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 The material here provides useful background, but most of this site is now out-of-date.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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 sarc of the nervous system
Author: Ellen Bragason (---.speed.planet.nl)
Date:   06-11-03 05:40

I wondered if there was any info about this... I have sarc of the lungs, and now the Neurologist suspects that I have it in the nervous system.. I go for lumbar punctures on Friday. Is there anyone out there who has some answers???? I have only recently been diagnosed, and still very much in the dark. Thanks so much Ellen
 
 Re: sarc of the nervous system
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-11-03 07:05

Dear Ellen,

Welcome to SarcInfo. If you take a look around the site you'll see that this subject has come up before. Use the search feature to type in key words, then change the setting to all dates for the most complete search.

I have sarcoidosis involving the nervous system. It doesn't matter what part of your body sarcoidosis affects. The treatment is the same and there is no need to assess every system of the body. Take some time to read the list of background information on sarcoidosis at the bottom of this page and the patient tutorials at the top of the page. The starred threads are also very important. This will give you a good idea of the eitiology and proper treatment of sarcoidosis.

Neurologists love the data from a spinal tap but this very invasive test is not going to give them any information they need. The test you want is a simple blood draw to determine your levels of serum ACE, 25-D and 1,25-D.

My nervous system involvement symptoms have responded to treatment with ARBs and antibiotics. I never had a spinal tap and would never agree to one for diagnosis of sarcoidosis. I hope you will read the information, here, ask questions about any of it you don't understand and then take the information to your doctor. Many folks are getting better and you can too.

Meg
 
 Re: sarc of the nervous system
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-11-03 07:14

Ellen,
I hope your doctors have told you that a lumbar puncture is a very dangerous procedure?

Have they told you what they hope to achieve from it? How your treatment might change as a result of what they find in the test?

I asked for a lumbar puncture, one day, in a fit of desperation, but my primary wouldn't let me have it. That was 1978. Now that I have been cured I know for sure that this test would have done nothing to improve my survival or treatment, and it might have maimed me.

..Trevor..
 
 Re: sarc of the nervous system
Author: Caroline (---.win.org)
Date:   06-11-03 08:13

Ellen,

I too have sarc with neurologic involvement. (Sarcoidosis with CNS involvement or Neurosarcoidosis). But, by any name it is still sarcoidosis and it does and will respond to antibiotic and ARB therapy.

A pulmonary doctor diagnosed sarc. and sent me to a neuro. (i ended up with two of them). I followed the "expert's" advice and had a spinal tap, nerve conduction tests and a couple EMG's. The end result, I still had sarc. I experienced pain with all three procedures and the doctors had no further information. The 'experts' prescibed steroids, IV solumedrol, methotextrate, and neoral. All the immunosuppression provided a bacterial host with very fertile ground to grow and multiply. Each round of suppression exacerbated my symptoms.

My grown kids wondered aloud to me, "mom, you seem to be helped and then you just get worse, why?" I found out why when I found SarcInfo and Trevor.

Read all the information here starting with the Essential Reading, Tutorials found at the top of this page. There is a lot to grasp, ask questions and you will be on the road to recovery.

Caroline
 
 Re: sarc of the nervous system
Author: Tammy (---.cox-internet.com)
Date:   06-16-03 18:02

Hello,
Question 1,000,002...3..4.. he-he!
This past week my face "hurt" to touch, and my mouth and gums are really sore. Could this be neuro-sarc? Can pred. cause sore gums? Also my back and hips are also VERY painful...so much so, I had to take some Lortab which I had left over from a surgery. To know me is to know I do not take pain meds of this sort unless I really need to. Can neuro-sarc cause this pain? Thanx..~Tammy~
 
 Re: sarc of the nervous system
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-16-03 18:17

Tammy,
Prednsione can destroy your hip and your vertebrae, and is the most likely cause for that pain.

Measure your 1,25-D and it will give you a pretty clear picture of whether the pain could be coming from 1,25-D acting on the muscles, but I suspect it is prednsione. Johns Hopkins (here) says 20mg of pred can destroy the hips with avascular necrosis, and this article specifically addresses prednisone destruction of the spine.

