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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. Grape Funk

    Doctors and Med students on forum

    I believe we had a few med students on here and rich van k (RIP) who used to help out with explaining. Are there any on here who get on daily? Need to talk ASAP. Very important. I'll be on tonight Thank you
  2. Grape Funk

    Fighting For a Stake! FDA Cold Shoulder = More Action On Treatments For ME/CFS

    how many letters did we send in last time around and from how many different email addresses? I am curious to see how many people are sending emails and participating. Main Organizers should know as we attached the me action email address.
  3. Grape Funk

    most reputable/ cost effective places for Inosine

    thanks. Has anyone tried immunovir as well as inosine and noticed a difference in the two products? Hixxy is it cheaper to buy it yourself and then cap it? Do you add anything else to the inosine?
  4. Grape Funk

    most reputable/ cost effective places for Inosine

    Which are the brands to look for that have good credibility and where can i buy them for cheap? Ie. Are all IHerb brands worth buying? Also: What is the current dosage?
  5. Grape Funk

    Need Help for Disability/Social Security

    Cool. You all helped. I also checked out the SS website for more info. Before I apply I've got one more round of questions. Should i contact a lawyer before filling out the form online, during the process, or after? I notice a lawyer that specifically deals with me/cfs is 1 hour 20 minutes...
  6. Grape Funk

    Need Help for Disability/Social Security

    I am new to this area of expertise so I thought some you could help. Here's the deal: I am 25 years old, male, USA citizen, have had M.E. for about 5 years now with a functioning level of about 3. I have not been in the workforce (other than summer jobs when home from school) as ME destroyed...
  7. Grape Funk

    Which Anti-Viral?- choice of 4

    Hey john, what worked best for you regarding the parvo b 19 virus ?
  8. Grape Funk

    Increasing Famvir Dose

    Heapo / Mary B Do you ever take inosine as a substitute to cycloferon ? Iv'e heard it's not nearly as expensive and although a supplement, can have potent properties similar to immunovir. I believe KdeM stated this.
  9. Grape Funk

    Increasing Famvir Dose

    heaps Do you believe your recent sinus problems made your symptoms worse, or were the sinuses just a pain in the butt to have? I've got the same constant problem and antibiotics clear them for a couple days then they run wild again. I think it happens simply because our immune system is off...
  10. Grape Funk

    Need help with getting in touch with a Lobbyist

    Ask the forum member "RoyS". Under his name he says he was a former cfs lobbyist.
  11. Grape Funk

    Valcyte (plus) Update

    Give your insurance company a call. With average insurance, mine is 340(brand name is 300 co pay first month) the first time round (no matter dosage of 450mg or 1800mg daily) and $40 monthly subsequently. Might have a problem with insurance after 3 months, which is the time allotted to CMV...
  12. Grape Funk

    Valcyte + Famvir Success with only mildly elevated titers

    Hey floyd, where did you see the HSV infection of the nervous system? I am also thinking about trying valcyte in a couple of months, and i do not have high hhv6 titers 1:80(only tested once when not in relapse). Though i do want to say something about the tests. I have been negative to...
  13. Grape Funk

    Anyone have prostatitis and ME?

    http://forums.phoenixrising.me/showthread.php?9357-hiv-medication-and-non-bacteriological-prostatitis&highlight=prostatitis
  14. Grape Funk

    cfs/me symptoms getting worse or cold/flu???

    Wave --- I just took the store bought vitamin capsules. I have not even heard of KPU until now, i will read about it soon. I have heard about the Apple cider vinegar and sauerkraut, but will add in the betaine hcl. I also have problems of acid reflux in the mornings, and usually spit up...
  15. Grape Funk

    Anyone have prostatitis and ME?

    I am also about the age of some of you here, 24, got ME around the same time a prostate/yeast like infection occurred (also had a girlfriend at the time). I have always wondered if prostatitis was a major player. I have to add though, now 4 years into the disease, only get the symptoms of...
  16. Grape Funk

    cfs/me symptoms getting worse or cold/flu???

