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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Mog

    Just found out I have active lyme disease. I am stunned. Help!

    Are IV antibiotics to be preferred over oral abx for treatment in late-stage Lyme?
  2. Mog

    Just found out I have active lyme disease. I am stunned. Help!

    That's fine, thanks very much. I'll google it. I'd seen it mentioned a lot and thought it must be determined by a test, because people seemed sure that they had it.
  3. Mog

    Just found out I have active lyme disease. I am stunned. Help!

    Thanks very much Ema. What is the test for Th1 / Th2 dominance? I haven't had that done.
  4. Mog

    Just found out I have active lyme disease. I am stunned. Help!

    Anyone know the answer to that?
  5. Mog

    Just found out I have active lyme disease. I am stunned. Help!

    My mistake, they do do the PCR test for Bartonella at Infectolab, but I didn't have it done. Is the result of it reliable / conclusive enough to say whether you have Bartonella or not?
  6. Mog

    Just found out I have active lyme disease. I am stunned. Help!

    Sushi, no I've not had the Bartonella PCR. Don't think they do it at Infectolab. Where did you get it done? Thanks Ema and Snowathlete for the advice re Bartonella. Just re-read your article about it, Snowathlete. Going off at a bit of a tangent - if my CD57 is so low (12), why do I react...
  7. Mog

    Just found out I have active lyme disease. I am stunned. Help!

    Okay, thanks again. Thought I'd managed to at least rule out Bartonella but maybe not :( . Does it require its own abx, Rifampin that you mentioned, or will the other Lyme abx treat it as well?
  8. Mog

    Just found out I have active lyme disease. I am stunned. Help!

    Thanks very much Ema. I will note that about treating the immunoglobin deficiencies. I probably would want to start on abx first if I can. Somebody has suggested that the Bartonella antibodies test wasn't conclusive at ruling out Bartonella, because antibodies were low in all the tests...
  9. Mog

    Just found out I have active lyme disease. I am stunned. Help!

    Now somebody has questioned the validity of the tests as a means of diagnosing Lyme :( I thought they were sound enough.
  10. Mog

    Just found out I have active lyme disease. I am stunned. Help!

    Thanks Ema, I'm waiting to hear the doctor's recommendations. I don't know whether to start herbals myself, or whether I could do more damage that way, by driving the bugs further in. I suspect I'd be better to start with abx, then add herbals later. I don't really know. I had immunoglobins...
  11. Mog

    Just found out I have active lyme disease. I am stunned. Help!

    Further to the Western Blot results I posted above, I've just got results back from InfectoLab. Looks like I definitely have Borrelia, Chlamydia pneumoniae, Mycoplasma and Ehrlichia/Anaplasma. The only one I don't have is Bartonella :( . They didn't test for Babesia. Any comments on the...
  12. Mog

    Significant Improvement Story -- Focus on Thiamine Deficiency

    Thanks Questus. That would also explain why Biotin didn't agree with me when I tried it recently for gut problems. If you have a sulphur problem, is it permanent, or is it something that will improve if can get your general health to improve? As a PS to what I wrote above, I think actually...
  13. Mog

    Significant Improvement Story -- Focus on Thiamine Deficiency

    Maybe I should have read this thread before starting my B1 experiment :( Oh well. I do have problems with sulfa so that might explain why it's not worked for me and why I've been getting a lot of headaches on it. I came on to ask if it could be causing headaches / migraines, but I guess I've...
  14. Mog

    The Family Member ME/CFS Prevalence Poll Take II

    Coincidentally, my maternal grandmother (who I think had ME and who I presume I have inherited it from) also had pernicious anaemia, also following on from gastrointestinal problems following surgery. She got B12 injections for it. I actually think she got better treatment and more...
  15. Mog

    Lymes test uk?

