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New Protozoa: Possible Cause of ME/CFS. An Interview with Dr.Steven Fry.

cigana

Senior Member
Messages
1,095
Location
UK
I used to hang out on the boards on McDougall's website, there I found people improving all kinds of diseases by following his diet style.

There's an interesting "game" that was sometimes discussed: the idea is, for the recommended daily intake of calories, what foods do you need to eat in a typical day in order to reach the requirements for the RDA levels of all vitamins and minerals?
You can use the data in nutritiondata.com or the cron-o-meter. The answer is inevitably something that looks a lot like McDougall's diet. Essentially the only way to get your vitamins and minerals in is to eat plants plants plants...(unless you consume very large quantities of "high nutrient density" foods like spinach).
 
Messages
20
Location
Austin, Texas
This is very interesting Tania. It reminds me of many dreams I had over a period of many years. I would suddenly become aware of pulling "stuff" out of my mouth. The texture seemed to change over time, and every time it happened, I felt better upon awakening. I believed something very real was happening, and that I was doing some kind of purge when I had these experiences. My understanding (and belief) is that what's going on with our physical body can affect our inner bodies, and vice versa.

Wayne
Wayne, This is VERY interesting.. I recently had a dream where I was pulling out of my mouth long thick stringy clear threads! AND in the dream I recall that this was similar to my doing this in other dreams?~ what this all means I have no idea. The dream was so realistic that when I awoke I pondered if I ever in waking life had pulled such stuff out of my mouth?~
 
Messages
445
Location
Georgia
Hi Gamboa,

Thanks much for posting this -- very interesting. I suspect any number of protozoa, perhaps including Lyme and/or Lyme co-infections could cause similar disruption in blood flow to and from the brain. Here's a short segment from the article/interview that stood out for me:

Wayne,
Excellent point.
Probably any insult that results in inflammatory cytokines flooding the body--be it bacterial, viral, or traumatic-- could result in slowing of blood flow to the brain. But why do women get reduced blood flow to the brain more than men? And hence, more autoimmune disease?
 

PhoenixBurger

Senior Member
Messages
202
Until Fry has published even a single word of evidence supporting his claims, everyone here should be cautious in their enthusiasm. I got pulled in by this stuff a couple months ago and eventually had egg on my face when I realized he hasn't got an iota of legitimacy backing anything he says. This doesn't mean he doesn't have something in the works, but I was told he's treating people based on this protozoa and charging thousands of dollars for the treatment. In other words, the buzz is going out without any proof, and he's making money on something that has no evidence backing it. I believe he's doing this in the wrong order, which lends credibility to the theory that he's not .... credible. I do believe he should publish his work before he starts treating people ...

Please see this link:
http://relative-risk.blogspot.com/2012/04/real-quacks-imaginary-bugs.html

Gives some perspective to the situation.
 

Creekee

Senior Member
Messages
143
Location
Arizona
Has someone here paid Fry thousands of dollars? 'Cuz he's only charged me my regular office visit co-pay and maybe $400 for tests that were not covered by insurance. Treatment has been inexpensive antibiotics. I keep reading that he is gouging people; would really like to hear that firsthand from someone...
 

Wayne

Senior Member
Messages
4,298
Location
Ashland, Oregon
Probably any insult that results in inflammatory cytokines flooding the body--be it bacterial, viral, or traumatic-- could result in slowing of blood flow to the brain. But why do women get reduced blood flow to the brain more than men? And hence, more autoimmune disease?

Hi MishMash,

I just discovered an interesting article yesterday that I created a thread on. The link is below in case you missed my post.

Plant Extract Honokiol - For Inflammatory Brain Damage ?

Re: why women may be more susceptible to reduced blood flow to the brain? I wouldn't be able to venture any kind of educated guess on that one. All I can do is just chalk it up to one more mystery regarding human health.
 

PhoenixBurger

Senior Member
Messages
202
Creekee you're correct. Firsthand information is necessary regarding that claim. Nothing worse than bad gossip. Despite this though ... why is it a complete ghost town on PubMed both for him as a physician, and any discoveries whatsoever? The Lyme community is - in my opinion - wrought with frauds and scam artists. Especially the doctors. Not all of them, but many ... many of them. And that is from firsthand experience. I know for a fact they've got reps set up on various forums posting as regular people, encouraging newcomers to set up appointments. I know more than one person (again provable) who have taken out 2nd mortages on their homes to pay cash because these wonderful doctors refuse to go the legit route and actually use Insurance. Cash only. Why are none of the tests covered by insurance? Why do they insist on using labs that aren't used by anyone else? Ive heard the reasons. The conspiracy theories. Some have merit. A lot are total nonsense. Some Lyme doctors I encountered (well known, book writing ones) didn't even have a medical degree. One turned out to be a stand up comedian and child psychologist. A VERY well known one. Fry is in this "scene". Saturated in this scene. And as such, I would put a lot of caution in my faith in what he says he's discovered. Until he publishes something. That interview floating around saying he's on the verge of publishing? Its been floating around I believe since 2007. When does the verge become reality? The guy isnt mentioned, documented, or published anywhere, by any other medical institution ... anywhere. Zero. Zilch. Danger...
 

