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Currently ill on valtrex - thinking of switching to famvir.

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by nofuture, Oct 8, 2013.

  1. nofuture

    nofuture

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    Thanks for the encouragement. I feel as though the last two years of my life felt like 10 years dragging by. I have to give up exercise, which is something i love in order to have some energy to get through the day. I understand that many people on here had the disease longer than I but i'm mad that I lost 2 years of a good life. As for the research, It was me who took the time to look all over the net for information that led me to Dr. Edward Conley (who's staff is not the least bit customer friendly), Dr. Lerner and this website. Where i got lucky is that I judged which doctor would be open enough to listen to what I had found from Dr. Lerner.

    I'm wondering about your daughter. When did she first have the infection. How long was it? What was it? How long was it treated for and with what? Also, is she still taking the medication today?
     
  2. nofuture

    nofuture

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    Just got a Famvir prescription 1.5grams 4x daily. I will also be doing the tests that Ema recommended me to take at quest labs (EBV Early Antigen Ab Prof, Qn, HHV6- IgG IgM & Cmv antibodies IgG.

    This doctor is really open to helping me out. Only time will tell. I will keep an update on my journey. Thanks for the support guys.
     
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Famvir helped but only got me so far, valcyte got me abit further but i still continue to use famvir with valcyte.
     
  4. SOC

    SOC Senior Member

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    She and I both got an unidentified and untreated viral illness a bit over 9 years ago. She generally recovered with occasional relapses over 5 years. Then she got her pre-college vaccines, including a live chicken pox booster. The chicken pox virus is one of the herpesvirus family (HHV-3) and herpesviruses are known to reactivate each other. She got immediately ill and didn't recover. The docs believe that the live virus vaccine reactivated her EBV and HHV-6. She was continuously ill (and getting worse) with EBV and HHV-6 for a year before we found Dr Lerner. He counted her as ill for a year because she had only been continuously ill that long.

    She was treated with Valcyte for a little over 18 months. She was started on Valtrex also during the last several months of Valcyte treatment and continues on it to keep herpesviruses suppressed. She has been off the Valcyte for just over 2 years.
     
  5. nofuture

    nofuture

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    SOC I'm happy that your daughter got well. Im not sure how long it will take for me.
    - I just tested for EBV, HHV6 and CMV. The Lyme test I will have to do with another lab, so I will talk to my doctor on my next followup visit. Talk about getting a break, at my appointment today my doc and I were laughing and he said I can add him on facebook. Who does that!? What an amazing person! I have lost trust in most M.D's at this point because most of them told me DEPRESSION DEPRESSION DEPRESSION. I saw that they will tell you with depression when they don't know whats wrong with you. What a shame our medical system is.
    Day 1- Famvir trial:

    Today I took 2 doses of Famvir 1.5 grams each and have two more dose left. energy before 5/10---> now 8/10
    -Drastic improvement in energy. I want to talk to people & I don't focus as much on the negative aspects of life.
    -appetite was crazy today
    -First day was amazon lets hope the same for the coming days.
    -I did so many things today. I exercised and I'm not getting tired afterwards. Slightly dry palms but, I can deal with that because time will heal the damage the virus(es) caused..

    Last thoughts:
    My hope is that I can get well enough to return to school next semester that way I will have coverage for this drug as it is not cheap. Famvir costs $642 for a month supply, which I had to pay $7.50. I don't look at the money. I look at the fact that it works , but its nice that insurance will cover it.

    Thanks for replying heapsreal I found your research on Famvir very helpful. Honestly the increased intra-cellular half life had me switch from valtrex because I was crashing bad 2 weeks on into it. If you can tell me your situation like SOC did about her daughter that would help me to get an idea about your experience . I'm trying to see what i'm up against.
    Depending on the results, I will see with my doctor about trying valcyte if famvir does not work in the long term in order to get off the meds eventually.
     
  6. nofuture

    nofuture

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    Day 2 Famvir Trial: Energy 7/10 Dosage: 1.5 grams 4x Daily
    -woke up late
    -had good energy levels
    -did crash after a big meal
    ---the crash lasted 2 hours. This is improving compared to 4 hours or more.
    ----I usually crash after eating, or after a workout

    After crashing I took my 4th dose and I bounced back.

