Sarcoidosis Answers for Sarcoidosis Physicians and Nurses

Sarcoidosis Answers for Physicians, Nurses and Patients

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

For information about this breakthrough, please post your questions at the current study-site, or the Autoimmunity Research Foundation.

This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but much of it is now out-of-date.

** Patient Tutorials **

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

Click here to read "REMISSION IN SARCOIDOSIS"

How a Pathologist can see Bacteria causing Sarcoidosis

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

Weaning from Prednisone

Protecting your eyes in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Hypervitaminosis D Symptoms The SarcInfo F.A.Q.

Medical Abbreviations CBC Radio Show

Protocol Phase 1-First 3 months

** Papers for Physicians **

Antibacterial Therapy induces Remission

Implications for Autoimmune Disease
(Here is Fulltext preprint)

Antibacterial mechanisms for ARBs

Antibiotics in Sarcoidosis- The 1^st Year

Rationale for abx in Sarcoidosis

1,25-D and Angiotensin II

"New Treatments Emerge.."

Jarisch-Herxheimer in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

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

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Healthcare Workers and Sarcoid (active thread)

Author: Admin (---.gtecablemodem.com)
Date: 03-16-02 05:58

This thread has become so popular it is taking dial-in modem users too long to load all the old messages when they are trying to read the new ones

I have therefore archived the old thread (clcick here to access it) and would ask you to post new messages to this new thread (at least until it fills up, too

..Trevor..

Re: Healthcare Workers and Sarcoid (active thread)

Author: Admin (---.gtecablemodem.com)
Date: 03-16-02 05:58

Baby Infects Health Care Workers with Tuberculosis

A baby with undiagnosed tuberculosis infects some health care workers who are caring for it:
http://www.docguide.com/news/content.nsf/NewsPrint/8525697700573E1885256B66005CC140

..Trevor..

Re: Healthcare Workers and Sarcoid (active thread)

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 04-18-02 21:34

In light of new studies which (separately) linked Rickettsia helvetica and mycobacteria to sarcoidosis, I thought this article was interesting... http://www.findarticles.com/cf_0/m3235/11_63/67320807/print.jhtml

One might wonder whether this might explain how many healthcare workers and firefighters have sarcoidosis. Could it be blood-borne?

Belinda

Re: Healthcare Workers and Sarcoid (active thread)

Author: Caroline McGuirl (---.proxy.aol.com)
Date: 05-10-02 13:29

Dear Belinda:
I have retired now but I was a nurse for many many years. I was diagnosed just in the recent few years, however.
I do believe I have had this disease for a long time (Sarcoidosis). I have been on and off, on and off the drug Prednisone. I had Saracoidosis show up in the lungs first. I now have skin problems, rashes, I had Shingles (Herpes Zoster) and frequently have mouth sores (Canker sores).
I started to do a survey a while back for the World Sarcoidosis Society about the health field including nurses, EMT's, firefighters, etc. I am sure it has something to do with the environment and a susceptibility of certain people to become affected by this disease. What it could be...I am not sure.
Has anyone come to any kind of conclusion?
Thank you.
Caroline

Re: Healthcare Workers and Sarcoid (active thread)

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 05-10-02 15:15

Caroline,

I don't know a lot about this subject, but could the granulomatous reaction begin with something as simple as the gloves worn by health care workers?

I found this article http://www.regentmedical.com/usa_rgnt/summrenz.htm which concluded that glove "starch powder leads to granulomas by influencing the inflammatory response, as mediated by macrophages."

Also, could latex be the original trigger for granuloma formation? I have to ask my health care providers to use non-latex gloves because I have a reaction to latex (immediate skin rash). Look at this article http://allergy.edoc.com/1997_archives/pdf/oct_97/277.pdf. It talks about atopy. Could "atopy" be part of the predisposition to sarcoidosis?

I'm just offering ideas, because I don't know. Actually, none of us knows what started our inflammatory reaction and granuloma growth. I suppose that what is important is understanding how to deal with it now that we have it.