Creekee

Senior Member
Messages
143
Location
Arizona
Hey PhxBurger,
I don't disagree with anything you're saying. Dr. Fry did not help me at all, and possibly made my health worse by telling me to push through despite worsening symptoms, so I can't offer up a glowing recommendation. Even if he's a medical wonder, I don't think he was listening or paying attention to what was going on with me. But I wanna make sure we are dinging him for the right reasons. And I'd like to know enough to resolve in my own mind exactly what's going on with him! Entirely unprovable: I tend to think he truly believes in his discovery. He accepted my crappy insurance and never made much money on me. [The tests that were not covered by insurance are those done in his own lab; results are labeled "research" so I'm guessing that's why no insurance will cover 'em.] I recently discovered a friend of mine was his neighbor years ago and she swears he is a straight-shooter. She considers him brilliant and quirky and completely honest. I think he is paranoid about losing ownership and therefore does everything himself, supported by a tiny staff. I know he is busy fundraising (there's a very uninformative website out there asking for support); he feels his next step is expensive testing. Last time I saw him, he was excited because he had results from something like 17 infected mosquitoes in Central Phoenix. Yeah...17. If this bug is anywhere near as significant as he claims, it is criminal that research is scraggling along so painfully underfunded and understaffed. While we all remain too sick to have a life. I would also caution anyone who's thinking of seeing him that we are all primarily guinea pigs in his world. Only because I share info with several of his other patients do I see how he experiments with all our treatments. We are the research project that he doesn't have to fundraise. :-/ Anyway, I continue keeping an eye on the protomyxzoa thing but I fear nothing's gonna happen there in our lifetimes.
 

Wayne

Senior Member
Messages
4,298
Location
Ashland, Oregon
Wayne, This is VERY interesting.. I recently had a dream where I was pulling out of my mouth long thick stringy clear threads! AND in the dream I recall that this was similar to my doing this in other dreams?~ what this all means I have no idea. The dream was so realistic that when I awoke I pondered if I ever in waking life had pulled such stuff out of my mouth?~

Hi Michael,

Just a couple of weeks ago I had a dream where a I experienced a slight variation on this. I was pulling strings/threads out of my GI tract instead of my mouth. It was so real, I could actually feel movement going on in my GI tract while still in the dream state. -- Personally, I think these dreams are important, and very real. What it all means is unclear to me, but it definitely feels like a good thing, as I always feel better the day following one of these dreams.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
I've only heard a few things about Fry in relation to Lyme treatment, but they were mostly negative. They were by people who had either seen him or known people who have seen him. I'm not sure what to think about him telling his Lyme patients not to take magnesium because it feeds the biofilm. I've heard theories about all sorts of minerals and metals feeding the biofilm. I have no idea if it's true or not, but just not taking them seems a bit odd.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Very interesting thread this. I think this area is really interesting and perhaps under researched in ME/CFS. Protozoa are definately a real possibility for the cause of our illness. Maybe he is onto something. Maybe not. Until he publishes something it is difficult to judge.

Of course, publishing something is not straightforward. Studies take time and tend to be small initially because of funding and that makes them less compelling, even if you find something that is potentially significant. You can't just walk up to a reputable journal and say, "Hey, found this, publish it." Well, you can, but they'll probably say no unless you are already well published and regarded. But still, if you find something like what is being claimed, and do it well then you should be able to get it published somewhere, and somewhere - even a less than reputable journal - is better than nowhere.

Maybe he will publish something soon. I hope he does.
 

Hip

Senior Member
Messages
17,820
Hi Wayne/MishMash, I found something that is interesting:

http://articles.lati...cteria-20130118

Very interesting. The article you mention, "Gender differences in autoimmune diseases: Blame them on bacteria?", says that it may be the type of bacteria in female intestines that predispose females to autoimmune conditions.

They unfortunately did not mention, however, which species of bacteria in females might be driving the autoimmunity.
It would be nice to know which bacteria are involved.
 

sianrecovery

Senior Member
Messages
828
Location
Manchester UK
Fry didnt charge me a lot of money, and I found the abx helpful. It is clearly experimental, and he does say that to patients. I don't intend to have a life on abx and anti-protazoan drugs, but he did help me go in the right direction. As with everything, its a buyer-beware situation - you need to use your judgement. I dont think he's a fraud, but yeah, totally see why people would be cautious about protocols with so little to back them.
As for magnesium and biofilm - that's not just Fry - look at biofilm research by people like Eve Sapi. A better question might be why so mnay ME pracs are desperate to shove as high a dose as they can into their clients.
 
Messages
426
Location
southeast asia
this magnesium thing is a dilemma. :(
and many advise magnesium and experience better on them. also how about protein source mostly contain fats. and calcium.
and iron.
carbs feeds fungus.

do people who have it will get low lvl of magnesium in blood test? calcium, iron?
what about b12
 
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roller

wiggle jiggle
Messages
775
xrunner said:
  • We are all a composite of many personalities. Chronic infections outnumber our own cells by 10:1. We are 90% "other" and 10% "us". Our consciousness is a composite of 90% microbes and 10% us. Our thinking, feeling, creativity, and expression are 90% from the microbes within us. Patients often think, crave, and behave as if they are the parasite. Our thinking is shaded by the microbes thinking through us. The food choices, behavioral choices, and who we like is the thinking of the microbes within us expressing themselves.
  • Patients will reject all treatments that affect the issue that requires treating. Patients will not guide themselves to health when the microbes have taken over.

of course its true, but understandably 100% rejected.
as with this you can bin most of the free-will-concepts - and with this our egos and last but not least 'psychiatry'.

seems, that stephen fryvery interesting to read about stephen fry and tetracyclines/anti-malarials.
that new protozoa Protomyxzoa was never confirmed, it seems?
 
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