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Confusing about blood test and the time of it

Messages
16
Hello,

i talked with my doctor and finally he said that i will be on Valcyte 450mg twice a day, he put me on acyclovir one month and did literally nothing, no improvements, anyway , he said due to my low anti-bodies ( not very high ) , i will be on Valcyte twice a day for one month and see if there is any improvements

this is my blood test before acyclovir
t5Aqo0x.jpg


i just stopped acyclovir from 10 days and will retest again to start valcyte with known anti-bodies base,
anyway, he said that after 1 month do blood test again, so i don't know should i wait 1 month for doing blood test again or should i wait less ? , or more ??
also is there is any other blood test should i do ?
and also should i take valcyte for one month and then stopped it for another one month and do blood test again ??
any preparation before blood test ?

i really don't know.

Thanks
 

Hip

Senior Member
Messages
17,874
i will be on Valcyte twice a day for one month and see if there is any improvements

Dr Lerner found that it takes 3 or 4 months to start seeing benefits from Valcyte when patients have high herpesvirus titers. So 1 month may be too short.
 
Messages
16
@Hip ,

Thank you for reply,

but yet i don't know if i have high herpes virus titers or not, maybe mild , not too low and not too high, anyway, i searched many times but didn't find an answer, i stopped acyclovir from 1 month, should i wait two months to do blood test ?, i mean how much time between stopping the anti-viral and doing blood test ?

Thanks.
 

Hip

Senior Member
Messages
17,874
i stopped acyclovir from 1 month, should i wait two months to do blood test ?, i mean how much time between stopping the anti-viral and doing blood test ?

Why do you want to take a second virus test? You have already been tested.
 
Messages
16
Why do you want to take a second virus test? You have already been tested.

because doctor told me that we want to start from the base to watch what's going on, also to see if acyclovir did anything or not, so that he told me to stop acyclovir and after one month from stopping acyclovir do blood test again
 
Messages
16
i don't know what Dr Lerner mean by "Every 3 months retest the antibodies", every 3 months when i'm on Valcyte ?, or stop valcyte and retest ?
ALSO, if there is any improvements after 6 months or 4 months should i stop the anti-viral or discuss it with my doctor ?, what if there is no improvements after 4 months ?
 

Hip

Senior Member
Messages
17,874
i don't know what Dr Lerner mean by "Every 3 months retest the antibodies", every 3 months when i'm on Valcyte ?, or stop valcyte and retest ?

I think Dr Lerner means that you should test every 3 months while you still continue to take Valcyte. It takes a long time to treat ME/CFS with Valcyte.

If you look at "Table 3 from Dr Lerner's 2010 Valcyte and Valtrex Study" in this post, you see that improvement on Valcyte is slow. In Table 3, patients start with an average Energy Index Point Score (EIPS) of 4.21, and it takes 2 years to reach an EIPS of 6.25.


But because your herpesvirus titers are not very high, herpesvirus may not be your problem. ME/CFS is also linked to enteroviruses (coxsackievirus B and echovirus). If your ME/CFS is caused by enterovirus, then the treatment Dr John Chia uses is the immune stimulant oxymatrine. You can buy oxymatrine online quite cheaply.

Dr Chia also uses tenofovir for treating ME/CFS.

Unfortunately it is hard to find a test for coxsackievirus B and echovirus, because most tests are not sensitive enough to detect the chronic enterovirus infection in ME/CFS. But even without testing, you can still try oxymatrine.
 
