13th week of Valcyte
- Thread starter undcvr
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May is the 6th month that I have continually been on the high dose of Valcyte. I am consistently testing neg for EBV but I am still having relapses and flare ups. Auto immune rxns where my immune system attacks my own body, feel very much suspiciously like Lupus.
I am also beginning to notice that i am prone to auto immune flare ups anyway and they are mostly causes by over stimulation and stress. But I mean what isn't caused by stress. I was hoping that it was the ebv that is responsible and that putting that in remission wud solve the problem. So far it hasnt been so.
I am also beginning to notice that i am prone to auto immune flare ups anyway and they are mostly causes by over stimulation and stress. But I mean what isn't caused by stress. I was hoping that it was the ebv that is responsible and that putting that in remission wud solve the problem. So far it hasnt been so.
heapsreal
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hi undcvr, when u say neg to ebv, do u mean neg to igg antibodies? In oslers web this was a common occurrance in patients from the lake tahoe outbreak who initially tested positive and then lost these antibodies, these were people who didnt take av's, maybe its a sign the immune system is down and unable to make ebv antibodies. I have tested positive to igg ebv antibodies in the past and they are suppose to stay with you for life, last year i tested negitive as well, but im also on av's. I am still producing antibodies to cmv though, but i dont know what all this means other then our immune systems are dysfunctional.
cheers!!!
cheers!!!
I have recently added LDN (low dose naltrexone) to what I am taking. I am abit concerned with what is happening recently.
I have been taking Valcyte for 6 months now come June 3rd. So far all my readings for EBV have been 'undectectable' but recently I experienced another auto immune flare up that sidelined me for awhile again. This time tho it was not so severe but it was still bad.
Can suppressed EBV still cause an auto immune flare up ? Do I just have to give the Valcyte more time ? The worst case scenario is that if there is nothing wrong with my EBV status and there is something underlyingly wrong with my immune system, which there probably is.
I have been taking Valcyte for 6 months now come June 3rd. So far all my readings for EBV have been 'undectectable' but recently I experienced another auto immune flare up that sidelined me for awhile again. This time tho it was not so severe but it was still bad.
Can suppressed EBV still cause an auto immune flare up ? Do I just have to give the Valcyte more time ? The worst case scenario is that if there is nothing wrong with my EBV status and there is something underlyingly wrong with my immune system, which there probably is.
Sushi
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Just a thought. I am sure that there is something underlying wrong with my immune system--my immune profile is whacky! I am also taking LDN and do find that it induced enhanced immune responses every time I upped the dose.
Maybe that could be happening for you?
Sushi
Timaca
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undcvr~ Have you tested for enteroviruses? Perhaps they are causing your flare ups. We caught it doing that in me via labs, and the flare up was bad.....
See: http://chronicfatigue.stanford.edu/infections/entero-tests.html
Best, Timaca
See: http://chronicfatigue.stanford.edu/infections/entero-tests.html
Best, Timaca
Timaca
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undcvr~ Did you use ARUP lab for enterovirus testing? That is the best lab to use....trust me, I've been tested at lots of labs, ARUP is the only one that picked up the enteroviruses...
Best, Timaca
Best, Timaca
Sushi
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Hi undcvr,
I take 4.5 mg now but it took me 4 months of very slow titration to reach that comfortably.
Best,
Sushi
Sushi
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LDN gave me insomnia (it lessened as the dose went up) till I got to about 3.5 mg. Then it actually helped my sleep. Some others have had the same experience. Who knows?
Best,
Sushi
Over the last few weeks I have gone from thinking that I had a lupus-like auto immune flare up, to thinking that my liver detox phases are not working properly to thinking that my body is trying to mobilise toxins and move it out of my body, WTF knows anymore ...
At the moment I have settled on the idea that this is just how my body's immune system respond to things: very badly.
At the moment I have settled on the idea that this is just how my body's immune system respond to things: very badly.
Yesterday June 3rd marks the 6th month I have been on Valcyte at the highest dose. By and large for the last 6 months it has kept my EBV levels in the blood at 'undetectable' and I am assuming my HHV6 lvls low. It has been a life saver and an eye opener. I cannot say that I have chronic fatigue anymore. I am fatigued yes but for other reasons. Now the trick is just to get off it. Also ironically, my disability hearing comes up nxt month.
In the month of May, I have been sporadically able to work 15hr days once or twice a week while still working about 4 days a week for an average of 6 hrs each. I get cranky and feel like running around wanting to kill everyone late in the work day, but those thots stay in my head and I am able to push through.
I still have relapses but they are very specific relapses and with the Valcyte/Isentress/Valtrex keeping the viruses at bay, I am able to see clearly where my relapses are coming from.