Sore gums are usually caused by bacteria. There is a thread on SarcInfo about seeing the dentist on time where some solutions are discussed.

Forget about neuro-sarc. Almost all sarc patients get neuroses and psychoses and paresthesia and neuropathy yet none of them are due to a purely neural sarcoidosis. All respond (albeit slowly) to minocycline.

..Trevor..
 
 Re: sarc of the nervous system
Author: Gerard (---.tstt.net.tt)
Date:   06-16-03 20:27

Hi Ellen,
I have seen so many doctors/specialists over the years that my brain still spins from it. However, the most comprehensive information and advice that I've seen so far is from Trevor and Meg, more so because they themselves have experienced the pain and know what they are talking about. My advice is to stick very close to them and follow their advice. There is also a wealth of information on this site which will guide you almost every step of the way. I am even using this site to help with information for my own doctors who are treating me.
I suffer from possible nervous system damage with lower back/hip pain and recently I started to get red rashes on my forearms which are exposed to sunlight, with pain in my arms, nausea and vomiting. Recently my Internal Medicine Specialist wanted to double check that I did not also have neurosarcoidosis and sent me for an MRI which did not show up anything. However, regarding my spinal problems, in consultation with my Orthopaedic Surgeon, they felt that any spine biopsy or lumbar puncture was TOO DANGEROUS and NOT worth the risk, and felt that the conservative approach was the best and safest way with medication.
I am currently being treated by a team of young doctors re Internal Medicine, Orthopaedics and Pain Specialist, who are not dogmatic and are not afraid to explore new avenues and seek advice from other professionals, and even from patients. My Orthopaedic Specialist told me that he thinks that I know more about Sarcoid than he does, but I told him that I have just read more on the topic than he has because it is very personal for me, and that its all from this site. I thought I was going crazy with worry, not knowing what was happening and the answers, and am being treated with medication for depression. However, since going through the wealth of information on this site I have found many answers to the myriad of afflictions that have plagued me for years, and now have confidence that this disease can be beaten. So, even though I still have the battle ahead of me, the difference now is that I am confident of the future and it has given me a certain sense of peace which has allowed me to start coming off my medication for depression.
I wish you all the best.

Gerard
 
 Re: sarc of the nervous system
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-16-03 21:48

Gerard,

Thanks for the nice testimonial. With your determination and hard work, you are sure to recover eventually.

I want to encourage you about the resolution of your depression. I've battled mild to moderate depression for many years with prescription and OTC medication. I've been on Benicar and antibiotics for 6 months. And I think I can say, with caution, that my depression has resolved. When you consider that 1,25-D interacts with many of the body's other hormones, it's not hard to understand how things could get out of balance. This has been an unexpected and marvelous benefit of Trevor's protocol.

Meg
 
 Re: sarc of the nervous system
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-16-03 22:08

Gerard,

It is certainly reassuring that you've found physicians who are not dogmatic, not afraid, who are willing to seek advice and are honest about the potential risks of diagnostic tests as well as treatments for sarcoidosis.

I am glad you have found help and reassurance from this forum, and I hope you will soon be sharing your own personal story of improvement and recovery of a "normal life."

Belinda
 
 Re: sarc of the nervous system
Author: Barb Peck (---.bluebird.ibm.com)
Date:   06-17-03 04:35

Could someone explain the mechanism or theory behind the red rashes on Gerald's arms after sun exposure?
Does it have to do with inflammation (triggered by higher 1,25D) and if so - why do they show up just were the skin was exposed to the sun?

OR is it slight immune supression from UV light - aloowing bacteria replication or something from their action?

Thanks,
Barb
 
 Re: sarc of the nervous system
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-17-03 06:11

Barb,
Sunlight causes 1,25-D to be synthesised locally in the skin keratinocytes. This causes activation of the immune system, both locally in the skin (paracrine) and in the body (endocrine). It does NOT have to be UV light, all light does this.

My paper, "New Treatments Emerge..." at the paragraph "The Angiotensin Hypothesis" explains how the generated 1,25-D actually activates the immune system in tissue and causes granuloma to form.

..Trevor..
 
