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trying a new method after being diagnosed with protomyxzoa

Discussion in 'General Treatment' started by sianrecovery, Mar 4, 2012.

  1. sianrecovery

    sianrecovery Senior Member

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    Hi guys

    After a few years of paleo diet, treatment with Dr Myhill and doing the mito thing, along with Perrin technique and a few other bits and pieces, inc the methylation protocol, and KPU treatment, I am going down another rabbit hole - and will let you know if it helps. I saw Dr Fry in Scottsdale and tested positive for protomyxzoa rhematica. He describes this as a blood borne protazoal infection which forms biofilm communities in the blood, and identifies it in his lab via dark stain DNA testing. He says it can produce a myriad of symptoms, and an autoimmue vascular condition. Having been treated by a number of people now, I am of course keeping an open mind, but I like the paradigm because it explains all of my symptoms in one hit, including the impossible to eradicate dental infections, and the fact I feel better on certain antibiotics. He recommends a low fat, low sugar diet as he says the biofilms flourish on fats, magnesium and arginine. He may or may not be right, but I am going to give it a try.
    Jarod and MNC like this.
  2. Esther12

    Esther12 Senior Member

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    I'd not heard of this, but it looks a bit dodgy after some googling. I couldn't find any published papers on it, or any real evidence to support this approach to understanding medical problems - but this was just from some internet searching, so I'm not claiming to know what I'm talking about! I'd encourage you to look from some evidence in support of this approach before you put time much money and effort in to it though, as when there's so much quackery around open mindedness can easily lead to problems I'm afraid... good luck with everything though.
  3. taniaaust1

    taniaaust1 Senior Member

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    Sounds interesting.. best luck with it. There are many things out there which are little known about, that doesnt mean they dont exist.
    Lou likes this.
  4. ukxmrv

    ukxmrv Senior Member

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    Is this Dr Fry's specialty Sian? (i.e. do most people see him because he uses these methods to dx infections?)

    Wishing you all the best of luck with the new treatment.
  5. sianrecovery

    sianrecovery Senior Member

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    Fair point Esther, I know how it looks. I did a fair bit of research and soul searching before I saw him. I also took my husband, who is a true cynic, and has a background in biology, into the consult. I also corresponded with several of his other patients. Yes - absolutely ukxmrv - protomyxzoa is his baby, and he has developed the method for testing it. Having said that, he seemed credible, is well regarded within the medical community where he is, and for once this is not costing a lot - the price of a test, a consult, and a script for abx. Protomyxzoa may well not be the sole answer, but what really did strike me when I started looking into biofilm was that many of the suggestions of docs and pracs treating ME to improve symptoms and energy may well not help those of us who also have underlying bacterial infection - for instance, the heavy emphasis on magnesium supplements and good fat supplements which may bolster biofilm growth. Who bloody knows, really. I'm going to give it six months. What I have done so far hasnt worked, time to change horses.
  6. sianrecovery

    sianrecovery Senior Member

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    ps thanks for luck, I think I need it. Re infections, I also had UBI in the US this time, and it seemed to reduce my symptoms a fair bit. A temporary gain, I think, but still good to know. Wish AW was still allowed to do it!
  7. xrunner

    xrunner Senior Member

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    That's quite interesting. Best of luck.
    I had heard and read notes of conf. presentations by Dr Fry with regard to parasites that are often found in Lyme patients but I had never heard of protomyxzoa before.

    Well I guess, that means no more chocolate...
    I knew about magnesium but fats and arginine are news to me. However, I'm not surprised. I too tried the paleo diet and used to eat a lot of nuts ("good" fats, magnesium and arginine) and that didn't help, on top of that had also a lot of magnesium oral and injections, so it's no wonder biofilm has been an issue for me.
    It would be interesting to know a bit more about Dr Fry's recommendations in terms of diet (complex carbs?), treatment etc., if you can, given that most antibiotics and also a functioning immune system can trigger biofilm formation. Do you have a timescale, treatment-wise?
  8. sianrecovery

    sianrecovery Senior Member

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    Hi xruuner

    Damn, just wrote a great bit long response and then lost it. His recomendations re diet are essentially similar to John Mcdougall, who has written several books on the benefits of low fat, high veg. plant protein diets - little meat, nuts, oils, dairy, avocados etc. Re magnesium - I too injected plenty of it, for a long time (ow) and am happy to try another direction. I have a paper by him on his thoughts on magnesium if you want me to forward it, PM me your email. He regards protomyxzoa as promoting vascular dysfunction and autoimmune responses, and suggests heat re saunas and what exercise you can. He is using a varity of abx and anti-parasitics. He says he has got people well, but has not yet managed to eradicate the organism - he regards it at present as a lifelong passenger controlled by diet, lifestyle and meds. He says some herbs work well, but that's not his thing. who knows - I feel like i have spent a long time trying to get my mitos up when perhaps I could have been trying to control the underlying infectious substrat. Or maybe he's talking bollocks. Only one way to find out.
    katim likes this.
  9. Jenny

    Jenny Senior Member

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    Hi sian

    Does Dr Fry recommend things like nattokinese to get rid of biofilms?
  10. xrunner

    xrunner Senior Member

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    I don't get it...nuts, oils, avocados are all high fat veg. and nuts are also very rich in magnesium... Is it the type of fat that matters in biofilm formation? eg. animal vs vegetable fat?, otherwise, if fats are off limits, sufficient calories can only be obtained from starchy foods, no?
    One question about the heat. Does raising body temperature help killing the microbe or there are other reasons it pays to have saunas or exercise?

