to 50 mg M and life is about as dandy as it can be w/o going in the sun in the summer (tear). I had a couple of questions:

1. I find it interesting that some people have what they consider to be an INCREASED sensetivity to smell. I happen to have what I would consider to be extreme nasal (sinus) and throat (vocal chords, etc) involvement and I can't smell a thing ! ....until recently that is. I now seem to be able to smell things which is wonderful . One thing I find interesting is that I seem to be smelling a "smokey" smell. I was wondering if that's the smell of the M or is it "the bugs burning " LOL ..ie a herx ?

2. Just curious.... how Dr. Marshall is doing on his therapy. Is he "done" with it now?

3. I wonder if we could somehow develop a site , listing, etc whereby people could post contact info that they wished to reveal so others could contact them and vice versa ?

4. I have told SO MANY people about this site. You know, when you actually tell people about sarc, etc...and how this can help people with Chron's Disease, Lupus, RA, Lyme , etc ...people are VERY interested, and it seems almost every single person I mention this to knows someone with one of these diseases !!!! ....so spread the word !

Thanks,
Norman

dx sarc 1992, keveim test, nasal and skin biopsies. Lung , skin, both eyes, spleen, extreme nasal and thoat involvement, and prob cardiac. 10/2003 d levels were 68/31. 4/2005 d levels 40/8. Started phase1 5/05.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: stick (---.ncspearson.com)
Date:   06-15-05 12:04

I was diagnosed with sarcoid 10 years ago (38yrs old). I was told by the pulmonolist that it was in "remission" and was asymptomatic. Went to the doctor for the first time in 8 years. I never told my doctor about the sarcoid since that was the reason my insurance was cancelled(lapsed a payment and got blacklisted). Anyways he found granulomas in my cat scan and today had me take a pet scan. He obviously thinks I have lung cancer(which I may). Is it possible for granulomas to be present in my lungs all this time even with an otherwise clear chest? The doctor also said that my liver is enlarged.

Also I have a dark spot under my eye that looks like I got punched in the face. It seems to get darker when I have one of my chronic sinusitis type days....anybody else had this symptom?
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Elizabeth (---.proxy.aol.com)
Date:   06-15-05 13:51

Lottie.
Just one quick question, is regular coffee or tea ok on MP or do I have to do Decaf?
Also, when I got the blood tests at Quest, they want people to fast before the 125-D and the 25-D. It isn't noted on the blood test sheet. I did attach these sheets on the back of my doctors referral and it helped. By mistake they ran one test for C3 and then phoned me to come back for C3a (no fasting required). The sheets helped the tech who never ran this test to spot the error.

Elizabeth

Lyme Disease since May 2004. Lyme Screening 1.14, IgG Reactive on bands 41 and 66, 25-D 16, 1,25-D 41 making the D score 2.56- classic dyregulation of Vit D. Senitive to Milk Protein all my life, no supplements except for 4-6 weeks, no predisone.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Iris (---.qld.bigpond.net.au)
Date:   06-15-05 14:25

Thanks Lottie I recieved the email. I have only 70% lung capacity left and my peak flows now fluctuate between 320 and 340. I am only on 5mg prednisone daily as Im trying to get off it. However when I get down that far and my peak flow drops to 300 they up it again to 25 or 50mg. Today Iam only blowing 300 and I know if I go to a Doctor they will up the prednisone or put me in hospital on intravenous hydro cortisone which I dont want. How do I prevent my chest tightness and breathless from dropping all the time so I can get off the prednisone? Any suggestions on how I can reverse this merry go round I am on with the prednisone? Do you think it is just the asthma or the sarcoid as well making me this way? I also have cronhic sinusitis and have had surgery on them 4 times? They keep giving me prednisone for that as well. Will the Benicar help if I start that and not start the rest of the MP program for awhile? Some days my FV is only .85 instead of 2.76 on the machine they use to test my lung function and it is scary because I get no air in or out. Maybe others have the same problems and can give me some ideas.
I just read Norman post and my boss has Lupus so I will pass this onto her as she gets really bad with it. Thanks everyone
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-15-05 21:08

Stick,

Welcome to SarcInfo.