Belinda

Re: Healthcare Workers and Sarcoid (active thread)

Author: Dawn (---.proxy.aol.com)
Date: 05-15-02 08:38

My sarc flare started 4 days after my initial hep b shots at nursing school. I have also been an animal nurse and an auxillary nurse for several years. I think the hep b was a trigger

Re: Healthcare Workers and Sarcoid (active thread)

Author: rose (---.proxy.aol.com)
Date: 03-31-03 13:19

Hello,
Has any one developed hand tremors? I have been on steroids on and off since 1984.
Thanks,
Rose

Re: Healthcare Workers and Sarcoid (active thread)

Author: Kathleen (65.121.96.---)
Date: 04-03-03 17:40

Hello all -

Interesting question - I am a healthcare worker, although I have been away from patient care for several years; my father and sister, both affected with sarcoidosis, are a pharmacist and police officer, respectively. I was admitted to my hospital a couple years ago, and the nurse who took care of me now has sarcoidosis. (I was also married to a firefighter/paramedic.)

Just a thought - but could it be that it appears that more healthcare workers have sarcoidosis because healthcare workers are more aware of treatments, options, symptoms, and are therefore more likely to have or be able to push for a diagnosis? Reading these threads, there are an awful lot of confused and frustrated patients out there - including me! I know I am fortunate to work in a hospital, where I was taken seriously because my co-workers could see my deterioration...I was also better able to research and basically know what I was looking for, and what I was looking at...

Take care,

Kathy in Wyoming

Re: Healthcare Workers and Sarcoid (active thread)

Author: Meg (---.188.244.147.euc.wi.charter.com)
Date: 04-04-03 08:56

Kathy,

IMO, the higher incidence of sarcoidosis among healthcare workers is their higher exposure to infectious antigens. As a healthcare worker myself, I've had my share of needle sticks and been exposed to lots of mycobacteria because of the sick people with whom I've come in contact.

I'm not sure your perception of healthcare workers as being more persistant in getting good medical care is accurate. As a group I think we are just as likely to deny, remain passive or trust medical authorities. Sometimes a member of the medical profession is taken more seriously but just as often they are patronized as having a little knowledge and being too aggressive in their search for answers.

As you describe it, your deterioration was obvious before you were taken seriously. Certainly your medical background helped in your research but it is your intelligence to analyze the situatation and personality to pursue answers that had more to do with you getting a diagnosis and a treatment that is working.

So I don't think the statistics are skewed by accurate diagnosis for healthcare workers as opposed to the general public. I think we just have many more opportunities to acquire microbes and if we are genetically predisposed then the disease will manifest itself sooner or later.

Meg

Re: Healthcare Workers and Sarcoid (active thread)

Author: Kathleen (65.121.96.---)
Date: 04-04-03 13:57

Meg -

Points well taken! You are correct - I also have had needlesticks, exposures and worked as a paramedic before bloodborne pathogen precautions. Very interesting!!! I entirely forgot the bacterial aspect (shame on me!) and was just thinking about how hard it is to get a diagnosis.

Thanks, Kathy in Wyoming

Re: Healthcare Workers and Sarcoid (active thread)

Author: Jeri Nasci (---.proxy.aol.com)
Date: 04-04-03 16:05

I was dx. 3 yrs ago with sarcoidosis. I was told, 8 months later that it was gone, less than a 2% chance of returning. When I presented with Sarc., I had a low grade fever, cough, shortness of breath, feet and ankles swelled, eyes were sensitive to light, headaches, erythum nodosum on shins, and it showed up on a chest xray that lymph nodes were enlarged. I was also told that my pain in my wrists, ankles and back was probably related to arthritis with the sarc.
I'm 37, female of German/Swedish descent.
I don't know if that matters, it always seems to when they say it is gone.
I've had a history of meningitis (6 yrs ago), chronic migraines (worse this past year), still eye sensitivity along with yellow spots near the iris and little clear bumps that form on my eyelid linings, fatigue, fatigue, fatigue, feet still swell randomly, and tons of back problems. IE, was told sacroillitis, and also that my entire spine was in a spasm that made it difficult to walk with all of the pain involved in my legs, butt (sorry) hips, and low back. Also, a month before the last back spasm, while driving, my long toe, next to my big one, started to spasm and pull downward in the middle part of the toe! It lasted for several minutes and I couldn't drive. Not sure what that's about.
I have about 3 good days, to 4 bad days a week. Yet, it's gone?
Then what in the world is going on here? Am I losing my mind? Sometimes I am so forgetful, my husband is just amazed at how quickly I forget things. I feel so fuzzy headed and just 3 weeks ago, vertigo started and I never had that before! It makes me very nauseated.
So, at this point, I no longer have insurance and am schedule in May to see a finc. eligibility expert to see if I can see a local medical student/dr.
Should I bother with this, or is this just me getting old?

