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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. OnlyInDreams

    Prevymis (Letermovir) for CMV - FDA approved!

    Well you can't rule out the possibility that Letermovir also has immunomodulatory properties. I'm not sure if this has been studied or not. But you're right, there's only one way to find out for sure. The trouble with using this supplement is that the positive effects cannot be sustained at...
  2. OnlyInDreams

    Prevymis (Letermovir) for CMV - FDA approved!

    It was much quicker the second time around. The first time I stopped, I waited about 9 months before I resumed Valcyte. It only took a few months to get back to full health instead of 13. 2nd time was even faster because I was off Valcyte for just a few months. Yes, and tried both many...
  3. OnlyInDreams

    Prevymis (Letermovir) for CMV - FDA approved!

    Hip: Yes, I have to keep taking Valcyte. I tried stopping a couple times, with symptoms returning withing a few months. After the 2nd attempt, I said never again. As for gains, I would probably say I went from Moderate to Remission. First signs of improvement was at about 5 months, and...
  4. OnlyInDreams

    Prevymis (Letermovir) for CMV - FDA approved!

    I know that it's only CMV causing my CFS/ME because A) Dr Lerner said so and B) I recovered on Valcyte alone. And Valcyte alone is the only drug that has ever worked for me. I'm switching to Letermovir because it's non-toxic. That's like 80% of the reason why I want to switch. I'm doing OK...
  5. OnlyInDreams

    Prevymis (Letermovir) for CMV - FDA approved!

    Correct, same thing applies to herpesviruses. And this can be measured based on the high level of IgG antibodies for the virus. I've been tested for everything under the sun. I saw Dr. Lerner 3 times in his office back in 2011 & 2012. God rest his soul. Selfless man, worked his ass off...
  6. OnlyInDreams

    Prevymis (Letermovir) for CMV - FDA approved!

    Ok, so there would be an immune response. But with the cessation of the production of infectious viral particles, I would think the immune response would be less severe. So you would still have ME/CFS symptoms, just greatly reduced. Reduced further than what Valcyte is able to accomplish...
  7. OnlyInDreams

    Prevymis (Letermovir) for CMV - FDA approved!

    But without the viral particles, why would the immune system need to respond? There's no threat because the virons aren't being produced and the existing ones will eventually die off. Would the problems that the non-structural proteins cause translate into CFS/ME symptoms? I doubt that they...
  8. OnlyInDreams

    Prevymis (Letermovir) for CMV - FDA approved!

    The hundreds of copies of its genome is the viral DNA. We know that Letermovir does not stop DNA synthesis. But it does prevent the production of infectious viral particles. And if there's no production of infectious viral particles, then there's no disease. And viral proteins are the...
  9. OnlyInDreams

    Prevymis (Letermovir) for CMV - FDA approved!

    From your link to the abortive infection thread, you wrote: "In abortive infections, although the virus cannot reproduce itself, it nevertheless makes some viral proteins inside the cell, and these may lead to cellular dysfunction.The virus may remain inside the cell as a chronic abortive...
  10. OnlyInDreams

    Prevymis (Letermovir) for CMV - FDA approved!

    The key difference is that Letermovir prevents CMV replication as well as production of viral particles within the infected cell. So you wouldn't have abortive cells floating around. Where as with Valcyte, it only prevents replication (you still have the abortive cell, it just can't replicate...
  11. OnlyInDreams

    Prevymis (Letermovir) for CMV - FDA approved!

    Exactly. Letermovir disrupts the production and packaging of viral particles downstream from DNA synthesis. So DNA synthesis occurs, but without the output of infectious virions. So if Dr Lerner's theory is true, then theoretically this would eliminate (or at least reduce) the number of...
  12. OnlyInDreams

    Prevymis (Letermovir) for CMV - FDA approved!

    Also Hip, I found this quote from the link you posted: "Organ distribution The distribution of letermovir may be influenced by the expression of OATPs as well as P-gp and BCRP as it is a substrate to these transporters. In albino rats, highest distribution was to the GI tract, bile ducts and...
  13. OnlyInDreams

    Prevymis (Letermovir) for CMV - FDA approved!

    Great point. Perhaps the strategy would be to take both Valcyte & Letermovir for a while and then slowly taper off the valcyte.
  14. OnlyInDreams

    Prevymis (Letermovir) for CMV - FDA approved!

    Sorry I miscalculated the cost. That was the cost for 1 package a day. Should have been for 1 package per month. Actual cost is about $14,300 for 90 day supply without insurance.
  15. OnlyInDreams

    Prevymis (Letermovir) for CMV - FDA approved!