Sarcoidosis does not go away on its own, and there is often a question of cancer versus Sarcoid. But, if you’ve had a diagnosis of Sarcoid in the past, it is very likely that it is the Sarcoid acting up. Yes, it is possible for you to have granulomas in your lungs with an otherwise clear chest. Liver inflammation is common with Sarcoid, and would cause the liver to be enlarged.

You and your doctor will need to decide if you need to undergo further testing to rule out cancer.

There can be periods when the symptoms aren’t as obvious, but chronic sinusitis can be caused by Sarcoidosis, so I’m not sure that you’re asymptomatic.

I have had times when the area around my eyes are very dark, it seems that “coloration” around the eyes can also be a symptom of Sarcoid.

A simple test of your D-metabolites will show how much inflammation that you have going on in your system.

I will send you additional information by email. Please do not make the same post or ask the same questions on separate threads. All the posts from SarcInfo go to all the moderators, so your questions will be answered. Thank you.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-15-05 21:37

Elizabeth,

Thank you for the information that Quest labs want the patient fasting for the D-metabolites test. I will check on that, and let those who revise the information know, as fasting for them hasn't seemed to be an issue in the past.

I'm glad that the information sheets did help you otherwise

Lottie
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-15-05 21:50

Elizabeth,

You'll probably be better off with decaf coffee, and/or weak tea. But, I don't think you have to give up coffee.

Just don't put any milk with vitamin D in it! Half and half isn't fortified with vitamin D... yet. Always check labels!

Lottie
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-15-05 23:22

Iris,

Being diligent about avoiding vitamin D, and staying out of the sun will continue to help you. Don’t forget that includes covering up completely if you must go out during the day, even if it’s cloudy, and covering the windows in your home, even if they are shaded by trees. And, you really do need to get the NoIR sunglasses to wear inside and out.

Hopefully you can get a doctor to work with you on the MP soon, and will prescribe the Benicar, as that will help you immensely in getting off of the Prednisone. It not only helps the immune system to find and kill the bacteria, it helps prevent inflammation, and protects the boy’s organs.

Before I went off of Prednisone, I was once again having many of the cardiac symptoms that had led to my diagnosis of Sarcoidosis. I didn’t have any problem with them as I weaned off of Prednisone, and during phase one of the Marshall Protocol. Only recently did I begin to have some of the cardiac symptoms while on phase two, which I attribute to herx.

I still think that your “asthma” is really Sarcoidosis. Don’t forget that Sarcoidosis can affect the lungs, along with every other part of your body. It is not at all unusual for someone to have difficulty with breathing because of Sarcoid. For several months before I was diagnosed with Sarcoid, I also had a lot of problems with shortness of breath. I had also been diagnosed with asthma many years before.

I also have had chronic sinusitis since I was a teenager (I’m 57) and had several surgeries to “correct” that. It is another symptom that is common with Sarcoid patients.

I highly suggest that you do start the Benicar for a week before you start weaning off of Prednisone. And you should wait until you are off of the Prednisone before you continue with the antibiotics. That is what Dr. Marshall suggested to me. He told me that I wouldn’t want to go through weaning off of Prednisone, and herx at the same time. He was right.

It is the last 5mg of Prednisone that are the hardest to wean from, and the Benicar helps immensely by helping to reduce inflammation.

Keep in touch!

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-15-05 23:36

Norman,

I’m glad that you’re doing better with the mino at the lower level. And, hope that the tears aren’t too many. Remember… you’re getting better!!

Yes, a lot of people report a smokey smell as they get better. I have too, it’s been chilly and sometimes I thought that someone may have started a fire in their fireplace. Sometimes, it seems that I’m smelling coffee, and no one drinks coffee here. I like the idea that the bugs are burning!

Dr. Marshall is doing great, still experimenting with different combinations of antibiotics to see if he’s gotten rid of all the bugs.

We’ve talked about setting up a site for contacting people. In the meantime, if you sign up on MP.com you can send private messages to other members on that site.

Lottie
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Iris (---.qld.bigpond.net.au)
Date:   06-16-05 04:40

Lottie,
Thanks for the info. As soon as my Doctor comes back next week I will see him as I can always convince him not to hospitalise me and I will talk to him about the tests and starting the MP. There was no place to do the tests in my state on the list so it will make it a little harder to have my blood samples sent interstate.

