1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
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  1. Creekee

    Creekee Senior Member

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    Arizona
    Resting, thanks much for all the specific info. More puzzle pieces to work with! I'm so happy to hear how much better you're doing. Do you also have Lyme or other specific diagnoses?

    Yes, I have "moderate" biofilm; PR and biofilm diagnosed in Nov 2012. My first approach was to go after the cootie, but after six months of antibiotic treatment (and the 15 gram fat diet) I was deathly ill, had lost 50 lbs and ended up in the emergency room. Had to switch gears and put healing my gut and getting stronger onto the front burner. Am doing much better now and starting to take another look at how to tackle the protozoa.

    Do you feel your PR was eradicated? Or just knocked down? Dr. F is on record that he has never "cured" anyone of it.

    Again, really appreciate you taking time to share.

    Warm wishes!

    Creekee
  2. Flurrywinde

    Flurrywinde

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    Fresno, CA
    Do you think the terrible reaction you had was Herxheimer? I just read an interview with Dr. Fry, the researcher who discovered Protomyxzoa Rheumatica, and he said the herx can make people quit treatment.

    I too am focusing on the gut, though, acting on the theory that since 85% of the immune system is in the gut, our body might be able to handle the PR is we get our own immune system going again. I might be wrong, though, cuz maybe the biofilms develop while our immune system was down and then block it after that. OTOH, I've heard Dr. Campbell-McBride say that healing the gut can help MS, so if PR is responsible for MS (and other autoimmune diseases) like is believed, then the gut may be the right place to start. However, maybe you just had to go slower when killing the PR? For example, I'm starting with just anti-biofilm supplements (EDTA and NAC), then adding in antibiotic herbs like neem and tulsi. I don't know if these will help PR specifically, but we'll see.
  3. Creekee

    Creekee Senior Member

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    @Flurry,

    Dr. Fry thought it was a herx. He wanted me to add plaquenil on top of the doxy I'd taken for six months. He says they can work synergistically. But I had gotten so sick I was bedbound and couldn't eat. Never tried the plaque addition. So yeah...if that was a herx, it made me quit treatment.

    I do wonder about the doxy. I never took more than 100mg / 2x day. Is it possible to herx for six solid months on such a modest dose?

    And is it a good choice for a longtime infection? I have an NP whose area is Lyme, but she says doxy is worthless for any old infections. Whatever I have, I've had it for more than 30 years. Dr. Fry knows the length of my illness, so he clearly thinks doxy can work on ancient PR infection.

    [Btw, my PR diagnosis was in 2011, not 2012. I'll keep brain fog on the list of active symptoms!]

    I'm with you: should we be hammering the cooties or rebuilding our immune systems?

    As the universe will, I was eventually forced to move GUT to the top of my list just to survive. It took more than a year before I found the magic gut-healer for my situation, but I'd say it's about 90% healed now. And I do feel better than I've felt in a long time. Which is why I'm starting to go back around and consider cootie treatment. I like your sequence of gut-healing, anti-biofilm supplements and antibiotic herbs. If I pursue the PR, I'm pretty sure I'm gonna steer clear of antibiotics.

    How is your gut coming along?
  4. Ema

    Ema Senior Member

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    I took NT Factor by Researched Nutritionals at 6 tablets/day for 2 months. I didn't notice anything from it unfortunately though perhaps I should have given it the third month. It was pretty expensive though.

    Why not hammer the cooties AND rebuild the immune system both together??

    Ema
  5. Resting

    Resting Senior Member

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    I, too, first worked on boosting the immune system/gut and continue to do so. It is never ending, though, with new discoveries of bacteria etc. to add to the mix.. It is like juggling several balls and someone keeps throwing a new one in just when you were finally able to keep the ones you had, in the air!

    Creekee My doctor does suspect chronic lyme but there is so much overlap, who knows what the underlying cause is besides the EBV that initiated this illness for me. My CD-57 came back in the range of chronic lyme, for whatever that is worth. I never tested + for any specific lyme test but we all know how accurate they are.
    It sounds like the approach Fry took with you was way too aggressive. My doc consulted him but then used her own knowledge and instincts. She deliberately took it slowly so I would not have a bad herx reaction. Perhaps Fry would be willing to take it at a less aggressive pace, if you are willing to try again. I wouldn't blame you if you were not willing.
    I don't think the PR is gone, just less... in the way, for now.

    Flurrywinde I tried NAC with no results but never tried the chelation supplement EDTA. My doctor thought it would be too fast for me at this stage and cause a bad reaction. I am hoping they help you. Each person seems to have a different outcome. It is smart to boost your immune system. The gut is a great place to start. I used glutamine first and continue to use digestive enzymes and probiotics. But whatever works for you is the way to go.

    I was just told to add Lymplus and Plasmyc (two targeted Transfer Factors) after my CD-57 count came back low. I'll have to research there value. However, I do believe strengthening our immune systems will help fight the "cooties" without having to go through the horrible herx as some, like Creekee experienced. Also sounds like immune boosting has been a successful approach for Creekee.

    I wish you all well!
  6. fibrodude84

    fibrodude84

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    Any updates from anyone taking it or who stopped? Just started.

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