    You can get Lyme testing done privately at Breakspear Clinic, Hertfordshire. That's the only place I know in the UK. The one I had done was the Igenex Western Blot, which is sent to the US for testing. They will do other Lyme tests too, including the Elisa (but I don't think it's so accuate -...
  16. Mog

    A Tribute To Rich Van Konynenburg

    I've just heard. I'm so very, very sorry. He helpfully replied to some of my queries on the forum, when I wasn't expecting him to, and as someone above said, he was such a helpful and comforting presence on the forums. His information did give you hope that something could be done, that a way...
  17. Mog

    VIRUSES??? Bacteria??? Fungus??? Oh MYYY!!! Protomyxoia anyone?

    Have investigated coffee enemas but never been brave enough ;) Good for you for trying them. Your herxes certainly sound horrible and the real deal :( I haven't heard of the HLA profile. What's that? Hope you can make some progress with your treatment and get some improvement soon.
  18. Mog

    VIRUSES??? Bacteria??? Fungus??? Oh MYYY!!! Protomyxoia anyone?

    I've been ill for 20 years so if it is Lyme disease, it will be well entrenched unfortunately :( I have just started taking Samento but I'm taking it very slow because I don't want a violent reaction, so can't really say if it's working yet or not. When I increased from half a drop to one...
  19. Mog

    How to stop my hair getting oily so I don't have to wash it so much?!

    Another alternative to dry shampoo is talc. Although when you do eventually get round to washing your hair, you have to wash out grease AND powder :)
  20. Mog

    VIRUSES??? Bacteria??? Fungus??? Oh MYYY!!! Protomyxoia anyone?

    Hi Jacque, My results were: Lyme IgG/IgM Serology 0.36 LIV Igenex Western Blot IGM result Negative CDC/NYS result Negative 30kDa + 39kDa IND 41kDa ++ 83-93kDa IND Igenex Western Blot IGG result Negative CDC/NYS result Negative 34kDa IND 39kDa IND 41kDa ++ Which I'm now presuming to mean I...
  21. Mog

    VIRUSES??? Bacteria??? Fungus??? Oh MYYY!!! Protomyxoia anyone?

    A comprehensive viral panel, an Igenex Western Blot for Lyme and a comprehensive gut analysis were probably the most useful for me,. They did others for vitamins, mitochondrial function, allergies but in terms of actually getting info on what I've got and what I can start to work on, I think the...
  22. Mog

    VIRUSES??? Bacteria??? Fungus??? Oh MYYY!!! Protomyxoia anyone?

    I guess it depends what tests you've had done and where. For 20 years I've been told that all the tests done by the NHS were "fine" and "normal", and I was like you, thinking that how come I am feeling so bad if nothing is showing up in my tests? You know that the doctor is looking at these...
  23. Mog

    liposomal formula advice.. other alternatives to lecithin

    And have you noticed a difference from taking the banderol and samento liposomally?
  24. Mog

    liposomal formula advice.. other alternatives to lecithin

    You can get egg yolk lecithin capsules from natures Plus and Swanson. I don't know if that's any good for your purposes. Are you making your own liposomal banderol and samento?
  25. Mog

    Just found out I have active lyme disease. I am stunned. Help!

    Hi Brenda, What alternative treatments did you try?
  26. Mog

    lightning process/gupta training

    I really shouldn't be wasting my precious energy on this anymore but just found this on the FAQs of the LP website: "Smear Campaign - Due to our success in a field where not much helps we and our research colleagues have been under attack from a strange group of people who like to spread...
  27. Mog

    Just found out I have active lyme disease. I am stunned. Help!

    Yes, it certainly did get squished the second time around! And I do now know not to show any mercy to the horrible little blighters. But it does illustrate the tenacity of ticks - and the strength of their blood lust...
  28. Mog

    Just found out I have active lyme disease. I am stunned. Help!

    I feel the need to share my tick bite story, as I think it's very horrible :aghhh: I must have got it when out in the afternoon in undergrowth/heather, crawled up my trouser leg I suppose. I didn't find it until I went to bed and undressed. I'm afraid I was ignorant in those days and I think...
  29. Mog

    lightning process/gupta training

    Yes and unless LP has changed in the last 5 years since I did it, it takes absolutely no account of your past or current medical history. They just don't want to know. So even if you attend saying you want help with your CFS/ME, they have no idea what other medical conditions you may have as...