Is there any where in Australia that I can purchase the glasses and if so can you advise me as to where? I have perscription reading and distance glasses so are the sunies able to be attached to my regular glasses?

I put shade cloth over my windows to block out the sun. I did that in summer as I am unable to have air conditioning and it helped with the heat.

Even though Iam on 5mg I did as suggested in one of the articles I read and take half in the morning and half at night to make it easier to wean off.
Another thing I found tonight is that my sugar levels were 4.9 instead of the usual 8 or 9 at this time. So watching the Vit D and splitting my prednisone has made a difference there as well.
Keep up the good advice. Iris
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-16-05 13:27

Iris,

I'm glad you're already noting improvement. That may also help you convince your doctor to prescribe the MP for you!

Apparently there is not an Australian source for NoIR sunglasses, and you will need to contact them in the US, and they will send them to you by mail.

Benicar is also unavailable in Australia, and there is information here BENICAR: Where to purchase Benicar for self-pay members Includes information about countries where Benicar not sold and "Open Care" Program for low income patients

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-16-05 23:34

Post moved to appropriate thread...

micardis
Author: Stephen Cole (CPE-138-130-122-43.nsw.bigpond.net.au)
Date: 06-16-05 23:06

Hi, I have been following your website for some time now and although I have not followed the protocol to the letter yet I have experienced enough to disregard my own (and my specialists) scepticism. I have had sarcoid for 11 years, lungs and skin. I have been off Prednisone (down to 5 mg day) for the past 6 months and was on (with my specialists backing) 150mg Mynocycline for about 5 months. I felt better but did not experience any adverse reactions , the skin lesions were less angry (but still present). As you well know Benicar is unavailable in Australia and the $600 required to purchase from OS is almost impossible on a pension so I started taking Micardis (through the health system here) and was suffering badly with breathlessness , joint and muscle pain (severe) and almost every other symptom mentioned regarding HERX. SOOOOO I went off everything and felt better but still had symptoms of Sarcoid. 2 weeks ago with my blood pressure moderately high I started on Micardis 80mg oer day and instantly felt very well (bloody good in fact). and have remained so. I am keen to dedicate myself to the protocol now that I have experienced the effects of these drugs but would like to know if I can start the protocol on Micardis safely until such time as I can afford the outlay for the Benicar (is there a huge difference) or is there another angio tension inhibitor I can use which is available in Australia......Cheers from a slightly confused Aussie.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-17-05 00:04

Stephen,

You stated that you have been off Prednisone, and in parentheses you wrote "down to 5mg per day. Are you completely off Prednisone at this time? And, are you taking any minocycline at this point?

It sounds as though you are saying that you were on 150mg of minocycline, and then started taking the Micardis. Could you let me know if that is what happened?

It would help if you would create a signature line to help the moderators answer your questions in the future, even with what you may consider limited information, it will be helpful. I will send you information on how to do that.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lowelle Messner (---.clvdoh.adelphia.net)
Date:   06-17-05 16:18

Dear Trevor, Meg, Belinda or Lottie,

I believe that I am ready to start Phase III. Would you please send me the questionaire, to see if I am correct?

Have a wonderful weekend!
Lowelle

Diagnosed Jan. 2003, groin lymph node biopsy. Lungs, liver, spleen, lymphatic, ocular and neuro sarc involvement. June 2003, Vit.D=12; Vit.1, 25D=62. Dec. 2004, Vit. D=13; Vit.1,25D=52. Started Phase II in Dec.2004. Still herxing neuro, ocular & lu

Moderator's note:
Lowelle, check your email. Lottie

 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Elizabeth (---.proxy.aol.com)
Date:   06-17-05 23:27

Lottie,
I have one question. According to the fda, minicycline comes in liquid, tablets and capasles. I am checking with my grocery pharmacy can get the liquid. I thought I could more easily measure my dose. Is there any problem with this?

The site did not recommend crushing the "time release capasles." Is there as harm to my stomach et al. if I do?

Several people in my Lyme help group are preparing to start MP. I have started a notebook with many articles on MP.

