Sarcoidosis Answers for Physicians, Nurses and Patients

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

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 The material here provides useful background, but much of it is now out-of-date.

** Patient Tutorials **

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

  Click here to read "REMISSION IN SARCOIDOSIS"  

 How a Pathologist can see Bacteria causing Sarcoidosis 

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

 Weaning from Prednisone

 Protecting your eyes in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Hypervitaminosis D Symptoms    The SarcInfo F.A.Q.

Medical Abbreviations          CBC Radio Show

Protocol Phase 1-First 3 months

  

** Papers for Physicians **

Antibacterial Therapy induces Remission 

Implications for Autoimmune Disease 
(Here is Fulltext preprint)

Antibacterial mechanisms for ARBs 

Antibiotics in Sarcoidosis- The 1st Year 

Rationale for abx in Sarcoidosis 

1,25-D and Angiotensin II

"New Treatments Emerge.."

Jarisch-Herxheimer in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

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


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 Sarcoidosis in general
Author: Liz Lacey (---.cableinet.co.uk)
Date:   06-19-02 15:58

I was first diagnosed with this condition in July 1977 at the age of 24. My early symptom was a swelling in neck glands which doctors thought could have been caused by mumps, however tests for this proved negative. The symptoms first appeared in April of '77 and it took until I had lost nearly 3 stone (42lbs), became increasing breathless, was unable to swallow or speak and developed facial paralysis on both sides of my face before they decided to admit me to hospital for more tests. I was given a biopsy which confirmed that I did indeed have sarcoidosis. By this time the doctors had informed my brother that the paralysis was spreading to the vital organs and was not too far from my heart. This condition was relatively unknown in Gt Britain at this time so I was used as a test case for Predisone. I think I was the first known patient in Glasgow Royal Infirmary for about 40 years to have this illness. I was in hospital for about 4 weeks and had regular checkups for several years after that. I last took steroids about 6/7 years ago. My main concern is that I don't think the medical profession on this side of the Atlantic give much thought to Sarcoidosis. Over the years, I am now 49 yrs old, I have complained of tiredness, breathlessness, joint pains and problems with my sinuses, I have not had a great sense of smell since 1977, and I have asked if these could all be related to this complaint. I have been told NO. Do you think this disease ever completely leaves your system? I don't think so although Doctors here seem to believe otherwise.
 
 Re: Sarcoidosis in general
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-19-02 16:12

Liz,
Doctors often 'play games with patients' to make them feel more comfortable, or just to make idle chatter. There is no way that you were the only patient with Sarcoidosis in the Glascow Royal Infirmary for 40 years. No way. By 1977 this disorder was very well known in Britain, and had been for half a century. It occurs with a frequency of between 10 and 50 per 100,000 of population.

And it sounds as though the Doctors that are treating you have not stopped spinning those stories as the years have gone by.

Please understand that, as the years go by, you will be suffering both from the Sarcoidosis itself and from the medication that was administered to you. The symptoms you have described are most definitely associated with sarcoidosis and/or the treatment you have been given. You will find lots of information about them on this message board as you take the time to read through the hundreds of messages that have been left here. There are even messages relating to a reduced sense of smell, which is more likely just due to the prednisone use. Sarc itself tends to enhance one's sensation of odors.

There is a "Search" available near the top left of each page. Search for the word "smell" or "Fatigue" and you will be given a list of message threads where these issues have been discussed.

..Trevor..
 
 Re: Sarcoidosis in general
Author: Liz Lacey (---.cableinet.co.uk)
Date:   06-20-02 01:09

Trevor, Thank you for getting back to me. You know over the years I have begun to think that I was going mad. No one here seems to understand how I am feeling. I am constantly tired, my legs sometimes feel as though I have lead weights tied to them and I get a strange sensation in my thighs. I can only describe it as being like every nerve at the top of my legs are coming through the skin and someone is rubbing them with sandpaper. Does that sound stupid? I get up some mornings and find it very difficult to motivate myself to go to my work. I work for a large Bank here in Scotland and have done for 33yrs, they were very good when I was first diagnosed, although they hadn't a clue what I was talking about. I know what other sufferers mean about memory loss too. I can get up from my desk to go get something and by the time I have stood up I've forgotten what I'm going for. It gets pretty hairy when you forget what you're talking to a customer about!
No one understands when you complain of constant tiredness and feeling in pain all the time, they think you are being neurotic. It is good, in a sense, to know that I'm not going mad and am not alone, although I wouldn't wish this disease on anyone at least I know now where I can turn to for help. Doctors here either don't listen or refuse to understand.
Thanks again.
 
 Re: Sarcoidosis in general
Author: Alma Ingram (65.197.35.---)
Date:   07-11-02 20:19

Hi I have just found out that i have sarc . I've had places that look like deep bruises on my shins for about 6yrs. No one knew what it was. I've had cat-scans done of my head,chest and stomach but luckily I don't have it anywhere else besides my legs .I still feel very tired I can't do as much as before it seems like its getting worse.At first I thought it was depression but its not I get shakey when I do too much. I'm only 31yrs. old every one calls me lazy because I sleep so much.I feel like no one understands. I don't really understand what's happening to my body.How can I explain it to someone else? Thanks and God bless you all,Alma
 
 Re: Sarcoidosis in general
Author: Miguel (---.in-addr.btopenworld.com)
Date:   08-04-02 12:05

Dear Trevor:
Thank you very much for writing to me about this web site, it's really terrific!
I was diagnosed with sarcoidosis 1 month ago but really started feeling sick last february when I got up at 3.00 am with a very bad dry cough, I couldn't breath, walking was a very difficult task, doctors thought it was a very bad chest inffection and prescribed antibiotics twice, months went by and they wouldn't send me to hospital for an X-ray so I decided to go to a private hospital and have it done, the X-ray showed a shadow in both lungs. I then took the X-rays to my G.P and he requested an appointment with a lung specialist so after many blood tests, scans and a bronchoscopy she confirmed it was sarcoidosis. At that point my breathing was normal, I only suffer from a burning sensation on my upper back (left side) which sometimes switches to my right side but it doesn't happen everyday. I'm doing exercises 4-5 times a week and I'm now eating more vegetables and fruits. I'm also taking vitamin E and Vitamin B and compreseed salmon oil tablets. My doctor decided not to put me on any medication because I'm not presenting any simptoms but I don't know what to think, in a way I'm very grateful that I'm not taking any steroids after reading some horror stories from sarcoid sufferes and my breathing is fine and 95% of the time I feel nothing at all but since I've been diagnosed with this I'm terrified is going to develop in something worse....are there any happy stories out there from sarcoid sufferers who fully recovered after few years??? I just don't know what to do for the best and what to believe???
Thanks for listening and I wish you all the best....
Thanks
Miguel
 
 Re: Sarcoidosis in general
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-04-02 12:29

Miguel.
Take a look at the discussion thread on bacterial infection (click here).