    Today I did strength exercises. Although I am not at my previous bests I see progress
    --Afterwards I did 30 mins of cardio
    -Feel great!

    What improvements do i see:
    2nd day of straight exercise without feeling like im going to die
    Slightly less dry hands like on day 1
    Again, its too soon to tell , but I have a feeling im going back to school next semester and not because i have to, but because I want to!
     
    merylg likes this.
  7. nofuture

    nofuture

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    Day 3 Famvir Trial: Energy 5/10 Dosage: 1.5 grams 4x Daily
    - had good energy most of the day
    -crashed bad towards night time
    -wanted to sleep long time
    - no appetite once again
    - I'm not sure if this is even viral or parasite

    -Intense anal itching ... I think I might have parasites

    I need some feedback. Thanks.
     
  8. vamah

    vamah Senior Member

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    If you think you have a parasitic infection, a doc should be able to find that out fairly easily.

    My advice, as far as the antiviral, is not to track your progress day by day. I have done this and it's so easy to get discouraged if you have a good day followed by several bad ones. You have to think long term. There will be many ups and downs that have little to do with the medication, but how much sleep you get, if you have had a busy day, if you have a cold or other minor illness, the weather, etc. Try tracking how you feel weekly, rather than daily.

    I have experience with this on valcyte. Had a few days about a month in where I felt way better than I had in a while. That feeling went away and hasn't returned for months, but I have noticed small things like that I can stand for long periods of time without getting dizzy like I used to.

    If you test positive for hhv6 or CMV, you should absolutely consider switching to valcyte as it is the ony drug (other than ones that are only available IV) that has been shown to be really effective. Otherwise, give the famvir time -- and by that I mean months, not weeks. You might also add lysine, which is very inexpensive and you can find at a vitamin store or online. It has been shown to help with the herpes family of viruses. 1000mg, 3x per day.
     
    heapsreal and SOC like this.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Agree with vamah , wait 3 months than turn around and look back at how u functioned than versus now. Thats enough time to notice difference eg maybe not needing to nap as much or dont crash as often or as hard or decrease in pain.
     
    Christopher and SOC like this.
  10. nofuture

    nofuture

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    Ok. Thanks for the advice. I also read a blog on your valcyte trial heapsreal. How did it go and are you off antivirals?

    Day 4 Famvir Trial: Energy 7/10 Dosage: 1.5 grams 4x Daily
    I bounced Back.
    i will give it more time to see any improvements.
    Currently, the benefits outweigh the drawbacks
    part of the problem that I am seeing is body heat is constatly changing
    - ill excercise and then i will feel colder
    - if i take the famvir it will help

    -Tired DOPA Mucuna and it gives me lots of energy. So this virus depletes your dopamine. I know heapsreal used it, but it might be possible to toughen out valcyte with Dopa. I feel like the heart rate picks up and the recovery from the workouts goes into full swing.
    My motivation just increased. Any thoughts on using this until im cured?

    heapsreal
    Im going to go to my doctor sometime next week for the the labs for EBV, CMV and HHv6 to see where they are at. If it does turn out to be cmv and hhv6, what are the ranges for those and will valcyte make me crash very hard? I ask this because I plan on going back to school next semester if possible,
     
  11. vamah

    vamah Senior Member

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    As far as valcyt crash, everyone is different. I crashed hard, but only for about a week. If you have been on other antivirals (I was on acycvlovir before starting valcyte) I think it may make the crash less severe because they will have already knocked down the virus to some extent and your body is maybe used to them. That's my theory anyway.

    The thing with valcyte is, though you may return to your baseline in 1-2 weeks, it can take a long time to see improvement. I have seen people on this forum who had great success with valcyte, but it took 12-18 months. So you have to be ready to stick it out. If you return to school just make sure your schedule and courseload can allow you to get enough rest because that is important with valcyte.
     
    SOC likes this.
  12. nofuture

    nofuture

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    Day 5 Famvir Trial: Energy 7/10 Dosage: 1.5 grams 4x Daily
    the energy is about the same as before but the p5p b6 im taking is helping immensely.
    - I will get some liver function labs tomorrow and follow up with my doc
    - I will call in to make sure the labs are completed for the viral load.
    Based on that I will be able to see if valcyte is a better fit for me and time will tell from that point on.
     