Elizabeth

Lyme Disease since May 2004. Lyme Screening 1.14, IgG Reactive on bands 41 and 66, 25-D 16, 1,25-D 41 making the D score 2.56- classic dyregulation of Vit D. Senitive to Milk Protein all my life, no supplements except for 4-6 weeks, no predisone.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-18-05 01:06

Elizabeth

There is advice here on our sister site MP.com regarding splitting up the doses of minocycline:
http://www.marshallprotocol.com/forum32/1077.html
It’s really fairly easy once you do it a few times.

Minocycline can cause damage to the esophagus. So, if you’re using either of the capsule forms, and divide it up be sure that that it is in a capsule (and wipe the capsule off before taking it) or in applesauce, and drink a glass of water with it. You also want to drink a glass of water after taking the liquid, as well, if that’s the form you use. It’s also a good idea to not lay down for about a half an hour after taking it to avoid possible reflux back into the esophagus.

The only problem with the liquid form is that once it’s reconstituted, you need to be aware of how long it can be kept. And, since you are only taking it once every other day, you may find that you need to discard quite a bit, and need to get refills for it.

It’s good to hear that others are also planning to start the MP, it will be good for you all to have support so close to home. I hope that they each also join us either here at SarcInfo, or at MarshallProtocol.com, and ask questions as well, if any should arise. We’re here to help you all be successful, and hope to help everyone avoid problems because they may have misunderstood some part of the MP.

Sounds as though you are getting quite organized!

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Mary Ann Bluhm (---.hsd1.ca.comcast.net)
Date:   06-18-05 03:39

Lottie,

I was unable to access the link about splitting doses of minocycline. When I started on the MP, I had a compounding parmacy fill the prescription for 25 mg. capsules. I had to pay for it myself (about $100 for 50 25-mg. capsultes), but I think it was worth it.

Mimi B.
Fresno, California

1987 dx endometriosis, hysterectomy; HRT; 1994 breast cancer; 1994-1995 chemo; 1998 dx sarcoidosis ('98 in lungs, '03 in spleen, '04 in liver ); 1/28/05 Benicar q6h; 1/27/05: 25-D=11; 1,25D=69; 3/3/05 mino 25mg. q48h; 6/17/05 mino 100mg. q48h
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-18-05 05:22

Mary Ann,

Thank you for letting me know about the link. I think I've fixed it, and it seems to be worrking now.

Your solution can be an option if a compounding pharmacy is available. As you found it can be quite expensive. I understand that it may be worth it for some people for various reasons. I've done enough capsule splitting that it's not a problem or much of an effort now.

I wasn't sure how many times I'll need to split capsules as I go through the MP, so I figured that I'd just jump in and give it a try. Hopefully next week I'll be able to take doses that mean I can go through at least a two week cycle without having to split anything It is nice to just dump them out of the bottle.

Lottie
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Roger Sabin (---.oxfordnetworks.net)
Date:   06-18-05 08:17

Is bactrim part of phase 2 or 3 MP? Does it cause a herx reaction?

Roger Sabin Dx: pulm. sarc. 2002 stage 2-3
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Tom Rogers (---.twcny.res.rr.com)
Date:   06-18-05 10:35

I need to ask cause this has been bothering me, my two docs state that for a large percentage of their Sarc patients, they never get worse - and have no treatment of any kind, ever. They are asymptomatic patients who are biopsy proven Sarcies, that live a normal life span with no troubles from Sarc.

How do you reconcile these facts? The consensus on this website state that Sarc never goes away (my docs agree with this too), but that it always gets worse and causes eventual death (my docs disagree). My docs say they have patients that have Sarc that never gets worse and never bothers them - it was an incidental finding on a routine chest x-ray, ct scan, then biopsy (biopsy done to rule out cancer)

Thanx,

-TRogers

Biopsy Dx Sarc on 1/29/03 - lymph nodes only - 05/03 (SACE - 133, Vit D 1,25 - 35.3, Vit D 25 - 20,) 11/03 (SACE - 49, Vit D 1,25 - 25, Vit D 25 - 17) 1/05 (D,25=10 - D1,25=35 - SACE=34 - CRP=1 - SED = 4) - MP Phase I 5/15/05 40mg B 3x day, 25mg M
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Admin (---.ventca.adelphia.net)
Date:   06-18-05 13:13

Tom,
Please ask your Docs to put you in contact with one of these patients, one whom they have followed for the last 10 years or so (ACCESS stated end-stage sarcoidosis develops in 10-20 years, and the patients need to be followed for long enough for the disease to progress to the other organs).

