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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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Search results

  1. M

    My experience with Valtrex

    Hi All, Sorry, it looks like I haven't updated in over 5 months :S. Thanks to heapsreal for sending me a reminder! :) 16 Months Overall I've been really good, but I had a really bad patch from early Feb to mid-April where I had the same thing as last Winter, a head cold that penetrated...
  2. M

    My experience with Valtrex

    Hi all, Sorry, I forgot to do my 12 month update, but I'm still about the same as at 11 months, no real change. Hi lartista, I truly hope that Valtrex can help you and others. From what Dr Lerner says, it's likely to help people with EBV infection, but not CMV, HHV-6. My current...
  3. M

    My experience with Valtrex

    Hi sleepwalking, I'm so sorry that Valtrex didn't work for you, and to hear about all of your terrible misfortune. Thank you for your contribution, though. It's important that we share as much information as we can. Mike.
  4. M

    My experience with Valtrex

    Hi heapsreal, Yeah, I try and keep the updates monthly to keep it simple. Here's the latest one: 11 Months I actually still feel like I’m improving. I guess the only specific difference is that this month I feel more resilient to relapses. I haven’t had one in quite a while despite doing...
  5. M

    My experience with Valtrex

    10 Months Still seem to be improving. I’ve been able to go for longer slow-pace walks without paying for it the next day, and while I’m still clearly prone to relapses/crashes, I’m able to recover from them in 2-3 mostly couch/bed days, rather than 2-7 full bed days.
  6. M

    My experience with Valtrex

    I'm so sorry to hear all that Vojta :(. Maybe it's worth trying to find a different doctor who will prescribe Valtrex for you. Probably a hassle, but could potentially pay off. Do you know of any doctors who specialise in CFS in the Czech Republic?
  7. M

    My experience with Valtrex

    9 Months Nothing much to report, about the same as at 8 months. Hopefully this is not the beginning of the dreaded plateau! :)
  8. M

    My experience with Valtrex

    Hi heapsreal, My original plan was 12 months, but I think the 'responders' in one of Dr Lerner's latest publications were on them for an average of 2.5 years. I don't know though. I'm expecting my improvement will probably plateau at some point (bit of a sad thought, although I'm one of...
  9. M

    My experience with Valtrex

    8 Months Still doing well. I’ve been avoiding heavier cardio exercise, but have been able to go for a light ~15 minute walk everyday with really no issues at all. I’ve also been doing light weights without too much trouble (a little bit run down the next day still). One brand new development...
  10. M

    My experience with Valtrex

    Hi Nico's Dad, I've used bigmountaindrugs dot com, and I'm not sure how much it means, but I chose it because it was one that pharmacychecker.com gave it's approval to. I've continued to see improvement after switching from brand name Valtrex to generic from bigmountaindrugs, so I feel assured...
  11. M

    work advice

    I absolutely agree with going easy, and I would strongly suggest aiming for (many?) less hours than you think you can handle. So even if you feel a bit silly and unproductive on your good weeks, you'll still be able to handle the job on your bad weeks. I've had 2 desk jobs at ~20 hours a week...
  12. M

    A review of EVB and CFS by Dr. A Martin Lerner

    Thanks so much for that inside info anncavan! I'd heard before that Dr Lerner used to be sick with CFS, but after years of Valtrex, is now not considered sick, but it's interesting to hear that his definition of sick includes 7 on his scale.
  13. M

    starting cycloferron

    Sounds great! Hopefully the improvement sustains and continues! All the best. Mike.
  14. M

    My experience with Valtrex

    Wow, thanks for the link! I missed this one. It's interesting that he said "Therefore, EBV is causally involved in 81% of cases of CFS" in the first paragraph. It seems likely to me that XMRV/MLVs cause immune deficiencies and/or other problems, but that you don't actually have CFS until you...
  15. M

    My experience with Valtrex

    Thanks for your comments glen (& heapsreal), I've been really lucky with headaches, I don't really get them (with Valtrex or CFS) unless I've been particularly physical and have sore, recovering muscles too. I'm so sorry that you couldn't tolerate Valtrex, that sounds awful. I'm not sure that...
  16. M