Messages
16
it's hard to decide, i'm afraid to start valcyte and get no improvements, my doctor said to try valcyte for one month and see, but as Dr Lerner said noticeable improvements after 4-6 months,
i was thinking on something, what about trying oxymatrine ( i don't know what is the protocol of oxymatrine ) and see if there is improvements, if not; will start antibiotics protocol; if there is not improvements the last choice is try Valcyte, i think what i'm thinking in is logical, but i don't know if i'm doing it wrong or not

anyway, i'll do the anti-bodies again if it become lower than this so maybe the problem not from viruses, but i have high bilirubin level since being sick and other symptoms of virus infection, maybe i have another herpsvirus ?, well i don't know, ALSO from 6 days ago i just got cold and flu, didn't recover from it from 6 days ago and my symptoms became worse, ANYWAY, after recover from flu and cold i will do blood test again, i don't know what should i do totally but i think doing the oxymatrine protocol first (please share the protocol) , then antibiotics, then valcyte ( if there is no improvements of valcyte after 6 months i will stop it )
 

Hip

Senior Member
Messages
17,874
i was thinking on something, what about trying oxymatrine

If you get benefits from oxymatrine, the benefits appear after around 2 months, so it is quite fast. Some info about oxymatrine dosing found here.

My roadmap also contains a section on oxymatrine. You start off with one tablet a day, and slowly build up to taking around 6 tablets a day over a few weeks.



You can buy oxymatrine here:

Equilibrant oxymatrine tablets (Dr John Chia's brand) available at equilibranthealth

Alternative Medicine Solutions oxymatrine (300 mg oxymatrine per capsule) available here:
alternativemedicinesolutionbetterlifealchemistlaborganicpharmacyamazon

White Tiger brand oxymatrine (200 mg oxymatrine per tablet) available here:
chineseherbsacuatlantanaturalnutritionalsgoldenneedleonlinemaxnaturebiomedonline (Netherlands)

I found the White Tiger brand (which contains both matrine and oxymatrine) caused dizziness for an hour or so after taking each tablet, whereas the Alternative Medicine Solutions brand (which contains only pure oxymatrine) did not cause this side effect.

Note that Dr Chia says oxymatrine is not recommended for people with autoimmune tendencies or seizure disorders.
 
Messages
16
Thank you i'v read and checked them all
did you use inosine, rifampin , lamivudine, tenofovir with oxymatrine ?, or just oxymatrine ?
it's also a big deal if i treat viruses that i don't know if i have it or not, so if i will use all those anti-viral should i do blood test, as you said blood test not accurate sooo....?
 

Hip

Senior Member
Messages
17,874
did you use inosine, rifampin , lamivudine, tenofovir with oxymatrine ?, or just oxymatrine ?

I tried oxymatrine on its own, but it did not work for me (and I have high antibody titers to coxsackievirus B4). Then later I tried oxymatrine again, this time taking rifampin for one week, according to Dr Chia's protocol. But that did not work for me either. But Dr Chia says oxymatrine only makes major improvements in about 30% of patients with enterovirus. So even if you have enterovirus, it does not work for everybody. It is a matter of luck if it works for you.

I tried lamivudine (Epivir) for a few months on its own, but that did not help me. But Chia says lamivudine only works for about 33% of patients (and even when it does work, lamivudine only brings mild improvements, not major improvements).

Tenofovir I started taking, but it quickly created mental health side effects, so unfortunately I had to stop. So I have not full tested tenofovir on myself. But if tenofovir works for you, it can lead to major improvements.



If you would like to do a blood test for coxsackievirus B and echovirus, ARUP Lab in the USA offers micro-neutralization blood tests which are sensitive enough, but they are expensive (about $440 each test).

There is also the Hellenic Pasteur Institute in Greece which offers a neutralization blood test for coxsackievirus B (but not echovirus) which should be sensitive enough, for 68 euros.


Originally when I first tried oxymatrine, I had not tested for enterovirus. I took oxymatrine even without knowing whether I had enterovirus. Only later did I test for enterovirus, and found I had high antibody titers (1:1024) to CVB4.
 

Hip

Senior Member
Messages
17,874
@Hip, I didn’t know you had such high antibody titters. Did they decrease over time?

I never retested, but the blood test I had for enterovirus was taken 13 years after first catching my virus in 2003, so if I still had high antibody levels after all that time, it's likely they are still high now. Most ME/CFS patients tend to maintain high antibody levels for long periods.