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One month into Valtrex, starting out on Valcyte

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Matt_C, Nov 9, 2014.

  1. Matt_C

    Matt_C Senior Member

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    This is my first post and i'll be keeping a record of my progress on antivirals here.

    I'll start by giving a little history. I first began noticing something wasn't right when I was about 19 years old. It started out as insomnia and some other subtle neurological problems but for the most part, nothing was really wrong. I just had trouble getting to sleep. Around age 23 I became stricken with a severe bout of some kind of gastro illness where I was bloating severely and started having trouble digesting food. Things settled down but from then on I had some sensitivities to different foods, as well as subtle bloating etc. My insomnia became chronic and I began waking early as well as having trouble getting to sleep by around age 25. I would get around five hours of broken sleep a night.

    At its worst, closer to age 30, I was getting 3-5 hours of broken sleep. By age 30 my overall health was very poor and I was developing full blow chronic fatigue syndrome, or what appears now to be a post-viral fatigue syndrome. I had constant low level cold/flu symptoms, chronic gastrointestinal problems, swollen and painful lymph nodes, muscle and joint pain and fatigue, weight loss, cognitive dysfunction and worsening brain fog. I developed full-blown chronic fatigue syndrome around age 31 and I was unable to get out of bed. I had to withdraw from university and stop working. I was very, very sick. Unfortunately, I couldn't find a doctor who was willing to think very much and most simply shrugged their shoulders after running standard blood tests that appeared normal. Using Dr Lerner's EIPS scale retrospectively (Energy Index Point Score - http://www.investinme.org/Documents/PDFdocuments/EIPS.pdf), I was functioning at about a 1-2.

    Around age 31, six years ago, I began a treatment protocol called the Marshall Protocol. I saw some improvements in a number of areas early on. My gastrointestinal symptoms eased significantly and I developed an appetite again for the first time in a long while and which gave me enough evidence to continue. Over the following six years I experienced significant improvement in my health, however was still dealing with chronic tiredness, chronic sleep problems, and cognitive dysfunction. I estimate that I had achieved about a 5 on the EIPS scale as I was able to work a 35 hour week job consisting of 10 hour shifts four days per week, but with difficulty. I still barely had a social life as I was tired and just wanted to rest outside of work. I decided to take leave on medical grounds from my job around May 2013 in order to focus on my recovery and try and rebuild a social life because I couldn't do both.

    I decided to see a doctor in Melbourne in September this year who prescribes this protocol and who has a broader approach to chronic illness. He suggested I try Valtrex at around 500mg a day, then move up to 1500mg daily. I started and noticed an increase in symptoms - more fatigue, some headaches, etc. I recognised this as herx. I did some research and came across this and other forums including Dr Lerner's protocol and made another appointment with my doctor. He was excited to read of Dr Lerner's work and immediately increased my dose of Valtrex to 4000mg a day as per the protocol, and over the last month I have seen perhaps the biggest and most significant shift in my symptoms since I became sick. I have energy for most of the day, I feel lucid and alert, and I generally feel good. I have gone from a 5 on the EIPS to a 7. My sleep is still broken but other than that and some mild lingering cognitive problems, I feel quite well. So it seems this is what I needed to do all along. It's still early days but my improvements have held up consistently since starting Valtrex. I'm 37 years old now, and for the first time since age 18, I am starting to feel normal and well. I hope this continues!

    Years ago I was told I had positive IgG titers for EBV. I haven't had this tested recently but will do so. I also had blood tests for HCMV which were negative, and HHV6 which I showed a positive IgG level, so an indication that i've had this in the past. They didn't report the titer levels but I plan to have all the recommended blood tests done and will ensure I get the titer levels. However, based on the positive results and my symptoms, I believe this virus to be part of the problem and i'm going to go ahead and order some valganciclovir. I will start as soon as it gets here, obviously under the close supervision of my doc (he already wrote me a prescription).

    Looking back, I can very clearly recall when I picked up these viruses. They are the ones that cause glandular fever, and I was about 19 years old - right before I developed the insomnia that has plagued me for the last 18 years. I was sick with some kind of viral illness and it dragged on for perhaps six months.

    Perhaps my combination of the Marshall Protocol with the antiviral protocol will make things different for me? The Marshall Protocol works by restoring immune system function, so I have reason to be hopeful. I experienced significant symptom remission before starting the antivirals, so i'm not in the same situation as most other people. It will be interesting to see how things unfold in any case.