    No i have not. What would i try to boost the acidity? But i also would have to wonder why Zinc is the only culprit and not some of the stronger biodegradable drugs.
  17. Grape Funk

    cfs/me symptoms getting worse or cold/flu???

    That zinc study is funny, the only medication/vitamin that makes me sick to my stomach is zinc, anything else i can handle. I've got chronic sinus problems as well.
  18. Grape Funk

    Early Antigen EBV

    Definitely give it a try. I am on generic of Valtrex right now(3g day), and have been for 4 months almost. No results yet, but im waiting out the 7 months that is recommended by the doctors with experience with AVs. I did not test positive ever to EA igG, but i did to VCA (out of range) and...
  19. Grape Funk

    Lower Dose Ampligen

    What type/ who are the patients that react to Ampligen with the best results? There has got to be some type of pattern after all this time.
  20. Grape Funk

    Osler's Web by Hillary Johnson

    There is not too much from international viewpoints, although some from Australia, NZ i believe and Canada(plus maybe a couple others). It does not get into the dirty pigs and head honchos from England if that is what you are asking about. I was wondering myself if the 2nd edition of the book...
  21. Grape Funk

    Gulf War Syndrome, 8 out of 11 victims tested have incredibly rare pituitary disease

    Silver-- The first thing my doctor said to me when i got my blood panel back was extremely low testosterone for my age(i'm a male). Is there anything you do for your low testosterone that helps? Carrigon-- The first time in my life i have ever used aspartame on a regular/daily basis was when...
  22. Grape Funk

    Increasing Famvir Dose

    hey heaps im not so sure about 6000mg number. Here in the states i can't even get more than 1500mg a day prescription wise. I even saw Annecavan here on the forums post to her blog that she was taking 4g valtrex a day, had kidney or liver problems, and lerner put her on 1500mg famvir.
  23. Grape Funk

    Starting Famvir

    What do the flexeril and klonopin do for you in terms of specific symptom relief (besides the label briefing)? And are they better used together ?
  24. Grape Funk

    Starting Famvir

    The drug peterson is using in trial is basically an oral form of cidofovir, plus additional benefits. Its called chimerix. http://www.clinicaltrials.gov/ct2/show/study/NCT01143181?term=CMX001&rank=3 How old was the girl you are referring to KC, and how long/bad was she sick? I have heard...
  25. Grape Funk

    1995 what they knew about virus/retrovirus

    I havent read the link yet, but am about 500/700 pgs deep in old Oslers web. There is no doubt to me this is a type of virus that affects B cells (alex i know you say something like this too). Whether retrovirus or not, there are too many researchers coming up with a novel type of microbe...
  26. Grape Funk

    Starting Famvir

    Are you sure about that? Im taking valacyclovir from india right now. And if so, how do we change the prescription so it is manufactured from a different country
  27. Grape Funk

    slow or fast replicating virus/ ebv, cmv, hhv6

    Now that i am taking 3g Valtrex generic a day, i wonder about the loads as well. I am currently taking 1g at morning , afternoon, and then right before i go to bed. I might switch it up to 2 in the morning and 1 mid afternoon. The viruses that are a problem so far are opposites in replicating...
  28. Grape Funk

    Ribarivin for ME/CFS

    Navid what did u test positive for? I'm posting all my results from today, tomorrow on the forums. Btw Undcvr, are you hhv6 positive, and what were your titers like? i'm assuming Focus Labs
  29. Grape Funk

    want to give up

    ABC fyi, in many cases Valcyte has caused exacerbation of symptoms before any relief, especially in the more severe cases. You might have already known that, but i'd wait it out for 3 months at least. One love.
  30. Grape Funk

    What specific tests should I ask my doctor to run?

    I just got my blood work done at Quest Labs on monday. I drew Herpes viruses 1-8 not including 7 as they did not have a test. I forget all of them right now, but getting the results Friday morning so i'll post what i got specifically. It also depends on insurance as to whether they include...