    My experience with Valtrex

    7 Months Still going great. I’ve maintained the improvement from 6 months, and improved again! Up until now the improvement has allowed me to do more low energy activities through-out the day/week (eg being on the computer), but I think I’m starting to get to a point where my ability to do...
  17. M

    starting cycloferron

    Yeah, still doing very well and seem to be slowly but surely on the improve. Might take a while for cycloferron to work, make sure to keep us posted. With such a lack of real answers I feel we need to share all of our experiences with treatments.
  18. M

    starting cycloferron

    Awesome, good luck! I hope it works! :) Keep us all posted!
  19. M

    My experience with Valtrex

    I take 1g, 4 times a day (so 4g/day). Thanks for reminding me, that was the other thing I meant to ask grant107 and muffin. @Jenny. When I say I've tested positive for EBV, I mean just the antibodies test, not acute infection. I don't know which is which with IgM or IgG. In Australia we don't...
  20. M

    Comment by 'mikipe2' in 'Exercising Discipline'

    Thanks Kelvin, good to hear you're doing so much better!
    • mikipe2
    • Blog entry comment
  21. M

    When will we have the first useful results/summaries?

    I haven't read all of the posts, so I'm sorry if I'm repeating someone else. The hypothesis that I subscribe to at the moment is that XMRV/MLVs don't cause all of the symptoms of CFS, they attack the immune system in such a way that Herpes family viruses (particularly Epstein Barr Virus...
  22. M

    My experience with Valtrex

    Hi muffin and grant107, Thanks for sharing your experiences! I've actually gone ahead and copied your updates to Post 1 so that people can follow your progress more easily, I hope that's ok. Also, are you happy to tell us which of EBV/CMV/HHV6 you've tested positive for? I only ask because Dr...
  23. M

    Dr. Alter Paper embargo ends today at 3:00pm, press conference today

    The abstract and paper (subscription required) is here. There was a link to in the Washington Post story.
  24. M

    My experience with Valtrex

    I haven't actually seen him in a while, he was away last appointment so I saw someone else in the same clinic. Last time I saw him, and told him how much better my brain fog (in particular) was, he just typed it in the computer and didn't really say much. I'm not too worried what he thinks...
  25. M

    My experience with Valtrex

    I'm the same, I find weights much more enjoyable, and more acheivable. I'm sure a number of factors come into play, 1) Using the anaerobic (short burst) energy system is much more achievable in people with CFS (aerobic energy system is broken apparantly) 2) You can take regular breaks while...
  26. M

    My experience with Valtrex

    Sorry for the delay, heapsreal. I'll make sure to give monthly updates (around the 26th-ish), but I'll probably just leave it at that in general. But anyway, here's my next entry :). (Almost) 6 Months FINALLY!!! After 2.5 months of on and off relapses, it seems that I’ve managed to...
  27. M

    My experience with Valtrex

    I've been taking Vitamin D, and only recently been taking zinc, vit c etc. I'm not sure what LDN is :). Normally I've been able to get rid of colds/infections within around 48 hours or so by just going to bed, otherwise it would never last for more than 4-5 days. This one has been a...
  28. M

    My experience with Valtrex

    Hi heapsreal, It's definitely been the infection that's caused the relapses. I've never had a winter like this, the infection just stays and stays no matter how much bed rest I get. It's been really depressing after feeling so good and having such hope. I ended up getting astralagus and a vit...
  29. M

    My experience with Valtrex

    5 Months This has been a pretty bad (Australian) winter. I picked up an infection earlier, which lasted 3 weeks, and caused a CFS relapse. Then after 3 weeks of feeling great, the infection seemed to relapse, and cause another 2.5 week CFS relapse! Very frustrating. Overall, when I feel good...
  30. M

    My experience with Valtrex

    Yeah, Valtrex is the same kind of thing. It's around AU$220 or so for 42x 500mg (~$9.50 per 1000mg) although I'm paying less wholesale. Or I just paid AU$357 for 180x 1000mg (~$1.98 per 1000mg). Looking at it like that, GSK must have an enormous mark-up. I checked the onilne pharmacy and it...