We ask this repeatedly. To this point not one 'sponatneously recovered' patient has emerged. There are no studies which confirm this "large percentage," indeed neither the huge ACESS study or the NIH Pentoxifylline study identified any spontaneous remission at all. It is a myth, a deception. This myth of spontaneous remission may well prove to be one of the biggest hoaxes ever perpetrated on the community.

For the last 18 months we have been working with the NIH NHLBI trying to get the myths taken out of the information they promulgate about this disease. My guess is that in another 12 months it will all be gone.

Sincerely
Trevor
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Elizabeth (---.proxy.aol.com)
Date:   06-18-05 22:31

Lottie,
At present I am taking Singular for allegeries. Can I continue this med while on the MP?

I am beginning to wonder if I have allegeries at all. Before I knew I had Lyme, I had bad headaches and that led me to an allegerist. When tested I was slightly allergic to mold, dust et al. Was my TH2 system trying to fight off the Lyme?

Elizabeth

Lyme Disease since May 2004. Lyme Screening 1.14, IgG Reactive on bands 41 and 66, 25-D 16, 1,25-D 41 making the D score 2.56- classic dyregulation of Vit D. Senitive to Milk Protein all my life, no supplements except for 4-6 weeks, no predisone.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-18-05 23:26

Roger,

Have you started the MP?

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-18-05 23:44

Elizabeth,

Yes, you can take Singulair if you need it.

Lyme is a Th1 (bacterial) disease. One of the symptoms is a high 1,25D, due to the body's inability to regulate it's production. The bacteria produce it, and the body has no control over them.

The high 1,25D throws many hormones in the body off. You will find many changes as you bring down the level of the 1,25D by avoiding vitamin D, sunlight and bright lights and
with the use of Benicar.

Here is a chart showing the 1,25D's connection with other hormones in the body
Chart showing D 1,25 and it's relationship with other hormones

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Roger Sabin (---.oxfordnetworks.net)
Date:   06-19-05 08:48

Lottie,

Not completely. I am down to 9mg pred. from 30mg. I am feeling well, taking 40 mg benicar every 8 hours I did have a deep vein thrombosis above my ankle, which has resolved. I had to take lovenox injections for 6 weeks and now am taking one 325 mg aspirin per day.

My pcp wants me to wait until I am done teaching next week so I can be closer to an emergency room when I start the minociin. She is very worried about the herx reactions.

Does the MP work as well for pulm. sarc as for other types?

Roger

Roger Sabin Dx: pulm. sarc. 2002 stage 2-3
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Tom Rogers (---.twcny.res.rr.com)
Date:   06-19-05 16:42

I came across this website today by accident - is there any validity to the risks of the MP that it states?

http://lassesen.com/cfids/MarshallProtocolRisks.htm

Thanx,

-TRogers

Biopsy Dx Sarc on 1/29/03 - lymph nodes only - 05/03 (SACE - 133, Vit D 1,25 - 35.3, Vit D 25 - 20,) 11/03 (SACE - 49, Vit D 1,25 - 25, Vit D 25 - 17) 1/05 (D,25=10 - D1,25=35 - SACE=34 - CRP=1 - SED = 4) - MP Phase I 5/15/05 40mg B 3x day, 25mg M
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Admin (---.ventca.adelphia.net)
Date:   06-19-05 16:48

Tom,
No, that guy is somebody who seems to have some sort of a grudge. Last I heard he had put his family on super high doses of Vitamin D (presumably to prove that my understanding of its actions in Chronic Fatigue Syndrome were incorrect). They would keep increasing the dose until their body core temperature rose a couple of degrees Hmm... I guess we will learn the results of that experiment in a few years...

