DR. Heyman

Billt

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I couldn't find anything bad on him and has video's are very interesting. Sounds very knowledgeable in several areas. But just looked a little to good to be true . I was hoping some on PR would have had some experience with him. Always looking for another approach to get son better... Thanks for the info
 
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https://www.healthrising.org/blog/2022/06/15/chronic-fatigue-syndrome-recovery-heyman-cirs/

Would suggest reading this. Verdict is out on how reputable he is. But considering one guy is in remission and got a CIRS diagnosis (fairly sure it's not just him) he is probably just attacking the disease from one angle (with his own hypothesis) but if the protocol gets results....

His hormonal analysis is very interesting I personally think, more info is in the article.

He's saying that ME is often a mis diagnosis and that CIRS is the correct condition. But that rules out viral or bacterial infections which cause all symptoms - which Cort points out in the comments to a commentor.
 
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At any rate people like @Hip might find this interesting: https://microbiologydx.wixsite.com/dlmmicro/visit-us

Dr Heyman seems to advise this test to rule out bacterial resistance colonies of organisms in the naso pharyngeal passageway. This must be the same test that Dr Markov does @Hipsman ?

I have contacted them to see if sample quality degrades if being posted from a country likt eh UK, as it would be nice to get this test and rule out an infection in this area.
 

Hip

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I remember Cort had a page on a patient named Ryan who said he thought he had ME/CFS, but later realized it was CIRS, and once he got the right CIRS treatment, he returned to near full health within 5 months.

So Ryan believed he had been misdiagnosed with ME/CFS, when he really had CIRS, and the CIRS treatment got him into near remission.

But then about a year later, Ryan changed his mind, and decided the CIRS diagnosis was not correct, and his story was pulled from Cort's Health Rising blog. However, you can see a Wayback Machine archive of the page here.
 

Hip

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So this Ryan guy relapsed on the treatment protocol? Is that right?

I did read the link but it goes on a bit.
I don't remember the full story, but I know to start with he was adamant that he had been misdiagnosed with ME/CFS when he really had CIRS mold illness. That was his hypothesis. He started to think that a lot of people diagnosed with ME/CFS or fibromyalgia in fact have mold illess:
I can't say Fibro/CFS/ME doesn't exist, but what I know for sure is that a majority of those who have been told they have Fibro/CFS/ME really have mold or lyme or both going on. Also, keep an open mind - lots of false info out there.

But later I think he entirely changed his mind, and he said his hypothesis that many ME/CFS patients are misdiagnosed and actually have CIRS was wrong.
 
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Hmm well can't say im too surprised but the generic markers sounded interesting. Bit annoyed Cort posted this story at all if he knew about Ryan. There must be other things he could be writing articles about.

Assuming cirs is actually a legitimate illness not a made up one by one lone doctor.
 

Hip

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Hmm well can't say im too surprised but the generic markers sounded interesting. Bit annoyed Cort posted this story at all if he knew about Ryan. There must be other things he could be writing articles about.

Assuming cirs is actually a legitimate illness not a made up one by one lone doctor.
Yes, I got quite interested in Ryan's story, and his hypothesis that many ME/CFS patients may be misdiagnosed, and once they get the right CIRS diagnosis and treatment, they may be cured.

I got involved in a PM conversation with him on Health Rising. I've just found that convo, and this is the reason Ryan gave for pulling his story from HR:
I took it off because I lost faith in the Shoemaker protocol. I did have good improvement but I believe that was solely based on the CSM. Once i couldn't handle CSM anymore after 3 months i switched to other binders and went downhill. I found out CSM is also good for lyme and then tested positive for lyme and I believe that is the #1 cause of my sickness.

It's interesting that cholestyramine (CSM), the binder he said he obtained all his improvements from, also binds to bacterial toxins. So if Dr Markov's and Prof Michael Maes's bacterial toxin theories of ME/CFS are correct, you might expect CSM to have benefit for ME/CFS, even if no mold toxins are present.
 
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Cc @Nuno

Very interesting Hip thanks.

This is my first time coming across csm I've got to say. Yet it sounds like an antibiotic. But I guess the question as ever is what else does it bind to? Considering I get neutropenia from oat bran and I'm not aware that anyone else does (data very lacking) maybe I do have bacterial issues too. I feel better on the oat bran after awhile but my asot was negative and so was my mycoplasma pneumoniae test. So no red flags yet

I'll have to look up csm. You ever tried that @dreamydays ?

I wonder what side effect was so bad from csm he had to stop taking it...

I guess Ryan had no idea then that Lyme tests are extremely unreliable for all the reasons we already know about. That's not to say he didn't have some sort of biofilmed bacterial infection. I got a weird infection in my throat last June and i didn't feel quite the same after that and never got a full course of antibiotics. 2 days worth seemed to dislodge it. Anyway my point is you never know exactly what you've got. Nhs did do a culture of my throat though and nothing came back so maybe that's not really my issue after all.

Let me know if you have anymore info about csm side effects :)

Thanks Hip.
 

dreamydays

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Cc @Nuno

Very interesting Hip thanks.

This is my first time coming across csm I've got to say. Yet it sounds like an antibiotic. But I guess the question as ever is what else does it bind to? Considering I get neutropenia from oat bran and I'm not aware that anyone else does (data very lacking) maybe I do have bacterial issues too. I feel better on the oat bran after awhile but my asot was negative and so was my mycoplasma pneumoniae test. So no red flags yet

I'll have to look up csm. You ever tried that @dreamydays ?

I wonder what side effect was so bad from csm he had to stop taking it...

I guess Ryan had no idea then that Lyme tests are extremely unreliable for all the reasons we already know about. That's not to say he didn't have some sort of biofilmed bacterial infection. I got a weird infection in my throat last June and i didn't feel quite the same after that and never got a full course of antibiotics. 2 days worth seemed to dislodge it. Anyway my point is you never know exactly what you've got. Nhs did do a culture of my throat though and nothing came back so maybe that's not really my issue after all.

Let me know if you have anymore info about csm side effects :)

Thanks Hip.
Sorry I haven’t, it’s been on my list for many years but didn’t seem the best fit. Thanks for asking.