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 The material here provides useful background, but most of this site is now out-of-date.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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 Profuse Sweating
Author: MsEboney (---.dialup.rcsntx.swbell.net)
Date:   02-08-03 13:37

I was reading through part of this website and I read where profuse sweating might be part of a breakdown of the immune system. Is this what is called hyperhydrosis? Can someone give me more info on this because I have been unable to get the sweating problem under control and it just seems to get worse but I never related it to my Sarcoid. THanks

 
 Re: Profuse Sweating
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   02-08-03 14:32

Welcome to sarcinfo,

Hyperhidrosis is the medical term for excessive sweating. It could be related to your sarcoidosis because it is one of the symptoms of elevated levels of 1,25-dihydroxyvitamin-D.

If you've read the tutorials at the top of the page, you have some idea of how this hormone becomes too high and how it causes many of the symptoms of sarcoidosis.

You can resolve this and your other symptoms with the right medications and avoidance of Vitamin D.

Have you had your levels of D-metabolites tested (click here)? This will tell you how much systemic inflammation is in your body and help determine the effectiveness of the treatment.

Meg

 
 Re: Profuse Sweating
Author: Dot (216.218.69.---)
Date:   02-08-03 18:40

This is so strange that I found this out today. I am having a very serious problem with the profuuse sweating. It is causing me so many problems because I did not know why because I am 60 years old and have dealt with sarcoid for 38 years and everyone looks at me like I am crazy because when the sweats starts I stuff paper towels down my bra. and usually walk around with a cloth diaper around my neck. My family doctor told me to take more Vitamin E but it hasn't helped much.
It has been a blessing because now I know what is causing it and I will talk with my sarc. doctor and see what he thinks.
Thanks so much for puttting this on the computor.
Dot
da_brown57@hotmail.com

 
 Re: Profuse Sweating
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-08-03 18:48

Folks,
If you take a look at the tutorial talking about how Pathologists can find bacteria in your Biopsy, you will see that there is a photo of bacteria inhabiting the sweat glands of a pulmonary sarc patient.

Alan told me that he always looked at sweat glands when he was looking for the CWD bacteria in sarc patients - he said that the bugs loved to populate them.

So - the message was to use Minocin on the bugs, and your 1,25-D levels will go down, the inflammation will go down, and your sweat glands will clear.

..Trevor..
ps: Does anyone want to buy a whole stack of special anti-sweat underwear I have accumulated over the years and now no longer need?

 
 Re: Profuse Sweating
Author: P. Gunderson (---.sd.sd.cox.net)
Date:   09-19-04 09:58

On 02-08-03 Dot wrote: "I am having a very serious problem with the profuuse (sic) sweating." Her age and condition are very similar to mine. I wonder if Dot was ever able to determine, for sure, what the cause of her horrible sweating was and if she ever found a fix? You still out there Dot? Or anyone with ideas about this very uncomfortable, debilitating, disgusting condition? Thanks. pam

 
 Re: Profuse Sweating
Author: Lottie (---.proxy.aol.com)
Date:   09-19-04 11:03

Pam,

Welcome to SarcInfo. Do you know if you have Sarcoidosis?

Just about all of us with Sarcoidosis have had problem with excessive sweating.

If you look at this thread Hypervitaminosis D Symptoms, you will note that it is one of the symptoms of too much vitamin D. Excessive vitamin D is one of the ways to confirm Sarcoidosis, and/or other Th1 diseases.

Please read all the information which is at the top of all the pages in SarcInfo. To test for excess Vitamin D please print out this page for you and your doctor. "How does Doctor measure my ACE, and my D-metabolites?"

If you do have the tests done, please get copies of the results, and post them at SarcInfo for one of the moderators to nelp evaluate them for your doctor. Don't accept the term "normal results", they don't mean that there isn't a problem with Vitamin D. We need the numbers.

Be sure that they freeze the D 1,25 sample.

Best to you,

*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: Profuse Sweating
Author: Bob in Michigan (167.73.110.---)
Date:   10-02-04 10:56

Yes, I started to sweat lots after getting sarcoidosis.
My chest and head are the only place that I sweat excessively (and with very little exertion).
Usually when I get night sweats, along with weight loss and fatigue, I get my ACE level checked and will always find it elevated. Then it's back on higher prednisone doses again for awhile.