 Re: sarc of the nervous system
Author: Gerard (---.tstt.net.tt)
Date:   06-17-03 20:35

Hi Barb,
I live in the Caribbean and it is sunny most of the year, so its difficult to stay out of the sun especially if you're an active person. When I discussed my recent nausea, dizziness, vomiting, severe body pains and the rash on my skin with my doctor, I also took in a copy from this site re "stay out of the sun if you have Sarcoidosis" to review. He wanted to rule out any possible manifestation of Neurosarcoidosis for safety, he sent me to a dermatologist, but he also discussed with me to stay out of the sun and avoid foods fortified with Vitamin D like cereals, milk etc. I have not been put any any oral steroids as yet because he is not "gung-ho" about steroid treatment especially with all the side effects, but am using a topical steroid cream called Fusicort. The rash on my skin is getting better, but more important, is that since using special precautions regarding the sun, I have seen the other symptoms virtually ease up and vanish. In fact the headaches which I had thought were normal has also eased up significantly, if not disappear altogether, making me a more agreable person who doesn't "flip out" with aggressiveness at the slightest thing. I have a certain calmness now which I have not felt in years.
I purchased a pair of REVO sunglasses which I wear all day now, until I can get the recommended glasses, and cover up when I go out. I don't stay out of the sun, I just take special precautions like wear thick cotton long sleeve shirts and trousers. The effect wasn't evident right away, but after several weeks I can certainly see the difference it has made to my life. For me it wasn't rocket science, just knowledge which I got from this site to discuss with my doctors. I am not limiting my lifestyle, just using plain common sense now.


Regards,
Gerard
 
 Re: sarc of the nervous system
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-17-03 20:44

Gerard,
Sounds like you have gotten things under control. Congratulations

During the earlier stages of the disease the bacteria are not so widespread, and the solar sensitivity is less. Your aim now should be to start on a dose of minocycline that will begin to kill the bugs and make sure your inflammation gets progressively better.

Benicar (Olmesartan) at 40mg every 6-8 hours will make you feel a lot better. Oh - "Caribbean" - maybe you don't have it there... Maybe Valsartan or Irbesartan - ask a pharmacist

..Trevor...
 
 Re: sarc of the nervous system
Author: Gerard (---.tstt.net.tt)
Date:   06-17-03 22:14

Thanks Trevor.
I certainly feel a lot better than I did before and am confident of improvement. I am very pumped up now and discussed coming off the Effexor XR with my Pain Specialist, but he feels that I should continue for a while yet on my medication until I am confident that things are consistently improving and my lower back/hip pain is under control, then we will start a phase off. I suppose, being a man, it took too long for me to admit that I have a problem, so they are not as quick to dismiss depression as something trivial. My Internal Medicine Specialist told me that his goal is to see me back in the Dojang practicing Tae Kwon Do and coaching a team in to competition again, and he doesn't see why this will not be a reality in the not too distant future. He is in constant communication with my Ortho and pain Specialist to assess my condition all the time.
I agree with one of your previous comments that it takes effort from both parties to develop a good doctor/patient relationship, but it is something that is absolutely vital for effective treatment. My Primary Care Physician who has been managing me for the last fifteen years, is close to seventy years old and I bounce everything off of him before I move forward, especially as regards to which specialists I see. He is not one to mince his words and if he feels that any of my specialists are not open to my needs, he takes action. I personally think he sells himself short as he is not a specialist, but I have tremendous faith in him. He is not one for the new technologies re internet, but has read every article I have shown him from this site and encourages me to continue researching the information on Sarcoid as it helps him as well. I have a very good informal personal relationship with all my physicians with their personal cell numbers, and they encourage me to call them if I have any problems, but I do not abuse this privilege. In fact they call me at home routinely just to touch bases with me especially when I'm on new medication or experiencing new symptoms.
Thanks again for your assistance and I will follow up on the advice with my medical team.

Regards,
Gerard
 
 Re: sarc of the nervous system
Author: Gerard (---.tstt.net.tt)
Date:   06-17-03 22:51

Hi Meg,
Hope is something that I am full of these days and this makes a world of a difference. I refuse to be beaten and I will take my life back. Things are improving and my wife and kids are seeing the difference in me. I am a different person. I told my two boys and my daughter recently that we can probably do some kayaking and hiking and they were estatic. I don't expect to suddenly get better overnight, but I'm confident. While my condition is not as severe as some of the people I've read about on the forum, the disease has affected my mind to some extent. I take my bi-annual checkup soon and I expect positive news. Thanks again.