    I will keep posting my progress on this thread.
     
    Last edited: Nov 11, 2014
  2. ukxmrv

    ukxmrv Senior Member

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    If it is possible you explain which version of the "Marshell Protocol" you were on (and hopefully in a brief way without links and lots of reading) please? Just for understanding.

    I first heard Trevor Marshell when he first joined one of the early CFS treatment groups and over time I have met other CFS patients who have followed his work. The reason I am asking is that there appears to be a huge difference in the treatment protocol depending on when they start and who they have seen. So you treatment protocol could have involved everything from sun avoidance, to supplements like Benicar etc.
     
  3. Matt_C

    Matt_C Senior Member

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    When I started the Marshall Protocol it involved dosing olmesartan 40mg every 4-6 hours (I still take this and take my Valtrex along with it). It also involved low dose antibiotics of minocycline, clindamycin and azithromycin as the main antibiotics (they have since moved away from recommending the use of antibiotics). It also involved sun avoidance which was necessary for me as the sun provoked symptoms, mainly depression, and also avoiding ingested vitamin D. They also recommend a low-carb, high fat diet which I have been following ever since I started.
     
    Last edited: Nov 11, 2014
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  4. Matt_C

    Matt_C Senior Member

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    I guess I shouldn't get too carried away, i'm having a pretty rough day today. I started sneezing yesterday as though I had some allergies coming up, something that hasn't happened in a while and it's still going on today. I only got five hours sleep and am very tired but can't sleep, same as ever but I was starting to get used to feeling good! Hopefully it's a herx response.
     
  5. minkeygirl

    minkeygirl But I Look So Good.

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    @Matt_C Could you go back and put a bunch of paragraphs in your post? That's way too much text for many of us to read. ;)
     
  6. Matt_C

    Matt_C Senior Member

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    I've cut out some text and made smaller paragraphs, hope that's more manageable ;)
     
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  7. ukxmrv

    ukxmrv Senior Member

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    Thanks Matt, that's much better.

    I went back and re-read another section. (can only read a short amount at a time anyway) and see that you have had some success on a higher dose of Valtrex. That's great news. Must be very expensive to buy though and now Valctye which is also very expensive.

    I've only been able to stay on a dose of 1000 of Vatrex a day and there are long periods when I cannot afford to buy it. There is definitely something for me in Valtrex about finding the right dose. I never had a Herx reaction though.

    If you search this forum you will find other threads on patients using Valtrex and Valctye however I don't know of anyone else using Benicar with them. Antibiotic protocols are more common and part of a few treatments plans by various doctors.

    I'me having some success adding Celebrex to my Valtrex and also experimenting with Famvir. Although nowhere near your success. I've had ME for over 30 years with no remission even a major step forward.

    http://www.as.ua.edu/home/professor-surgeon-team-headed-to-third-phase-clinical-trials/
     
    Last edited: Nov 11, 2014
  8. Matt_C

    Matt_C Senior Member

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    Sorry to hear you've been suffering so long. It's such a shame that these viruses and their role in chronic illness aren't properly understood, especially seeing as they are some of the oldest viruses known to human kind. I read somewhere that HIV is easier to manage and those infected have a better quality of life compared to ME/CFS patients. About time some money went into ME/CFS research? I'm personally trying to stop calling it CFS as the name only adds to the problem. I say I have a post-viral fatigue syndrome now.

    Benicar and the Marshall Protocol treat systemic inflammation over time. I don't plan to use anything else for inflammation, and I think i'm mostly on top of the inflammation in my illness. I just need to get rid of the viruses as much as possible as it looks like those are what's causing my ongoing tiredness, cognitive and sleep problems.

    I'm also following Dr Lerner's Valtrex/Valganciclovir protocol to the letter, and yes it's expensive. It will cost me about $11,000 for a year of treatment. I'm borrowing some money to get started and i'm hopeful I can resume work soon so I can pay for it myself.
     
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  9. Matt_C

    Matt_C Senior Member

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    The symptoms i've had over the last couple of days seem to have been herx (jarisch herxheimer response for those who want to look it up). I'm feeling better today, no more sneezing and my sleep was better. I'm very hopeful that once I get onto the valganciclovir my sleep will improve and hopefully normalize. I read some articles that report that HHV-6 likes to lodge in certain brain centres, and i've also seen another case where treatment of HHV-6 infection result in complete resolution of their sleep problems. That would be a major miracle!
     