Thank you for your help, you can't imagine how much it is appreciated.
Blessings,
Jeri

Re: Healthcare Workers and Sarcoid (active thread)

Author: Admin (---.vnnyca.adelphia.net)
Date: 04-04-03 16:14

Jeri,
You will find all the symptoms you have described, even the "pull downward on the middle part of the toe" documented here by other Sarc sufferers.

But now you have found folks that have figured out how to overcome their sarcoidosis and put it into remission. So it is time for you, too, to start smiling again

Can you give a list of medications you have been on, over the years, and what you are taking now?

Welcome to SarcInfo
Trevor

Re: Healthcare Workers and Sarcoid (active thread)

Author: Jeri Nasci (---.proxy.aol.com)
Date: 04-04-03 20:40

Hi Trevor,

Thanks for the encouragement. They never put me on anything. The only thing I have taken lately is over the counter headache and migraine med.'s and one prescription migraine med. Nothing much.

Your kidding about the toe thing! That is insane isn't it? To have someone else have the same thing, I'm actually happy about it, because now I know I'm not crazy. Thank you for telling me.

So, seriously, does this sound like good old sarc, or has it moved to my CNS? I've been reading some, but my eyes get tired. I've dimmed my screen on my PC, but I still have to step away for awhile.

Thanks again Trevor.

Blessings,
Jeri

Re: Healthcare Workers and Sarcoid (active thread)

Author: Admin (---.vnnyca.adelphia.net)
Date: 04-04-03 20:56

Jeri,
Yes, it sounds like sarc, and it really doesn't matter where it has spread to, you treat it the same basic way - with Minocycline.

ARBs will stop your migraines. Here is a study to show to Doc. But you need an ARB every 8 hours for a blockade to be effective in a Sarc patient.

Try wearing the NoIR glasses (901 shade) when using your computer - it will help a lot. It took about 3 months for the antibiotic therapy to return my eyes to normal, as the antibiotic does not perfise very well into the eyes or ears. But it did fix both, eventually...

..Trevor..

Re: Healthcare Workers and Sarcoid (active thread)

Author: Jeri Nasci (---.proxy.aol.com)
Date: 04-05-03 15:12

Hi Trevor,

Another question. What post has good information in relation to symptoms that I could check on the board, ie, "the toe thing".

Also, why would a doc. say that it is gone. Not in remission, but gone. Some websites say that it goes away, "burns itself out", others say "remission". Where's the truth? What's the real story? Does anyone know for sure?

I'm so glad to have found this board. What a blessing!

Thanks again,
Jeri

Re: Healthcare Workers and Sarcoid (active thread)

Author: Meg (---.188.244.147.euc.wi.charter.com)
Date: 04-05-03 16:35

Hi Jeri,

Welcome to SarcInfo. I'm one of the success stories. I had many symptoms similar to yours and my condition has greatly improved with avoidance of Vitamin D, Benicar and Minocin. I'm not sure what information you are seeking in regards to symptoms. Yours sound like they are due to Sarcoidosis and the hypervitaminosis-D that is caused by the Sarcoidosis inflammation.

I suggest that you read the patient tutorials and then the starred threads. That should give you most of the information you need to begin your road to recovery. Specific symptoms are important only in that those are the ones you are most likely to have become worse temporarily due to the Herxheimer reactions with antibiotic treatment.

Doctors speak of remission but probably have many different definitions for it. Some doctors do not recognize the symptoms of hypervitaminosis-D as being part of Sarcoidosis and will tell a patient the sarcoidosis is gone or in remission because the organs affected by the lesions are not giving them trouble at that time. They don't use the word cure because they are unaware of or refuse to accept the mycobacterial etiology. A spontaneous remission is more likely to occur if a patient has the acute, rapid onset form of the disease. Perhaps these patients were infected with short-lived cell wall deficient bacteria which died off or perhaps their immune system was eventaully able to kill the bacteria in the the normal way. Doctors who have seen or read of this phenomenon of spontaneous remission are likely to be positive regarding outcome and dismissive of the symptoms that a patient may be struggling with. Other doctors who have seen or are aware of patients with sarcoidosis who became very ill or even died are likely to give their patients a grim prognosis and/or treat aggressively with toxic medication.

Now that we know the cause of Sarcoidosis and have seen the effectiveness of antibiotic with ARBs therapy, we can begin to speak in terms of a cure. I encourage you to consult your doctor about this novel, new, safe treatment. The sooner you can begin this therapy the sooner you will be able to talk about symptoms you used to have rather than worry about what they might mean.