Regards,
Gerard
 
 Re: sarc of the nervous system
Author: Gerard (---.tstt.net.tt)
Date:   06-17-03 23:35

Hi Belinda,
There are very good Professionals out there who still approach the doctor/patient relationship in a very personal way. As my Ortho put it to my wife and I, he uses the "If that were my child" approach "what would my wife and I decide to do", in regards to diagnostics or any treatment/therapy/surgery. My doctors are so careful about using the right approach that they are not afraid to ask for help or consult when necessary. Their approach is that there is nothing wrong with looking at things from a different perspective and gathering the facts and new information. My Ortho even suggested that it might be a good idea for them to call Trevor directly on the phone to get advice on my condition. I told them that I trust their ability and if it became absolutely necessary then that might be an avenue to explore, but until then let's not bother Trevor as there is a wealth of information on the site to review. I think as a patient we also have a responsibility to help build that relationship. Of course there are some Physicians who I no longer go to, but my Primary Care Physician is like a watchdog for me. Also, my Medical Team communicate with each other and so are always in the loop as to what the other is doing and I facilitate the process. I don't use negatives or speak ill of anybody, or shoot down anybody's suggestions, so there is a bond and a trust between all of us. My Pain Specialist told me once that my Ortho called him on his phone and wanted to know why he had raised the dosages on my Neurontin, because he thought it was too high. They sorted it out on the phone without even my knowledge, and in fact it was the right approach, but communication was essential for the process. Medicine is a noble profession and there are still doctors who put their patients needs above thier own egos, and if you find a doctor like that, count your blessings.

Regards,
Gerard
 
 Re: sarc of the nervous system
Author: Barb Peck (---.co.us.ibm.com)
Date:   06-18-03 04:39

Trevor:
Thanks for the explanation regarding sun sensitivity and granuloma formation.

Gerald:
I sounds as if you have found excellent Drs. and you are on your way to better health- congrats!
Barb
 
 Re: sarc of the nervous system
Author: Mark Flint (---.proxy.aol.com)
Date:   07-17-03 05:13

Having been told my sarc was acute and will resolve itself I am beginning to realise that this is a fallacy. I do however have symptoms which may be sarc of the neurvous system. I wondered if you think these are 'neurosarc symptoms: Migraines (I usually have a couple per year which involve hands/face going numb and sometimes the lack of coherent speech - but have had 5 in very short period of time - one where my hands 'tingled' for about 6 hours.), constant headaches, tingling in my hands, profound loss of memory (I am a maths teacher and have a very logical and clear memory - since the sarc flare up it has greatly diminished and worries me that I may not be able to teach Advanced level further maths again), irritability, light sensitive eyes, and recently my left arm kept vibrating and twitching for about 5 minutes (I have had my eyelids and just below my eyes twitch for a large duration but have been told nobody else can see it). The doctor who diagnosed my sarc said I hadn't got it but he did no checks. I also had a psoriasis type rash 5 years ago (lasted for 4 months and the GP was not 100% convinced it was psoriasis - my left ankle swelled up at this time as well). I know treatment is the same whatever, but I would like to know.
Thanks
Mark
Ps. haven't had any treatment as my symptoms at the time of diagnosis were resolving.
 
 Re: sarc of the nervous system
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-17-03 05:19

Mark,
IMO You have plain, normal, sarc.
Commencing ARB therapy will stop those migraines dead in their tracks.

Take a look at this study. They might not have known why it works - but we do.

You do need to get rid of the inflammation remaining in your body, as the bugs will multiply as the years go by. Minocycline is the way to do that.

Read the tutorials at the top of each page, and the FAQ, and then let us know if you have any questions

..Trevor..
 
 Re: sarc of the nervous system
Author: Meg (---.188.239.198.euc.wi.charter.com)
Date:   07-17-03 07:23

Mark,

All of the symptoms you mentioned are listed in this thread about symptoms of hypervitaminosis-D. In other words, your 1,25-D is too high. Lesions in the nervous system have more specific symptoms. Most of the neurological-type symptoms of sarcoidosis are due to hypervitaminosis-D.