The organisms that seem to be involved in sarcoidosis are very hard to eliminate. The best treatment seems to be using Minocin.

You need to work on getting rid of any bacteria hiding in your soft tissue and then monitor the ratio of your 1,25-dihydroxyvitamin D3 to 25-hydroxyvitamin D. This is a measure of the amount of inflammation in your body. Values above 2.5 will indicate that your inflammation is returning.

..Trevor..
 
 Re: Sarcoidosis in general
Author: Eileen Auger (---.cogeco.net)
Date:   04-13-05 15:43

My husband was diagnosed with sarcoidosis about 3 years ago. Swollen ankles and feet, very difficult time walking. He also has sleep apnea and was told that it was one of the worse cases the sleep clinic had seen. He stopped breathing over 100 times during the course of the night. He does really complain about his ankles and feet any more so I thought that it went in to remission (I seem to remember reading something about it). What other symptons can we look for or could show up...does it go away?

Thank you.
 
 Re: Sarcoidosis in general
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   04-13-05 19:26

Hi Eileen,

Welcome to SarcInfo. If you click on the link to the NIH ACCESS study at the top of this page you will find our brochure that explains the results of this recent, largest-ever study of sarcoidosis in this country. None of the patients in the study saw their sarcoidosis go away and none of them went into remission with prednisone.

The symptoms that you reported are common to sarcoidosis but your husband may have many other symptoms that are not recognized as being caused by his sarcoidosis. Here is a list of hypervitaminosis-D symptoms. This condition is always present in sarcoidosis because the inflammation results in dysregulated Vitamin D metabolism.

Sarcoidosis can be cured now with the safe, simple Marshall Protocol which treats the underlying cause of the disease-intracellular bacteria. You and your husband will need to educate yourselves using the information on our websites and then ask his doctor to help.

Let us know if you have any questions about recovering from sarcoidosis with the Marshall Protocol that are not answered by the patient tutorials, links, papers for physicians or threads on this site. You can also find easy to understand explanations and support on our sister website, marshallprotocol.com. (MP.com)

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: Sarcoidosis in general
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   04-13-05 19:27

Hi Eileen,

Sarcoidosis is a systemic disease and can affect any organ or system in the body. There is a popular myth that sarcoisosis will 'go away' on it's own, it does not. Sarcoidosis, Lessons Learned From the ACCESS Study and NIH Study Shows that Sarcoidosis Does Not Go Away

You husband can begin now to help yourself by avoiding ALL sources of Vitamin D. Eliminate food items contianing D, discontinue supplements with D and protect his exposed skin from sun exposure. Order NOir's to protect his eyes both inside and out doors. You will find further information regarding eyes here:discssion of eye protection.

You may recognize more symptoms your husband could be experiencing here: Hypervitaimntosis D Symptoms.

I suggest that your husband have his D metabolites tested so that he has a baseline to share with us. That way we can better help him. How does Doctor Test My D Metabolites.

I would also like to remind him to not accept the results as "Normal". Please call and obtain your actual numbers, both 1,25 D and 25 D. When you do, post them here for interpretation.

At our sister site Marshall Protocol you may find advice on approaching a physician here:A Member offers Suggestions to Get Your Doctor on Board with the Marshall Protocol.

I hope this helps. I will be sending more information to your email Inbox.

Sue Caroline

Sx.95, iritis 96. Pred. to 3-01. Pred., IV Medrol, MTX,neoral end 02, Dx. Neuro w/Cardiac sx, severe hip and hand pain, M-9-02, Benicar 12-02. MP-I Jan. 03. 1,25 D 58. Cardiac, & joint pain resolved w/MP-1. MP-II Feb. 04. Oct. 04, 25D=10, 125-D=34
 
 Re: Sarcoidosis in general
Author: Pina (---.proxy.aol.com)
Date:   04-19-05 22:36

Dear Trevor,

I was diagnosed with Sarcoidosis in December 2003 after 2 broncoscopys which were indeterminant and finally a mediastinoscopy which resulted in a positive diagnosis. I have been off work for 18 months suffering from symptoms of a chronic cough, raw pain in my chest, shortness of breath, memory issues, very poor concentration, profound and extreme fatigue to name just a few coupled with physical injuries sustained from a motor vehicle accident in June 2004. Before my diagnosis I was treated for post-nasal drip and stomach acid reflex for my persistent dry cough. I later received Levoquin and Zithromax (spelling?) based on my chest X-rays that showed early stages of pneumonia. A couple months later my symptoms worsened rapidly and I found myself not able to function at all. It was not until my Sarcoid diagnosis in which my respirologist decided to put me on Symbicort, followed by prednisone and methotrexate treatment plan. I was on prednisone for approximately eight months until my respirologist decided that it was not working. I continue to take methotrexate and I have been on this treatment for over a year. I have had several CT scans and X-rays with no indication of improvement (indicative of significant lung tissue damage). I continue to feel profoundly exhausted and feel no improvement other than a reduction in the persistent dry cough from which I suffered over 18 months prior to my diagnosis of Sarcoid. My specialist believes the reason for which I continue to feel my symptoms is probably not the Sarcoid but atrophy from being off work too long, I believe it is the symptoms of my Sarcoid that continue to plague me. I may be sick, but I am very strong willed and want to get better. I am really at a loss of what I should do when even my own respirologist lacks the bed side manners to help through this difficult journey. I have lost so much time form my career by being home and not being productive and I wish to thrive and be positive and feel alive, but instead these symptoms are swallowing me whole. As stated above I have been off work for 18 months and on disability, but have since attempted to go back to work just this past March. I have always had a very strong work ethic, never missed a day of work before my diagnosis of Sarcoid and since I have returned to work I was only given four weeks rehabilitation through my employer and disability carrier and now I am being forced out of my job after seven years of excellent standing with this company. My GP has drafted a letter outlining in detail all my symptoms, specifically focusing on a return to work program that is gradual and flexible so as not to aggravate and/or exacerbate my condition. The employer's medical advisor coupled with the disability carrier have dismissed my symptoms as subjective and no longer objective clinical evidence and given my pulmonary function test has proved fine, and my respirologists indicates my Sarcoid is stable, the company nor the disability carrier will accomodate part-time hours until such time as I am able to re-acclimate to the normative standards of my working conditions or to determine whether I am able to work at this time at all. Please keep in mind this is a major corporation and such a proposal would not pose an undue hardship to this company which is governed by Labour laws and which they are blatantly violating. The imminent threat of losing my job has caused me a great deal of undue stress and mental and emotional anguish that has been brought on by the vexatious treatment which I have received from my employer. I want to get better, I have the drive, the will and the determination to do so, but I do not know where to begin? I am overwhelmed, emotionally and physically drained and instead of feeling better 18 months later I have never felt worse. As I sit and write to you my eyes well up with tears, not even my own respirologists understands me and another one that I saw so as to obtain a second opinion stated that I was clinical depressed and that I should consider psychiatric treatment and prozac. I know I am not crazy but I am being made to feel that I am out of my mental element. The only physician on my side is my GP and thank goodness for him. Is there anything that you may impart or anything that you may suggest to help me through this difficult time. I would love to try the Marshall Protocol. My father and I discussed the possibility, if it is available to me, to visit with you personally. I do not know whether you take patients in person? Any help or courtesy you may provide in this matter would be greatly appreciated. Thank you for your time.
 