Meg

Re: Healthcare Workers and Sarcoid (active thread)

Author: Jeri Nasci (---.proxy.aol.com)
Date: 04-05-03 20:07

Hi Meg,

Thank you very much for the info. I guess the meaning was important to me, because it conflicted with the last pulmonoligist report that I was cured, or as I said "less than a 2% chance of returning". When I tried, about a year later to question the new and some of the old symptoms, I was easily dismissed and treated basically as if I was a nut case.
So, that is why I was so interested in the symptoms. I guess I was needing to convince myself enough, so that when I finally get in to see a dr., which won't be for another month, I can push for the tests that need to be done and argue my case. I don't want to push the issue and be wrong and written off as a hypochondriac or something. I think that when dr.'s don't know what's going on, it's easy for us to feel as if that's what they are thinking.
Also, I've never known sarc to be bacterial related until now. And, also, never heard of hypervitaminosis-D, I'm learning new things.
I truly appreciate the help and answers that I'm getting here.
This is a great board.
Blessings,
Jeri

Re: Healthcare Workers and Sarcoid (active thread)

Author: Mary Kellerman (---.netquest-ks.com)
Date: 05-03-03 04:00

I have been diagnosed w/ sarcoidosis several yrs ago (I also have several other illnesses - ex: parkinsons disease, thryroid disease, chronic anemia, severe scoliosis, just to name a few and have lost several internal organs including my bladder-have an ostomy, my reproductive system, and part of my intestines). I am on oxygen for several reasons 1 - the scoliosis hinders my breathing. 2- the parkinsons has damaged the muscles and nerves in the esphogus and its at the point where they can no longer dialate it. 3. Sarcoidosis has left gramunolotas (sp) and scarring in the same lung that is hindered by the scoliosis and also hinders my breathing. I get B-12 injections monthly for the anemia, and a pharmacy full of meds for everything else a month. I am just worried of loosing another organ due to sarcoidosis - I also have polycystic kidney disease and I almost lost my kidney (left one) twice in a 3 month period and have scarring in that kidney. I also pass alot of kidney stones - even though I drink more fluids than the average person (have to due to the polycystic and the urostomy). Does anyone have any suggestions?

Re: Healthcare Workers and Sarcoid (active thread)

Author: Admin (---.vnnyca.adelphia.net)
Date: 05-03-03 04:17

Mary,
I will assume you are a healthcare worker, and give a medically sophisticated reply.

Firstly, when looking at your list of maladies, I find them all consistent with the maladies which we strongly suspect are caused by CWD bacteria. Please listen to CBC Radio' s"Bacterial revolution" for background to this statement. The history you describe is also consistent with the spread of such an infection.

The kidney stones are the true give-away of the likely presence of a bacterial invader. They are indicative of high level of the secosteroid hormone 1,25-dihydroxyvitamin-D which in turn modulates the PTH and Thyroid hormones, and just about every other system in the body. This secosteroid is generated when a Th1 immune reaction is mounted to a bacterial invader. It can be measured with an 8ml blood draw. Just about every US lab can organize these tests..

Take a look at the Tutorials at the top left of this page, and especially the papers at the top right of the page. I know there is a heck of a lot of reading there - but you will find the answers you are seeking.

So, in summary, get your D-metabolites tested, and an elevated D-ratio will confirm my suspicions. Take a look at this reference for a quick summary of D-ratios and etc.

Welcome to SarcInfo,
Trevor

Re: Healthcare Workers and Sarcoid (active thread)

Author: Brad Walker (---.cox-internet.com)
Date: 05-06-03 18:21

My wife is a health care worker and has been diaginosed as stage 3 sarcoid. She getting ready to take pregnasone again and really doesn't want to. How sure is this other treatment you are discussing?

Thank You

Re: Healthcare Workers and Sarcoid (active thread)

Author: Meg (---.188.232.59.euc.wi.charter.com)
Date: 05-06-03 19:38

Hi Brad,

Welcome to SarcInfo. Speaking as a fellow healthcare worker and one of the success stories that you can read about in the success stories topic thread, I am sure of this treatment.

I am sure that it works and I am sure that it will not harm me.

If your wife is getting ready to take Prednisone again it doesn't seem to have worked for her. This is a common story as Prednisone suppresses the immune system allowing the bacteria to proliferate. If it is stopped the symptoms come back, sometimes worse than before. It it isn't stopped a patient can develop complications as bad as the sarcoidosis.

