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

I have had tests for it including the proper D tests every 6 mos as well as annual pulmonary function test, blood work and x-rays. I ski and swim and sail. For a while I tried the marshall protocol and my D crashed and my bones got weak.

I got kicked off his stupid mushroom people plan and joined with a group of others who don’t enjpy living in permanent sickie status in a boarded up world herxing to death half the time and being a fat mushroom the rest. SOme people on his boards have been on there for years and are still living like vampires.

Even if it kills me in 20 years which I totally doubt since I have had zero symptoms in 20 years,and clear tests as well, well at least I didn’t spend my time in the dark typing on a computer with a nut meglomaniacal charletan like “trevor”

Listen to your doctors, Get checked if you feel badly, and if you are ok, believe that you are ok and live your life and be thankful that you are not sick instead of dwelling on being sick, Nothing makes one more ill than thinking the other shoe wil be dropping.

20 years free of any sign of sarcoidosis after conclusive biopsy and x-ray and blood work. Like they say, most of the time, it goes away on its own.

Janie

Good to hear from you! Thanks for sharing that comment. I can imagine what Bernie was pushing through trying to film a movie when he was so sick that he needed supplemental oxygen. I’m sure he suffered a lot in silence.

Best,

Amy

“Mac had an oxygen tank on set, to assist him with his sarcoidosis”

Bernie never lived to see this movie.

You should request a doctor at CureMyTh1.org.

Good luck!

Amy

At present, there is no commercial test available for L-form bacteria and any of the other forms, which play a key role in chronic inflammatory disease.

Possible thyroid disease, whooping cough, swollen tongue, inflamed chest? Wow! I have to smile when I see you using the term “allergy” in quotes. i know as well as you do, apparently, that all those symptoms you list can’t possibly be due to an allergy. If that is an allergy, I’d hate to see what a real disease is.

Having a range of symptom complaints is not uncommon among people suffering from chronic disease. In fact, in my recent Porto presentation, I showed data that only a small percentage of patients in the MP cohort with thyroid disease had thyroid disease alone.

Should you try the MP? If I were in your shoes, I definitely would. Try a therapeutic probe. See if the combination of Benicar and low-dose antibiotics can generate the telltale immunopathological reaction.

Do you have an MP doctor? If no, you might want to request one at CureMyTh1.org (Th1 refers to diseases caused by bacteria). Patient advocates can answer your questions free of charge.

Best,
Amy

I’ve read several articles on L-Form bacteria, but still not sure how one tells if they have it. I read information on it when trying to find relief from some very perisitent and [for me] unusual symptoms that the Dr.s - after two Z packs, 2 bouts of Prednisone, and tests to rule out thyroid and whooping cough - determined must be allergic reactions.

I’ve been dealing with “allergic” symtoms for the past 3 months [numb, swollen tongue; rash; itching throat; cough - to the point of breathlessness and nausea; voice loss; inflammed chest (x-ray) due to "allergies", etc.]. I have reduced [and try to avoid]certain foods that I am sensitive to. My allergist is working on shots [yet to begin] and my nutritionist says my immune system is shot. My Vit D, 25-Hydroxy levels are 21 ng/ml, and a CBC with Diff showed low Eosinophil, Lymphocyte, and high Neutrophil and white blood count.

I’ve had allergies for years and went from shots to Allegra [as needed], but since getting a staph infection last year and reacted to the sulfa medicine, I’ve been having smaller versions of the “latest-greatest” symtoms on and off for 9 months.

So, I’m not sure if L-Form Bacteria pertains to me or not and, if so, not sure how to have my Dr. “test” for it. Any thoughts?

Thanks,

Tracy

I’m so glad that you are thoroughly looking into the MP and that you are taking appropriate action. Unfortunately when it comes to diet, there is no diet which can eliminate your husband’s symptoms. Your husband’s symptoms are caused by bacteria, and he needs to kill those bacteria with the Marshall Protocol, unfortunately, before those symptoms will disappear. However, in order to do the MP correctly, he must do a specific diet.

The most important component of that diet is the avoidance of foods containing vitamin D. We also recommend that MP patients do not eat white bread products that have not been supplemented with folic acid and that they keep their intake of other carbohydrates to a moderate level. The avoidance of vitamin D in his diet will put his immune system in the best position to kill the bacteria making him ill, so he should start to avoid vitamin D as soon as possible, even if he hasn’t started the MP. For more specifics on what diet to eat in preparation for the MP see here.

Best,
Amy