 Re: Sarcoidosis in general
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   04-19-05 23:44

Hi Pina,

Welcome to SarInfo. Your doctors, in their frustration at not being able to improve your condition, have decided to blame you (My specialist believes the reason for which I continue to feel my symptoms is probably not the Sarcoid but atrophy from being off work too long, I was clinical depressed and that I should consider psychiatric treatment) This is outrageous.

Your story is all too common. I'm glad you found us. It sounds like you have a likely ally in your General Practitioner. Dr. Marshall is not a medical doctor. He has a PhD is biomedical engineering and has designed the Marshall Protocol after extensive research.

You will need to use our websites to educate yourself about the etiology of sarcoidosis and how the MP works. Then you can help your GP understand the disease and how to help you treat it successfully.

Let us know if you have any questions about recovering from sarcoidosis with the Marshall Protocol that are not answered by the patient tutorials, links, papers for physicians or threads on this site. You can also find easy to understand explanations and support on our sister website, marshallprotocol.com. (MP.com)

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: Sarcoidosis in general
Author: Pina (---.proxy.aol.com)
Date:   04-20-05 22:09

Hello Meg,

Thank you for taking the time to respond to my concerns and helping me feel less crazy than my own specialist. I hope my posting will help others that are in the same boat. Noone understands unless they have suffered or do suffer from the ailments that are caused by the Sarcoid.

Thanks again.

Pina
 
 Re: Sarcoidosis in general
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   04-20-05 22:39

Hi Pina,

I'm glad you found my brief response comforting. We don't spend a lot of time here at SarcInfo commiserating even though most of us could match you symptom for symptom and regale you with our own medical horror stories.

We are focused on getting well. Yes, we are in the same boat but the Marshall Protocol has give us a 'paddle' and we're getting out of this 'creek'.

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: Sarcoidosis in general
Author: Kris8 (---.dyn.optonline.net)
Date:   05-11-05 04:36

I have been diagnosed with Sarcoidosis just last week after mediastinoscopy. I do have a high triglyceride level and had been receiving treatment to lower that as well as general cholestorol levels.

The whole event started when I had coughing for about 3/4 months, and reverted to a chest xray/CT scan.

The cough has since subsided a the doctors thought this was caused by vasotec ( high blood pressure medcation) and replaced it with Diovan.

The pains however in my joints, primarily back ache started when i was put on Crestor 10mg to reduce my triglyceride/cholestorol levels. This worked but has brought the sarcoid issue to the forefront.

Is there a relationship here ? i.e., has the cholestorol drug enhanced my sarcoid issues ?

rgds, kris8
 
 Re: Sarcoidosis in general
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-11-05 07:34

Kris8,

Welcome to SarcInfo. Your story is not that unusual for those who have been diagnosed with sarcoidosis. Taken by themselves, sarcoidosis symptoms - such as a chronic cough - are rather routine. Medical professionals try to rule out the most common causes for these symptoms, such as asthma or reaction to an ACE inhibiting drug.

However, now that you have been diagnosed with sarcoidosis, verified by mediastinoscopy, you should be assured that your coughing is due to sarcoidosis. The normal course is that symptoms wax and wane, but sarcoidosis is a chronic, debilitating disease. Sarcoidosis itself causes elevated triglycerides. The obvious answer is to treat the underlying disease. The first things you need to understand are:
(1) symptoms will worsen after sunlight exposure or ingesting vitamin D from foods or vitamins.
(2) sarcoidosis is caused by intracellular bacteria undetected in usual laboratory evaluations.

The treatment we discuss here - lifestyle changes to control sun/bright light and vitamin D intake to control Hormone D, along with Benicar to control a hormone called Angiotensin II and low-dosed, pulsed antibiotics - has been quite effective in returning people to health. Here is a primer to help you understand.

Please read the tutorials at the top of the page as well as the ***starred*** topics on the forum.

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: Sarcoidosis in general
Author: Kris8 (---.dyn.optonline.net)
Date:   05-11-05 18:39

Tks much Belinda. The doctors have not recommended any medication for my saarcoidosis. They recommend that I continue my blood pressure medication and come back in three months for a chest xray and ACE test.

I thank you for the links to the primer, and i plan to stay away from the sun and to reduce the vitamin d intake.

Will come back and post my experience in te days to come. Hopefully it will go away.

rgds, anand
 
 Re: Sarcoidosis in general
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-12-05 08:25

Kris8,

Doctors often take a "wait and watch" approach to sarcoidosis because
1) they believe it will go away and
2) the standard first drug used to try to control symptoms, oral prednisone, has well-known side effects and is not reliable.

You should be aware that there are many myths about sarcoidosis that are accepted by medical professionals simply because they have been widely circulated for many years - not because they are supported by clinical studies and scientific facts.

One of the sarcoidosis myths is that sarcoidosis just "goes away." However, the largest scientific analysis of sarcoidosis patients ever funded by the US National Institutes of Health found that two years after their intial diagnosis of sarcoidosis affecting the chest/lungs, most patients are still symptomatic or even worse than at diagnosis. Please see the study results in our brochure. Unfortunately, the results of this study were published in an obscure medical journal and have not been made widely available.. so this myth persists.

The good news is that -- as I stated before, we now know what will help manage symptoms and medications and dosing to treat the cause of the disease.

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: Sarcoidosis in general
Author: Ms Dale (---.proxy.aol.com)
Date:   05-13-05 07:51

Kris8 wrote:

"They recommend that I continue my blood pressure medication"

Kris8,

You could counter their reccomendation - and ask for a switch to
Benicar for your "blood pressure medication"

Hope you continue to read SarcInfo and supply info to your medical professionals for the Marshall Protocol. It works.

Sincerely,
Ms Dale
 
 Re: Sarcoidosis in general
Author: Kris8 (---.dyn.optonline.net)
Date:   05-17-05 05:44

Tks Ms. Dale.

