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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just dealing with some heavy-duty menopausal issues.
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New Protozoa: Possible Cause of ME/CFS. An Interview with Dr.Steven Fry.

Discussion in 'Other Health News and Research' started by Gamboa, Jul 2, 2012.

  1. Esther12

    Esther12 Senior Member

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    I don't see someone being a true believer as a good thing either. Cautious, uncertain and honest about one's ignorance is what I would want from a CFS 'specialist'! Unfortunately, such a person would probably be unable to have any sort of career or income.

    re "If a pathogen is found, what do you do?" - It depends if the testing methods which found it have been shown to be reliable. It would depend on how widespread the pathogen was amongst the human population, and whether it was associated with any health problems. It would depend upon how successful the proposed treatment had been shown to be. It would depend upon the risks and costs of any proposed treatments.

    There are so many unreliable tests floating about which can be used to claim problems in particular areas, or that certain treatments are needed, that I don't think it's worth just having a go with random ones, and hoping for the best.

    I know that it's difficult though, and then when one's health is badly affected and no-one knows why, it's really tempting to just try things out, or trust people who claim that they can help. Some people stumble upon something which they think helps them in this way. Personally I'm not keen on this sort of thing though, and think that we'd be better off if we insisted that doctors have truly compelling evidence in support of any of the claims which they make to patients.
     
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  2. xchocoholic

    xchocoholic Senior Member

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    Esther,

    I understand your skeptism because I'm a skeptic too but imho, and please don't take this the wrong way, but you're taking this too far. A healthy intelligent skeptic can hopefully
    discern what to believe after researching the subject. Yes the web is full of misinformation but it's also full
    of facts. Facts that many doctors, big business and politicians wished we didn't have access too.

    Medicare has paid for ALL of my tests that some think are invalid. Cdsa, saliva hormone tests, metamatrix
    stool testing, etc. I'm sure the professionals at Medicare wouldn't waste money on these tests if they were
    invalid.

    It's more likely big pharma, big insurance and traditional medicine would take advantage of
    patients. Just look at the fines and lawsuits in the news everyday. Most of us have seen this firsthand.

    And look at how our govt is going after doctors who try to help their patients. Now there's a red flag if there
    ever was one.

    Functional medical doctors are using some non traditional tests to help their patients. From what I've
    seen these competent doctors are having success with their "cfs" patients. Granted "cfs"
    is a useless term at this point because it can mean so many things. From celiac to parasites to ...

    And who's fault is that ? Over the years they've
    known that patients with "cfs" didn't all have the same pathology but "they" chose to ignore it. And why not ?
    It made their jobs easier and most patients are too dumb to question their doctors. It's easy money for
    everyone involved.

    The internet has changed this tho. Patients are educating themselves with valuable info that our doctors should've
    been taught but weren't.

    It's only because of the info on the web that we know the truth about "cfs". How can we trust any large money hungry organization to do what's best for the little people ?

    Tc .. X
     
  3. sianrecovery

    sianrecovery Senior Member

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    I'm nobody's standard bearer, and I judge by results. I consulted with Fry partly because I knew my symptoms dramatically reduced on certain abx, partly because I had already been diagnosed with a protazoan parasite in my gut via a stool test. Finding someone interested in treating protozoa in the NHS isnt going to happen - I tried. I spoke to several of patients, and I asked my husband who has a background in biology and research to look at his testing methods. I'm four months into treatment with him, and I cant say I've put all of his dietary suggestions into play, but I'm giving it a try. If it doesnt work, I'll try something else. I dont see how the act of trying something makes me anything other than open-minded. When I wrote he was a true believer I was trying to convey my sense that he isnt a charlatan - not that he doesnt test his hypotheses, because I think he does.
     
  4. Wayne

    Wayne Senior Member

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    Hi Baccarat,

    Precisely my sentiments as well. I bought a pound of olive leaf extract and a pound of several different kinds of immune enhancing mushrooms a few weeks ago, and this thread has been a catalyst for me to get started on them. In addition, I had been thinking about restarting an MMS (chlorine dioxide) protocol, and got started on this yesterday also.

    I've researched MMS extensively, and have experimented with it at several different junctures in the past several years. It strikes me as having a great deal of potential to address ANY kind of protozoa (and especially biofilm) that may not belong in our bodies. I already feel a shift for the better in my body (and brain) this morning, and anticipate staying proactive with this therapy.