    Recovery seems a trial and error process. To me it appears to be the name of the game. There's no precise roadmap to recovery and we all try the best we can based on what we know at the time. I also spent a lot of time and other on mito protocols and other stuff without much payback.
    However, in my opinion, it helps to tackle the "thing" from different angles. The fact that this particular nasty bugger cannot be eradicated easily could be a clue that a multifactorial approach is needed, like diet, meds etc. as you mentioned.
    From experience, I also think that going straight to anti-microbials, after being ill for some time, might not be a good idea for a number of reasons, so the time you invested in the past in other support programs may help you as you go through this new phase/treatment.
    All the best
  11. sianrecovery

    sianrecovery Senior Member

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    Jenny - I think he sees the serrapetase lumbrokinase type supplements as nibbling round the edges of biofilm - I assume he regards that as helpful, I will email and ask him. xrunner - yes, all fats - the diet is veg and complex carbs - it would impossible to do for a lengthy time without some deficiencies I would have thought - but for the moment I am prepared to focus on weakening the invader rather than strengthening the host, as the latter tactic has not moved me forward
  12. rwinsmom528

    rwinsmom528

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    Any updates since starting treatment for protomyxzoa?
  13. sianrecovery

    sianrecovery Senior Member

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    I remain on doxy, and feel better than I did prior to starting it. But not cured. I tried to introduce plaquenil, had an inflamatory response, and stopped, intend to try again in a couple of weeks. I upped the fat allowance on the diet, cos it was hard to keep my blood sugar stable. I have continued to avoid supplements with magnesium, calcium and iron to prevent biofilm formation. I intend to continue with this course of action, alongside samento, banderol, serrapetase, and starting thyroid hormone for hypothyroid. And sorting out my newly discovered toxic environment. Multicausal disease, multicasual answer.
  14. alexa

    alexa

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    i ususally eat a lot of fats, nuts, olive olil and a lot of protein, i also take high doses of Omega 3,

    but the last week i ran out of Omega 3 and have been feeling better than i have in several weeks, so i might give the low fat diet a chance... how much fat are you allowed to eat?

    keep us posted how its going :)
    katim likes this.
  15. Lotus97

    Lotus97 Senior Member

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    I'm not saying he's wrong, but how do you avoid arginine? It's in all protein.
  16. Creekee

    Creekee Senior Member

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    The last time I saw Dr. F. he was reconsidering the Arginine. Thinks it may not be a factor after all and told me to never mind. His diet is 15 g of fat per day.

    Fwiw, I got much sicker while on his protocol, eventually ending up in the emergency room. So I have discontinued his treatment. At least for now.
    Lotus97 likes this.
  17. angela

    angela

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    I am in Phoenix and tested + for the protomyxzoa. I have been on his diet for over a month and think I experienced somewhat of a herx last week, it was a little scary as I didn't want to have issues with inflammation or too quick of die off/shrinking of the biofilm. However, I am not on any meds or pro/antibiotics at this point as he did mention that some people get results by following the diet alone so I thought I'd give that approach a wing first. BTW, I do not have ME however I have POTS.

    Creekee, do you think that you were herxing and that is why you got sicker? He specifically told me that is what is supposed to happen when following the diet, you feel worse before you feel better.

    The other thing is he told me 20 grams of fat or less, plant based, no cooking with oil, and strict vegan, stay away from high fructose corn syrup, and occassionally a little avacado is fine (account it into the fat grams consumed of course). He said no tofu or tofu based products and extremely limit soy products. He said bread is fine if I can tolerate it (i.e. I'm not celiac), just go whole wheat (same with tortillas).
  18. Creekee

    Creekee Senior Member

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    angela,

    Hi! Yes, Dr. Fry felt that I was having an extended herx on the doxy. Last time I saw him, he wanted me to add plaquenil on top of the doxy. Said the plaque would make the doxy work better and get me past the herx. I was so sick by then, that I never added the plaque. He did say the worse your herx on treatment, the better the treatment is going to work. If you survive it (!).

    I've now been off treatment for almost eight months. Finally feeling stronger. Guts are better, so I'm starting to consider going after the protozoa again. A bit gun shy about Fry and antibiotics though. :-/

    Btw, I was following the low fat diet for about eight months, while I was on doxy.

    Are you seeing Fry regularly? I know he's not into non-antibiotic treatment. I'm wondering if I can get my GP to supervise my treatment with some input from Fry. Have talked to others out of state who are handling things that way.

    Will look forward to hearing how you do. Best of luck!
  19. angela

    angela

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    I've been to him 2x and go back in 2 months. He prescribed minocycline but I havn't started taking it but he told me some people do well just on the diet alone. I am trying to take it slow as I have a toddler and work full time so I don't want to cause too much havoc on my body with severe herx on top of having POTS. I know another person out here in PHX who is following the diet and went from stage 3 kidney failure to stage 2 just by following the diet for 2 months! So the diet does have some benefits it seems.
  20. Jarod

    Jarod Senior Member

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    Hope it works out!

    Arginine makes me feel great for a couple days, but eventually leads to a crash. Not sure why that is exactly. Avoiding arginine makes sense to me.

    I have an intuitive feeling that biofilms can play a role in preventing recovery. I think plaque on teeth is considered a biofilm. Having good clean and white teeth with little plague seems to be a good health indicator for me.

    I found that NAC goes well with doxy and also may help with biofilms (I think). While taking NAC, my teeth plaque reduced I think (Been a long time though, so take it with a grain of salt).

    NAC can also help with bacterial infections, be a precurser to building glutathione, and protect liver. Might be worth asking your doctor about if you are taking abx.

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