I am given to believe that diovan acts similr to benicar. MP text "22" provides results. In any event will consult the doctor. Tks.

rgds,
 
 Re: Sarcoidosis in general
Author: Charlene Haymon (---.partners.org)
Date:   05-17-05 09:19

I was diagnosed with sarcoid in 1999 after six months of testing for different things. Now I am having a hard time with pain in my joints. My PCP sent me to see an ortho specialist. He said that I have degenerative ostearthritis and need a knee replacement,but because I am only 48 he would consider doing it for another 10-15 years. I constantly have sinus infections,ear and throat infections also. Last february I had my tonsills removed and was fine until January of this year. I have been on antibiotics for an on going ear infection. I have also had to have my tear ducts replaced because of the sarcoid. I have never been on oral steriods only the drops for my eyes. I have enlarged lymph nodes that get sore and swell when ever I don't feel well. I am not feeling fatigued like I did in the beginning,but now with my knees and body constantly in pain I am getting very depressed and want to know when this will end. I have very little lung involvement just basically ent problams. I have been suffering from swelling in my left foot for about a year now and the doctors say its from the arthritis. I take a fluid pill but it does not work. I also take an Orudis and arthritis tylenol but it does not stop the pain. It only makes it bearable to make it through the day. My worst time is at nights. Once I go to bed it is constant pain when I move or have to get up. My right hip and left shoulder are constantly in pain. Since I was diagnosed with this I have had a partial
hysterectomy,my gall bladder removed,biopsies of lymph nodes and esophagus,tear duct replaced, nasal passages reduced and tonsills removed. I just wonder what are they going to take from me next.
 
 Re: Sarcoidosis in general
Author: Lottie (---.proxy.aol.com)
Date:   05-17-05 19:43

Charlene,

Welcome to SarcInfo!

Your story sounds very much like mine. Except that I had a total hysterectomy and all my surgeries and problems all occurred prior to my diagnosis of Sarcoidosis in 1999.

Sarcoid is a systemic disease. It can affect any and all parts of the body. Swelling in the ankles is common, as is joint pain. Your “ongoing” ear infection could also be due to Sarcoidosis.

I hope that you will read all the information on this site, especially the tutorials at the top of each page, and the information at our sister site MarshallProtocol.com.

I will be sending you additional information via email.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: Sarcoidosis in general
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-17-05 21:12

Charlene,

I am sorry no one has helped you understand that sarcoidosis can cause pain and swelling such as you described. People on this forum do, though, because of our own personal experience with the disease. Hip and shoulder pain were some of my longest-running complaints when I was finally diagnosed.

We suggest that.. instead of wondering what sarcoidosis (or the professionals trying to help you) will take from you next, try to understand the information on this forum. You can help yourself by beginning to understand the lifestyle changes (avoiding sunlight and vitamin D) that will help decrease your sarcoid symptoms. From there, you can move on to understanding the treatment we discuss here that is helping people do so amazingly well.

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: Sarcoidosis in general
Author: Mary G. (---.ard.bellsouth.net)
Date:   05-18-05 20:02

After reading this site for 2 days, I'm not sure whether to laugh or cry.

My sarc started about 4 years ago with the horrible cough. It was intense for a year and then leveled out a little for the next few years. It became tolerable. At the end of 2004, I guess I had a major flare. I got the "mumps", my eyes were red and ran gunky stuff 24/7, joints hurt, lymph nodes under arms swollen, dry mouth and thirsty often, I feel like I have a huge rock lodged in the bottom of my foot, I'm starting to get headaches now (which I've never been prone to), now when I cough, I can feel vibrations, muscle fatigue, heart palpitations, some breathlessness, etc. I went to the VA emergency room when the "mumps" thing started; they did a chest x-ray, then a CT scan and found the images of something on my lungs. They wanted to do a lung biopsy, but I said no. It seems apparent I have sarc...is there any reason to go through that procedure?

They gave me amoxicillan for the gunky eyes. I broke out into hives, so they gave me a shot of steroids and a 1-week dose of prednisone. It took the immediate symptoms down to a manageable level.

I eat a fairly decent diet (no processed foods, no sodas, little junk food), and because of this site, I'm learning to get rid of the food with VIT D. I was a sushi junkie, but no more. I enjoyed eggs, but no more. I eat organic, haven't drank milk for years, I drink lots of water, etc.

The last blood test show slightly elevated ACE levels (if that's the right word), my calcium level was 9.5, but I doubt they did the Vit D test. I had my thyroid out in '95 and take synthroid. I switch between Tylenol and Willow Bark for pain relief. I've stopped taking fish oil and flaxseed oil and ordered my NOIR (outside) glasses today.

Somedays I feel okay; other days I feel kind of crappy. But I feel pretty lucky compared to some of the stories I read here. My question is this:

Regarding the MP, should I think about beginning it even though I'm not terribly sick yet??? Is it easier to go through if you don't wait until you're really sick? I refused anymore Prednisone. I don't even know if the VA doctors will let me do the MP. But it won't hurt to ask. If they refuse, does anyone have a doctor's name for the Asheville, NC area who will accomodate this Protocol?

Thank you all from the bottom of my heart for being here and taking the time to answer all the questions that come your way.

Mellie-2002-Cough. 2004-IckyEyes, PainJoints/Feet, FatigueMuscles/Body, Swollen Nodes/Glands/Eyes, Thirst/Dry Mouth, Heart Palps, Mental Confusion/Fog, Wobbly. PRE-MP. Synthroid (thyroid removed in '95); Tylenol; Willow Bark or Aspirin. Outside NOiRs.
 
 Re: Sarcoidosis in general
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   05-18-05 21:17

Hi Mary,

Welcome to SarcInto!

You have come to the right place we can help you. All of your symptoms are familiar to us. You may find more more symtoms that you did not attribute to sarcoidosis here: Hypervitaimntosis D Symptoms.

Your are beginning correctly. Make sure your read all food labels, eliminate all supplements and protect your skin from sun exposure. Did your order two pair of NOir's to protect your eyes both inside and out doors? You will find further information regarding your eyes here: discussion of eye protection.

In addition to the above, I suggest you have your D metabolites tested so that you have a baseline to share with us. That way we can better help you. How does Doctor Test My D Metabolites. Testing of your D metabolites is a simple blood test. I would also like to remind you to not accept the results of your D metabolites as "Normal". Please call and obtain your actual numbers, both 1,25 D and 25 D. When you do, post them here for interpretation.

I am unsure of the VA's position. The VA has published documentation pointing to the bacterial cause of sarcoidosis. If you run into problems with your physician, we will attemt to help you.