    I understand the perspective of those who would like to have different kinds of clinical studies to "verify" different kinds of effective treatments. But is it really a perspective we can "afford" to hold on to. An analogy I've often thought of is that we are like pioneers on the Oregon Trail heading west back in the 1800's. If some kind of emergency medical situation came up, they didn't have the luxury of getting on their cell phone and calling an ambulance and being driven off to an emergency room. They worked with what they had on hand.

    I believe it's the same with us. If we aren't proactive and think outside the box, our chances of improvement are lessened substantially. But everybody has make their own choices that they're comfortable with. My nature is to be more the pioneer (with perhaps a little bit of adventure added in). :)

    Wayne
     
  5. Hip

    Hip Senior Member

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    Irritable bowel syndrome (IBS) has been linked to two different protozoa, namely Giardia lamblia and Blastocystis hominis, and IBS is a known co-morbid condition of ME/CFS. Many people had IBS before they developed ME/CFS, suggesting that IBS — and these two protozoa — might play a causal role in ME/CFS. Also the protozoan Toxoplasma gondii is known to cause ME/CFS.

    So you could say that there are already three protozoa either indirectly or directly linked ME/CFS.

    Whether Dr Fry's research pans out remains to be seen; but the idea that a protozoan like Protomyxzoa rheumatica (FL1953) might play a role in ME/CFS seems feasible.


    Blastocystis hominis itself is an interesting emerging new protozoan. Non-pathogenic strains of Blastocystis hominis have been around a long time, but new pathogenic strains of Blastocystis hominis, possibly originating in the Middle East, have been spreading. I posted some info on these new pathogenic strains of Blasto here.
     
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  6. anne_likes_red

    anne_likes_red Senior Member

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    I had successful treatment for T gondii eleven years into my illness and it didn't cure my ME, but I can't know whether I may have been a lot worse off without that treatment.
    I sent some of the links shared here to the doctor who treated me. He was treating patients for ALS at the same time I remember. He's retired now but I know he'll be interested. Thx to the OP for sharing here.

    Sian, re the diet....completely non-fat - I'm curious, does that mean Dr Fry recommends no animal products, in the short term at least?
    And no magnesium either from what I have read?
    Wish you the best with your treatment. :)
    Anne.
     
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  7. mellster

    mellster Marco

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    I know people who had T gondii and were CFS like sick for 3-6 months, but then fully recovered. It is fairly common in some countries and although the parasite might stay in the body, most people eventually do not experience any issues anymore. But I'm sure that it can become chronic for some or develop complications. Regarding the diets we seem to be getting mostly conflicting data, they mostly condemn sugar, this one condemns fat, but if you only eat protein you ain't gonna make it far - so I am skeptical here as well ;) But if we get more positive feedback it may help break into mainstream - good luck!
     
  8. sianrecovery

    sianrecovery Senior Member

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    Thanks very much for posting that Hip, the acute onset of my ME - after a long insidious phase - was after drinking contaminated water, I had IBS type symptoms, and was diagnosed with Blastocytosis. I still have it, but not the IBS type symptoms.
    Anne- he doesnt recommend no fats - just very low, 15 gms a day. He says proto like fat and esp meat fats. That level is too low for me, and I've upped it. I did get what I think was herx when I stuck to it for two months, whatever that means. As a result of seeing him, I've also stopped taking 'restorative' fats and magnesium in heroic quantities as had been previously suggested. Experience has led me to distrust extremes. The idea that calcium, magnesium and iron are implicated in biofilm formation is not just a Fry thing, its a common idea to many people researching biofilm. The field is in its infancy, and much about biofilm is poorly understood. And as for protazoa... they really are the poor relation studywise, if bacteria are less sexy to study than viruses, protazoa are not even on vaguely attractive when drunk scale. Not that I've been drunk for some years now...
     
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  9. justy

    justy Senior Member

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    Sian, could you give us some further info on the diet Fry recommends. I've read that he recommends the Mcdougall diet - which i looked up online it's basically completely vegan - no animal products - and what you do eat is complex unrefined carbs, veg, some fruit, beans and pulses. No olive oil or veg oils. (yikes!)
    Ive also read that many people have good effects just on the diet even without the antiB's
    Justyx
     
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  10. wallace

    wallace

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    I think Dr STEphen Fry is working along the right lines. Bill Clinton is on this diet and he looks great on it. Clint Eastwood more than a decade! I have been on this 10 per cent fat vegan diet for the last 3 years and it hasnt done much for me personally so I am just started a... blood th...inning version of this diet where I also eat a lot of foods high in Vit C. E.g I eat a lot of lemons and lemon juice!Also added coconut meat. For the first time I seem to be experiencing what he mentions, getting a herx from your diet. Of course this may just be a coincidence!!! Time will tell! I have always thought diet is key, we have to keep looking!

