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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. Mackee

    Valacyclovir dosage

    Do you mean you are on 500 mg of Valtrex per day? (Above you wrote 500g, which I would hope was a typo!) Valtrex can work well for EBV, but you seem to be on a sub-therapeutic dose of it for this purpose. My specialist wanted me on 1g (1,000 mg) of Valtrex @ 3x/day for 6 mos. for my CEBV. I...
  2. Mackee

    "Swish & Spit" AVProtocol

    @Little Bluestem, sorry for the delay! I have not checked the forums in a little while. It's been difficult to stick with the swish & spit regimen, but the nurse did warn me about this. For me it is mainly because it takes a LOT more prep time & work than simply swallowing the pills. At 4x/a...
  3. Mackee

    Childhood illness & ME/CFS ?

    For many years--appx. from middle school through high school years--I would get Strep throat/Tonsillitis about 4-6 times a year. Occasionally it would get so bad so quickly that my parents would take me to the ER instead of waiting for our GP, etc...especially since I have been very prone to...
  4. Mackee

    Another oxymatrine supp??

    I am also interested to know how much Oxymatrine is in this. I just wrote the actual manufacturer an inquiry via e-mail; hopefully they will get back to me sometime today. Will let you know what I find out!
  5. Mackee

    Valacyclovir dosage

    Have you asked your doctor about prescribing Zantac to take with the AV? My specialist has me on Zantac, 300 mg, 2x/day as he says it helps in a few ways with antivirals. Recommended protocol = Take Zantac pill. Eat a full meal. Take Antiviral dose. The Zantac aids absorption of the AV in your...
  6. Mackee

    "Swish & Spit" AVProtocol

    I posted the message below as a response to another thread, fyi, but here goes: I could not tolerate the generic Valtrex @ 1 g, 3x/day. I am not generally intolerant to or particularly sensitive to meds as a rule; however, I am not a very large adult (5'6", appx. 114-120 lbs). Recently my EBV...
  7. Mackee

    Started Valtrex, then on to Naltrexone -- should I not get my hopes up?

    My specialist told me at least 6 months taking 1g. @ 3x/ day, up to 1 year.
  8. Mackee

    Valacyclovir dosage

    I could not tolerate the generic Valtrex @ 1 g, 3x/day. I am not generally intolerant to or particularly sensitive to meds as a rule; however, I am not a very large adult (5'6", appx. 114-120 lbs). My specialist took me down to 500 mg., 2x/day of Valtrex (Brand name this time) temporarily--for...
  9. Mackee

    Valacyclovir dosage

    A similar thing happened to me recently. I was to take Valtrex, 1 gram, 3 times a day. I also was recently diagnosed with CEBV, reactivated. I have some advice for you as I did not do well on the Valtrex alone. I will be writing in a bit later on regarding this & my new protocol. :)
  10. Mackee

    Tried Stimulants, Seen notable improvement

    And not as an uncommon occurrence, but YMMV of course...it just seems to be a big issue that I have heard crop up surrounding focalin.
  11. Mackee

    Tried Stimulants, Seen notable improvement

    I think stimulants work uniquely with each individual, I mean... Honestly, I have heard of Focalin having "zombie-like" effects upon certain people taking it
  12. Mackee

    Tried Stimulants, Seen notable improvement

    Similarly, save for my first AM dose, I usually always divide my doses of Adderall into halves and take a half ever few hours as this seems to work best for me. I experienced crashes on the XR version & also on Ritalin, but didn't have as good a response to Ritalin in general.
  13. Mackee

    CEBV, High Anxiety and Valcyte

    My specialist wants me to take 300 mg/Zantac Rx before eating then taking dose of Valtrex for CEBV. I am wondering if this is why...? I thought it might be in case of stomach irritation?
  14. Mackee

    Scared to re-try AV

    Hi all! I was initially prescribed Valtrex @ 1g., 3x/day for CEBV (currently reactivated). My pharmacy filled it with the generic equivalent by Mylan. I took 1 dose and felt as if my heart was beating much too hard, if that makes sense...not just fast but pounding in a way that made it...
  15. Mackee

    Please help me find a doctor in Florida or the East Coast.

    Dr. Dantini was also the first I thought of! :) Under his care, I have been rx'ed Valtrex. Very nice & knowledgeable with a great staff. Best of luck!!
  16. Mackee

    My visit to Dr Susan Levine NYC

    Thank-you! I was instructed by the specialist last week to take 300 mg/Zantac, 2x/day (before a meal) eat a full meal, and then take the new lower dose of (brand name) Valtrex. This is done to help minimize side effects, I was told... What's interesting is that honestly, I'm normally not very...
  17. Mackee

    My visit to Dr Susan Levine NYC

    I have read many accounts of patients having particular issues on the Mylan generic of Valtrex in particular. I also did not have a good experience with it, but it could have been due to the starting dosage being too high...I tend to be highly sensitive to generics & the different fillers they...