At our sister site Marshall Protocol you may find advice on approaching your physician here:A Member offers Suggestions to Get Your Doctor on Board with the Marshall Protocol.

Mary, it would be much better to begin the MP as soon as possible. Waiting until you become more ill is couterporductive.

I hope this helps you. I will be sending more information to your email Inbox. Oh, and please don't cry, laughter is good for the soul. I am happy that you have found us.

Sue Caroline

Sx.95, iritis 96. Pred. to 3-01. Pred., IV Medrol, MTX,neoral end 02, Dx. Neuro w/Cardiac sx, severe hip and hand pain, M-9-02, Benicar 12-02. MP-I Jan. 03. 1,25 D 58. Cardiac, & joint pain resolved w/MP-1. MP-II Feb. 04. Oct. 04, 25D=10, 125-D=34
 
 Re: Sarcoidosis in general
Author: Mary G. (---.ard.bellsouth.net)
Date:   05-19-05 08:20

If one completes the MP, and you arrive on the other end of it fully well and free of all symptoms, are you then considered "cured" or simply in remission? Also, if you are completely without symptoms at the end of the MP, can you then resume a "normal" life in the sun and eat eggs and fish again? Or will exposure to these culprits likely trigger the Sarc again? Are there statistics on this yet?

Mellie-2002-Cough. 2004-IckyEyes, PainJoints/Feet, FatigueMuscles/Body, Swollen Nodes/Glands/Eyes, Thirst/Dry Mouth, Heart Palps, Mental Confusion/Fog, Wobbly. PRE-MP. Synthroid (thyroid removed in '95); Tylenol; Willow Bark or Aspirin. Outside NOiRs.
 
 Re: Sarcoidosis in general
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-19-05 22:07

Mary G,

Are there statistics? Well, you have access to all the patient posts here on SarcInfo. Feel free to search and read what patients have posted about their recovery using the novel antibiotic treatment that combines Benicar to control Angiotensin II and lifestyle changes to control Hormone D.

I can and do eat eggs and fish now, whereas they used to make me feel worse. I am exposed to a minimum of an hour of outdoors every day in the sunny southwestern US, but I wear protective glasses and clothing plus a hat.

The "culprits" we will need to be concerned about in the future are actually a variety of pathogens, not sunlight or vitamin D foods per se.

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: Sarcoidosis in general
Author: Rick in Napa (---.dsl.pltn13.pacbell.net)
Date:   05-22-05 16:42

Now that the MP has progressed to a very active site I have noticed that some participants on the MP have moved along from Phase I to Phase III in less than 6 months . . . is that normal ?

Rick in Napa
 
 Re: Sarcoidosis in general
Author: Eli (156.101.1.---)
Date:   05-23-05 09:33

Amusing article on yahoo news and throughout the media over the last few days.

http://news.yahoo.com/s/ap/20050523/ap_on_he_me/sunshine___cancer

The premise is that basically, sunshine is good for you and prevents cancer.

In short, I find it increasingly difficult to discern medical and nutritional fact from fiction in all arenas.

I am sure this email will lead to a note on how people with sarcoidosis suffer from vitamin D hypersensitivity and that any rules regarding sunlight and cancer would not apply to sarcoid. At the same time, I wonder how depriving myself of virtually all sunlight would be good for me or my optic nerve, etc. I assume the absence of sunlight would also cause depression in many etc. I am a guy who gets very little sunlight as it is, so I doubt that played a role in my contracting sarcoidosis (finally confirmined by biopsy last week).

I'm asymptomatic at this point (unless reflux is associated with sarcoid). Based on lung biopsy and liver functioning tests, my pulmonologist wants me to go steroids to protect my liver. I see a gastroenterologist tomorrow to discuss same, who hopefully will tell me my liver tests don't justify steroids. At the same time, I'm not convinced that the MP/long term antibiotics will help either (nor can I likely find any mainstream doctor who will prescribe in accordance with the MP). So I will take the wait and see approach. Let's see if I can live longer than a decade or two.
 
 Re: Sarcoidosis in general
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-23-05 17:21

Eli,

Just as people who are overweight or obese need something other than education about how to avoid starvation, people with sarcoidosis have no need to be urged to get sunlight exposure and include vitamin D-supplemented foods in their diet.

Having elevated Hormone D (1,25-dihydroxyvitamin D), which is common in sarcoidosis, can lead to symptoms such as weakness, headache, drowsiness, muscle pain, bone pain, and elevated liver enzyme levels.

We are not here to try to convince you. We have freely shared good information in the hopes of putting an end to some of the suffering from this disease. If you want to discard the information and scientific papers presented here, that's up to you, but why would you want to challenge us? It's your health that's at risk, but a few simple blood tests to find out the measure of your serum D-metabolites would tell you what you need to know.

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: Sarcoidosis in general
Author: Lottie (---.proxy.aol.com)
Date:   05-23-05 20:14

Eli,

What you decide about the MP, especially after reading all the information here, including the statements from other patients on the MP, is of course completely up to you.

I do hope that you have also read about the long term effects of Prednisone, here... The John's Hopkins Vasculitis Center: Prednisone Side Effects. And there are more links at the bottom of each SarcInfo page.

While you're reading about Prednsione, remember that while it's supposedly "protecting" your liver, it will also allow the bacteria causing the Sarcoid to multiply without anything to stop them. You will indeed get worse while on Prednisone. I did. Echocardiograms of my heart showed that.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: Sarcoidosis in general
Author: Connie A Griffis (---.doe.state.fl.us)
Date:   05-24-05 14:09

Due to severe respiratory problems recently, my pulmonologist did a bronchoscopy with biopsies. The sarcoid is in the bronchial tubes and and I believe some in the lungs. I already have a problem with cardiac sarc, and my right kidney is showing damage on contrasting ct scan. My lymph nodes in my chest got it in 2003. (Extensive lymphadenopathy - hilar) Of course right now I'm on what the doctor calls high dose steroids, my question is this. I want to know what stage of the disease this is, please be honest I already have a good idea; I like to understand and know what I am dealing with and it bugs me not knowing. Trust me I don't get all up in a tizzy, or freak out, that is not my way; I'm just too practical not to understand what I am dealing with, and how hard I need to come out fighting. Any information you can give me would be greatly appreciated, I already appreciate everything you all do anyway.

Biopsy confirmed sarcoidosis:cardiac, lymph nodes, bronchial tubes, skin, lungs/ poss. kidney & joint involvement/rheumatoid arthritis/sick sinus syndrome/brady-tachy syndrome/ pacemaker/diabetes/asthma
 
 Re: Sarcoidosis in general
Author: Eli (156.101.1.---)
Date:   05-24-05 14:26

I saw the G.I. today, and thankfully, he does not want me to go on steriods yet. He took a wait and see approach.