She has nothing to lose by tryng this treatment and everything to gain. I hope she will discuss it with her physician. Many folks are getting well and she can too.

My best to her,

Meg

Re: Healthcare Workers and Sarcoid (active thread)

Author: Olive Shinholster (---.89.102.166.ip.alltel.net)
Date: 09-13-03 19:27

Hi,
I am a Nurse and I have been a healthcare worker for 31years. I was diagnosis with Sacoridosis in 1979. It affected my lungs. I started having problems with severe allergic reactions 6 years ago and was on Prednisone frequently for short periods. Two years ago, my physician advised me to take Prednisone due to SOB and elevated ACE serum. I have been on Prednisone for 2 years. I am presently taking 10mg every other day, but I'm having some side effects and want to come off it. I was so happy to find this site because I'm trying to find some other form of treatment so I can come off this Prednisone. I have compiled Information to discuss with my physician and it was very important to find this up-to-date information to discuss wth him. Thanks Meg, your information was very helpful.

Re: Healthcare Workers and Sarcoid (active thread)

Author: Linda Duckworth (216.65.202.---)
Date: 01-07-05 14:25

I have a question regarding what I thought was hives on both of my legs.... I have gone to the Dr's office (which my Dr deals with Sarcoid patients). She told me that it was not hives on my legs but Sarcoidosis.
I have had this for approx 4 months without my legs completely clearing up..... I received a shot of Cortozine and written a perscription for cream for the itching.........I still continue to itch and my legs look horrible (not to mention its difficult when shaving.

Any advice?

Thank you,
Linda Duckworth

Re: Healthcare Workers and Sarcoid (active thread)

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 01-07-05 16:09

Hello Linda,

Welcome to SarcInfo.com. If you have been diagnosed with sarcoidosis, sarcoidosis should always be suspected as a possible cause for skin rash. You can find a lot of information, including lots of photos at another thread, Skin sarc, what does it look like?

You've come to the place to find out more about this disease and how to treat it. Begin by reading all the tutorials at the top of this page, and then seriously consider a temporary lifestyle change to strictly control all sources of vitamin D. Ultimately, implementing the Marshall Protocol is likely to rid you of your sarcoid skin rashes. It did mine.

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: Healthcare Workers and Sarcoid (active thread)

Author: anthonyhope (---.sb.sd.cox.net)
Date: 01-31-05 11:49

I would like to know if anyone has sarcoidosis on their nose or knows of someone that does have it. I also have a few on my neck, forehead which seem to be drying up, & of course my doctor found one right by my lung. I'm on the Phase 2 of the protocol, am hanging in there, am very grateful to be part of this protocol, but it's just so frustrating, because since I earn my living by working in the medical industry people do judge me by my appearance & the sarcoid on the end of my nose doesn't help matters when I go on interviews to work with sick patients. So I just want to know if anyone has the same kind of sarcoid that I have. As far as I've read on this site, everyone else seems to have sarcoids of the lung more than anything else. It's terrible enough to have this disease, but to have it on the end of your nose where everyone can see it, it's sometimes too much for me to handle! I would appreciate any response back that anyone can give me. Anthonyhope

Re: Healthcare Workers and Sarcoid (active thread)

Author: Lottie (---.proxy.aol.com)
Date: 01-31-05 22:24

Anthony,

I have quite a few skin lesions everywhere, including my face. I have been fortunate in that it doesn't seem to be as extreme as yours is. I have noticed some occasional redness, and swelling on the tip of my nose as well, and as I go through the MP, I realize that it could flare up worse yet.

My eyelids, the skin below my eyes, and patches on various parts of my face (and other areas) have been inflamed, red, itchy, and scaly since about the second month on the MP. They seem to get better, and then they flare up again. Sometimes they feel and act as though they've been "scalded". I can't wait for all of that to settle down!

Many people have skin lesions, and what is diagnosed as "psoriasis" is often actually one of the symptoms of Sarcoid, and they have had great improvement as they have gone through the MP.

I'm sure that it is difficult for you. I hope that people look to your abilities rather than appearance. Appearances can be very deceiving.

Perhaps, if given the opportunity, you can turn it into a learning experience for them 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

Re: Healthcare Workers and Sarcoid (active thread)

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 01-31-05 23:00

Anthony,

It sounds like you may have lupus pernio-type sarcoid lesions. I used to get those around my nose and lips and I had a flare of my skin sarcoid as a Herx when I entered Phase Two. That may be what is happening to you.

