• Welcome to Phoenix Rising!

    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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Search results

  1. A

    NY Chiropractor, Kinesiologist, Homeopathist, Nutritionist, HEALER

    I wanted to pass along one of the most valuable referrals have come across in my cfs me journey. Dr. Steven Silverman is an expert in treating immune dysfunction, chronic lymes and many other neuroimmune disorders. He uses homeopathy based on kinesiology muscle testing. His treatment is unique...
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    Energy Healer

    I am looking for someone who does energy work. Similiar to MBE shift a woman who helped a very sick CFS patient. Michael Danzin or something? I live on the east coast. I can travel but not to far. Preferably NY NJ etc thanks
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    NY/NJ NATUROPATH?????

    hi can anyone recommend a good naturopath or holistic MD whos gets CFS in the NY or NJ area? Thanks
  4. A

    XMRV positive

    i read that the dr from belgium is finding xmrv in his sickest patients. is this true? as far as i knew when i spoke to vipdx they said they are finding it in healthy controls too
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    XMRV positive

    IS THERE ANYONE OUT THERE WHO IS XMRV POSITIVE AND NOT DOING ANY TREATMENT?
  6. A

    XMRV positive and no Treatment

    Does anyone else have all the infections I have? Hhv ebv parvo mycoplasma chlamydia pnuemonia. Why do I feel like I have more than others?
  7. A

    Just got the NEWS, Devastated

    Thank you so much. Crying at the responses. But if it isn't linked to CFS and it exists it means I have CFS and now a retrovirus too? Also do a lot of people have it on this forum? I get the feeling not a lot of people do?
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    XMRV positive and no Treatment

    Do people out there have XMRV but are not treating it at the moment? IF we have it does it mean we need to treat it?
  9. A

    Just got the NEWS, Devastated

    Just found out I am XMRV positive by serology at VIP. I am devastated and hopeless. Like no chance of the life I hoped for now? Does this mean my dreams of a family and a life are shattered? Is this a death sentence. What about the ones who are chemically sensitive and cannot take AIDS drugs. I...
  10. A

    Mycoplasma/milion dollar question!

    I am taking a break from the doxy after a month. It is just to hard on me. I feel really bad and hopeless about it but I dont feel I have a choice. Is it possible any of these infections have gone after one month tx? I know it takes much longer but I wonder if we are all different?
  11. A

    want to give up

    I am so sick. All of my symptoms are back to the point of non function. Severe nausea, can barely move my body. Everytime I try to close my eyes I am jolted awake by a dropping adrenaline feeling. Feels just like I did in the beginning but worse. Hysteria, muscle twitching. Feels like the...
  12. A

    Do you get fevers? Ever?

    i get fevers constantly. daily. low grade. besides motrin is there anything to do about this. it is very bothersome to me.
  13. A

    Started Valcyte

    hi thanks nielk! yes i am doing well. so far so good! i am up to the recommended dose and my bloodwork looks beautiful. it seems i am handling the drug well. so far only side effects are the anxiety/agitation and some mild nausea. i am pleased so far with valcyte. sometimes i think the fear...
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    Started Valcyte

    the standard of treatment for mycoplasma is antibiotics lol. that is the proven and effective treatment. seew dr garth nicholsons work. his treatment protocol works and is what my doctor uses. i read somewhere that the mycoplasma does have some strange characteristics but that antibiotics work...
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    Started Valcyte

    whats with the anxiety? is there withdrawal or tolerance issues with valcyte? uncomfortable!
  16. A

    Mycoplasma/milion dollar question!

    wow, interesting. may i ask which doctors are treating both of you for this. i dont think a picc line is for me as i am prone to infection etc. however, i wouldnt be opposed to iv antibiotic weekly. i have good veins! where would ui get this though?how did you know which ones to take? also how...
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    Mycoplasma/milion dollar question!

    actually interestingly enough no. the burning is still there. however, i do believe it takes time with something as persistent as this it may get worse before better thanks
  18. A

    Mycoplasma/milion dollar question!

    i started the doxycycline a week ago and so far knock on wood i have done very well. no stomach discomfort. i empty the capsule into a little apples sauce and make sure i have eaten something. besides that no ill effects. thanks for all the support and advice!
  19. A

    Started Valcyte

    Just a quick update. I am doing well and will be increasing my valcyte dose tomorrow. My bloodwork came back totally in the normal ranges so far so that is a good start. I feel the side effects so far are anxiety/agitation, and insomnia (worsened). So I am hanging in there with hopes these get...
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    Started Valcyte

    I actually started the antibiotic today for the mycoplasma. Well see how that goes. Fingers crossed. I am starting low and building up with the valcyte bc i am so damn sensitive. so far so good but just alot of anxiety/agitation from it. Is there anything to do for that? I cant take benzos so I...
  21. A

    Mycoplasma/milion dollar question!

    Hi I've had this for a few months. Although its getting worse. I don't think I have much time to waste. However, being that I have so many issues going on the dr started me on valcyte for most pressing issue HHV 6. But this issue is getting worse with burning and breathing. So as of tonight I...
  22. A

    Mycoplasma/milion dollar question!

    hi my chest x ray was all clear. yes a little scary to hear your story but i thank you so much for sharing. i feel like i can get the oxegyn in it just burns a bit. not constant. was yours constant? i would like to pursue antibiotic treatment but i need to bypass my stomach somehow. thats why i...
  23. A

    Mycoplasma/milion dollar question!

    wow. what a story. what your symptoms that led you to be hospitalized? why did they think you wouldnt make it? scary! i feel burning and constant numbness in my throat. very uncomfortable but my chest x ray was all clear. they were going to try doxycycline with me.
  24. A

    Mycoplasma/milion dollar question!

    HI OK this is really the million dollar question and if someone can help me out i just may have to reward you lol. I have a mycoplasma infection as my bloodwork reveals (along with a load of other fun stuff). I am dying to treat this infection but I am unable to tolerate even one antibiotic...
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    Started Valcyte

    That's too funny nielk Dr. Enlander is my doc and told mE the same thing too!!! I appreciate your support. Did you try the valycyte w Enlander? And how often do you see him? I will be at his office Tuesday!
  26. A

    Started Valcyte

    yes. starting with this and to be honest i felt like hell today. i will have bloods checked first before i go up. However, i def feel that this dose is having an effect on me i had a fever and was very sick today from it. tonight is a little better. dosage is very individual. I had a test done...
  27. A

    Started Valcyte

    I think its hard to say how we may react or what to expect being that each of us are so very different. I appreciate all the feedback, I really do. I have read many reports and yes I know symptoms can get worse before better but for some they get better and stay better. Sickofcfs just wondering...
  28. A

    Started Valcyte

    hi yes my titers were sky high like scary high 1200!! but when i spoke to the hhv 6 foundation they said this was not the highest manhy patients have in the millions! i also have elevated ebv and i have mycoplasma infection. this was the first priority to get under control (hhv6) when i am done...
  29. A

    Started Valcyte

    HI today is day three. Not sure if anyone cares lol. Just some tachycardia and shakiness it passes in a few hours. The half life is short on this drug so side effects lessen quickly as it is in and out of the system. Some nausea and stomach uncomfortably but hard to say thats the valcyte as that...
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    Started Valcyte

    Hi. Took the second pill this morning. So far so good. Anybody else who did well with valcyte out there?