What specific EBV and other tests are doen before adminsitration of Valtrex, Famvir, etc.?

[AFCFS]

I am trying to make sense of the many posts on Valtrex, Famvir, etc. in light of this, and similar, post - Discovery could lead to faster diagnosis for some chronic fatigue syndrome cases. Some contributors seem to take Valtrex, Famvir, etc. based on symptoms presented to a doctor and doctor's Rx without lab testing, some seem to indicate an "EBV test" and doctor's Rx, others seem to have self-prescribed via the Internet.

Are the "EBV tests" being done, the "standard" Epstein-Barr Virus Antibodies test or are there other EBV tests being conducted when contributors mention an EBV test?

According to much of the info in Discovery could lead to faster diagnosis for some chronic fatigue syndrome cases, the "standard" Epstein-Barr Virus Antibodies do not seem to be the definitive guide as to treatment, but they do seem to be the definitive guide for many (most) medical professionals.

Given the high cost of seeing doctors, especially CFS specialists, it may be beneficial if we are better informed to know what to ask for. It may reduce the number of appointments and time in therapeutic trials if we were able to "guide" the doctors down the right path.

If looking at the viral paradigm toward a solution, in addition to specific EBV tests (which would be?), should we also be asking for CMV tests? Is there anything else? I would rather do a bunch of tests at once, from one doctor or clinic, and get a baseline than running around to a bunch of doctors pleading my case and getting some tests with one and some tests with another.

 

[Sushi]

AFCFS

I had a more comprehensive EBV test, but the results are buried in files and I don't have time to hunt them down now--but a knowledgeable doc should be able to give you a test that will check for "likely reactivated EBV."

And yes, we should check for CMV and other herpes viruses as well as C. Pneumonia Lyme, Bartonella and some other infections. Finding good tests is tricky though unless your doc is really up an all this.

Best,
Sushi

 

[snowathlete]

Hi AFCFS, this is an avenue I have been looking at for a while and thinking about going down. Heapsreal knows alot and has experience taking several of these drugs too.

What I have read suggests that they are generally pretty safe drugs, however some people with ME react badly to stuff, and that includes these anti-virals.

From the research I did I found about equal numbers of people on here taking each of the three drugs Valcyte, Valtrex and Famvir. More people had problems with Valcyte, though overal more people reported better results with it, so if you can afford it i think its worth trying. I think you have to have more regular blood test to check liver etc with Valcyte and Valtrex, compared to Famvir.

Famvir seems to be the best tollerated, though there is less research data about it with ME, at least i havent come across as much. But some evidence suggests it is as good as the other two.

Dr Lerner is one of the main experts in ME using these drugs and his site is very good. It talks about the tests he reccomends and the treatment and doses etc.

My plan is to see Dr Meirler in Belgium because it is closer to me and have these and other blood tests. Based on the blood tests i will have a treatment which may include one of these. My view is that with so little really known about ME its good to get any information you can that is factual about you specifically, so i think testing is well worth it. Having said that, if i couldnt afford it then im sure that wouldnt stop me trying a treatment like this and self prescribing if necesary.

I already had a basic EBV test with the NHS, but this just said i had had EBV at some point. I already knew that really. Most people would test positive, even healthy people, so you really need to have more in depth tests to find out if it is active or if you have current antibodies to variour EBV proteins. Same is true for HHV6 which is very common in the population, and CMV is less common but well worth checking too.

Lerner usually uses Valtrex for EBV and Valcyte if you have the others.

google his site. let me know if you cant find it.

 

[cfsme23]

EBV, CMV, HHV-6 I would suggest, IgG and IgM on those...also perhaps more of a complete panel on the EBV. Also co-infections such as Chlaymdia Pnemoniae, Mycoplasma and Lyme. Then it's how long is a piece of string on any additional testing you want to do. I am keen to start on Valcyte next year and it'll be those above tests I will be having in order to establish whether or not I am a viable candidate for it still, and whether I need to attack any co-infections.

 

[heapsreal]

cd8 lymphocytes/t cells are also an indicator of ebv/cmv/hhv6. Its a good test if u cant get viral titres done so if positive to these herpes viruses igg and have high cd8 t cells then its a good chance they are reactivating.