    You only eat the whole food so no added oils. You fry in water.
    It will probably be a decade before this can all proved, are we going to twiddle our thumbs in the meantime??
     
  11. wallace

    wallace

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    He has little faith in Myhills method mentioned here:
    Steve Fry MD
    [​IMG]
    • Presented on FL1953 which is now called Protomyxzoa rheumatica.
    • Has found Ivermectin, Flagyl, and a low-fat diet to be helpful.
    • Studies that have been done on Multiple Sclerosis patients show that patients live longer when on low-fat diets.
    • Likes testing from Infectolab from Dr. Armin Schwarzbach for Chlamydia and Mycoplasma.
    • Biofilm is an aggregate of microorganisms in which cells adhere to each other or to a surface. Bacterial biofilms are a structured community of bacterial cells enclosed in a self-produced matrix according to Bill Costerton, a world leader in biofilm research.
    • Lipids (fats) play a role in biofilms.
    • Biofilms impact teeth, drinking water, paper manufacturing, ship hulls, medical implants, food processing, cooling towers, oil recovery, and much more.
    • Iron, calcium, and magnesium all play a role in biofilm formation; be careful about the minerals that you use as these may add to the biofilms.
    • There are 1,000 organisms in normal oral flora found in biofilms.
    • Biofilms consist of extracellular DNA, proteins, and polysaccharides.
    • Biofilms are microbial cells and EPS (extracellular polymeric substances). EPS may be 50-90% of the biolfilm.
    • Microbes are quorum sensing – biofilm communities talk to each other. Decision making is made by decentralized groups to coordinate behavior. This is used to coordinate gene expression.
    • When microbes come together in a group, it becomes a more complex entity.
    • Biofilms play a role in many diseases including ear/nose/throat, dental, respiratory, urology, orthopedic, chronic wounds, medical devices, catheters, chronic inflammation and osteonecrosis.
    • Many areas of disease in the body are related to biofilms. Coronary artery disease, MS, ALS all have association with biofilm communities.
    • 46/50 children with otitis media (ear infection) had biofilms. Chronic rhinosinusitis is a combination of biofilms and several microbes.
    • Biofilm plays a role in cystic fibrosis.
    • Nanobacteria can be a cause for kidney stones and generates biofilm.
    • In chronic wounds, bacteria is protected from systemic antibiotics and host defenses by biofilms which makes infection difficult to clear.
    • Actinomyces, Acinetobacter, Treponema, and others are found in dental biofilms.
    • Pseudomonas aeruginosa is a bacteria that is a profound biofilm former.
    • Biofilm infections are difficult to eradicate.
    • The immune system recognizes the infection, but it cannot eradicate it.
    • Items that have been researched in biofilm treatment: Manuka honey, enzymes, multiple antibiotics, bismuth thiols, restricting metals, botanicals, mechanical removal, and EDTA to help chelate magnesium. Magnesium is a main stabilizing force in biofilms.
    • Other substances that are of interest to biofilm researchers include: Lactoferrin, Xylitol, Gallium, Dispersin, Farnesol, RNAIII inhibiting peptide, and Furanone C30.
    • Corneal eye disease may be Acanthamoeba infection (protozoan).
    • Protomyxzoa rheumatica (FL1953) is an Apicomplexa.
    • CCSVI is a very hot topic but is also quite controversial. One has to suspect biofilm communities.
    • Organisms living in biofilm communities are usually not culturable.
    • Biofilms are the rule, not exception. They are ubiquitous.
    • Book – "Biofilm Primer" by Bill Costerton.
    • There is a Center for Biofilm Engineering at Montana State University - http://www.biofilm.montana.edu/
    • Silver is a well known biofilm inhibitor.
    • Ozone is used in industry to reduce biofilms. Not sure if it works in humans, but may break up biofilm communities.
    • Fry Labs does microscopy, serology, and molecular diagnostics.
    • Protomyxzoa is an inflammatory trigger and vascular pathogen.
    • Louis Pasteur believed that all diseases are caused by infections.
    • Some autoimmune conditions include Graves, Hashimoto’s, Insulin-Dependent Diabetes Mellitus, Insulin Requiring Diabetes Mellitus, Multiple Sclerosis, Myasthenia Gravis, ALS, Systemic Lupus Erythematosus, Rheumatoid Arthritis, Sjogren's.
    • Thomas McPherson Brown suggested that autoimmune disease is infectious in nature; primarily Mycoplasma. The book “The Arthritis Breakthrough” was written by Brown in 1992.
    • Fry has seen Protomyxzoa and biofilm in CFS, Fibromyalgia, Scleroderma, Rheumatoid Arthritis, Lupus, Multiple Sclerosis, ALS, Parkinson’s, Autism, and other conditions.
