Question for Gasolo/Gary on Valcyte

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Oct 31, 2009.

  1. Slayadragon

    Slayadragon New Member

    Hi Gary,

    Did you find that any of your lab tests improved after you finished with the Valcyte (including your year or so recovery from it)?

    I'm less interested in the viral titers (though that would be nice to know too) and more in immune system measurements like Rnase-L and NKC activity.

    I'm now in the midst of this stuff and would like some encouragement that I'm getting at something fundamental.

    FWIW, I'm now in Death Valley with its pristine mold conditions. I can take the av's (900 mg of Valcyte + 1200 mg of Famvir) with just a little bit of tiredness here.

    But if I get exposed to any mold at ALL, I get quite sick almost immediately (within about six hours and for a day or so after going back to pristine conditions). This is sort of annoying, but it will be worth it if eventually I get some positive results.

    The good thing is that my brain seems to be repairing itself. When I'm in the pristine conditions now, it feels almost pre-illness.

    You said your cognition is 100% now. Is that 100% of pre-illness, or just 100% of what is considered normal for the population in general?


  2. gasolo

    gasolo New Member

    Hi Lisa,

    I haven't retested my antibody titers. Montoya didn't request Rnase-L or NKC activity.

    Cognitively, I'm 100% of my premorbid condition.

    I feel the Valcyte's major benefit was with cognitive function. For me it was worth it, since it allowed me to continue to practice as a surgeon.

    I'm not wholly well. PEM and fatigue are still a problem.

    I did suffer a moderately severe crash approximately 10 days after having a seasonal flu shot. I suspect this may have been a upregulated response. I strongly believe the H1N1 vaccine should be taken by everyone at risk, but possible not for indiviuals with cfs.

    In my Southern California teaching hospital, we are recieveing 3 children a day from H1N1. They all require ventilator support and a number of them will die. Our pediactric intensivist hasn't seen this severity of illness from the flu before.

    Good luck,


  3. Slayadragon

    Slayadragon New Member

    Thanks much, Gary.

    Scary to hear about the H1N1.

    It seems like you did recover from the moderately severe crash you had after getting the flu shot?

    That's encouraging about the cognitive functioning. The reason I wanted to pursue getting well was not to climb mountains but to get my brain back. It does seem to be happening.

    I didn't know you were in touch with Dr. Montoya. Did he comment with regard to whether he's seen other patients make your level of improvement?

    Have you (or anyone) heard about whether any of those immune system numbers have improved in anyone who's taken Valcyte?

    Best, Lisa

  4. chrissy12

    chrissy12 New Member


    The most significant symptom that improved with valcyte was my cognitive ability. Before valcyte, I was in a complete fog. I have been on valcyte for 1 1/2 years and that is the one symptom most improved. I still occasionally get a day with it, but it doesn't last forever.

    I don't know my latest numbers with cmv and hhv6, both treated with valcyte, but for the first time my mycoplasma numbers went down this week. They didn't have my other test results back yet.

    My friend who also goes to MI had much lower numbers this last visit. Her CMV went from 230's down to 94 and her HHV6 went from 1:640 to 1:160.

    My hhv6 numbers have gone down, but as of yet haven't stayed down.

    I am starting to wonder if Dr. Lerner's approach is a long slow road. I have seen improvement in the last 3-4 months and have been with him almost 2 years. I am really glad I stayed with the program as I am seeing more and more improvement. It is slow and I am looking forward to seeing how he handles the XMRV news. He is on board with it, but I am not sure how he will proceed with it..

    Best, Cindy

  5. Slayadragon

    Slayadragon New Member

    Hi Cindy,

    It's interesting that you've been on Valcyte for that long.

    Have you ever taken a break from it? If so, how did you feel then?

    Is Dr. Lerner's inclination for you to stay on it indefinitely? Does he do that with many patients.

    I believe that it took Gary something like 18 months (six months on the drug and then a year off it) before he really got improvements.

    I wonder why that is.

    Of course, I can't help but speculate with regard to the mold.

    If Valcyte makes the body better at keeping out the mold (e.g. by making the macrophages/astrocytes work better?), then we'd stop the inflow of mold into the body.

    With lower mold exposures, reduced glutathione levels would come up. (Rich van K and RunningAntelope discussed this with me on another thread.) Then XMRV and HHV6a levels would naturally come down and stay down.

    All this would take time though. Especially if external mold levels remained more than moderate, it might never happen at all.

    Just thinking out loud. Those who think my "mold theory" is crazy can feel free to ignore me.

    Best, Lisa

  6. chrissy12

    chrissy12 New Member


    I was off valcyte for about a month last year. He was trying to adjust all the meds.