I had to be diligent about wearing my hat with a broad brim and absolutely avoiding sunlight as much as possible when I had these lesions. I also found it was important to protect my nose, face and lips from wind and cold, because they can aggravate these lesions. A neck scarf works well for this purpose during winter. I've seen some nice cashmere and acrylic neck scarves in the stores this season, so you might check that as another tool.

It took less time for my Phase Two Herx of skin lesions to clear that my original skin clearing on Phase One. Most articles I've read indicate lupus pernio is chronic, so patience will be needed here. I have clear skin now - clearer than ever - and I hope that you will reach that point, too.

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: Healthcare Workers and Sarcoid (active thread)

Author: Meg (---.190.172.91.eau.wi.charter.com)
Date: 01-31-05 23:27

Anthony,

You may find that applying 2% Ketoconazole cream to exposed areas of your face helps shrink the lesions.

There are published reports that 2% ketocoanzole cream stops production of 1,25D by skin cells in response to radiation. Several of us here, on the forum, have used ketoconazole on a short-term basis, and noticed it stopped our usual reaction to sunlight exposure on the face.

The PubMed article explaining 2% ketoconazole cream's blockade of human skin cell synthesis of 1,25-D is at this link.

Best,

Meg

P.S. When you have a minute, please add a signature line. This data, which will appear each time you post, greatly helps the moderators to answer your questions.

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: Healthcare Workers and Sarcoid (active thread)

Author: Tom (---.cable.mindspring.com)
Date: 02-01-05 11:48

I have been diagnosed w/ sarcoidosis two yrs ago in the lungs. I have talked with my PCP about the marshall protocol and he has agreed to start me on phase one with 5mg of benicar for about a week and then minocycline. I am a bit confused about the dosages of the benicar and minocycline. and how long to take the benicar before starting the minocycline.

Thanks
Tom

Re: Healthcare Workers and Sarcoid (active thread)

Author: Meg (---.190.172.91.eau.wi.charter.com)
Date: 02-01-05 23:20

Tom,

The phase one guideline is very specific about the dose of Benicar and how long you should take it. Please ask your doctor to read it and follow it exactly. 5mg of Benicar will do you no good and may even make you feel worse.

Please read also, Why shouldn't we ramp up the dose of Benicar?

When you have a minute, please add a signature line. This data, which will appear each time you post, greatly helps the moderators to answer your questions.

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: Healthcare Workers and Sarcoid (active thread)

Author: Tom (---.cable.mindspring.com)
Date: 02-02-05 07:23

Thanks... I was a little confused... i have read the phase one and I have talked with my Dr. and have started the benicar 40mg every 8 hrs. Will post my test results when i get them. tom

Re: Healthcare Workers and Sarcoid (active thread)

Author: Terrilyn (---.roylok01.mi.comcast.net)
Date: 02-06-05 20:10

Hello everyone. I am a healthcare worker and just got diagnosed last week with sarcoid. I had a sizable tumor removed from the fourth tendon, and radial and ulnar nerve branches of my left hand in december, prompting the diagnosis. In reading this thread, I now realize that I have a lot of the symptoms that others describe, including the 2nd toe spasms (which shocked me too!) Perhaps my disease manifestations were hidden for a long time due to the fact that I have been on benicar (for HTN) for several years now, and I have always fervently avoided the sun. Even as a child, the sun made me sick. What do I do now and who is the best speciallist to help me manage this disease? Thank you.

Re: Healthcare Workers and Sarcoid (active thread)

Author: Lottie (---.proxy.aol.com)
Date: 02-06-05 20:35

Terrilyn,

Welcome to SarcInfo.

You will probably start thinking back as you learn more, and realize that you have probably had Sarcoidosis for an even longer time than you think.

The levels of Benicar that you have probably been on for high blood pressure are not really effective in fighting Sarcoidosis. The Marshall Protocol requires 40mg taken at least evey eight hours, and every six hours is actually more effective. That with antibiotics taken in a novel way will help you to recover.

You have definitely come to the right place to learn how to recover from Sarcoidosis. We now know that it is caused by Cell Wall Deficient (CWD) bacteria that have learned not only how to hide from the immune system, but to live in it.

Please start reading everything that you can about Sarcoidosis, starting with the patient tutorials, at the top of every page.

You also want to stop taking or eating anything with vitamin D in it... foods and/or supplements, including, but not limited to eggs, fortified dairy products, fish and fish oil. Start reading labels! And, don't forget that some things are made with eggs or egg yolks.