    • In their smear testing, they originally identified Hemobartonella which included Hemoplasma. Today, they suggest that Epierythrocytic bacteria is a better term. They rarely find actual Bartonella when doing PCR testing but have found cousins.
    • Even a single organism can protect itself with biofilm.
    • People with parasitic infections are immunocompromised.
    • They have found a host of different types of bacteria in biofilms – Ralstonia, Acinetobacter (commonly seen in many patients).
    • Protomyxzoa is a slime forming protozoa. It produces biofilm.
    • In ALS, 6 of 6 tested had Protomyxzoa. 5 of 6 tested has Ralstonia which is also a biofilm former. They see profound biofilm communities.
    • When one is infected with Plasmodium as a child, it reduces later incidence of Multiple Sclerosis. The efficacy of quinine in the treatment of MS supports this connection.
    • They are able to culture Protomyxzoa now. The entire thing becomes like gelatin and they cannot get it off the microtiter plates.
    • They have seen filaments as long as 3 or 4 inches in some blood samples. When sticky stuff is coming out during a blood draw, it may not be a clot, but may be a filament or biofilm.
    • In CCSVI, filaments of Protomyxzoa may be involved. It is a vascular disease and may lead to inflammation of the vessel or vasculitis.
    • Protomyxzoa has been isolated from Culex tarsalis and Culex quinquefasciatus mosquitoes. 81% by PCR carried Protomyxzoa.
    • Dogs have Protomyxzoa more than cats and the older the dog, the more likely they are to have Protomyxzoa.
    • Diseases are infectious and a biofilm forming protozoan could be at the heart of the problem.
    • Treatment may include Tetracyclines, Plaquenil, Flagyl, herbs, enzymes, McDougall diet, and mechanical interventions such as CCSVI venoplasty.
    • One should generally not consume arginine, folic acid, or magnesium as these may strengthen the protozoan and thus the biofilm.
    • As for folic acid supplementation, some breads have 5% folic acid by weight. Folic acid may increase cancer risk. Protozoans love folic acid.
    • For autoimmune conditions, antimalarials, antibiotics, anti-protozoals, anti-fungals, anti-biofilm agents, biologics, and dietary modifications may be beneficial.
    • Enbrel may be helpful in some for reducing the inflammatory response.
    • Fry Labs is now working on drug sensitivity studies.
    • CCSVI treatment includes a mechanical clearing or balloon procedure. It runs about 10K. There was reportedly one death from a CCSVI procedure.
    • Stents do not do very well in veins.
    • From the Hubbard Study, about 1/3 feel worse, 1/3 feel nothing, and 1/3 get better with some significantly better. One bedridden runner was running again after the procedure.
    • Protozoans love lipids (fats). The McDougall diet is used as part of treatment. Doxycycline and tetracyclines may target the fatty acid synthesis machinery.
    • Toxoplasmosis is also dependent on fats.
    • Protomyxzoa grows 100 times faster with fats than without.
    • There is a reduction in relative biofilms with the McDougall diet.
    • In some people where they had seen the organism and biofilms, they could not find the organism after being on the McDougall diet. Unfortunately, after starting to eat higher fat content, the microbe was again present and visible.
    • They did a test in people with Protomyxzoa using a 12.5 day water fast and levels of Protomyxzoa dropped to undetectable. Within 2 days of eating again, it was back.
    • Protomyxzoa is found in CFS, Fibromyalgia, Rheumatoid Arthritis, Lupus, Crohn’s, MS, Parkinson’s, ALS, Autism, Scleroderma, and others.
    • Protomyxzoa is Public Enemy #1.
    • Protomyxzoa loves fat. It is complex. It is drug-resistant.
    • Antiprotozoals or anthelmintics may be good options.
    • Roy Swank Diet – 0 people on a regular diet lived with MS for 30 years. In those on low fat diets, all but 1 was still alive.
    • Protomyxzoa leads to vascular disease and chronic inflammation. There are coagulation impairments and retrograde venous blood flow.
    • Many systemic diseases can be explained as vascular phenomenon.
    • Protomyxzoa is likely transmitted by mosquitoes. Ticks are being analyzed.
    • The protozoan is believed to be the foundation pathogen.
    • It is not an intracellular bug; it is a big bug. Likely exists more on the surface of the RBC, not inside.
    • Patients often get worse when on magnesium. He does not support the use of topical magnesium either.
    • Bismuth may play a role as a biofilm inhibitor.
    • Omega fats from chicken and plants are probably the best.
    • Interestingly, it may be that magnesium is sequestered in the body and not always low as magnesium levels seem to go back to normal when the Protomyxzoa is treated.
    • Dr. Fry previously had a success rate of over 70% with his patients. Since introducing dietary modifications, this has now gone to over 90%.
    • http://www.frylabs.com
     