 
 Re: Profuse Sweating
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   10-02-04 19:08

Bob In Michigan,
You will not get better if you continue to take prednisone. Prednisone only delays the resolution of your sarcoidosis, it cures nothing. For a time, prednisone will make you 'feel' better, but that is a false sense and will be replaced with worsening symptoms and some new ones.

CWD (Cell Wall Deficient bacteria) is the cause of your illness. Suppressing your immune system allows a very comfortable place for that bacteria to grow and multiply.

Besides the aforementioned, prednisone causes avascular necrosis (bone death), diabetes, cataracts and many other undesirable adverse side effects. If you haven't done so, ask doc to check your D metabolites which will let us know the amount of inflammation in your body.

Print out the Tutorials for Physicians and get them to your doctor. Stress to him/her that the MP is the course of treatment you want to follow. If this physician does not want to support your decision, we will try to help you find another. All of the symptoms you mention are classic sarcoid symptoms, you can read more here Hypervitamintosis Symptoms.

You are only going to make yourself worse by taking steroids. If you haven't done so begin staying out of the sun, eliminate all D from your diet, and supplements. Read or re-read all of the Patient Tutorials at the top of the page and any **starred threads.

Hope this helps, Caroline

 
 Re: Profuse Sweating
Author: Lottie (---.proxy.aol.com)
Date:   10-02-04 19:56

Bob in Michigan,

Have you been diagnosed with Sarcoidosis?

Caroline's exactly right, you are only going to get worse with Prednisone. I was diagnosed with Sarcoidosis in 1999. Profuse sweating, and night sweats were among my symptoms, .

Started with an abnormal echogram of my heart, and multiple symptoms, was placed on Prednisone, and two years later, I had a normal echogram of my heart. About two and one half years later some of my cardiac symptoms were returning, as well as the shortness of breath, and sweating. My most recent echogram of my heart shows the fluid around my heart has returned, and the left Ventricular wall has thickened more than it was on the first one, and my cardiac output is worse. That had me back on the internet, and I found SarcInfo.

I'm now on Benicar, off of Prednisone, have cut all Vitamin D out of my diet, cover up completely and wear my NoIR glasses all of the time. Many of my symptoms have already improved, one of them is that I'm not sweating nearly as much, or as often

I start the Minocin in about a week.

Read as much as you can on this site!! (but put on some sunglasses until you get your NoIR's )

*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: Profuse Sweating
Author: Sachiyo (---.nyc.untd.com)
Date:   10-21-04 10:48

It's interesting that I just came across this. I was dx with Sarc Jan. 2004, but I've had hyperhydrosis ever since I was a child. Unlike the rest of you, my sweating is limited to my hands and feet. Doctors have always said that I just have overactive sweat glands, so it can't be Sarc. or am I mistaken?

 
 Re: Profuse Sweating
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   10-21-04 21:42

Sachiyo,

IMO, if you have sarcoidosis, it should be your first suspect as the cause of any symptom. The way to find out is by doing the Marshall Protocol. This is called a therapeutic probe. If the symptom goes away with the MP, then you know it was caused by sarcoidosis. Many of us discovered that our asthma, fibromyalgia, migraines, arthritis, etc were actually sarcoidosis symptoms when they resolved with the MP.

Best,

Meg

 
 Re: Profuse Sweating
Author: Sachiyo (---.nyc.untd.com)
Date:   10-22-04 08:11

Meg,

When I was finally dx with sarcoidosis, 4 mons. had gone. By then, most of my severe symptoms had subsided and my Pulmo did not want to tx me with anything, since I was feeling better. 2 mons. later I had the nagging cough, and he decided to put me on predinosone for a month. He feels unless I'm really sick, there is nothing more that needs to be done. I have not mentioned to him about MP, I have an appt. on Nov.9th. I'm already convienced that he will think I'm crazy to suggest this idea, especially if I mention about my sweating! Having sweaty hands are so embarrassing, and it has effected even my self-esteem! My PCP is military, will they even consider MP? I'm pretty pessimistic about them as well. Unless I feel deadly ill, like I had in the past, I am sure they will be reluctant. But I'll try...

Thank you

Sachiyo

 
 Re: Profuse Sweating
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   10-22-04 21:05

Sachiyo,

You are probably right. Military specialists are usually among the most rigid. I hope you will let him know that your quality of life is suffering and that hundreds of patients who are being treated by their doctors with the Marshall Protocol are improving. His standard treatments are reserved for the desperately ill because they are so toxic and ineffective. You will be prescribed them again eventually if you do not treat the cause of your sarcoidosis with the MP.