Meg
 
 Re: sarc of the nervous system
Author: Mark Flint (---.proxy.aol.com)
Date:   07-18-03 05:49

Thanks Meg
Mark
 
 Re: sarc of the nervous system
Author: DJ (---.nas1.billings1.mt.us.da.qwest.net)
Date:   07-20-03 19:08

Mark,

Just wanted to reinforce what Trevor said about the migraines. I was having at least 2 a month - have not had any while on ARB's. That benefit alone is worth being on Benicar, not to mention the fact that ARBs minimize all my other sarc symptoms and let me lead a normal life again!

DJ

ps. You have to have the ARB blockade in effect before you have trouble - it doesn't seem to help once the migraine symptoms/headache have started.
 
 Re: sarc of the nervous system
Author: Ellen Bragason (---.speed.planet.nl)
Date:   08-04-03 13:40

Hi there to you all.... well I am reading through all the messages...for which I thank you... I had the Lumbar puncture... without a single problem. My husban Palmi and I used to live by the sea in South Africa...and came back to Holland because it was too expensive medically. As I had a blood clot in the base of my brain. and a thousand assorted physical problems.... but I am drifting away...during the puncture...I walked in my mind the 30 odd steps to the sea...wading my feet in the cool waters of the Indian ocean...I wanted to pick up a heart shaped shell..but could not do this..at that moment they did the puncture. Amazing what one can do with the mind.
I have since had the results...and as it stands now, I do not have Sarc of the nervous system... My feet at night are plagued by these electric shocks that drive me up the wall. I could easily fill this site with all my aches and pains, but I first need to get myself clued up...the problem is I can't remember... the short term memory is terrible. I ask directions... turn right...and at the 2nd traffic light turn right..I am still in the first turn right..oh my!!! I survived a couple of light strokes, very many operations & cancer....so I will be damned if I will let the Sarc get the better of me.... love to you all for now ... keep writing ... Ellen
 
 Re: sarc of the nervous system
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-04-03 15:42

Ellen,
There is a SarcInfo "graduate" in the Netherlands, who has successfully struggled against your medical system to get the antibiotics she needed for her recovery. I have asked her to write to you. Please give it a day or two, and then let me know if you haven't heard from her.

Sincerely,
Trevor

ps: I am sorry I did not notice this when you posted back in June. My apologies...
 
 Re: sarc of the nervous system
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-06-03 12:22

Ellen,
I contacted Bastiana but she is in Kroatia on Holiday. She will be back home in a week or two and she says she will write to you then.

..Trevor..
 
 Re: sarc of the nervous system
Author: Maria Julio (---.proxy.aol.com)
Date:   12-05-03 09:50

I am an alcoholic. my neurvous system must be damaged, I bleed rectally and loose control of my legs. If I look to both sides I become off balance. I will go through detox , any suggestions for vitamins ? Thank You, Maria
 
 Re: sarc of the nervous system
Author: Pippit (---.asm.bellsouth.net)
Date:   12-05-03 19:45

Maria,

Do you have Sarcoidosis? Please read the articles at the top of the page for a clear explanation of the treatment we are outlining for Sarcoidosis. This is an internet-based research protocol using specific antibiotics and Benicar to reduce granulomatous inflammation and kill the underlying bacteria that causes the disease.

Some supplements can interfere with this process so I would hesitate to recommend vitamins. If your health problems are related to Sarc then taking these probably isn't necessary on top of the study medications.

Welcome to SarcInfo.

Pippit
 
 Re: sarc of the nervous system
Author: Scott (12.107.3.---)
Date:   07-12-05 07:51

Hello All,

First off thanks for this website.

I have a friend who is in the hospital and has the neurosarcoidosis. He has had 7 spinal taps....7!! If I would have read this I would had advised him that the spinal taps seem to be a waste of time as well as harmful. Of course they found nothing from the spinal taps.

He has had headaches for 5 weeks straight. Has anyone ever had it that bad?

