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Question about the Lerner protocol

Tella

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I remember reading that he used to first treat the EBV infection and if you also had CMV, he waited to start on Valcyte until about a year after being on Valtrex and if you haven’t improved. Is that right? Can’t seem to find that info now. Isn’t that correct? I wanna start on his protocol but can’t find this missing info...I’m sure you don’t start both meds even if u have both infections and wait to see if valtrex works...
 

heapsreal

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I remember reading that he used to first treat the EBV infection and if you also had CMV, he waited to start on Valcyte until about a year after being on Valtrex and if you haven’t improved. Is that right? Can’t seem to find that info now. Isn’t that correct? I wanna start on his protocol but can’t find this missing info...I’m sure you don’t start both meds even if u have both infections and wait to see if valtrex works...
There was a number of people on valcyte and valtrex at the same time. The theory was valcyte didnt hit ebv as well as valtrex, so valtrex was for ebv and valcyte for cmv/hhv6. I think a few people herxed badly using both, so some people did the valtrex to knock ebv down and after several months would add valcyte to it or just drop valtrex and take valcyte. Many different variables people took.

I was an ebv/cmv type. Looking back i was on famvir and valcyte for a period, im not sure i really needed the valcyte for as long. Should have atleast stopped valcyte after 6 months and continued with famvir. I think the valcyte lowered my white cell count/neutrophils too low and still on the low side. There was a number of us on famvir for cmv and hhv6 that improved on it but not valtrex. So its possible famvir may have a slightly broader range of effects than valtrex.

Im still on famvir and holding quite well on it. Ive tried stopping a few times but get viral symptoms and or shingles outbreaks. So i stay on famvir now. I think the reactivations are due to the low nk function which is hard to improve permanently and low neutrophils. Off and on antibiotics for chronic sinusitis, again low neutrophils dont help.

Im not sure anyone gets back to 100% but im doing well and able to exercise hard, work etc. I have had periods of fatigue that can last a month or 2, usually sinusitis kicks in. Frustrating but its then time to cut out exercise and try to chillax and roll with the shit until passes. Usually when i might add immunovir or cycloferon to increase nk function to help get me out of the hole, a few b12 shots and extra sleep and surf the lounge alot. My strength in the gym has gotten back to pre cfs levels, stamina no. Makes me think that any mito dysfunction in cfs is mainly aerobic metabolism as anaerobic fitness is what helped me to regain lost strength. I was 31yo with cfs onset and now, struth 49, 18yrs of cfs. Time flies when you dont do alot 🤣🤣😂. Lots of trial and error and constantly adjusting/adapting to how your body is reacting.

Cheers
 

Tella

Senior Member
Messages
305
Likes
185
There was a number of people on valcyte and valtrex at the same time. The theory was valcyte didnt hit ebv as well as valtrex, so valtrex was for ebv and valcyte for cmv/hhv6. I think a few people herxed badly using both, so some people did the valtrex to knock ebv down and after several months would add valcyte to it or just drop valtrex and take valcyte. Many different variables people took.

I was an ebv/cmv type. Looking back i was on famvir and valcyte for a period, im not sure i really needed the valcyte for as long. Should have atleast stopped valcyte after 6 months and continued with famvir. I think the valcyte lowered my white cell count/neutrophils too low and still on the low side. There was a number of us on famvir for cmv and hhv6 that improved on it but not valtrex. So its possible famvir may have a slightly broader range of effects than valtrex.

Im still on famvir and holding quite well on it. Ive tried stopping a few times but get viral symptoms and or shingles outbreaks. So i stay on famvir now. I think the reactivations are due to the low nk function which is hard to improve permanently and low neutrophils. Off and on antibiotics for chronic sinusitis, again low neutrophils dont help.

Im not sure anyone gets back to 100% but im doing well and able to exercise hard, work etc. I have had periods of fatigue that can last a month or 2, usually sinusitis kicks in. Frustrating but its then time to cut out exercise and try to chillax and roll with the shit until passes. Usually when i might add immunovir or cycloferon to increase nk function to help get me out of the hole, a few b12 shots and extra sleep and surf the lounge alot. My strength in the gym has gotten back to pre cfs levels, stamina no. Makes me think that any mito dysfunction in cfs is mainly aerobic metabolism as anaerobic fitness is what helped me to regain lost strength. I was 31yo with cfs onset and now, struth 49, 18yrs of cfs. Time flies when you dont do alot 🤣🤣😂. Lots of trial and error and constantly adjusting/adapting to how your body is reacting.

Cheers
Thnx for the reply. Glad u are much better! How bad on a scale were u before and how good are u now? How long did it take to get better n how long r u planning to stay on the meds? This sounds fantastic. Many people do actually recover significantly when able to stick with it. Did u have a bad reaction or side effects on the meds? I only started my protocol yesterday n I feel there should be a support group for those like me as it’s tough going n can be hard to continue :) sorry for the many questions. Stories like yours give me hope! I was around your age at the onset too (typical with these viruses really...)
 

heapsreal

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Thnx for the reply. Glad u are much better! How bad on a scale were u before and how good are u now? How long did it take to get better n how long r u planning to stay on the meds? This sounds fantastic. Many people do actually recover significantly when able to stick with it. Did u have a bad reaction or side effects on the meds? I only started my protocol yesterday n I feel there should be a support group for those like me as it’s tough going n can be hard to continue :) sorry for the many questions. Stories like yours give me hope! I was around your age at the onset too (typical with these viruses really...)
The Lerner scale was a 3-4 and now an 8-9. Basically been 0n famvir since 2009. I basically stay on and will do as long as kidney and liver function are fine. Ive stopped a few times but get worsening of cfs viral symptoms and elevated t cells consistent with a viral infection. I cant get viral titres tested and measured so the lymphocyte T cell testing has been the best guide i can get for testing viral reactivation even though its non specific.

No sides from famvir but valcyte i had a herx type reaction for several months and lowered my neutrophils below normal range. Ive posted a fair amount on my antiviral experience you should be able to search easily. I saw improvements after 3 months but took a few years to stabilize where i am now. Ups and downs become less frequent and not as severe. 👍
 

Tella

Senior Member
Messages
305
Likes
185
Thats
The Lerner scale was a 3-4 and now an 8-9. Basically been 0n famvir since 2009. I basically stay on and will do as long as kidney and liver function are fine. Ive stopped a few times but get worsening of cfs viral symptoms and elevated t cells consistent with a viral infection. I cant get viral titres tested and measured so the lymphocyte T cell testing has been the best guide i can get for testing viral reactivation even though its non specific.

No sides from famvir but valcyte i had a herx type reaction for several months and lowered my neutrophils below normal range. Ive posted a fair amount on my antiviral experience you should be able to search easily. I saw improvements after 3 months but took a few years to stabilize where i am now. Ups and downs become less frequent and not as severe. 👍
fantastic. Thanks! Hope I can improve even tho my herx seems to be not that big........:/