Currently ill on valtrex - thinking of switching to famvir.

[nofuture]

My background:
I had mono in August 2011.
I had 4 months of hell afterwards, and I have NEVER FULLY recovered.
Currently 2 years of fatigue and loss of appetite and exercise intolerance
- I feel at a scale 5/10
http://www.treatmentcenterforcfs.com/energy_index_score/index.html

After trying everything on the planet from thyroid medicine to supplements, the only things left are anti virals .

I am currently on Valtrex 1.5 grams 4x daily - started 2 weeks ago.
-So far the experience is 50/50. I had a couple of good days, but after exercise I crashed bad.
-I am also feeling worse than before. I know its too soon to judge because a "herx" is possible, but i heard good results from FAMVIR without side effects.

I read the posts and member HEAPSREAL tells people FAMVIR worked wonders for him. Currently i'm covered by insurance. Although I do not have a doctor that is very knowledgeable on the topic, he is willing to try these antivirals based on Dr. Martin Lerner's protocol from Michigan. If I get FAMVIR he will prescribe it to me at the same dosage at 1.5g 4x daily

Im wondering if the recovery time is faster on FAMVIR than on VALTREX? Also, what about VALCYTE? I know liver monitoring is needed (NAC might help), but is it equally effective? I'm looking for someone with experience on these anti-virals who has made good progress.

My goal is to reduce my fatigue so I can get my life back instead of sleeping 12 hours a day and waking up tired. I'm wondering if I will ever recover to 100%?

 

[minkeygirl]

I think Heaps is back on Valcyte which he says works for him.

Hopefully he'll see this and chime in.

 

[nofuture]

Thanks. Valcyte will be my last hope. I'm not sure what will work anymore.

 

[Sushi]

nofuture

Have you been tested to see what other viruses you might have? This could make choosing a medication easier.

Sushi

 

[nofuture]

My hospital doesn't have any specific tests. I also don't know which ones to test for or where. If you guys can give me some idea. I live in Lansing, Michigan.
- I know they tested for igg and igm. One said I had ebv in the past and it's not positive anymore. I don't know how definite it is
- I was not tested for cmv or hhv6, titers or nk function.. My monocytes are high

 

[vamah]

You would want to get tests for various herpes virus infections because different ones respond to different drugs. If you have HHV 6 or CMV in addition to EBV (the one that causes mono) valcyte is really the best option. The tests are not expensive, but the valcyte is VERY expensive, so hopefully your insurance would cover it.

The only side effect I have experienced from valcyte is severe fatigue, but I know some people have worse problems. As long as you get regular bloodwork done, I wouldn't worry about the liver issues because the blood tests would catch it before it became serious.

I have been on valcyte for several months for HHV 6 and haven't seen big results yet, but it can take a year or more and my viral levels were extremely high.

 

[Ema]

You can test for the biggies - EBV, CMV and HHV6 at any old Labcorp or Quest.

These are the tests Dr L orders for me:

EBV Early Antigen Ab Prof, Qn
https://www.labcorp.com/wps/portal/!ut/p/c1/04_SB8K8xLLM9MSSzPy8xBz9CP0os_hACzO_QCM_IwMLXyM3AyNjMycDU2dXQwN3M6B8JG55AwMCuv088nNT9SP1o8zjQ11Ngg09LY0N_N2DjQw8g439TfyM_MzMLAz0Q_QjvYCKIvEqKsiNKDfUDVQEAF3QYtg!/dl2/d1/L3dJMncvd0RFQkZRQWhOUUFoRFFBaEFBISEvWUk1dy83X1VFNFMxSTkzME9HUzIwSVMzTzROMk42Njgw/?criterion=epstein barr anti diffuse&x=0&y=0

HHV6
https://www.labcorp.com/wps/portal/!ut/p/c1/04_SB8K8xLLM9MSSzPy8xBz9CP0os_hACzO_QCM_IwMLXyM3AyNjMycDU2dXQwN3M6B8JG55AwMCuv088nNT9SP1o8zjQ11Ngg09LY0N_N2DjQw8g439TfyM_MzMLAz0Q_QjPYCKIvEqKsiNKDfUDVQEAMDfYEE!/dl2/d1/L0lJWmlncFJBL0lKaEFDRW9BQkFUS0FBUUlLaXBpQUFRQy9ZSTUwc2x5b1FBISEvN19VRTRTMUk5MzBPR1MyMElTM080TjJONjY4MC9zaG93QWxsUmVzdWx0cw!!/?testId=407256&criterion=Human Herpesvirus 6 (HHV-6) Antibodies, IgG