They are going into his brain to get a biopsy tomorrow. I was just wondering if anyone would have any information for me or any questions I could ask the doctor. The doctors at this hospital do not seem to know what they are doing.

Thank you,

Scott
 
 Re: sarc of the nervous system
Author: Lottie (---.proxy.aol.com)
Date:   07-12-05 10:49

Scott,

Welcome to SarcInfo. What a good friend you are.

I do know of at least one person who has had problems with headaches for extended periods.

It sounds as though they have already diagnosed him with Sarcoidosis, and are attempting to learn exactly where it is. If he has known Sarcoidosis or any other Th1 illness, it is not necessary to do a biopsy of the brain for a person to be treated with the Marshall Protocol. I’m sure you realize the dangers that are involved.

They may be wanting to learn of the severity of his disease in order to consider placing him on Prednisone (if he isn’t already), which they know has many adverse side effects. It is what most doctors prescribe to their Sarcoid patients, but is actually contraindicated in the treatment of Sarcoid. 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. And, since it is a bacterial infection the last thing that should be done is to shut down the immune system which is the body’s only line of defense against the bacteria.

People can and do get worse while on Prednisone, and any of the other immunosupressants. They only treat the symptoms while the bacteria thrive.

I’m not sure what you can do within such a short period of time, except to read as much as you can on this site, and on our sister site, MarshallProtocol.com.

You will note on this list that there are many symptoms which can be considered to be neurological. Including, but not limited to, migraine headaches.

Hypervitaminosis-D Symptoms

This document will give the doctors information about doing the tests which aren’t necessary if he already has a diagnosis of Sarcoid, but will show the amount of inflammation involved. The actual numbers from the tests should be posted on the “POST TEST RESULTS” thread for analysis.
D METABOLITES TESTS

Simply following the guidelines of avoiding vitamin D and sunlight and bright lights, as in the following thread on our sister site, Marshall Protocol can help a person to start feeling better while waiting to start the MP.

Avoiding Vitamin D and Sunlight

And, as you may have guessed, they may not find any thing at all when and if they do a biopsy of the brain. And, it doesn’t matter where the Sarcoid is, the Marshall Protocol will treat it, with safe medicataions.

Specialists are often less open to the Marshall Protocol, and many of us have found that a person’s Primary Care Physician are more apt to be open to helping patients with it.

You appear to have a situation that includes convincing both your friend and his doctors. I wish you the best, and hope that you will have success. This thread may help you some.

SUGGESTIONS TO GET YOUR DOCTOR ON BOARD WITH THE MP

And, the following may be some of the first papers which will help you in your ‘mission’.

The Marshall Protocol -- simple explanations

PHASE ONE GUIDELINE

PAPERS FOR PHYSICIANS

Please let us know if there’s anything else that we can do to help you. I will be sending you 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: sarc of the nervous system
Author: Scott (12.107.3.---)
Date:   07-12-05 14:10

Thanks for your reponse Lottie, I really do appreciate it.

I will tell you pretty much what I know...

He has been diagnosed with Sarcoidosis but they want so badly to rule out that its spread to the brain. Like I said, he has had headaches for over 5 weeks straight now. Out of 1-10 his headaches (without meds) are about a 7 to 8. With meds it goes down to a 5. They plan on surgery tomorrow to biopsy a mass thats in the back of his head as well as drain the fluid. They are putting something in his head (i dont know what its called) so that the fluid goes down into his stomach. He can get the fluid out that way.

He has been on that Prednisone for a while now but he thinks its just stardard stuff. I was warning him a little today about the side affects.

I really do appreciate you giving me this info and any other info regarding this e-mail.

Thank you!

Scott
 
 Re: sarc of the nervous system
Author: Lottie (---.proxy.aol.com)
Date:   07-12-05 21:56

Scott,

From your description, it sounds as though they’re going to insert a shunt to help keep fluid from building up around the brain. With the additional pressure that he has, I’m not surprised that he’s having headaches.