    I asked him how long he keeps people on valcyte and his answer was I like to take them off when they reach a 7 on his scale. Whoa!! I thought. I am at a 4. I can't see myself staying on that long. I think on my next appt.. I am going to bring this up again...

    In regard to mold, I believe I was very sensitive to it. When I went to MI last year for 6 weeks, my husband painted and cleaned basement real well and had someone come in and do our vents. Dr. Lerner thought it was a good idea.

    I have to say something that I have noticed a big change in, also, is my sensitivities to smells.
    I couldn't handle perfume, scented candles, some cleaning supplies, mold outside. Those things don't bother me nearly as much as they used to in the past. I would say in the last 6 months, I have seen that improvement. We have a lot of trees in our yard and every fall when the leaves start to come down, I would get sick and couldn't breathe. I actually walked in the leaves and could breathe. This is new, too.

    All of these things happening have me believing something is working.

    I have a feeling with all of your mold avoidance and the valcyte, you are going to see big changes.
  7. Slayadragon

    Slayadragon New Member

    Thanks for the encouragement!

    I'm glad to hear that Dr. Lerner is supportive of people working on mold in their homes. I'm increasingly of the belief that while "extreme avoidance" isn't necessary to make some progress with a variety of treatments, people have a hard time getting anywhere if they're in a really problematic place.

    It seems increasingly clear that lowering toxic mold levels results in improvements of the tolerance of other chemicals. Insofar as I keep the mold under control, chemicals don't bother me at all. I've heard that from a number of other people too.

    The reason for this is an interesting question. If we could figure out why, that might lead to some real insight into the illness.

    Where did you start on his scale?

    Did you feel any different during the month you were off the drug?

    Best, Lisa

  8. wldhrt

    wldhrt New Member

    Hi Gary,
    I have a question regarding your recovery after Valcyte treatment. Did you happen to have a low body temperature prior to Valcyte treatment? If so, have you noticed a return to normal (98.6) now that you are feeling well?
    I ask this because one of Prof. DeMeirleir's theories is that an immune activation protein has a 98% homology with the T3 receptors, binding to them and competing with the body's own T3. This makes our own T3 inefficient (T3 resistance), causing fatigue and below normal body temperature. Treatment with an antiviral may attenuate the immune activation, freeing up T3 receptors.
    I noticed that in my own treatment with Valcyte, and then Famvir, my temperature did gradually increase to almost normal. My symptoms (especially pain) were greatly relieved by this. However, I have noticed an increase in my symptomolgy in the past month - and lo and behold - my body temp is back down again to 97.2 - 97.4. I know that those with FM frequently have a lower than normal body temp, yet Thyroid meds don't seem to be very helpful for most of them. I'm wondering for myself whether I have had an immune reactivation (for whatever reason).
    I will ask DeMeirleir about this ( I do research for a local doc and have consulted with him in the past), but would appreciate your reply regarding your own body temp.
    By the way, I did test post-treatment for Rnase-L and LMW Rnase-L and both are now in normal range.

    p.s. anyone else who reads this and might have some feedback, I would welcome it as well

  9. richvank

    richvank New Member

    Hi, Mark.

    For what it's worth, I have an alternative hypothesis to Dr. de Meirleir's.

    As you know, normally the thyroid hormones control the basal metabolic rate.
    They do this by adjusting the gene expression of enzymes in the mitochondria of the cells.

    As you noted, in CFS, the metabolic rate does not respond well to the thyroid hormones. I suggest that the reason for this is that there is mitochondrial dysfunction caused by rise in oxidizing free radicals as a result of glutathione depletion. Thus, there are partial blocks in the Krebs cycle and the respiratory chain caused by these free radicals, and these partial blocks cannot be overcome by the effects of the thyroid hormones.

    Often the thyroid hormone levels are in their normal ranges in PWCS, but the body temperature is below normal, indicating a lower than normal basal metabolic rate.

    In other PWCs, the thyroid develops Hashimoto's thyroiditis, and the thyroid hormones go low. I suggest that this is also an effect of glutathione depletion, but in this case in the thyroid gland itself. Hydrogen peroxide is made in the thyroid as part of the process of making the thyroid hormones. When glutathione goes low, the thyroid has no protection against its own hydrogen peroxide, which then reacts with proteins such as thyroglobulin, and the immune system then views these proteins as foreign substances and mounts an attack on them. The result is autoimmunity in the form of Hashimoto's thyroiditis.

    Best regards,

  10. chrissy12

    chrissy12 New Member

    I am not sure our house had problems, but I was trying to do everything possible to get well. When I asked Dr. Lerner, he said you want to make sure there aren't any problems. So my husband decided to clear it just in case.