Belinda - please don't misunderstand me. I was not suggesting that people with sarcoid be urged to get more sunlight exposure or vitamin D in their diet. I didn't believe the yahoo article was correct. At the same time, I wonder and thought it would be good for the board to consider whether there were potential adverse effects of completely blotting out sunlight from one's life, include effects on the optic nerve, depression, cancer risk, other risks, etc. (also, it makes it difficult to be a family guy, go to your son's baseball games, etc.) I want to understand the risks of avoiding sunlight, as well as the risks of the MP therapy. As I read these conflicting reports, I think of the Woody Allen movie, Sleeper, where in the future they determine cigarrettes or steak or dark chocolate is good for you.... Maybe it's easier for me to say everyone is wrong, because I'm basically asymptomatic at this early stage.

I do think it's a good thing to challenge the premises, underlying assumptions, proof, and logic that are presented on this board, just as I challenge the premises, underlying assumptions, proof and logic of the physicians I am seeing. I want to "challenge" you to see what the response is and, based on that to try to discern the truth. That's my training, as a lawyer. Maybe I don't have the expertise to do that. I would not discard any of your studies or information you have provided, and I am thankful the board exists.

The hormone/vitamin D blood testing is a good idea. I may pursue that. It may help identify whether or not I should be increasing or decreasing sunlight and vitamin D in foods.

Seeing whether my biopsy shows any mycobacteria will also be interesting.

Honestly, I was a little frustrated by the physician list I received. Because none of the doctors in the Pa. list appeared to be what I would call "mainstream" GPs, it made me doubtful as to pursuing the protocol.

I wont push the debate. I'll continue using the site as a resource in expanding my knowledge. Thanks for making that available.
 
 Re: Sarcoidosis in general
Author: Admin (---.ventca.adelphia.net)
Date:   05-24-05 14:43

Eli,
This is not "a board"

This is an operation of the Autoimmunity Research Foundation. There are over 50 Health Professionals who participate in this site, and its sister site. Many are at the leading edge of research in these Th1 diseases.

We have published widely in Medical Journals, and have 'defended' those papers at numerous Medical Conferences. Trust me, we have thought of issues which are way beyond your comprehension, and have previously dealt in depth with those which you raise.

Please respect the knowledge the moderators are sharing with you. We frankly don't have time (any more) to countenance "challenges" - you should have been here in 2002, when all this material was initially canvassed.

Sincerely
Dr Trevor G Marshall
Director, Autoimmunity Research Foundation.
 
 Re: Sarcoidosis in general
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   05-24-05 15:14

Hi Connie,
Staging is an out-dated method to track the progession of sarcoidosis of the lungs. Prednisone is absolutely the wrong treatment. When you compromise your immune system, you only allow the Cell Wall Deficient Bacteria at the root cause of your disease to grow and flourish. When you discontinue prednisone, your symptoms will reappear and increase. This you have seen for yourself. How much improvement have you experienced with high dose steroids?

You have been sent information on protecting yourself from sun and ingested D. Are you following those suggestions? Are you educating yourself and making a serious and sincere effort to be supported on the MP by your physician. That would include also weaning off of prednisone with the help of the ARB beinicar. You are exascerbating your disease right now. With cardiac involvement, you place yourself in a very serious and potentially deadly position with sarcoidosis by not treating it. What you are dealing with is a potentially deadly disease. You do need to come out fighting for your health, not tomorrow or next week but right now. You know what you need to do. If you have any questions on the information provided, please ask.
Sue Caroline

Sx.95, iritis 96. Pred. to 3-01. Pred., IV Medrol, MTX,neoral end 02, Dx. Neuro w/Cardiac sx, severe hip and hand pain, M-9-02, Benicar 12-02. MP-I Jan. 03. 1,25 D 58. Cardiac, & joint pain resolved w/MP-1. MP-II Feb. 04. Oct. 04, 25D=10, 125-D=34
 
 Re: Sarcoidosis in general
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   05-24-05 15:35

Connie,

Your pulmonologist is the person you should be asking about your stage of sarcoidosis and your prognosis. He has access to your health records and it is his responsibility to answer these questions.

I can tell you that the largest study of sarcoidosis in this country concluded that "end-stage pulmonary sarcoidosis usually develops over one or two decades." Please see the link to our ACCESS brochure at the top of this page.

Most pulmonologists no longer use a staging system for sarcoidosis. Dr. Marc Judson, a pulmonologist, had this to say about the sarcoidosis staging system:

"It is important to make several points about the staging system. First, is only a chest X-ray staging system. It tells you nothing about involvement of sarcoidosis outside of the lungs. Second, it is in general, a poor staging system. Most sarcoidosis experts do not use it because it's so poor. It has a few major problems. The first is that it's inaccurate. When you do much better views of the lungs by chest CT scans, you find out that the actual stage is different than what appears on chest X-ray. The next problem with the staging system is that it does not predicit the need for therapy, the level of disability, or the prognosis IN AN INDIVIDAL PATIENT with any good degree of accuracy. That is, if you had 100 patients with stage 1 disease and 100 with stage 2, the stage 1 would have better pulmonary function, less pulmonary symptoms, and a better prognosis. BUT many in the stage 2 group would have better pulmonary function, less pulmonary symptoms, and a better prognosis than in the stage 1 group...you can't tell what will happen to one specific patient. Probably the most useful part about the staging system is that patients with stage 4 generally have poor pulmonary function and have the worst prognosis. But I don't put too much weight on this staging system...it is antiquated and doesn't help me much at all." 14 August 2003

and on 3 September 2003
"you will learn that the ACE level and the stage of sarcoidosis give little information concerning who should be treated and the prognosis of the patient. They are both antiquated systems...especailly the X-ray staging system."

and on 30 Oct 2003
"Please realize that I personally think that this whole stage system is antequated and offers very little today. It was developed prior to 1960 when there were no CT scans and we knew much much less about sarcoidosis."

The fact is that sarcoidosis should always be treated as soon as it is diagnsosed. But the standard treatments are so toxic and ineffective that they are not begun until the patient has major organ damage.

Hundreds of sarcoidosis patients with varying levels of severity of sarcoidosis are now on the safe, effective Marshall Protocol. Let us know if you have any questions about recovering from sarcoidosis with the MP that are not answered by the patient tutorials, links, papers for physicians or threads on this site. You can also find easy to understand explanations and support on our sister website, marshallprotocol.com. (MP.com)

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: Sarcoidosis in general
Author: Connie A Griffis (---.doe.state.fl.us)
Date:   05-25-05 08:18

Caroline,

The prednisone, temporarily at least; was a have too. My respiratory problems were to the nightmare stage, and I had to have some relief. I have tried to pursue the protocal but I am limited by willingness of physicians to try it or understand it, and insurance restrictions. I am very thankful I can still work, but I am a single mom in a State of Fl clerical position. I can not go out on my own, as there are absolutely no finances for that, the co-pays are bad enough as it is with the specialists and meds that keep me going. I thought I would be able to see the specialist at the Mayo Clinic, but they do not accept my insurance, i.e. we won't see you. I have changed doctors within my insurance's perimeters over and over, but as I told you the only one that was open to even look at the protocal died. I had to be able to function enough to work, so I'm taking the steroids until I can find the needle in the haystack doctor. I am doing the best I can about the sun, but my job has no night shift.