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  10. globalpilot

    globalpilot Senior Member

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    Hi Matt,
    Were you able to make a direct connection between your bloating and the virus/antivirals ?
    GP
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Good luck with it.
    Do u have any plans after the 12 months of treatment?
     
  12. Matt_C

    Matt_C Senior Member

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    GP: All of my symptoms are directly or indirectly caused by bacteria or viruses. I overcame most of the bloating and gastro problems a few years ago, before I started the antivirals.

    heapsreal: thanks. I plan to continue as long as is necessary. A year is the minimum recommended length of treatment, i'll go for 18-24 months or longer if necessary.
     
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  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Interested in this as this seems to be the hard part is getting ones immune system to work once the viral load is down and one can come off antivirals.
     
  14. SOC

    SOC

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    Antivirals cannot cause a jarisch herxheimer response. A herx response happens when the body reacts to the cellular debris from a massive kill-off of microbes, usually as the result of abx treatment. Antivirals work in an entirely different fashion. They do not kill off viruses or even virus infected cells. Instead, they reduce the ability of viruses to replicate. It is still up to your immune system to kill off infected cells and that only happens (at best) at the normal rate, not at the rate that would produce a herx reaction from massive amounts of dead cellular debris.

    That is not to say that people don't get difficult side effects from taking antivirals. Most of us feel pretty crappy at some point in antiviral treatment. It's just not a herx reaction. It's important not to dismiss bad side effects from antivirals as "just herxing". Bad side effects should always be checked with your prescribing physician to make sure they are not dangerous, especially when you are dealing with a medication as potentially dangerous as Valcyte.

    Just to be clear -- I am not in any way opposed to the use of antivirals. In fact, I'm a big supporter having done Valtrex + Valcyte treatment with Dr Lerner. I do, however, think it is very important to understand these meds and respect the risks involved.
     
  15. Matt_C

    Matt_C Senior Member

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    That's not what my doctor led me to believe. Dr Lerner's writes in his protocol that an initial worsening of symptoms is to be expected before improvement. This sounds like a die-off reaction. Why do you think this happens? I don't think it's simply adjusting to the medication. I haven't noticed too many side effects from the valaciclovir. I'm not terribly familiar with antivirals but the allergy type symptoms for me are a sign of herxing. I'm also taking olmesartan so I will continue to get some herx response.
     
    Last edited: Nov 12, 2014
  16. Matt_C

    Matt_C Senior Member

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    Have you ever considered the Marshal Protocol? It's worth looking into and will most likely benefit you. It's cheap for us here in Australia and very safe.
     
  17. Matt_C

    Matt_C Senior Member

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    From Dr Lerner's writings, I understand the main risks are kidney and liver function problems. He has said valaciclovir is safe to use, although he exercises more caution with valganciclovir. But so long as liver and kidney values don't indicate any problems, I believe they are safe. I've read some information about antivirals affecting white blood cell count and mitochondria production, but I haven't come across this in Dr Lerner's writings yet (I still have a lot of reading to do).
     
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have done similar abx protocols minus the olmarsarton. My doctor has used this protocol on some of his patients but said I wouldn't be a good candidate. I can't recall the exact reason why now but he said he hadn't seen it work very well in men for some reason and think there was some side effect he sees more often in men. Can't remember if it was a blood pressure thing or something else.
     
  19. ukxmrv

    ukxmrv Senior Member

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    We don't know if every worsening of symotoms is a Herx reaction. This is a topic that has been talked about on this forum before. We just don't know.

    One possibility that came from a patient seeing Dr Kenny DeMeirleir was that it could be a form of IRIS. There was a discussion on this a year or two ago and ideas on how to lessen the effects.

    I have no idea if this is right or if Dr KDM still thinks this is the case for antivirals or if it was "just" GCMAF

    http://en.wikipedia.org/wiki/Immune_reconstitution_inflammatory_syndrome

    http://wingsofhopefornid.blogspot.co.uk/2013/01/me-lecture-by-dr-kenny-de-meirleir-at_30.html
     
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    antivirals may not kill viruses but they do interfere with the viruses and change their dna to stop replication, maybe this stirrs them up causing symptoms, All theories, be good to do some research on this?
     

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