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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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Search results

  1. L

    Starting Famvir

    I noticed a difference within a short while of taking my first pill of famvir. I have most likely hit the plain and am leveling out at my current capacity. 8 grams is insane but then again Dr. Lerner wanted what 4-6 grams of valtrex a day. Either way cant afford that much. There's 0 chance...
  2. L

    Starting Famvir

    so, i'm still about the same as i was a few months back. started the switch between taking LDN in the morning to at night. Noticable. Something nice happens when i take the ldn at night after a full day, just dont know what it is. More pain during the day maybe. A little energy boost it...
  3. L

    Increasing Famvir Dose

    ^ This. I think heaps and m1she11e are the two on this forum with the most common symptoms and reactions to things as I do. Or perhaps they just explain things in a way that relates. m1sh11e, i just got back from florida for 10 days and forgot to call. Well, my kid caught pink eye and an...
  4. L

    Has anyone tried Nitric Oxide for symptom relief?

    Just wondering. Thanks
  5. L

    Starting Famvir

    I think the effect of LDN is slowing down or maybe I'm just getting used to it, but I haven't taken a day off it and don't plan to.
  6. L

    Starting Famvir

    I posted this about blood work done last year EBV VCA IgM 26 range 0-20 EBV-EA 24 range 0-20 HHV6 IgM <1:10 IgG Antibodies 3.39 High Positive >1.10 Don't know where my paperwork is but looks like they use a different sort of testing.
  7. L

    Starting Famvir

    CD 4 levels Absolute CD 4 Helper 1302 range 359-1519 % CD 4 Pos. Lymph. 43.4% range 30.8-58.5
  8. L

    Starting Famvir

    last time I had my ebv test done was Dr Lerner, so, over a year and a half ago. Before Valtrex or Famvir.
  9. L

    Starting Famvir

    Blood work came back. Strange results since I feel better since starting Famvir 500mgs 3x a day. EBV EBV Ab VCA, IgM 2.6 HIGH EBV Early Antigen Ab, IgG 1.2 HIGH EBV Av VCA, IgG 4.1 HIGH EBV Nuclear Antigen Ab, IgG >8.0 HIGH Immune Pannel Absolute CD 3 2469 HIGH but just barely above...
  10. L

    3 Things that Help the Most!!

    I pretty much started at 4.5 and took a little while to get used to the energy boost and less pain (I take mine in the morning). I really don't understand this whole "worsening of symptoms" herx theory. Nothing I have taken has ever made my CFS worse (well except beer ;)). Everyting I've...
  11. L

    Starting Famvir

    Funny blood lab story I go in and just happen to glance at the paper and it says HHV 1 and 2, not HHV6. . . My doctors writing clearly stated hhv6. Me: "It's supposed to be HHV6, not 1 and 2" Phlebotomist: "We don't have that" Me: "Huh?" Phlebotomist: "I don't think we can do that"...
  12. L

    sudafed/phenylephrine for OI/POTS anyone??

    Heaps, yes yes yes. For some reason it works. before I knew what was wrong with me I would constantly get sinus infections and colds and ate decongestants like candy. They really did help. I also would crash severly 3-4 hours after taking a dose.
  13. L

    Starting Famvir

    Had Dr Appt yesterday. Bloodwork ordered for the usual, ebv, hhv6 plus testosterone levels kidney liver adrenal cbc immune pannel ect. We will see. I told him it felt like theres just one more thing missing to be 100%. I think I'm at a consistant 75% right now. He mentioned it could be...
  14. L

    3 Things that Help the Most!!

    in no particular order famvir ldn klonopin
  15. L

    Starting Famvir

    Thought I would update. I don't often think of cfs anymore but, while I am not cured, I am greatly improved. Famvir Atenelol Flexiril Klonopin LDN Histame Klonopin in small amounts during the day is better than one larger dose once a day. Haven't had anything resembling a crash in months...
  16. L

    Antiretroviral Trial

    I only say give famvir a try because it seems you havent tried it before. I don't have a profound reason. It's less toxic than Valcyte and cheaper I think. Valtrex did virtually nothing for me at doses between 1-3 grams a day but famvir at 500mgs 3x a day has done something. Also, if you...
  17. L

    Starting Famvir

    Yeah, I've thought of those things. I haven't alternated too much. The effects are still pretty much the same. I'm not near 2mgs of klonopin per day (1.25mgs is max) and I refuse to go that high. Flexeril still does the trick although I can tell that it isn't quite as potent. My wife said...
  18. L

    Antiretroviral Trial

    Daff, Give Famvir a shot.
  19. L

    Starting Famvir

    Grape Funk Klonopin helps the overstimulation (sensitivity to sound light, ect). It takes the "wired" out of the "tired but wired" feeling I have had most nights. I'm no doctor but for some reason our central nervous system is just unable to deal with external stimulus. Flexeril...
  20. L

    Starting Famvir

    Its been about a month since I have updated, well, exactly a month. Still on Famvir 500mgs 3x/day and the improvements come at a snails pace but in looking back they are there. Klonopin and Flexeril are helping symptoms greatly. I have lost 20 pounds, down from 227 to 207 since I'm simply...
  21. L

    Sugar Could Lead to Cheap, Effective Treatments for Chronic Bacterial Infections

    You know I was just thinking about this. It came to me when I was fishing actually. I wondered if there was a way to bait viruses and bacteria that are hiding out into the open to get them. This is fascinating.
  22. L

    good doctor ?

    I called the number. His office is in Melbourne, FL which isn't too far from Orlando.
  23. L

    The HORRORS of Klonopin addiction

    Well said August. And if it is true that overstimulation is rapid firing of neurons in the brain, or whatever, that can't be good. Those extended periods of severe anxiety are ruthless and if I'm in one of those states, I'm essentially useless. Look, I wish I didn't have to take ANY...
  24. L

    The HORRORS of Klonopin addiction

    Nielk - Live and Let Die is one of my favorite Paul Mccartney songs. Taking .12-.25 of Klonopin in the morning works wonders for the day. It helps prevent overstimulation AND I don't eat as much. It takes the edge off the generalized anxiety so that I can better focus on other symptom...
  25. L

    Evidence for a Heritable Predisposition to Chronic Fatigue Syndrome

    I'm 100% sure there is a heritable predisposition. Two of my fathers cousins have chronic Lyme, one of their kids caught mono twice, my sister caught mono once and I have cfs.
  26. L

    Multivitamin question

    Read the Fredd post, don't understand it at all. This vitamin/minerals/supplement stuff is a foreign language to me.
  27. L

    Multivitamin question

    I have never had anything in my gut checked. Where should I go, what tests should I run? One of the symptoms I've never really had throughout CFS is gut problems. Rich - I have no idea what disbiosis is. I can tell the difference between higher and lower quality of vitamins. Right...
  28. L

    Multivitamin question

    I feel better when I don't take a multivitamin. Why?
  29. L

    Starting Famvir

    Little update. Two interesting things about my sleep have changed since adding Klonopin/Flexirel to the regiment. First, I have begun to dream again, like every night. (does this mean I'm getting to a deeper sleep?). I haven't had a dream in over 10 years. They are normal dreams too...
  30. L

    90% cured from bed bound with Histrelief / Histame / Daosin

    I ordered some histame yesterday off amazon $25 shipped, seemed reasonable. The only food I know I am sensitive to is pizza (I'm part Sicilian so you can imagine my sadness). I've all but given up on eating it. :(