Basically so far, I can identify 2 parts to my CFS: one viral-based and the other crashes induced by a specific set of Rx drugs, so far I notice that they are stimulants and SSRIs. I can only take very small doses of these drugs before I crash. If anybody can tell me why this is happening I would be very very grateful.
The only leads I have so far are that my body cannot detox a certain range of Rx drugs very well, this gives rise to build-up, overstimulation and then the awful awful crash. I have 2 leads suggested to me from the pple on here: my methylation and sulphuration cycles. This is interesting. I have always thought that Epsom salt baths helped me a great deal and I always thought that it was becos of the Magnesium. Now it is possible that it could be becos of the sulphate anions too. Also Betaine HCL helps me alot. Betaine is basically TMG (tri methylglycine). The strange thing is that I don't think TMG on its own helps me as much as Betaine HCL does I think. So this is basically where I am rite now. If I can manage these 2 components I can live a decent life.
I want to get my liver tested.
I want to get my NKC activity tested.
I have also started taking LDN. I dont think it is doing anything for now but that may also be becos of the Valcyte and other AV/ARVs. But i intend to transition out of them or at least bring their dosage down in the near future. Then I will know if the LDN really works for me or not.
My advice to anyone reading this is to get your Herpesvirus status tested. It is a big deal. Even seemingly general and non-specific AVs like Amantadine and Vermox will be incredibly helpful if part of your CFS is viral in nature. It almost always is. CFS is a moving target with many different components in play, that's what makes it so difficult to pin down. Also if you are very frustrated with your improvement, ask your doctor if he can change your diagnosis to MS. It will open up the way for many more therapies for you to try that can be very helpful if your insurance covers those.
As I work on this 2nd component to my CFS I am wondering if there are other parts to it. I do notice that when I fall sick, I almost always have to treat my immune system along with something else in order to get well. It is almost always my CNS for overstimulation or my adrenal glands for fatigue.
Again if anybody can help me with why I am responding so badly to RX drugs and how to test for this and how to resolve this, I would appreciate it very much.
I want to offer some words of encouragement to others going through this. I guess it shows how far along I have come and how confident I am in my recovery that I am able to think of others for once and not just thinking about myself. I think that what separates us from healthy people is very very little. We were all once healthy vibrant luminous beings that happened to be struck down and overwhelmed all at once by what life threw at us either self-deliberately or not. I still constantly watch my back everyday, wondering if this is the day I slip back into days of endless fatigue. But I also think that with the right tools, recovery is also right around the corner and sometimes can happen surprisingly fast.
In the month of May, I have been sporadically able to work 15hr days once or twice a week while still working about 4 days a week for an average of 6 hrs each. I get cranky and feel like running around wanting to kill everyone late in the work day, but those thots stay in my head and I am able to push through.
I still have relapses but they are very specific relapses and with the Valcyte/Isentress/Valtrex keeping the viruses at bay, I am able to see clearly where my relapses are coming from.
Basically so far, I can identify 2 parts to my CFS: one viral-based and the other crashes induced by a specific set of Rx drugs, so far I notice that they are stimulants and SSRIs. I can only take very small doses of these drugs before I crash. If anybody can tell me why this is happening I would be very very grateful.
The only leads I have so far are that my body cannot detox a certain range of Rx drugs very well, this gives rise to build-up, overstimulation and then the awful awful crash. I have 2 leads suggested to me from the pple on here: my methylation and sulphuration cycles. This is interesting. I have always thought that Epsom salt baths helped me a great deal and I always thought that it was becos of the Magnesium. Now it is possible that it could be becos of the sulphate anions too. Also Betaine HCL helps me alot. Betaine is basically TMG (tri methylglycine). The strange thing is that I don't think TMG on its own helps me as much as Betaine HCL does I think. So this is basically where I am rite now. If I can manage these 2 components I can live a decent life.
I want to get my liver tested.
I want to get my NKC activity tested.
I have also started taking LDN. I dont think it is doing anything for now but that may also be becos of the Valcyte and other AV/ARVs. But i intend to transition out of them or at least bring their dosage down in the near future. Then I will know if the LDN really works for me or not.
My advice to anyone reading this is to get your Herpesvirus status tested. It is a big deal. Even seemingly general and non-specific AVs like Amantadine and Vermox will be incredibly helpful if part of your CFS is viral in nature. It almost always is. CFS is a moving target with many different components in play, that's what makes it so difficult to pin down. Also if you are very frustrated with your improvement, ask your doctor if he can change your diagnosis to MS. It will open up the way for many more therapies for you to try that can be very helpful if your insurance covers those.
As I work on this 2nd component to my CFS I am wondering if there are other parts to it. I do notice that when I fall sick, I almost always have to treat my immune system along with something else in order to get well. It is almost always my CNS for overstimulation or my adrenal glands for fatigue.
Again if anybody can help me with why I am responding so badly to RX drugs and how to test for this and how to resolve this, I would appreciate it very much.