    I notice more outside that I can tolerate the mold. This time of year is usually bad for me with the molding leaves on the ground. So far, so good.

    I started around a 2 on his scale, but honestly I think that was generous. I was sooooo sick and couldn't do anything. Just existing was difficult. I remember those early trips and how sick I felt just riding. Now I can just sit back and I don't feel so miserable. The trip does wear me out and I have to rest for weeks after. It is a 10 hour round trip day with 2 hours at his office.

    I really didn't feel any different off the drug. I would have to say the first 6-8 months were hard on the valcyte and just in the last 3-4 months, I feel like something is happening. I am really looking forward to my latest labs. I think they be finally on the move.

    One more side note, I had trouble sleeping the first 1-2 months. It was like a wired tired and I couldn't go to sleep. When I went off the drug, my sleep improved and then when I went back on, sleep problems occurred. I have adjusted to meds again. Sleep is always somewhat of an issue for me, but worse in the beginning of valcyte.

    Best to you!!
  11. wldhrt

    wldhrt New Member

    Hi Rich,
    Thanks for your take on this. I am a little familiar with your theories regarding the methylation cycle and glutathione depletion. I am still curious, though, on how treatment with anti-virals relate (if at all) to relieving the blocks in the Krebs cycle. If my basal temp rose to normal while on AV treatment, and not by addressing the glutathione depletion, I am still thinking that Dr. Kenny's theory makes sense. (not that your theory could also have merit, maybe just not in my particular case).
    Thanks for all your good work,
  12. gasolo

    gasolo New Member

    Hi Mark,

    My body temperature has always been 98.6 F. I don't tolerate cold very well. My heart rate has always been slow (50). I'm rather muscular and thin and have had normal thyroid function test.

    Physical and emotional stress seem to be triggers for a crash. Most recently I experienced a crash approximately 2 weeks following a vaccination for the flu. Worse crash in over a year.

    In my case, I don't believe my thyroid hormones are a problem.

  13. Slayadragon

    Slayadragon New Member

    Mark, so glad to hear about your Rnase-L and LMW Rnase-L moving to normal after Valcyte usage! That's really encouraging in terms of speculation that the effects will be permanent.

    I did have a lower-than-expected rising temperature for many years (you take your temperature in bed before getting up). I think this is called "basal body temperature"?

    My temperature the rest of the time was basically normal, though toward the end I had a lot of chills and feverish feelings.

    I took compounded T3 throughout much of my illness. It was helpful.

    After mold avoidance, I no longer needed thyroid hormones or any of the other eight or so hormones I was taking.

    Rich, can you speculate offhand why elimination of mold toxin would normalize thyroid?

    Thyroid problems seem VERY common with mold illness.

  14. Slayadragon

    Slayadragon New Member

    That's good to hear about your being able to tolerate outdoor mold.

    Do you have any sense with regard to whether that's an allergy or toxicity issue? What are your symptoms?

    Where do you live?

    Wow, you were really sick then! I'm so glad to hear you made progress.

    The Valcyte is potent, that's for sure. The past couple of days, I've woken up partway through the night with symptoms of brain inflammation. That's a mold response for me, but it's been a long time since it's hit me like that. So I think this is likely what causes problems with other people's sleep too.

    Hopefully it won't last very long!

    Thanks much for the info.

  15. rocky76

    rocky76 Member

    Thanks you guys...

    I've kept up with your thread....

    Keep it going....

    I'm just starting Valcyte....

    Also we lived in a house full of hidden mold so

    our insurance company paid for a new little

    house for us....Its been 6 years now and the MOLDS

    still kill me.....

    So I hope V will help my symptoms....

    [This Message was Edited on 11/04/2009]
  16. chrissy12

    chrissy12 New Member

    I believe I have an allergy to mold. The only time, 15 years ago or more, I was tested for allergies, I tested for mold only. My symptoms always hit me in the fall and spring.

    I live in central Ohio and we have a lot of trees and mold. Every October, I couldn't breathe, my chest would get heavy and it would always lead to a sinus infection, then bronchitis and maybe pneumonia.

    What is really interesting, since I have had CFS, I don't have those symptoms nearly as bad, especially since I have been on valcyte. Every now and then I get a flare, but nothing like before. I always knew when it was Halloween because I always was sick with a sinus infection. This year I made it without one:)

    Maybe you had a mold response because the valcyte is doing something. Some days still I feel toxic and I think it's from the valcyte. If it gets real bad, I will cut my dose for a day or two. It seems to work.

    I know CFS and sleep are a problem, I also think valcyte and sleep are, too.

    Best to you!!

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