It isn’t unusual for patients to think that Prednisone isn’t dangerous. And since he’s dealing with a bacterial infection, that makes it even worse for him to be on it. Here is some information about Prednisone, and there is additional information on Prednisone and other steroids at the bottom of the SarcInfo pages. He should be aware of how much damage it can cause on it’s own.
The John's Hopkins Vasculitis Center: Prednisone Side Effects

Any immunosuppressant will allow the bacteria to multiply. There are several that are being prescribed for different diseases that are Th1 as is Sarcoidosis. in addition to or instead of Prednisone. They only treat the symptoms, and when they are stopped the patients relapse. Worse than they were prior to being on them.

I have heart involvement, and it became much worse while I was on Prednisone. Thankfully, I found SarcInfo, and the MP, and was able to get off of the Prednisone, and on my way to getting well.

He will need to wean off of Prednisone, as the immune system is a necessary part of the Marshall Protocol. Avoiding vitamin D, sunlight, etc. will help him to feel better. And, when he can get a doctor to work with him on the Marshall Protocol, the Benicar will help him to wean off of the Prednisone.

Please continue to let us know what’s happening, and if there’s anything we can do to help.

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: sarc of the nervous system
Author: Scott (12.107.3.---)
Date:   07-13-05 07:30

I really appreciate your help. He is having the procedure done as we speak so I will let you know what happens and keep you up to date.

Thank you!

Scott
 
 Re: sarc of the nervous system
Author: Renee (204.116.78.---)
Date:   07-13-05 18:42

I'm new here. Diagnosed 2 1/2 years ago with sarcoid in lungs. After internet research, numerous previous medical problems point towards sarcoid. After having lung flare ups and off/on predisone, I had shingles in May. Since the first of 2005, I would have infrequent sharp needle pain on both upper arms, at the shoulder towards the front. Last Sat., the pain was very severe and I caused bruising and skin tenderness with rubbing it. This usually occurs at bedtime. But last Sat. was the worst and scary. Since, I've had tingling and needle pain throughout my body. Went to dr. and had blood tests and chest x-ray that shows no change from a year ago; sarcoid does show on lungs. Dr. is stumped. I mentioned possibly sarcoid in nerves and dr. said its a possibility. But how to test for that? What is treatment? I have read other's postings and alot of symptoms I've seen, I've had. How do you convince family, friends, and dr.'s that you aren't craving attention and being whiny? Thanks for any help you can give.
 
 Re: sarc of the nervous system
Author: Lottie (---.proxy.aol.com)
Date:   07-14-05 00:18

Renee,

Welcome to SarcInfo.

As you have read, there are many symptoms which people do not realize are part of Sarcoidosis. It is very often thought of as being “only” a lung disease. It is in fact a systemic disease, and can affect any and all organs of your body. Neuropathy which can cause the sharp needle pain that you describe.

If you have a Sarcoidosis diagnosis any symptoms that you have could indeed be related to your illness. 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 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. A specific diagnosis of neruosarcoidosis is not necessary. The MP will treat Sarcoidosis no matter what part of the body is involved.

A simple blood test will help to determine the amount of inflammation that you have going on in your system, and here is the information about D METABOLITES TESTS. When the results come back, obtain a copy of them, and post the actual numbers on the “POST TEST RESULTS HERE” thread for analysis.

Patients with Sarcoid 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)

You can start to feel better by avoiding 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.

You also need to avoid sunlight, and bright lights. The windows in your home must be covered even if the windows are shaded by trees or overhang, or are facing north. If you go outside you need to cover up completely. That includes long pants, long sleeves, scarf, hat, and gloves. You also need to obtain, and wear NoIR sunglasses inside and out. Florescent lights in offices and stores can also cause problems, and you should wear them there as well as when you are watching TV or working on your computer.

Reading the information here, and understanding as much as you can will help you to educate your doctor in how to help you. Many of us have found that our primary care physicians are more open to the Marshall Protocol than specialists. Start by reading the patient tutorials in the box of the upper right hand section each page of SarcInfo.

The Marshall Protocol -- simple explanations

SUGGESTIONS TO GET YOUR DOCTOR ON BOARD WITH THE MP

One of the problems that many of us with Sarcoidosis have is that we appear healthy. If you can get them to read some of the information here, it may help them to understand how you feel, and that your symptoms are REAL.

I will be sending you additional information by email. Please feel free to ask any questions on the board that you may still have after reading.

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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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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