I am sorry to hear that you are suffering so badly. You sound very sick indeed.

If you’ve read on this site, you know that we don’t think much of Prednisone. We argue that Prednisone’s immunosuppressive effects allows the pathogens which cause sarcoidosis to spread with greater ease.

The Marshall Protocol is a curative therapy for sarcoidosis. Due to the severity of your illness, this protocol may take five years or more.

If the MP sounds like it may be a good option, I would encourage you to read these articles from our Knowledge Base, which is a work in progress.
http://mpkb.org/doku.php/home:patients
http://mpkb.org/doku.php/home:patients:mp_duration
http://mpkb.org/doku.php/home:starting
http://mpkb.org/doku.php/home:starting:physician
http://mpkb.org/doku.php/home:starting:physician:finding
http://mpkb.org/doku.php/home:othertreatments:corticosteroids
http://mpkb.org/doku.php/home:othertreatments:corticosteroids:weaningoffsteroids

Then, if you have further questions, post them at http://curemyth1.org where volunteer patient advocates will answer them.

Hope this helps. Good luck!

Best,
Paul

I WAS DIAGNOSED W/SARCOIDOSIS IN 1986 AT THE
AGE OF28 AND I HAVE USED PREDINSONE EVER SENSE
IT STARTED IN MY LUNGS/SKIN/EYES AND SINUSES
AND IN 1997 I WAS DIAGNOSED WITH SARCOID
IN MY LIVER WHICH DISABLED ME
I AM 51 YEARS OLD AND MY LIFE IS A LIVING HELL.
AMY PLEASE COMMENT.

KENNY.

PS.I AM A AFRICAN AMERICAN

I didn’t say anything about Benie it was actor Sharon Leal who played in Bernie’s last movie “Soul Man”. She was an eye witness to the fact that He still had active sarc and was using oxygen right up until he died. It wasn’t me : )

I just don’t understand why Sharon saying that would make you so angry at us MPers. Its not our fault Bernie died.

Your posts don’t make a lot of sense either Jane.

First you say you tried the stupid mushroom people plan for a while but got kicked off. Now you say you were never on it. So yes one of those posts has to be a lie. You can’t have tried it for a while but never been on it can you? Which one was it please?

I just hope that you don’t get even more angry if you have a heart condition. Please try and stay calm.

Pat.

It sounds like you’ve figured everything out then. You have a right to your opinion but if you don’t think that sarcoidosis is a serious disease that needs treatment then Bacteriality is probably not a place where you should continue posting. The focus here is on the severity of chronic disease and the importance of killing the bacteria that make patients so ill.

As for Dr. Marshall not answering your questions, it is not his job to answer questions. Dr. Marshall focuses on the science and works the conference circuit behind the scenes. Questions are usually answered by patient advocates and nurse moderators. What I’m saying is that Dr. Marshall is a volunteer and is not obligated to answer patient questions. He tries but often is too busy.

Based on your tone in your posts on this site, I can’t help wondering what kind of tone you used on the MP board. If your tone was as angry as it is here, I understand why your questions were not answered.

Best,

Amy

My doctor thought it was crazy to check my D levels every 6 mos, his name is Dr Jederlinic at Bassett Hospital in Cooperstown, NY and he decided to humor me. If you contact him and ask about me I will give you permission to see my records. I am cured. My body cured itself.

I do have a heart condition that was caused by a resolved granuloma years and years ago. That also gets checked once or twice a year. It has never changed one iota, I have never had a relapse or recurrance of my lung involvement either.

I wanted to do the MP but Trevor would not answer my concerns about herxing and a-fib and tachycardia nor would he answer them for quite a number of people who almost died from that. So laugh all you want–he acted like a pompous jerk with no answers backed into a corner. I am very lucky I never did it. Thank God.(not God trevor). He was rude and patronizing . And I am glad I didn’t waste time and money on it.

When I tried on my own avoiding sun my vitamin D levels got way too low so I had to take vitamin d to get back to normal levels and ratios. So whatever caused it I don’t care–bacteria, virus, luck, genes, I have never been sick from it. I know quite a few others who were also kicked off for merely asking questions Trevor couldn’t or wouldn’t answer, who are also fine.

Did that make me angry? Did your laughter and calling me a liar and my doctor a liar? for a while and when, I think about it or read stuff like you wrote about Bernie Mac and me? yes.

The rest of the time? No I am too busy out in the outdoors in the sun, skiing and surfing to be bothered.

I think the idea that everyone needs treatment is out right quackery and to tell people they do is really slimey. I think most people you deal with have other problems and cling to MP for other reasons. Most people with sarcoidosis get over it by their own bodies getting rid of it. They have now said that Bernie Mac did NOT die from it anyway.

Jane
do not email me at my private email.

