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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. joshi81

    Myers Cocktail

    heywood are you sure that the cause of it was the meyers cocktail? i mean what you had it is called rhabdomyolysis and it's tipical of the neuromuscular disorders/ myopathy.. if you also have the classical symptoms (as many of us here) like fatigue, maybe muscle soreness etc etc it would be wise...
  2. joshi81

    Muscle Weakness- is this typical of ME/CFS?

    i have it too muscle trembling on exertion.... have been tested for miopathy???
  3. joshi81

    Borrelia: Sexual transmission

    @Martial you are so kind and also very handsome if i can tell you (hope you're not homophobic ) and i really apreciate the answers you gave me here and in private. I understand your point of view but the doctor that should treat me will not recieve me until about one month so in the mean time...
  4. joshi81

    Borrelia: Sexual transmission

    @Daffodil hi you were positive to LTT? if yes hich were your scores? and did u run other test for lyme?
  5. joshi81

    Borrelia: Sexual transmission

    hi @Legolas interesting your post... which tests are positive for you? just the LTT or did u run also other tests ? were u positive to antibodies or westernblot? And DeMerlier put you on samento and banderol from the very start or you did course of Antibiotics too? And which are your symptoms...
  6. joshi81

    Borrelia: Sexual transmission

    Yes... that's was what i think too.. i now have this LTT test positive but i find it hard to link my main symptoms to borrelia because they are so atipical.... uff!!! Thanks Vale
  7. joshi81

    Borrelia: Sexual transmission

    argh... the new hiv... i was curious to ask you girls (and guys)... i often read that a tipical feature of lyme disease is that symptoms come and go and that they migrate through the body. I read this a lot of times and heard from a lot of doctors But chronic fatigue syndrome and fibromyalgia...
  8. joshi81

    Comment by 'joshi81' in 'Pre-Lyme Treatment'

    Vale you that went to KDM, i was talking to another girl yesterday about a point: do you know why KDM sometimes give abx and other times samento, banderol and company? is there a logic behind?
    • joshi81
    • Blog entry comment
  9. joshi81

    Comment by 'joshi81' in 'Pre-Lyme Treatment'

    oh i see and what is the dose? is it expensive?
    • joshi81
    • Blog entry comment
  10. joshi81

    Comment by 'joshi81' in 'Pre-Lyme Treatment'

    Hi Vale i'm glab you started a blog so we can follow your journey... can i ask you where did you buy the idroxo injection? i mean yoi go to the chemist and they prepare for you the predosed injection or how it work?
    • joshi81
    • Blog entry comment
  11. joshi81

    In Belgium to see Dr de Meirleir

    hi @atoska i'm from rome too i sent you a message. Anyway, i had this LTT test positive but today i recieved my CD57+ and .... they were very high 530!!! What does it mean in your opinion? i was expecting a low score... instead it's very very high.... so confused...
  12. joshi81

    In Belgium to see Dr de Meirleir

    Thanls valentijn!! @serg1942 you too are positive to lyme? you ran just the LTT test or also other? hat were the results on your LTT? Did you score your CD57? and what came back? i had CD57 tested few days ago maybe tomorrow i'll have the results and it would be another piece of the puzzle. Are...
  13. joshi81

    In Belgium to see Dr de Meirleir

    Hi @Valentijn ! i too had a LTT test at Infectolab and came back positive..a bit "more positive" than yours .. i attach the image in this message. The thing i did not understand is: you resulted positive just fo 1 out of 3 parameters on LTT test , are you sure that it is considered positive...
  14. joshi81

    Olympic Skier beat Lyme Disease

    Hi alexandru, wich testdi u run which came back postive?
  15. joshi81

    Olympic Skier beat Lyme Disease

    Paquito you can phone to his secretary to take an appointment 040 3992056 that's her number.
  16. joshi81

    Need help with methylation and detox SNP analysis

    Hi the thing do not understand is this, yoi told to have high ammonia which caused peripheral neuropathy... but... your paleo diet, full of meat, eggs and vegetables from the cabbage family (at least in amy yasko's opinion) is the worst you can do for high ammonia in particular because of your...
  17. joshi81

    Olympic Skier beat Lyme Disease

    Hi Ren i used it for 3 month, i didn't notce any effect maybe u should have done it longer but i had to do tests so i had to quit for a while
  18. joshi81

    Olympic Skier beat Lyme Disease

    Ps: which tests di u run and came back positive for you (if you are diagniosed woth lyme?
  19. joshi81

    Olympic Skier beat Lyme Disease

    Hi paquito maybe we just e-mailed time ago if you are the one who had Pyroluria .. nayway, i'm from Rome and the doctor i'm talking about is Dr Trevisan in Trieste
  20. joshi81

    Olympic Skier beat Lyme Disease

    Oh interesting.... i was concerned about them because they are a lab which is specialized in these infections and i was kind of afraid they overdiagnosed people...
  21. joshi81

    Olympic Skier beat Lyme Disease

    @Sushi but wait a minute, did u run the LTT test? if yes do you remember the values you got? there are 3 parameters tested in LTT test and all 3 should be lower than 2 mine were the first one 6 and the other ones both 5
  22. joshi81

    Olympic Skier beat Lyme Disease

    yes i know that a negative PCR does not mean that i am negative i do them just to see what comes out... i wrote to her anyway (to the girl of the movie) to ask which kind of test did she run which were positive and allow her to be diagnosed with lyme...hope in her answer
  23. joshi81

    Olympic Skier beat Lyme Disease

    i made it through a lab here in italy so the lab made everything, here we have an association which is CFS-friendly and relies on a lab which help us to make tests not available in italy. I want to double check too because i really do not know what reliability has the LTT test, i am planning to...
  24. joshi81

    Olympic Skier beat Lyme Disease

    i have get yesterday my LTT test from infectolab in germany and it says i am positive to lyme ...now i'm going to do other test to have a confirm but it seems that i should start this battle... and again let's start one more time to research and research and research becaus eit's not that easy...
  25. joshi81

    which symptoms methylation made disappear for you?

    i am also going gluten free but i don't see any changes...but i think the ones who tell that you should stay months gluten free eve 1 year si i try my best to stay as long as i can gluten free , just to try and see what happen but...guys it's a pain in the a... i am in italy..imagine that good...
  26. joshi81

    Here is my 23and me results mthylation and detox can you give advices?

    thanks @Helen the point is that ben lynch says that a singel mutation of 1298 is not a big deal...but i was in contact with jamie horn (you can find her on google) which follows the guidelines of dr rawling which got better after methylfolate and methylcobalamine supplementation and she was...
  27. joshi81

    Here is my 23and me results mthylation and detox can you give advices?

    Thanks Valentijn and helen. @Helen what do you mean by saying that "Adrenalin that doesn´t break down normally is also a common problem. Maybe you have some experience of that" What symptoms does it cause? At the moment my problems are pretty neuromuscular: twitching, widespread muscle...
  28. joshi81

    Royal Jelly Sublingual works well - A recommendation

    do you take capsules? not the fresh one?
  29. joshi81

    Here is my 23and me results mthylation and detox can you give advices?

    @caledonia @Critterina @Valentijn could you give an opinion? thanks :)
  30. joshi81

    which symptoms methylation made disappear for you?

    hi @ahmo also for you improved the muscular symptoms? cool! which brand of mb12 are you taking?