    I don't think folks in the PR community are aware of this because I'm not seeing any threads discussing it (which really surprises me). But this drug was FDA approved in November 2017 & made available for purchase December 2017. I just found out a few days ago. I just wanted to make everyone...
  16. OnlyInDreams

    My Valcyte pilgrimage

    1 Tablespoon every morning in a glass of milk.
  17. OnlyInDreams

    My Valcyte pilgrimage

    Yeah chest pain is always a bit scary. 50mg is a very small amount. But if you're body is having trouble tolerating the Valcyte, then it might be best to start with a small dose like that. When I started Valcyte, I had flu like symptoms such as aches & pains, and sweating. I may have even...
  18. OnlyInDreams

    My Valcyte pilgrimage

    My heart feels better, but every now and then I will feel mild pain/tightness in my chest. I've reduced my Valcyte dose to 450mg/day due to elevated ALT. Did you mean 50mg instead of 50ml? Well, the standard does is 900mg 1x/day. But you can split the daily dose if you prefer. I felt...
  19. OnlyInDreams

    My Valcyte pilgrimage

    Yes, I'm doing ok with Valcyte. Valcyte is keeping me afloat. Far from perfect, but definitely manageable & tolerable. I'm also taking lots of supplements like Lauricidin, MCT Oil, Milk Thistle and Bile Acid. All of these things have contributed greatly to my improved health. I'm still...
  20. OnlyInDreams

    My Valcyte pilgrimage

    @heapsreal I'm no longer taking the TCM combo. It eventually lost its effectiveness. Occasionally, I will drink the skullcap but that's about it. I'm back on Valcyte and will remain on it for the foreseeable future.
  21. OnlyInDreams

    Valcyte: does it work because of its antiviral or immunomodulatory properties (or both)?

    I don't think there will ever be a perfect magic bullet for ME/CFS. Because all forms of the herpes virus are able to hide & remain latent, evading the immune system. It will always try to act on opportunities to rear its ugly head when we're the most vulnerable (stress, weakened immune...
  22. OnlyInDreams

    Valcyte: does it work because of its antiviral or immunomodulatory properties (or both)?

    I have no idea what the cost will be. I know that Chimerix has a 30 year patent on the drug. So in terms of pricing, Chimerix is totally in control. Hopefully they won't be too greedy. As for mechanism of action, they are quite similar in that they both preferentially inhibit viral DNA...
  23. OnlyInDreams

    Valcyte: does it work because of its antiviral or immunomodulatory properties (or both)?

    My issue with this comment is the part where you said Valcyte will have to be taken in cycles "for the rest of your life". There is a worthy alternative to Valcyte, it just isn't available yet. Brincidofovir has been given "Fast track" designation and is currently enrolling folks for the Phase...
  24. OnlyInDreams

    valcyte

    @nelle - You're welcome. Why do you have that impression? I am a former patient of Dr. Lerner. He said that my only treatment option was Valcyte. I have no idea about ampligen. As for CFS doctors, they are a rare breed for sure. Try finding an open-minded local doctor that isn't...
  25. OnlyInDreams

    valcyte

    Brincidofovir (CMX001) is an experimental antiviral drug being developed by Chimerix of Durham, NC, for the treatment of cytomegalovirus, adenovirus, smallpox, and ebolavirus infections.[1] Brincidofovir is a prodrug of cidofovir.[2] Conjugated to a lipid, the compound is designed to release...
  26. OnlyInDreams

    CMX001

    This very well could be the magic drug that [most of us] have been waiting for. A spokesman for the Drug manufacturer said their goal is to make it commercially available by 2016. Only 2 more years!
  27. OnlyInDreams

    My Valcyte pilgrimage

    OK so I've decided to revive my old Valcyte thread today. The thing is, I'm no longer taking Valcyte so I will probably start a new thread soon. At any rate, I have a TON of updates. Lots of changes since my last post on here. I have been Valcyte-free since Christmas Day 2013. I have...
  28. OnlyInDreams

    My Valcyte pilgrimage

    What kinds of sleep meds are you taking? Your improved sleep could have been from a combination of the Valcyte and the sleep meds. I take Amitriptyline every night, helps with sleep tremendously. It is also a great anti-anxiety med.
  29. OnlyInDreams

    My Valcyte pilgrimage

    Get as much sleep as possible every night. Try not to cut corners in regards to sleep if you can avoid it. And dress warmly! Valcyte suppress the immune system. So you have to be especially careful during the cold months of the year. For LDN, you can just purchase the standard 50mg tablets...
  30. OnlyInDreams

    My Valcyte pilgrimage

    Vamah, have you not made any progress at all with Valcyte? Which virus is active for you? Here are a few snipets from an article on LDN for CFS: "LDN is a ‘feel-good’ drug and some studies suggest ‘feel-good’ agents such as endorphins are low in pain disorders like fibromygalgia and...