The bronchial tubes were something I did not know was happening, and that is why I asked the questions. I've had "asthma" a long time, and only recently did a doctor check to make sure it was asthma and not something else causing my problems. It was of course not asthma.

Thanks, you did answer my questions, and I hope I answered yours. It is not for lack of reaching and scrapping that I have not been on the protocal.
 
 Re: Sarcoidosis in general
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   05-25-05 09:25

Connie,

I am sorry to hear you are having such a difficult time right now. We want to help you get better.

I had my share of immunosupprive therapy when I did not know what I was allowing to happen. My eye involvement, which was my 'only' symptom exascerbated to limping, pulmnary involvement and frightening cardiac symptoms. From that to excruciating bone pain and muscle problems. Lastly to disability.

I am making slow but steady inprovement on the MP. It is imperative that what happened to me does not happen to you. I also experienced great difficulty finding a physician to help me. After all the specialists, my primary was open minded enough to step out of the box and help support the MP. If we can attempt to find a doctor to help you, let us know.

Sue Caroline

Sx.95, iritis 96. Pred. to 3-01. Pred., IV Medrol, MTX,neoral end 02, Dx. Neuro w/Cardiac sx, severe hip and hand pain, M-9-02, Benicar 12-02. MP-I Jan. 03. 1,25 D 58. Cardiac, & joint pain resolved w/MP-1. MP-II Feb. 04. Oct. 04, 25D=10, 125-D=34
 
 Re: Sarcoidosis in general
Author: Lottie (---.proxy.aol.com)
Date:   05-25-05 17:35

Connie,

So far, the specialists are the doctors who are most likely to refuse to prescribe the MP. Most often the General Practitioners have been the ones who have been willing to prescribe it. The information on this thread may help you to It contains tips from several people.

And, keep in mind that the more you know, the more you can help your doctor to learn and understand the logic of using the MP.

Like Sue Caroline, I also began to get worse while on Prednisone, and fortunately found the MP before it was able to cause as much damage to me as it did to her. My echocardiograms showed that there is more inflammation in my heart now than before I started the Prednisone.

I hope you're able to find a doctor willing to help you.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: Sarcoidosis in general
Author: Jeremy (---.misawa.af.mil)
Date:   05-25-05 20:45

There are so many other things that can affect a sarc patient's body such as the treatment (i.e. Prednisone), Hormone-D level stimulators (i.e. sunlight and vitamin D), infections, etc. it is hard to tell whats going on with the Sarcoidosis.

Every problem I have (even those similar to my initial symptoms) has been either attributed to Prednisone or Vitamin D. Are there any symptoms that are specific to the disease which I can personally look for?

Dx-Pulmon. Sarcoid (stg II) Oct04. Init: Weight Loss(40lbs), Fatigue, Cough, and CP. Diag: X-ray/HRCT/Biopsy. Treat: Pred. Taper(Jan 05)40mgx2wks/30mgx2wks/25mgx2wks/15mgx6mos. Now off pred. Symptoms returned Dx-stg III (stable) Feb06. No treatment.
 
 Re: Sarcoidosis in general
Author: Lottie (---.proxy.aol.com)
Date:   05-25-05 21:10

Jeremy,

Unfortunately, almost any symptom that you could name could be an indication of Sarcoidosis. That is one of the problems of the illness, and what can make it so difficult to diagnose to begin with.
What I was first researching about Sarcoidosis in 1999 before SarcInfo was created, this was one of the lists I found.

Sarcoidosis Symptoms:

general discomfort, uneasiness, or ill feeling ( malaise )
fever
shortness of breath
cough
skin rash
neurological changes
dry mouth
fatigue
weight loss
skin lesions
headache
visual changes
enlarged lymph glands (armpit lump)
enlarged liver
enlarged spleen

Additional symptoms that may be associated with this disease:
tearing, increased
(actually caused by "dry eyes." The regular eye lubrication doesn't work as well and so LOTS of tears are created to try to keep the eyes moist)
hair loss
eye burning, itching & discharge
seizures
nosebleed - symptom
joint stiffness
rales or other abnormal breath sounds

Note: There may be no symptoms.

Complications:
cardiac arrhythmias
cranial or peripheral nerve palsies ("twitching")

pulmonary fibrosis (pulmonary refers to lungs)
pulmonary hypertension
anterior uveitis (inflammation of the iris)
glaucoma and blindness (rare)

You should be having an eye exam by an opthamologist every year.

Myself, I would also be especially concerned about heart, lung, and nerve problems. But, as you can see there are many things that can indicate that the Sarcoid is progressing.

I had cardiac symptoms (rapid heart rate, skipped beats, etc) prior to the diagnosis, which went away temporarily while I was on Prednisone. They began returning last year. My most recent echocardiogram at that time showed that I had more inflammation than I did before I was diagnosed with Sarcoid. I did get worse while on Prednisone.

I know that you're in a tough situation, and I wish it could be easier for you.

Please keep in touch.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: Sarcoidosis in general
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   05-25-05 21:15

Jeremy,
You are correct that at times it is difficult to 'read' your symptoms. It may be of help to keep a journal of both your symptoms and your daily activities including your medicine dosing amount and time. For instance, weaning from steroids can cause you to experience muscle and/or joint pain or discomfort, sun exposure will also. If you keep track, you may notice this symptom occured after a reduction of prednisone or if you have been exposed to sunlight or a restricted food. Weaning from steroids and D level spikes can cause very similar symptoms. A calendar or little 25 cent spiral is all you need to briefly note your day.
Sue Caroline

Sx.95, iritis 96. Pred. to 3-01. Pred., IV Medrol, MTX,neoral end 02, Dx. Neuro w/Cardiac sx, severe hip and hand pain, M-9-02, Benicar 12-02. MP-I Jan. 03. 1,25 D 58. Cardiac, & joint pain resolved w/MP-1. MP-II Feb. 04. Oct. 04, 25D=10, 125-D=34
 
 Re: Sarcoidosis in general
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-25-05 21:17

Jeremy,

If you are interested in particular symptoms, you can use the search engine for those keywords to find what others have posted about their experience with that symptom.