I hope that you have the resources to find another doctor if you need to. It is the only way to get well.

Good luck,

Meg

 
 Re: Profuse Sweating
Author: Diana Pargeter (---.cache.pol.co.uk)
Date:   03-14-05 09:17

I have been having terrible night sweats recently, but am not sure they are due to herx. I am herxing all right, but that seems to relate to when I took my last minocycline dose (about an hour before bed, every other day). The sweating happens every night, between 2.15am and about 6.00am. I get the occasional hot flush in the day with the cyclic herx. Why should the night sweats be so regular, but not to do with the minocycline? Is it due to the bugs that are yet to be killed (presumably by the azithromycin etc that I am not quite ready for?), or is it due to something else? What else causes night sweats? I don't think I am into the menopause - my LH and FSH were alright when last measured.

Diana

Symptoms 30 years incl tremor & arm weakness, paraplegia, cardiac problems, SOB & joint pain. 3/03 25D 7.2, 1.25D 30 (ratio 4.2); 3/04 25D 4.8, PTH 49; 7/04 PTH 20. Av BP 80/50. 6/25/03 Diovan then 11/11/03 Benicar 40mg every 6hr. 100mg Mino.

 
 Re: Profuse Sweating
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   03-14-05 09:45

Diane,
A herx response may result in night sweats. Night sweats are a common symptom of hypervitamtosis D. Prior to beginning the MP were you troubled with this symptom?

Any symptom can be exascerbated by herxheimer.

A clear answer would be to back off on your abx. dose for a couple days and see if this symptom resolves. Do continue on your benicar dosage however.

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: Profuse Sweating
Author: Fred (---.qc.sympatico.ca)
Date:   03-14-05 14:44

Hi, I have been off VIT D for over 2 months and my sweating has gotten worse in the past week or so. I am avoiding light and everything. The night sweats went down considerably after going off vit d, now it is day sweats.
How is this?

Fred

dx Nov 2004 -- EN JUN 2004, OCT 2004-- Eyes SEP 2004, FEB 2005-- Lungs (1) JAN 2003-- Joints JUN 2004 No VIT D Jan 11 2005 Skin lesions-July 2005 Fatigue since Jan 2005

 
 Re: Profuse Sweating
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   03-14-05 17:36

Fred,

Sometimes things don't move as fast as we would like them to. Are you also wearing your Noirs both inside, especially while at the computer and watching TV and outside if you absolutely must go out during the sunlight hours?

Your do not give your D metabolite test results. Have you had yours tested? If so, would you please give your results. If you 125 is very high, your symptoms will of course be worse. It your periods of sweating are reducing, you will probably need to be patient as you work through this day time sweating.

Are you taking benicar or both benicar and minocycline and at what dosage?

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: Profuse Sweating
Author: Diana Pargeter (---.cache.pol.co.uk)
Date:   03-15-05 08:33

Caroline,

I looked back at my records. I had 10 days off Minocycline at Christmas, and had night sweats on 8 of those nights. So, I suppose they can't be straight herx. Before that they were slightly more likely during the night 30 hrs after the Mino (rather than 6hrs after taking it). Now they seem to happen every day.

Diana

Symptoms 30 years incl tremor & arm weakness, paraplegia, cardiac problems, SOB & joint pain. 3/03 25D 7.2, 1.25D 30 (ratio 4.2); 3/04 25D 4.8, PTH 49; 7/04 PTH 20. Av BP 80/50. 6/25/03 Diovan then 11/11/03 Benicar 40mg every 6hr. 100mg Mino.

 
 Re: Profuse Sweating
Author: Julia (---.cache.pol.co.uk)
Date:   03-15-05 14:57

Diana,

I had hot flushes an awfully long time before there were any other signs of menopause... it might be a possibility! After menopause they went away, only to return as a sarc sign a couple of years later (sigh). Now at last they've almost gone again, after more than a year on the MP.

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: Profuse Sweating
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   03-15-05 17:39

Diana,
Sweats, particularly night sweats, are a common symptom many of us experience. Sweating is also a symptom of
Hypervitamintosis D.

I think as time goes on and you progress on the MP, this will abate until you no longer experience sweating. Please make sure you are following ALL of the dietary and sun restrictions.
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

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This is an archive site, membership and posting are no longer allowed.

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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