Sarcoidosis Answers for Physicians, Nurses and Patients

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

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 The material here provides useful background, but much of it is now out-of-date.

** Patient Tutorials **

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

  Click here to read "REMISSION IN SARCOIDOSIS"  

 How a Pathologist can see Bacteria causing Sarcoidosis 

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

 Weaning from Prednisone

 Protecting your eyes in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Hypervitaminosis D Symptoms    The SarcInfo F.A.Q.

Medical Abbreviations          CBC Radio Show

Protocol Phase 1-First 3 months

  

** Papers for Physicians **

Antibacterial Therapy induces Remission 

Implications for Autoimmune Disease 
(Here is Fulltext preprint)

Antibacterial mechanisms for ARBs 

Antibiotics in Sarcoidosis- The 1st Year 

Rationale for abx in Sarcoidosis 

1,25-D and Angiotensin II

"New Treatments Emerge.."

Jarisch-Herxheimer in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

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


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 Fibromyalgia pain shown to be real pain
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-14-02 14:34

A new study has shown that fibro sufferers (which includes just about every sarcoidian I have met) exhibit "a neurobiological amplification of their pain signals .. for some reason, still unknown"

Yeaaa.. In March, I started the thread "Neurosarcoidosis, pain, bad memory-what to do" by saying "the pain signals can get amplified as they pass up the spinal column and move from neuron to neuron. We feel pins and needles that really are NOT there, and the pain that really IS there has become too strong to bear". Somebody agreeees... I loooooove it...

..Trevor..
 
 Re: Fibromyalgia pain shown to be real pain
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-27-05 08:51

Author: jill hopkins (swan-cache-3.server.ntli.net)
Date: 02-27-05 08:44

how many of you got sarcoid then fms please could you let me know

j hopkins

*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: Fibromyalgia pain shown to be real pain
Author: John Dresser (207.118.48.---)
Date:   02-27-05 10:45

Trevor, if you have a few minutes, could you look at my posting at the bottom of your neurosarc thread, where I described my shoulder pain, possibly amplified by herx reaction.

When the sports medicine doc told me (in 1985) my shoulder and elbow pain was caused by a nerve in my neck being pinched, it just seemed impossible.
The pain felt so real and it seemed logical that I injured those joints from overuse in my work. It now would seem the doc has correctly identified the cause since he could see the neck injury in the x-rays. However, maybe what you describe above could still coincide with his conclusion?
(I don't recognize the pins and needles feelings though, so maybe this does not explain this particular problem in my case?) Thanks, John Dresser

John Dresser
Sarc- Lungs dx (biopsy) 1985, pred 3yrs, Started MP 2.10.04 **1,25D=58.1 * 25D=18.1 **-phase 2- 6.1.04, phase 3- 9.16.04, strongest herxs 1st half phase 3. 4.18.05 **1,25D=13 * 25D=6 ** light herxing in last phase 3 abx combo 10/05
 
 Re: Fibromyalgia pain shown to be real pain
Author: Rowdy (---.tnt3.ij.net)
Date:   02-27-05 15:03

I took offense when my rheumatologist stated that "I just had a lower tolerance to pain than others". After thinking it over, I realized that feeling more pain or having a lower tolerance may be the same thing but I still resented that he choose to view this from the angle that appears to put me at fault. Having a "lower tolerance for pain" sounds like a problem with me while experiencing more pain sounds more like the problem is the external force causing the pain.

Most of my symptoms (outside of general joint and muscle pain) seem to come and go in waves (like my nighttime headaches). I assume this has to do with my D levels. One of the "odd" symptoms I frequently experience is and increase tenderness in my fingertips. My fingers hurt when typing on a keyboard and they sense heat like sunburned skin. Normally, I have no problem taking toast out of the toaster oven but when this flares up, my fingertips burn as soon as they get near warmth. I've also noticed that during these times bumped fingers, toes, elbows, etc. can cause unbelievable pain with minimal contact. This is a hard one to explain to non-sarcies.

I haven't had a Fibromyalgia dx but have been told my pains are probably sarc-related arthritis.

Dx: sarcoidosis 2003, lung, joint pain, sleep apnea, salivary gland stones; on pred Oct 2003 to Apr 2004; not on MP; Ds not tested
 
 Re: Fibromyalgia pain shown to be real pain
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   02-27-05 19:32

Rowdy,

I live in the state that is responsible for the National Pain Control Initiative so I've been to a few conferences on pain management. You are right to be offended when your complaints of pain are minimized in any way. Pain scales have been developed to help quantify pain and your doctor should use one of them consistently as he helps you get your pain under control.

Of course, the best way to control pain when you have sarcoidosis is to eliminate the underlying cause with the Marshall Protocol. In the meantime, it is your right to insist on adequate pain control from your health care provider.

Take good care,

Meg
 
 Re: Fibromyalgia pain shown to be real pain
Author: Rowdy (---.tnt2.ij.net)
Date:   02-28-05 05:34

Meg,

Actually, the pain has never been under control. On a positive note my drs. don't want to use any drug that will potentially be bad for my liver or immune system (most of the drugs on the do not use list) but that doesn't leave much. They also insist I don't want to get started on narcotics. Vioxx was taking the edge off pain but not eliminating it. From Vioxx, we tried Mobic but that was more expensive and less effective. Then Ultram (did nothing) and Elavil (may have done a little but not worth sleeping 22 hours per day). I started getting headaches again and acute pains and was told all I could take was Tylonol (which did little) so I quit the Mobic and went back to taking Ibuprofen for acute pain.