  13. SOC

    SOC Senior Member

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    Seriously, man, you are not going to see progress on a daily basis with antivirals, especially not with ME/CFS. Antivirals slow down viral replication, they don't kill the virus directly. Your immune system still needs to kill off infected cells.

    The usual treatment length with antivirals in ME/CFS is 18 months or more. It will probably be better for your mental health if you do your condition check more like once every month or three, as other members suggested.

    My daughter stayed in college the semester she started Valcyte, but she had a LOT of support. She lived at home so she didn't have to take care of daily living issues like cooking, cleaning, or doing laundry. She took the minimum full-time load because she was still exhausted and needed long daily naps. There were days she had to be driven from class to class because she couldn't walk far enough or was nearly passing out in class. She did it, but it was not business-as-usual college -- no social activities, LOTS of rest.

    By the following semester -- 9 months after starting Valcyte -- she was doing better, but still needed a lot of rest and had very little time or energy for social activities. It wasn't until 18 months after she started Valcyte that she was functional enough to live in an apartment on campus, have a normal social life, and carry a normal courseload for her major.

    My point is this -- Be confident that you can be much better than you are now with aggressive antiviral treatments and proper pacing and management, but don't fool yourself into thinking everything will be back to normal in a couple of months. Life is not like that with ME/CFS.

    FWIW, my daughter had no crash at all with Valcyte, just a slow, steady improvement. I, on the other hand, had a pretty nasty crash, but one I would go through again in a heartbeat to get the same amount of improvement. It's impossible to know how your body will react to Valcyte, but my guess is that the shorter time you've been ill and the stronger your immune system, the less likely you are to have a crash with Valcyte, so you might be in the lucky group. :)
     
    Christopher, Valentijn and vamah like this.
  14. nofuture

    nofuture

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    Thanks for the feedback but where can I keep a journal of my journey?
     
  15. Christopher

    Christopher Senior Member

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    If you have a google account, you can create a doc or spreadsheet in google drive so you can access your journal anywhere. That's what I do.
     
    nofuture likes this.
  16. nofuture

    nofuture

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    I just went to my doctor and talked him about trying Valcyte. He says he never prescribed it before and is uneasy about doing so. Any specific research i can print out for him besides Dr Lerner so he can look at? The tests still have to come in, but based on what everyone has been saying Valcyte will be the only long term cure for cfs.
     
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Dr montoya has studies on valcyte treating cfs.

    Cheers
     
  18. vamah

    vamah Senior Member

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    What Heaps said about Dr. Montoya.

    But have you gotten your test results back yet? I wouldn't start valcyte unless you have tested positive for hhv6 or cmv. If you have, there is a lot of research for treating those with valcyte in patients with compromised immune systems.
     
  19. nofuture

    nofuture

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    Im still waiting on the results. Ill call in this morning to see if the results are in and also print some research articles from Dr. Montoya for my next visit.
     
    Christopher likes this.
  20. nofuture

    nofuture

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    Ok. With the exception of cmv i have the lab results. If anyone used quest labs and they know their ranges please let me know.


    Not sure who to see next if these results are fine Dr. Conley for gut problems or Dr. Lerner for anti viral remedies.

    They were done through quest labs:
    EBV
    IgG 1.06
    IgM 0.9

    HHV6
    IgG 1:32 high?
    IgM 1:20 A little high ?


    based on a user's fourm values

    EBV range: My Results igG 1.06 IgM 0.9
    < or = 0.90: NEGATIVE
    0.91 to 1.09:EQUIVOCAL
    > or = 1.10: POSITIVE

    (this applies to all parts of EBV test)


    CMV IGG range: (not in yet)
    < or = 0.90: NEGATIVE
    0.91 to 1.09: EQUIVOCAL
    > or = 1.10: POSITIVE


    CMV IGM range: (not in yet)
    0.00 to 0.89: NEGATIVE FOR ANTIBODIES TO CMV IGM
    0.90 to 1.10 EQUIVOCAL
    GREATER THAN 1.10: POSITIVE


    HHV 6 REFERENCE RANGE My results: IgG 1:32 IgG 1:20IgG
    <1:10IgG
    <1:20IgM
     

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