 

[RUkiddingME]

I am trying to make sense of the many posts on Valtrex, Famvir, etc. in light of this, and similar, post - Discovery could lead to faster diagnosis for some chronic fatigue syndrome cases. Some contributors seem to take Valtrex, Famvir, etc. based on symptoms presented to a doctor and doctor's Rx without lab testing, some seem to indicate an "EBV test" and doctor's Rx, others seem to have self-prescribed via the Internet.

Are the "EBV tests" being done, the "standard" Epstein-Barr Virus Antibodies test or are there other EBV tests being conducted when contributors mention an EBV test?

According to much of the info in Discovery could lead to faster diagnosis for some chronic fatigue syndrome cases, the "standard" Epstein-Barr Virus Antibodies do not seem to be the definitive guide as to treatment, but they do seem to be the definitive guide for many (most) medical professionals.

Given the high cost of seeing doctors, especially CFS specialists, it may be beneficial if we are better informed to know what to ask for. It may reduce the number of appointments and time in therapeutic trials if we were able to "guide" the doctors down the right path.

If looking at the viral paradigm toward a solution, in addition to specific EBV tests (which would be?), should we also be asking for CMV tests? Is there anything else? I would rather do a bunch of tests at once, from one doctor or clinic, and get a baseline than running around to a bunch of doctors pleading my case and getting some tests with one and some tests with another.

Here are the tests I had done a couple of weeks ago which might help:

HHV6 IgG and IgM panel, Herpes simplex 1 and 2, EBV early antigen, EBV EBNA AB, EBA VCA IgG and IgM and natural killer cell panel. To confirm my elevated HHV6 I also had a Rapid HHV6 culture, antigenimia and Nested PCR through Wisconcin Viral lab (positive)

I also had a thorough workup last year which included:

CMV IgG and IgM, M. Pneumoniae AB IgM, Parvovirus IgG, Coxsackie, Lyme panel, heavy metals, B12, all hormones. Hope this helps

 

[wishing well]

I dont think you are in the uk, like me. But if its any help mine was the testing for titres. I have high titres to EBV & CMV. About 260 ish i think. I have done6 wks valtrex, a break, then 1 month aciclovir, now on imunovir for i month, then back to valtrex for 2 mths. All the while doing the abx for lyme and cpn (as best i can, struggling with those). Plus working on the chelation and biofilm areas as best i can. Phew.

 

[charlie1]

Here are the tests I had done a couple of weeks ago which might help:

HHV6 IgG and IgM panel, Herpes simplex 1 and 2, EBV early antigen, EBV EBNA AB, EBA VCA IgG and IgM and natural killer cell panel. To confirm my elevated HHV6 I also had a Rapid HHV6 culture, antigenimia and Nested PCR through Wisconcin Viral lab (positive)

I also had a thorough workup last year which included:

CMV IgG and IgM, M. Pneumoniae AB IgM, Parvovirus IgG, Coxsackie, Lyme panel, heavy metals, B12, all hormones. Hope this helps

RUkiddingME - I see you are from Canada, like me. Did OHIP pay for any of those tests and if so, how did you get your doctor to agree to order them for you?

 

[RUkiddingME]

RUkiddingME - I see you are from Canada, like me. Did OHIP pay for any of those tests and if so, how did you get your doctor to agree to order them for you?

Hi Charlie 1- not sure how we can private message eachother through this site. I would be happy to tell you where and how much I had to pay for all this testing in the US and how I had to go about getting it ordered. It's cost us a fortune so far but if it's the only way to maybe get any type of life back it's worth it. Unfortunately Canada is not the place to be with this illness. After all my travels and determination I think I'm finally making some headway in getting appropriate treatment. I will be starting a blog on this site regarding my Valcyte experience (just started taking it today). Cheers!

 

[charlie1]

RUkiddingME- very much hoping that Valcyte will work for you! Glad to hear you will be blogging re: your experience.

I would love to message about the testing you've had done. You can find out how to do this through reading up on 'Conversations' which is in 'Wiki' found in the header at the top of this page. I will start our conversation/message so that all that's left for you to do is reply. You should be Alerted - top right of page, next to your inbox.
Thanks!!