Also, start covering up completely when you go out, and you will want to order the NoIR sunglasses as soon as you can. Windows in your home should be covered to block the sunlight coming in.

We have found that most patients have had more luck discussing the Marshall Protocol (MP) with their primary care doctors. The specialists for Sarcoidosis are generally Pulmonologists, and are not as open to this new approach to Sarcoidosis as the general practictioners are.

The pulmonologists also tend to be mostly concerned with the lungs, and not with the fact that Sarcoidosis is a systemic disease that can attack ANY part of your body.

Please check your inbox for more information.

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: Healthcare Workers and Sarcoid (active thread)

Author: nick (---.sb.sd.cox.net)
Date: 02-10-05 23:53

Thanks for the information Meg. By the way, where does one get ahold of this ketoconazole 2% cream? I sure hope it can reduce the size of the lumps on my nose. Also, how come nobody has ever mentioned it before? When I first started the MP I was asking about such a thing like crazy and I even phoned Trevor who mentioned a couple of possible ointments with metronidazole or some other tetracycline in it and was told I may have to get it from a veterinarian or tack shop for horses but no mention of this one. Is this a new find in recent weeks or months? Whatever the reason, thanks once again for your help.
Best Regards, Anthony

Re: Healthcare Workers and Sarcoid (active thread)

Author: nick (---.sb.sd.cox.net)
Date: 02-11-05 00:11

Lottie, in a perfect world people wouldn't judge by appearances but (especially) in Southern California (king empire of superficial people) to hell with what's inside that counts...it's all about the surface. Big degrees, fancy clothes, power-job, fame, attractiveness, etc. ,and if you have none of that, plus you have nose goblins, you're basically labeled and 86ed. Wish it weren't true but it quite often (more than not) is. Thanks for all correspondence and hope you will meet up with me here in Santa Barbara some day to even just look at my skin lesions and tell me if I have any hope.
Best Regards, Nick

Re: Healthcare Workers and Sarcoid (active thread)

Author: Lottie (---.proxy.aol.com)
Date: 02-11-05 00:54

Nick,

The Ketoconazole 2% cream is available by prescription.

It may not have been mentioned to you because we (at least I) generally think of it as something to reduce the formation of D in our skin. I'm not out in the sun that much, and so I haven't tried it. I hadn't thought about the "plus" that it seemed to help get rid of lesions.

I know you've had a time of it. I don't fit into the "Southern California style" either, never really cared about it I guess. And, I was born in California, although, courtesy of the Navy I spent most of my life in Hawaii.

I know that some people have given me a hard time about stuff, and I usually tell them about Sarcoid. That I've been fortunate to find a treatment that is helping me get well. I often throw in the diseases that they are more familiar with, or at least have heard about that are in the same category. Such as Rheumatoid Arthritis, Crohn's, Chronic Fatigue Syndrome, Lyme etc.

Perhaps we can meet sometime. That would be nice

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: Healthcare Workers and Sarcoid (active thread)

Author: nick (---.sb.sd.cox.net)
Date: 02-16-05 17:52

Hi Lottie,
Thanks for the info on the cream. I hope it works. I'm trying to get my doctor to give me a prescription for it. That would be great if we could meet up. You can reach me at my girlfriend Leona's home (I visit often) .
Take care, Nick

Re: Healthcare Workers and Sarcoid (active thread)

Author: Toni (---.il-chicago0.sa.earthlink.net)
Date: 12-28-05 21:03

Hello and I have been diagnosed with sarcoid.....I have read that alot of peoples lungs are affected but mine is attacking my organs. I am always tired and the things that could take me five minutes to do, takes hours. I experience night sweats and spasms. I just recently went to the doctor and it is now affecting my eyes. I am 36 years old with 2 children.....can anyone give me some advice. Will I be able to continue work?

Toni

Re: Healthcare Workers and Sarcoid (active thread)

Author: Lottie (---.proxy.aol.com)
Date: 12-28-05 21:37

Toni,

Welcome to SarcInfo. My Sarcoidosis doesn�t seem to have affected my lungs much, if at all, either. I have never had an abnormal chest x-ray. I do get short of breath, but I have inflammation in my heart, that could also explain that. Fatigue and night sweats are also common with Sarcoidosis, and I have experienced both as well.

