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Week 8 on Valcyte

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by undcvr, Dec 28, 2010.

  1. undcvr

    undcvr Senior Member

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    The East Coast was hit with the Blizzard over the weekend sending the temperature below 0'C. This is usually when it gets really bad for me over the winter. I find that with cfs the cold is hard on me and it takes a long time for me to recover if I have been out in it for awhile, esp. if the temp is below 0 (32F).

    I can literally break out into a sweat after coming indoors. I have learned to read this as a sign that my body is exerted, just like having jogged or gone for a run.My breathing becomes very hard and my heart beats very fast. Its strange becos it is only a walk to the grocery store to buy things but I will break into a sweat and have to take off all the heavy clothes becos I feel so hot and for the rest of the day I am recuperating and recovering. It really sucks. I know I am on the right track with this bcos on days that I take high amts of a good immune supporting product I do not have this problem, except that I am already taking the Valcyte.

    I dont trust the lower dose of Valcyte on its own and have added a whole bunch of other stuff to it again. I really need them. Just to feel like I can make it thru the day w/o breaking down (just that it is making me broke) . It wasnt so long ago that I was reeling from 1 psychotic episode to another, drifting in and out of reality. I would lie down on bed to rest only to be taken by my mind into another world. A much kinder world where I was god and all powerful. I remember manipulating alot of childhood play scenes from the tv and movies. I used to day dream alot when I was younger too. Now, I wonder if this was a symptom of what I was to experience when I grow up. It may have been a sign that already back then I was more susceptible t cfs.

    I wud get lost in these episodes for hrs, waking up only for dinner and then to repeat the whole cycle the next day. Those days I was really devoid from reality, my defense mechanisms to it so primitive. Can that be an alarm bell too ? That those of us that are not ready to deal with the harshness of reality are doomed to be cut down by it all through our lives. I know that when it comes to reality it is all about bacteria and viruses and an immune system that cannot seem to function normally but can there be a psychological angle as well ? I really want to know. It is not a well known fact that Candida and some bacteria have been implicated in schizophrenia and it is a well known fact that SSRIs can help cfs-ers.
    They are particularly helpful if the cause of your cfs is EBV, HHV6 or CMV. These viruses produce a protein in the brain that cause depression. If you take the SSRIs you are only treating the symptom. But I dont care. Just take take the depression away anyway even if it is not the cure. That was how I used to think. But these days I am looking for a cure. I just dont know where to find it. Looking back i think that one of the reasons why I was able to come through those times was because I wanted to. Does that make sense ? Because how wud I know back then ? What was real and what was not ? But I think I just really wanted to be healthy and even back then kept searching for it. Now I am more realistic as it looks more and more like an illusion.

    It got so bad that I had to go on Seroquel. I had paranoia and sat in front of the tv sometimes thinking that I cud influence the outcome of football and basketball games. No I didnt shout at the tv, just sat there and stared at it really hard till I got a headache. Its sad but I also realised that I learned alot of these patterns from my parents. Sadly they werent really into reality all that much themselves. They did not cope with stress well. So is this how it goes then ? That the spiral of poverty just keeps going round and round and escape from it an illusion ? My grandparents on both sides were poor. They brought my parents up in abject poverty too. The habits and culture that they grew up with got passed down to us. So now my sister and I have it. I think there is more to this than meets the eye. In there somewhere cud be a psychological pattern that maybe, in one generation, can be broken. Or maybe not.

    I like the idea of Phoenix Rising. I have been dead for so long but can I really live ?
     
  2. Timaca

    Timaca Senior Member

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    There is hope. While not well, I'm a lot better than I used to be. I was on valcyte for 9 months. It helped me. A friend of mine suffered from depression, anxiety and panic attacks. Those have largely resolved treating various infectious pathogens (HHV-6, EBV and Q fever). Hang in there....better days are on the horizon.

    Best, Timaca
     
  3. undcvr

    undcvr Senior Member

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    What dose were you on while on the Valcyte ? I am now at 900mg and my doctor is refusing to put me back on the 1800mg. I have been taking it since the 1st week of Nov.
     
  4. sela

    sela Senior Member

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    i wonder if you have considered pyrroluria. it is a deficiency of zinc and can cause extreme sensitivity to stress.
     
  5. undcvr

    undcvr Senior Member

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    I take 40-50mg of Zinc Orotate a day. It is supposed to be a better form than Picolinate. I make sure it works out to 50mg of Zn in the elemental form and not just the Zn compound itself. I take 30-40mg at night before I go to bed like some sort of ZMA therapy. :)
    Shud I take more ? I do realise that for pple with cfs they need more of pretty much everything.
     
  6. Timaca

    Timaca Senior Member

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  7. undcvr

    undcvr Senior Member

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    I see that it is on the HHV6 board. What do you think of HHV6a titer levels of 1:320 ??? My doctor does not think anything of it and is convinced that that value does not represent an active infection. But from all the HHV6 doctors that talk about it on the web the recommend considering Valcyte if your values are above that amt.
    I cant seem to make my doc take this seriously. I am getting tired of him and and thinking of changing docs again. He is a virologist who specialises in HIV and cant tell me anything at all about XMRV.
     
  8. Timaca

    Timaca Senior Member

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  9. undcvr

    undcvr Senior Member

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    Thanks that really did confirm my suspicions. Ok, its official, my doctor is officially stupid and now I need to start looking for a new one ... thanks Timaca
     
  10. undcvr

    undcvr Senior Member

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    Btw I am in NYC and have been recommended by several immunologists to go to the Immunodefiency clinic of Mt Sinai. From an immunologist's point of view, we are immuno deficient and more susceptible to infections. They hold the director there, Dr Charlotte Rundle in very high regard. But I will prob not see her but one of the 3 or 4 doctors under her.

    Any comments ? Anybody been here before ?
     
  11. Timaca

    Timaca Senior Member

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    I figure the more you can learn the better. However, I'm not sure anyone knows what to do with info on the immune system at this point in time, so a better question would be...what would be done with the info gleaned? And can you afford those appointments?

    Best, Timaca
     

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