..Trevor..
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Jeremy (---.misawa.af.mil)
Date:   06-19-05 18:33

Hello all,

I recently returned from a reexamination of my pulmonary sarcoidosis. I was given a PFT and the pulmonologist said that my PFT was above normal and that I have "super-human lung function" and that I had improved significantly since my last PFT. The thing is however, my last PFT was normal as well and didn't suggest that I should have had breathing problems but I did. I asked the pulmonologist if my increased pulmonary function could be due to the fact that I had quit smoking and hadn't smoked since just before my last PFT which was 6 months ago, he said that it wouldn't make that much difference and he believed that the reason was because my sarcoidosis was gone. Well, the HRCT had a different story to tell. My CT results had improved slightly but my sarcoidosis was not gone. I still have stage II pulmonary sarcoidosis with ground glass manifestations.

This leads me to wonder how effective the PFT is in diagnosing this condition.

Second thing, he noticed that one side of my tonsils is enlarged when I told him that I have pressure (sometimes), difficulty swallowing (sometimes) and extreme pain in my throat (upon exertion while breathing accompanied with the chest pain) but said that I would need to see a ENT.

I've had my throat problem for a while but it is normally asymptomatic and I do not have a fever or high temperature. What is the differential diagnosis of my throat symptoms? Could it be caused by sarcoidosis?

Thanks,

Jeremy

Dx-Pulmon. Sarcoid (stg II) Oct04. Init: Weight Loss(40lbs), Fatigue, Cough, and CP. Diag: X-ray/HRCT/Biopsy. Treat: Pred. Taper(Jan 05)40mgx2wks/30mgx2wks/25mgx2wks/15mgx6mos. Now off pred. Symptoms returned Dx-stg III (stable) Feb06. No treatment.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Jeremy (---.misawa.af.mil)
Date:   06-19-05 22:12

Hello again,

Quick question, what would a systemic workup entail and who would do this? Reason why I ask is because everytime I go to one specialist, he/she will only deal with issues concerning that specific region.

Thanks,

Jeremy

Dx-Pulmon. Sarcoid (stg II) Oct04. Init: Weight Loss(40lbs), Fatigue, Cough, and CP. Diag: X-ray/HRCT/Biopsy. Treat: Pred. Taper(Jan 05)40mgx2wks/30mgx2wks/25mgx2wks/15mgx6mos. Now off pred. Symptoms returned Dx-stg III (stable) Feb06. No treatment.
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-19-05 22:19

Roger

Congratulations on getting down so far on the Prednisone. Are you planning to start the Minocin before you’re completely off of it? I’m asking, because you are getting down to the level of Prednisone that will probably give you a bit more trouble. My doctor told me that the last five milligrams are the most diffictult to get off of, and thankfully Trevor also cautioned me (strongly) that I wouldn’t want to have to deal with the weaning off of Prednisone and herx as well. Fortunately, I took his advice and waited until I had been off of Prednisone for about two weeks before starting the Minocin.

I’m glad that your PCP is working with you, and is aware of the possibilities. I suspect that you won’t have to visit the ER as long as you are following the MP correctly.

There are no “types” of Sarcoidosis. It is a systemic illness that can affect any and all parts of the body. You either have Sarcoid, or you don’t. The part of the body that has been damaged the most by the bacteria is the part (or parts) that give you the most problems. It is probably the one that has the highest bacterial load as well. You will probably notice as you go through the MP, that you have symptoms in areas besides your lungs. That is when you will learn what other parts of your body have been affected by the bacteria. As we have gone through the MP, many of us have begun to realize that we had Sarcoid symptoms long before we were ill enough to finally be diagnosed with it. And, that many of the problems we had along the way were actually Sarcoid related.

Have you had your D-metabolites tested? If you have, it would help us if you could put the results in your signature line, since it will help us to know what your inflammation level is that you are starting with.

I will be sending you some additional information by email.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Iris (---.qld.bigpond.net.au)
Date:   06-19-05 22:21

Hi!
A couple of questions before I see my GP tomorrow.

Do I require a script to get Benicar from the states if Iam in Australia?
I am allergic to penicillian, bactrium, morphine and pethadine so is there something else I can take instead of bactrium on MP and is Minocin from the penicillin family if so is there anything else I can take? Your assistance will be greatly appreciated.