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  12. wallace

    wallace

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    The above comes from Betterhealthguy.com physicians roundtable
     
  13. merylg

    merylg Senior Member

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    This is an interesting thread. Some years back I was given a trial of Plaquenil (Hydroxychloroquine) by my Rheumatologist. I had a severe reaction to the drug. At the time I considered with all my allergies & sensitivities that this reaction was simply a severe allergic reaction. Looking at it in another light it may have been a Herxheimer reaction. I had severe flushing to my face that hurt deep inside my cheekbones. I also had a rash that covered my arms and legs in small red patches. I can't remember if it was itchy or not. It eventually resolved over a number of weeks.
     
  14. mellster

    mellster Marco

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    It is not fully understood why pepto-bismol helps so many people with gut issues, it does coat the lining but it also contains bismuth subsalicylate, which is an antimicrobial. I don't need it anymore, but it was what helped me most of all the acute gut remedies.
     
  15. justy

    justy Senior Member

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    Sorry Wallace there doesnt seem to be a link on your post above to see Fry discussing Dr Myhills protocol (i take it its the injected magnesium hes not happy with.
     
  16. xrunner

    xrunner Senior Member

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    Sian,
    regarding abx what dosage are you on currently? is it a pulsing regime or continuous?

    As for the diet I found what he means by low-fat:
    http://www.betterhealthguy.com/joomla/blog/242-a-deep-look-beyond-lyme

    "As you give more fatty acids, you increase the growth rate of the organism by 150 times. Organism likes fat and fat restriction may be a key to recovery. No meat, no cheese, no oils, no avocados, no nuts."

    (just had a sizeable chunk of raw cheese :eek:... not sure will enjoy it as much going forward)
     
  17. adreno

    adreno 3% neanderthal

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    Tundras of Europa
    I have heard the same argument given about carbs.
     
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  18. sianrecovery

    sianrecovery Senior Member

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    Hi xruuner
    I am still on 200mg of doxy a day, continuous not pulsed. Fry said to me he tried pulsed and it worked less well. However, after looking at Garth Nicholson's stuff (thanks Kurt) I am going to go to a 6 week on, 2 week off regime when I get to six months. tried plaquenil, had an IRIS, am going to try again in a couple of weeks at a lower dose. I feel a bit sheepish reading the above because I've been a bit crap with the fat thing over the past few weeks. The shoulder calcification process I have was acutely painful, and it knocked me off course a bit. Its a tough one as well to balance Fry's ideas with other ideas around the role of fats in cellular health and folates in methylation. Because if proto is as ubiquitious as he thinks it is, why do some people carry it asymtomatically and others get sick? ie, what other underlying mechanisms are at work? Would like to hear Rich's take on this. And do conditions like HPU and porphyria predispose people to a poorer immune response to infections like proto?
    You feel guilty about your lump of cheese? I had bacon for supper - which is not really the behaviour of a compliant Fry patient at all.....
     
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  19. xrunner

    xrunner Senior Member

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    That's a very good question Sian! I wondered what part of the immune system is responsible for targeting these parasites (?)
    Good luck with Plaquenil!
     
  20. sianrecovery

    sianrecovery Senior Member

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    Yeah - cmon sciencey PR members - do my research for me xxxx
     
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