A search feature is provided at the top left of the index of threaded topics on this forum. Be sure to select "all dates" for the greatest number of responses to your search.

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: Sarcoidosis in general
Author: Eli (156.101.1.---)
Date:   05-31-05 05:09

Trevor. Thanks for your response.

In response, I was hoping you would point to information about potential side effects of your proposed treatment. There must be some effects (and you do refer to herx reactions as an example). There's nothing wrong with potential side effects, if you know about them and have an opportunity to weigh them (even a man of such limited comprehension as myself deserves no less).

The effect of no sunlight intrigued me, especially in light of the recent yahoo article regarding sunlight and cancer. I don't see on this website where you address the effect of no or little sunlight on the optical nerve or on depression. I ran a search. I wasn't being disrespectful. I was being curious. You could have pointed me to a location where you previously addressed the issue. Or ignored me. Or you can insult me -- that's your right and your choice.

It's a frustrating and scary disease, sarcoidosis. People who come to this website, who are symptomatic, or who are asymptomatic, want to know the truth and want to be able to weigh the pros and cons.

Eli

P.S. You yourself have referred to this site/these forums as the "message board" The bottom link below refers to the "sarcoidoisis information discussion info message board forum." Why are you insulted that I used the term "board."?
 
 Re: Sarcoidosis in general
Author: Lottie (---.proxy.aol.com)
Date:   05-31-05 19:42

Eli,

All of the information that you need is on this site and/or our sister site MarshallProtocol.com .

The Herxheimer reaction is actually a sign that the bacteria are being killed.

Most doctors only measure 25D, and not the 1,25D which is the active D hormone. The information in that article is very likely based on the measurement of 25D levels. The level of 25D in patients with Th1 illnesses will often be low, as it is used as fuel to create the 1,25D.

If you haven’t already, I strongly urge you to read the information at About The Marshall Protocol, and then ask any further questions you may still have.

For instance, this is from that section of MarshallProtocol.com… Won't avoiding the sun increase my depression?, and it may answer some of your questions.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: Sarcoidosis in general
Author: ella (63.164.145.---)
Date:   05-31-05 20:14

I was diagnosed with pulmonary sarc in 1999 with only mild chest pain as a symptom. That symptom went away but flu-like symptoms and fatigue returned in summer/fall 2004. I was started on 20 mg Prednisone 5 weeks ago after a CT scan showed some changes since the last one in 1999 and have weaned down to 5 mg now. After 2 weeks on the Pred, I started yawning/sighing which I think may be shortness of breath. The past few days it seems to have gotten worse. I haven't found a doctor to monitor the MP yet. Should I stay on the Pred. at 5 mg until I can find someone to put me on Benicar or try to wean off the Pred. now. According to my pulmonologist's schedule for weaning, I can start 5mg , every other day for 4 more days and then stop completely. I don't want the dyspnea to get worse.
Thanks so much for your help.
I'm awaiting D-Metabolite testing results and currently looking for a doctor in my area.
Ella
 
 Re: Sarcoidosis in general
Author: Lottie (---.proxy.aol.com)
Date:   05-31-05 21:50

Ella,

Welcome to SarcInfo.

Benicar does make the weaning easier. However, you haven’t been on Prednisone for very long, and may be able to wean from it even before you find a doctor who will help you. The pulmonologist’s schedule for weaning may be more difficult for you than if you follow the guidelines in this document… Weaning from Prednisone

We do now know that Sarcoidosis is caused by Cell Wall Deficient Bacteria, and that Prednisone only suppresses the immune system, and that the bacteria flourish while you are on it. You may indeed find that you feel worse than before you started the Prednisone.

I will send you additional information via email

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: Sarcoidosis in general
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   05-31-05 22:43

Eli,

If you read all the information in these two forums, your questions should be answered:

ESSENTIAL INFO ABOUT THE MP

Marshall Protocol FAQs

Our latest FAQ, I don’t understand the science behind the Marshall Protocol. Where can I get answers? should address your concerns about the use of our websites.

Best,

Meg
 
 Re: Sarcoidosis in general
Author: Zina (---.in-indianap0.sa.earthlink.net)
Date:   08-09-05 16:43

Hi! I am worry about my son. 2 week ago my son fainted. He went to doctor, everything is fine, but he complain on breathless - shorthess breath. Doctor send for X-TRAY (CT) and show is lymph nodes in the chest inlarge. They want to do biopsy. It could be lymphoma? or corsoidosis?
 
 Re: Sarcoidosis in general
Author: Lottie (---.proxy.aol.com)
Date:   08-09-05 19:39

Zina,

Welcome to SarcInfo. I understand your concern for your son. How old is he?

The shortness of breath is common with Sarcoidosis, as are the enlarged lymph nodes. The doctors can determine if your son has a Th1 illness, which Sarcoidosis is, by doing a simple blood test.

D METABOLITES TESTS

I suspect that they will want to eliminate the possibility of it being lymphoma by doing a biopsy.

If they should determine that he has Sarcoidosis, they may suggest that he start on Prednisone, or other steroids. 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.

You, or your son may recognize the symptoms listed here:

Hypervitaminosis-D Symptoms

Please read through this thread with information about sarcoidosis at our sister site, marshallprotocol.com for a better understanding of some of the issues about diagnosing and treating sarcoid.

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: Sarcoidosis in general
Author: bob osnato (---.atlsfl.adelphia.net)
Date:   08-12-05 14:05

I have recently been diagnosed with sarcoidosis. I have now been referred to a thoracic surgeon. I'm curios since all the material I've read does not refer to any form of surgery.

Am I possibly misunderstanding this fortcoming visit for a biopsy?
 
 Re: Sarcoidosis in general
Author: Meg (---.dhcp.eucl.wi.charter.com)
Date:   08-12-05 15:02

Hi Bob,

Welcome to SarcInfo. Is your diagnosis biopsy-proven already? If so, there is definitely no need for another biopsy. Biopsies are considered necessary by specialists who want to be sure of the diagnosis before they start you on prednisone.

With the Marshall Protocol, all you need is the D METABOLITES TESTS and a few other (optional) inflammatory blood markers. We believe that the MP is a safe and effective intervention, unlike the standard treatments.

There is a compliation of sarcoidosis information (including biopsy) at our sistersite, Marshall Protocol.com in the side topics forum. Please click on this link:

SARCOIDOSIS

Let us know if you have any questions about recovering from sarcoidosis with the Marshall Protocol that are not answered by the patient tutorials, links, papers for physicians or threads on this site. You can also find easy to understand explanations and support on our sister website, marshallprotocol.com. (MP.com)

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
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Historical perspective on Sarcoidosis:


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

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Sarcoidosis

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