I am very sorry to learn about your experience with the MP. I don’t know exactly what was spoken between Dr. Marshall and your doctor but I can say the following. Did your doctor understand that your kidney symptoms were the result of bacterial die-off in the kidneys and subsequently a sign that the treatment was working (albeit way to strongly!)?

A problem in terms of succeeding on the MP is that the kidneys have to be in relatively decent shape for the patient to make progress. That’s because when bacteria are killed in any other area of the body, the kidneys and the liver deal with the byproducts of the die-off – toxins, cellular debri etc.

In your case, it seems that your kidneys were infected with a great deal of bacteria themselves. This probably caused them to be unable to deal with the die-off elsewhere in the body and stalled their ability to function correctly. We see this from time to time in our sicker patients. I have never heard Dr. Marshall tell anyone to give up on the MP or that there is no hope to forge ahead. So I wonder if it was your doctor who decided that he didn’t want to keep you on the treatment if you were going to have to manage difficult kidney issues, especially from the get-go?

I’m not saying that you should have pushed through your symptoms, but there are ways to slow the die-off at the start of the treatment that a doctor more knowledgeable about the MP might have tried. I know you may not want to try the MP again, but if you ever do, I recommend that you go see a doctor who has many MP patients and is very experienced in managing difficult situations and the MP – even if you have to travel to see him/her. Some doctors have over 100-200 MP patients and those are the ones you would want to visit. I can’t guarantee that they could tone down the die-off in your kidneys effectively if you had the same problems upon re-starting the MP, but they would likely try more options than your past doctor.

The thing about the MP is that your case doesn’t show that the treatment doesn’t work. Rather, it shows that the MP is very difficult and sometimes work too aggresively – in the sense that it allowed for so much bacterial death in your kidneys that you couldn’t manage the die-off symptoms.

About your experience on the MP board, I apologize on behalf of the moderators if that means anything. The board is a difficult place to ask questions not directly related to how the treatment works because the moderators are volunteers and, in my opinion, work too hard already. We need more moderators but few people can offer help because the job offers no pay and they are short on money because of their illness and seeing doctors for so long. So the moderators tend to triage conversations and answer those questions which directly help people start the treatment. Questions about why things went wrong etc. could have gotten pushed to the wayside, first because often the nurses don’t know exactly what to tell you (they can’t give medical advice) or there simply isn’t time for them (a great shame).

As for other boards that don’t allow for discussion of the MP, you are probably better off not talking about your case there as I highly doubt the members understand anything about the treatment. You will definitely get back wrong opinions rather than any sort of accurate answer.

I know what it’s like to feel like no one cares about your state of health. I’m sorry this happened to you. Looking for a better MP doctor is an option.

All the best,

Amy

Your comment is so shot through with holes that it made me laugh….. a lot : )

Do you really expect anyone to believe that your docs have been checking your D levels every six months for the past 20 years !!!! Ha ha. Only a very good MP doc would do that and no one would have done it 20 years ago LOL.

If you have had no symptoms for 20 years why did you try the MP?????…… LMAO : )) Why are you even here studying it? LOLOL

You also say that you got kicked off the MP……..I wonder why??? Guess that’s why you are so angry???

Please tell us who the group of fat mushroom haters are that you joined so that we can all share in your joy.

However, insulting Prof M was not funny. Why don’t you go away and post your ridiculous fairy tails somewhere else.

I also hope that you can summon up the strength to face your demons and restart the MP. You know deep down that you need to, that is the real reason that you are angry……….yes ? Take care.

Pat. Life saved by the MP.

I’m not sure why you come off as so angry in your post when you apparently are living disease free and enjoying life.

Your story is your story and I won’t contest it. However, unlike you, the vast majority of sarc patients who seek out the MP do the treatment because they are very sick and symptomatic.

It sounds like you have a complete lack of understanding about the MP. Vitamin D levels are SUPPOSED to drop on the MP. Do you really have evidence that your bone mass fell during what appears to have been the very short time you spent on the MP? If you do, it contradicts a great deal of data we have on our patients which shows that bone mass actually improves during the MP.

Also, blocking light is only required for patients who become very light sensitive. People who have lower bacterial loads such as yourself tend to hardly have to block light (except for excessive sun exposure) while on the MP. So if you were living like a vampire then you obviously had not read the treatment guidelines correctly. The MP doesn’t have anything to do with mushrooms and actually prohibits supplements so “mushroom people” does not describe patients on the treatment.

Dr. Marshall will be giving the keynote session at the Conference of the Gene in China – one of the most prestigious scientific invites of the year. And yet you call him a charlatan?

I find it irresponsible of you to tell sarc patients not to seek treatment. You decision not to seek treatment is personal but this is a life/death topic. I would be more careful about your conclusions about sarc when you seem quite unfamiliar with the reality of the disease or the MP.

Best,

Amy