Patients with Sarcoidosis are unable to regulate the production of vitamin D, and you will probably recognize many of the symptoms here at this site, Hypervitaminosis-D Symptoms (Hypervitaminosis-D refers to an excess of vitamin D)

We now know that Sarcoidosis is caused by cell wall deficient (CWD) bacteria which have not only learned to hide from but to live within the immune system that is supposed to be killing them. The Marshall Protocol (MP) is the only treatment presently in use that will assist the body in killing these bacteria that are the cause of Sarcoidosis. Sarcoidosis does not go away on it�s own, or with the standard treatments such as Prednisone which only shuts down the immune system. The immune system is the body�s only weapon against the bacteria. With it shut down the bacteria are allowed to multiply without anything to stop it. You do not want to take any immunosupressants.

I hope that you will read as much as you can on this site, and our sister site Marshall Protocol.com. Start with the information in the patient tutorials box in the upper left hand corner of each SarcInfo page.

What is the Marshall Protocol?

What kind of work do you do? And, how old are your children?

I will be sending you additional information by email. Please feel free to ask questions about anything you need help with after reading the information.

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: Healthcare Workers and Sarcoid (active thread)

Author: Toni (---.mo-stlouis0.sa.earthlink.net)
Date: 12-29-05 20:00

Lottie,

I have two boys 11 and 5 and they are a hand full. Currently I am an Office Assistant at an Elementary School and I work part-time at a restaurant. I am having problems sitting down and standing up for long periods of time. At this moment I am not taking any medication but I am what you say in remission. I recently had a bone density test. Now I am waiting on my results from that. I try not to complain but there are times that my body aches bad. Can this disease affect your reproductive organs, because now I am starting to have problems there also. Whatever info that you can give me please do so. Where are the conferences held at?

Thanks,
Toni

Re: Healthcare Workers and Sarcoid (active thread)

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 12-29-05 21:32

Toni,

From the aches and pains you described, it doubtful sarcoidosis is in remission. You need to understand that physicians often declare sarcoidosis is "in remission" once chest imaging (x-rays and CT scans) are no longer worsening, without considering the systemic symptoms of the disease like fatigue, general pain, brain fog, memory problems and stiffness. Sadly, some physicians may not recognize these generalized symptoms as related to sarcoidosis. We know they are, though, because they go away when sarcoidosis is successfully treated.

Sarcoidosis can affect both male and female reproductive organs. You can read about female problems in the thread Sarcoidosis and Pregnancy.

Our 2005 conference was held in Chicago. If you were unable to attend, you can order a copy of the DVDs that are a record of the presentations. Order DVDs online by clicking on the "Conference DVDs" image at the top of the page or CLICK HERE.

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: Healthcare Workers and Sarcoid (active thread)

Author: Toni (---.il-chicago0.sa.earthlink.net)
Date: 12-30-05 11:09

Belinda,
Please keep me posted on the conferences because I would like to go. Thanks for your reply. It feels good to know that there is somebody out there that can relate. This disease has really taken a toll on my life because I was the one that really never got sick. I watched my grandmother go from doctor to doctor when she was sick. It is hard to adjust to all the physicians you have to see.

Toni

*Diagnosed in 2003 after gall bladder surgery,
affecting eyes, liver, spleen, lungs, joints, reproductive organs and fatigue
**off prednisone
Starting to take Fossamax 70 mg and Oscal 500 mg

Re: Healthcare Workers and Sarcoid (active thread)

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 12-30-05 13:23

Toni,

We welcome your continued browsing here on the website, because lots of information is posted and archived here. You can find lots of information using the search engine at the top of each page. Just enter your search words and select "all dates."

Please keep checking this website, because notices of any future conferences will be posted here. Keep in mind, though, that you can find everything you need to know in order to discuss implementing the Marshall Protocol with your physician.. on the websites. If you can't find what you are looking for, just ask. If you decide to use the MP, we are here to help with answers.

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: Healthcare Workers and Sarcoid (active thread)

Author: irishrn_us (12.155.253.---)
Date: 12-30-05 13:47

I am also a healthcare worker, diagnosed with sarc. in spleen 2003, currently stage 3 lungs and also liver. I am also a veteran and a dependent wife. So I also have the military history. I currently work in ICU in a hospital in the U.P. of Michigan.

PFT's 4 jan 06
last ct jul05 stage 0, current ct 12/05 stage 3.

JAN

Newer Topic | Older Topic

Historical perspective on Sarcoidosis:

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

Go to the Sarcoidosis Information Discussion Info Message Board Forum

Sarcoidosis

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