My allergic reaction is viloent vomiting as soon as it goes in my mouth or I have an injection, large welts all over my body and where ever Iam touched it comes up in a welt and my under clothes I wear the welt is that shape, it is not good.

Also what is the time difference so I can ring and order the sunies?

Thanks Iris
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-19-05 23:16

Roger,

Perhaps the patients that have Sarcoidosis, that your doctors have said never get worse, have symptoms that your doctors don’t “connect” with Sarcoid. Many doctors still think of it as only a lung disease. Any other symptoms might be diagnosed as “something else”.

For instance, many people, like myself have been diagnosed with asthma long before they learned that they had Sarcoidosis. And, actually, the symptoms that ended up with my getting a diagnosis of Sarcoid were heart related. And yet, even after I was diagnosed with Sarcoid, the cardiologist told me that the problems with my heart (fluid around it, thickening of the ventricle wall) were probably not related to Sarcoidosis. “After all, the percentage of people with cardiac Sarcoidosis is very low”. I pointed out that I had already beaten the odds of getting Sarcoidosis, why should I stop there? And, I mentioned to him that most cardiac Sarcoid is “diagnosed” when the autopsy is performed, (as it recently was with Reggie Jackson) and he had no response.

Heart block is a common occurrence in cardiac Sarcoidosis. I now wonder how many people with pacemakers have Sarcoidosis? Is my Mitral Valve Prolapse that I was diagnosed with in 1978 related to the inflammation in my heart… caused by Sarcoidosis? It will be interesting to see over the years if that improves while on the MP.

My skin lesions were labeled as psoriasis. Medications that I was given didn’t help them when I was diagnosed with psoriasis. They did improve when I was on Prednisone. They (and more) showed up again as I weaned off of Prednisone. And, many of them have gone away while I’ve been on the MP. So, I suspect now, that they were Sarcoid lesions. Do the patients your doctor refer to have problems with their skin, that won’t go away with “normal” treatment?

Do the patients that your doctors refer to have symptoms of arthritis? I wonder if the joint pain is related to their Sarcoidosis? Do they suffer from osteoporosis? Do they have a neuropathy that the doctors can’t figure out the cause of, as I did? Do they have digestive problems, which the doctor has labeled as IBS, as I did? Any of the problems that their Sarcoid patients have, may be related to Sarcoidosis, and the doctors may not recognize that fact.

Occasionally, I ask my doctor if he thinks more about the possibility of Sarcoid being responsible more often now when he’s seeing a patient for symptoms of “other” illnesses. Now that he has learned more about Sarcoidosis than either he or I ever wanted to, he says that he does often wonder about it. We’re both still learning, and hopefully, he’s checking more D-metabolites now.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-20-05 00:30

Iris

Minocin is not in the penicillin family. You will probably find that any reactions that you may have had with other antibiotics on the MP were actually herx reactions. Meg had thought she was allergic to Bactrim in the past, but since she’s been on the MP, she hasn’t had problems with it.

Yes, you do need a prescription for Benicar to obtain it from the states.

I’m not sure about the time difference to Australia. NoIR is located in the United States Eastern Time Zone if that helps. It is three hours later than the U.S. Pacific Time Zone.

Lottie
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-20-05 00:52

Jeremy

The PFT can only measure lung function and does not tell the doctor if there are bacteria present. It is only a tool in learning how what the lung capacity is and the ability to get oxygen to the blood.

Please remember that Sarcoidosis is a systemic disease, and it can affect any and all of the body’s parts. It is very possible that your throat problem is due to Sarcoidosis. And, Sarcoidosis doesn’t just disappear on it’s own, or with Prednisone. The only thing that the Prednisone would have done is to allow the bacteria to continue to multiply.

Your signature line shows that you also have neuro symptoms and skin lesions. There’s a very good possibility that they are due to Sarcoid. I have them and weight loss was also one of my Sarcoid symptoms.

I'm not sure why you want to have a “systemic” workup. You have a systemic illness that can affect any part of your body. The doctors aren’t used to dealing with Sarcoidosis, and it would be natural for them to focus on “their” area of expertise. Your Primary Care Physician would be the one most likely to look at all areas of your body. But since you have Sarcoidosis, I think that you’ll find that once you defeat it, the other problems will resolve along with it!