I want to offer some words of encouragement to others going through this. I guess it shows how far along I have come and how confident I am in my recovery that I am able to think of others for once and not just thinking about myself. I think that what separates us from healthy people is very very little. We were all once healthy vibrant luminous beings that happened to be struck down and overwhelmed all at once by what life threw at us either self-deliberately or not. I still constantly watch my back everyday, wondering if this is the day I slip back into days of endless fatigue. But I also think that with the right tools, recovery is also right around the corner and sometimes can happen surprisingly fast.
jstefl
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undcvr
I took Valcyte for 8 months, and have been herpes virus free for three years now. The Valcyte did a lot of good things for me, but didn't fix everything as you indicate.
It is very important to get plenty of rest while on Valcyte. There is a big temptation to try to get back to your previous life, but you must remembert that you are still very ill, and adequate rest is necessary.
After the Valcyte I tried all kinds of supplements, but so far I have only found two things that have helped, LDN and methylation.
I started the LDN about five months ago. I had lots of trouble with headaches and such, so I backed off to a .2 mg dose three days a week. I slowly worked my way up to .6 mg three days a week, and then added .2 mg on the days that I didn't take the .6. I am now able to take .8 mg every day, and am feeling a lot better. The biggest difference I notice with the LDN is that my body seems to handle water better. I don't feel the need to get up in the middle of the night to use the bathroom now. I also feel " better". I don't know if I can define better real well, but somehow, LDN makes me happier. I take it in the morning because at first it disturbed my sleep, so I am in the habit of a morning dose.
I also have had great success with Richvank's methylation protocol. Again, I have had to start at a very low dose and work my way up. The improvement in energy has been pretty great. I now have to be careful to limit my activity during the day. I spent way too many years feeling so bad that I didn't have to worry about doing too much.
The LDN and methylation seem very compatible with each other, and between the two, I am feeling more hopeful that at any time in the last 20 years.
John
I took Valcyte for 8 months, and have been herpes virus free for three years now. The Valcyte did a lot of good things for me, but didn't fix everything as you indicate.
It is very important to get plenty of rest while on Valcyte. There is a big temptation to try to get back to your previous life, but you must remembert that you are still very ill, and adequate rest is necessary.
After the Valcyte I tried all kinds of supplements, but so far I have only found two things that have helped, LDN and methylation.
I started the LDN about five months ago. I had lots of trouble with headaches and such, so I backed off to a .2 mg dose three days a week. I slowly worked my way up to .6 mg three days a week, and then added .2 mg on the days that I didn't take the .6. I am now able to take .8 mg every day, and am feeling a lot better. The biggest difference I notice with the LDN is that my body seems to handle water better. I don't feel the need to get up in the middle of the night to use the bathroom now. I also feel " better". I don't know if I can define better real well, but somehow, LDN makes me happier. I take it in the morning because at first it disturbed my sleep, so I am in the habit of a morning dose.
I also have had great success with Richvank's methylation protocol. Again, I have had to start at a very low dose and work my way up. The improvement in energy has been pretty great. I now have to be careful to limit my activity during the day. I spent way too many years feeling so bad that I didn't have to worry about doing too much.
The LDN and methylation seem very compatible with each other, and between the two, I am feeling more hopeful that at any time in the last 20 years.
John
Thanks for your post John. I am actually quite physically active and have been working, just not full time. I think that if I know eaxctly what the cause of the CFS is, I can attend to it and treat it. I have been narrowing down the next cause of my CFS. I have trouble handling most psychotropic drugs and it seems that it is due to my liver cyp2d6 enzyme, or that family of enzymes anyway. It is responsible for detoxing 30% of all drugs and most psychotropic drugs, in my case, I am severely affected by stimulants and SSRIs.
Wish me well as I go about trying to figure a way to get this under control too
So far most signs point to Vit B3 as Nicotine that can possibly help.
Wish me well as I go about trying to figure a way to get this under control too
So far most signs point to Vit B3 as Nicotine that can possibly help.Hi everyone, so excited to update you with this piece of new information but I have recently decided to try coffee enemas. If what I read is true then coffee contains chemicals that make the gluthatione S-transferase pathway run and this is a very important pathway for our liver's glutathione detox. But I am not using just any coffee, I will be using Jamaica Blue mountain coffee in my enemas, why ? Bcos I deserve the best ! I will probably be using decafe as well as adding about 100-250mg of gluthatione to it.
If you dont hear from me on this post in a few weeks, that means I am probably dead and lying on some forensic's morgue table somewhere with the cause of death identified as: rectal/anal poisoning.
If you dont hear from me on this post in a few weeks, that means I am probably dead and lying on some forensic's morgue table somewhere with the cause of death identified as: rectal/anal poisoning.
heapsreal
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how do you have it, white and 2 sugars? lol. good luck.