I had quit Ibuprofen because it seemed as though my limbs hurt and fatigued more with a second dose. After reading the discussion on exercise recently, I believe my problem has been that the ibuprofen gives enough relief that I use my arms and legs more and rest less and that may be resulting in the increased limb pain and fatigue. I was home sick for a week a couple of weeks ago and my arms and legs felt the best they had in months.

I compare my pain to summers in Illinois and Florida. I used to have ups and downs in acute pain like the 100+ degree F temperatures during an Illinois summer (understanding it will soon drop back to a dry 70 degrees F). It's now like a Florida summer: 94 degrees +/- a couple (90+% daily humidity) for six months straight. It's uncomfortable but you just have to learn to live with it. My pain is fairly consistant and I know what to expect and how to naturally control it to keep it to a minimum. Should the pain get to be too much I take Ibuprofen but I don't try to stop all of the pain any more.

It's frustrating that co-workers see me pushing through the pain to get the work done (it has to get done. I need the paycheck) without a real understanding of what I'm feeling and what I'll feel later. The pain and fatigue really sets in once I sit in the car for my half hour drive home. My ankles fatigue to where its uncomfortable to work the pedals. I usually feel that I'm struggling with my arms and hands to keep them on the steering wheel. When I get home, the "healing" begins. I often just sit on the sofa (nursing my aches and pains) trying to stay awake while my wife prepares dinner, helps our son get bathed and ready for bed, puts him to bed, cleans up the kitchen, and then pays bills or some other aspect of running the household.

It wasn't too long ago that I was discussing with Trevor how I was a "mild" sarc sufferer and not in immediate need for the MP. It's amazing how fast things can change sometimes. I still don't feel I'm as bad off as others but it's always seems worse when it's happening to you. I'm still able to do almost anything without those around me recognizing that I have a problem. It's just that I know it will affect me when I'm done. I have to think of the long term affects when planning my day.

I'm frustrated as I've experienced a couple of unexpected set backs recently in my attempts to find a local dr. who will treat me with the MP so this may be a little long and contain some venting. The search continues.

Dx: sarcoidosis 2003, lung, joint pain, sleep apnea, salivary gland stones; on pred Oct 2003 to Apr 2004; not on MP; Ds not tested
 
 Re: Fibromyalgia pain shown to be real pain
Author: Kas (---.cpe.net.cable.roger)
Date:   02-28-05 12:50

I need some advice here, please.


I fully intend re- starting the MP soon, but I am visiting Australia in early April ( tickets are booked) and would prefer not to start on the Benicar until after my return at the end of the month, when my body has the time to reach homeostasis and to rest up.

Meantime, I have been suffering quite severe lower leg, ankle and feet pain. Sometimes it is a burning, prickly ache, other times just a continuous dull ache, especially in the ankle joint area and upper feet; other times, it feels as if it is in my calf musclesor bones.

I wonder if starting on some low dose mino in the meantime would alleviate my leg pain as it has in the past ( without the B), or is that a pointless exercise? I was hoping that if I used about 25mg say every M, W, F , I might be able to start killing off a few bugs and ease the aching lower legs to a more acceptable and comfortable level of pain. I am still able to work etc, but I am always aware of the aching. I tried to avoid anti- inflammatory drugs to protect my liver, which right now, seems to be in the normal range for a change.
 
 Re: Fibromyalgia pain shown to be real pain
Author: lynn vanhoose (---.bgk.bellsouth.net)
Date:   06-23-07 19:19

I have had sarcoid for 10 years the first five years suffereing through the pain and didn't under stand what was going on. Now I am in stage four of this disease. people who don't have this disease do not know how you feel. Sometimes I tell them you walk one day in my shoes and you will know.
I have the best pulmonoligts there is. Before I found her I had been to others who tried heavy doses of plaquenil and predisone. I was taking 80 mg of predisone a day. My dibetes was out of control. I gain weight and swollen all of the time. I went back to this dr. and he said that the medicine hadn't slowed any of it down. So I found another. She was the one that told me that from taking that high of a dose of predisone that my bone were destroyed form it. She said that the pain in my legs and hips and hands was fibromyalgia. I would cry in the middle of the night with my legs. I swear I would have been better off if someone would had cut them off. Now I have pulmonary fibrosis on top of this. She doesn't like to prescribe predisone for me because she knows what it does. This is my sixth round of antibotics. I hate takeing the levaquin all I do is throw up. Sometimes i have good days that if I take my time and rest while i am doing things I get a few things around the house done. My dr said do what u want but take it easy if things get done that fine if not that's fine to. I know this disease has taken a toll on my children . I can't run with them or do anything that makes me out of breathe and tired I feel like my heart is going to jump out of my chest. It scares when your breathing nd then all of a sudden there is nothing going in or out. It's a very scary disease.

i am a sarcoid patiet

 
 Re: Fibromyalgia pain shown to be real pain
Author: Meg (---.dhcp.eucl.wi.charter.com)
Date:   06-23-07 22:28

Welcome Lynn,

We know exactly how you feel. You may have noticed that this website is not very active. That is because we started a new site that is more comprehensive.

Please go to www.marshallprotocol.com and post your message there. You will find many members and moderators eager to help you recover from sarcoidosis.

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
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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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