Have you been able to have your D-metabolites tested yet? And are you continuing to wean off of the Prednisone?

Lottie
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Stephen Cole (---.nsw.bigpond.net.au)
Date:   06-20-05 16:07

Thanks Lottie - Yes I am still taking 5 mg of Prednione at present.....I was on 150mg Mynomycin per day for 5 months and had few problems until the Micardis was introduced which was when the body aches occurred. I have been completely off Minomycin for the past month and I am now taking only Micardis. Hope this is a bit clearer............Cheers Steve
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-21-05 02:38

Stephen,

The most likely reason that you had such a bad reaction is that you were already on the minocycline at a high dose, and added the Micardis to it.

Micardis is an ARB which potentiates antibiotics. It doesn’t do it to the level that Benicar does, and it will not be enough to induce full recovery, but you can start with it.

Even if you use Micardis, you also need to be sure that you are following the other aspects of the Marshall Protocol.

Please print out Marshall Protocol, Phase 1, the First 3 months so that you and your doctor can refer to it.

It is very important that you avoid vitamin D from food and supplements. That includes natural sources, such as egg yolks, fish, fish oil and fortified dairy products. READ the labels! They’re adding it to many foods… including some brands of orange juice and bread in the U.S.

You also need to avoid sunlight, and bright lights. The windows in your home must be covered and if you go outside you need to cover up completely. That includes long pants, long sleeves, scarf, hat, and gloves.

Once you are established with the Micardis, you will start the minocycline at 25mg EVERY OTHER DAY, and you don’t increase it over 100mg every other day in any phase.

I would advise you to wean off of the Prednisone before you start the minocycline. You’ve already experienced a very intense herx, and I can assure you that you would rather not be weaning off of Prednisone and experiencing herx at the same time. I weaned off of Prednisone first, at Trevor's strong suggestion, and I am very glad that I did.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lowelle Messner (---.clvdoh.adelphia.net)
Date:   06-21-05 04:08

Dear Lottie,

I did not receive your reply to my post, until today. Unfortunately, I did not receive an email from you concerning Phase III. Would mind sending it again? I would really appreciate it.

Have a wonderful day!
Lowelle

Diagnosed Jan. 2003, groin lymph node biopsy. Lungs, liver, spleen, lymphatic, ocular and neuro sarc involvement. June 2003, Vit.D=12; Vit.1, 25D=62. Dec. 2004, Vit. D=13; Vit.1,25D=52. Started Phase II in Dec.2004. Still herxing neuro, ocular & lu

Lowelle, I just sent it out again. Hope you get it! Lottie

 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-21-05 04:26

Moved to appropriate thread:

feet
Author: jill hopkins (swan-cache-3.server.ntli.net)
Date: 06-21-05 04:02

hello please could someone help me over the last couple of days my feet have swollen up and i do not know if it is from sarcoidosis or fms becouse my docter says my sarciod is in remissn so have not asks him yet so any help please thank you jill

j hopkins
 
 Re: ***PLEASE POST GENERAL QUESTIONS HERE***
Author: Lottie (---.proxy.aol.com)
Date:   06-21-05 04:41

Jill,

I replied to you in another thread about the Fibromyalgia. I think that it is important for you to understand that the symptoms you have that are being referred to as Fibromyalgia are very likely being caused by your Sarcoidosis.

Sarcoidosis does not go into remission. It does not go away on it’s own. There may be times when the symptoms aren’t as bad, and it may seem as though it has gone away, but the bacteria are still there. They will continue to multiply, and you will get worse, unless you discuss the Marshall Protocol with your doctor, and are treated with it.

It is very common for the ankles and feet to swell up with Sarcoidosis.

Are you still on Prednisone? If you are, it is only masking the symptoms temporarily. You will get worse while on it. Many people have had that experience, and I am one of them. Many times doctors will only increase the Prednisone or add another immunosuppressant, which will not cure the problem but will only relieve the symptoms… for a while.

Have you discussed getting your D-metabolites tested and going on the Marshall Protocol with your doctor?

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury

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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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Sarcoidosis

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