https://www.labcorp.com/wps/portal/!ut/p/c1/04_SB8K8xLLM9MSSzPy8xBz9CP0os_hACzO_QCM_IwMLXyM3AyNjMycDU2dXQwN3M6B8JG55AwMCuv088nNT9SP1o8zjQ11Ngg09LY0N_N2DjQw8g439TfyM_MzMLAz0Q_QjPYGKIvEqKsiNKDfUDVQEAC5bWeA!/dl2/d1/L3dJMkEvd05FQkZRQWh0UUFnZ0EhIS9ZSTV3LzdfVUU0UzFJOTMwT0dTMjBJUzNPNE4yTjY2ODA!/?testId=857792&criterion=Human Herpesvirus 6 (HHV-6), IgM

CMV

https://www.labcorp.com/wps/portal/!ut/p/c1/04_SB8K8xLLM9MSSzPy8xBz9CP0os_hACzO_QCM_IwMLXyM3AyNjMycDU2dXQwN3M6B8JG55AwMCuv088nNT9SP1o8zjQ11Ngg09LY0N_N2DjQw8g439TfyM_MzMLAz0Q_QjfYCKIvEqKsiNKDfUDVQEALvGFag!/dl2/d1/L3dJMkEvd05FQkZRQWh0UUFnZ0EhIS9ZSTV3LzdfVUU0UzFJOTMwT0dTMjBJUzNPNE4yTjY2ODA!/?testId=408285&criterion=Cytomegalovirus (CMV) Antibodies, IgG

I'm wondering about the Valtrex dose. I'm using 1g four times a day. I wonder if your dose is too high?

Also, I'm not sure that Famvir is dosed 1:1 with Valtrex.

I have found Valtrex to be more effective than Famvir personally but it may have been that my dose was not high enough. I was only on Famvir 500 mg three times daily.

I wouldn't take Valcyte without evidence of CMV and/or HHV6.

Ema

 

[nofuture]

Ok thanks for the information. I just called lab corp. I don't think coverage should be a problem for my insurance. I will check with them. Just out of curiosity is lab corp about the same price as quest labs?. Also , are these all the tests, or are there any others I should get?

As far as the dosage, I have downloaded Dr. Lerner's protocol for practitioners and it showed that to my doctor which indicates that dosage.
http://www.treatmentcenterforcfs.com/documents/MECFSTreatmentResourceGuideforPractitioners.pdf

 

[Sushi]

Ok thanks for the information. I just called lab corp. I don't think coverage should be a problem for my insurance. I will check with them. Just out of curiosity is lab corp about the same price as quest labs?. Also , are these all the tests, or are there any others I should get?

As far as the dosage, I have downloaded Dr. Lerner's protocol for practitioners and it showed that to my doctor which indicates that dosage.
http://www.treatmentcenterforcfs.com/documents/MECFSTreatmentResourceGuideforPractitioners.pdf

Note: If you have Blue Cross coverage, Quest tests will be free. Blue Cross owns them.

I'd want to get good Lyme tests too as many of us are turning up with Lyme and/or co-infections. Igenex is a good place to start for testing but get the co-infections tested too.

Sushi

 

[Ema]

Ok thanks for the information. I just called lab corp. I don't think coverage should be a problem for my insurance. I will check with them. Just out of curiosity is lab corp about the same price as quest labs?. Also , are these all the tests, or are there any others I should get?

As far as the dosage, I have downloaded Dr. Lerner's protocol for practitioners and it showed that to my doctor which indicates that dosage.
http://www.treatmentcenterforcfs.com/documents/MECFSTreatmentResourceGuideforPractitioners.pdf

I see that the Valtrex is dosed by weights so that explains the discrepancy.

I also see the note about Famvir.

Thanks!

I believe Lerner also tested me initially for HSV1, mycoplasma, erlichia and Lyme. I'm not sure how good the erlichia testing is though through Labcorp and I know the Lyme testing is not good through Labcorp.

But EBV/CMV/HHV6 are the big 3, it seems.


Ema

 

[nofuture]

Ill talk the specifics with my insurance. I have Aetna and they are pretty good on covering most things. They do acknowledge CFS. I wish more doctors were aware about it. Sushi I am wondering about the Lyme test too. I cant find a testing site in Michigan. Also, to get these labs do I have to get them ordered by my doctor or can i get them and insurance will still cover them?

 

[Ema]

Ill talk the specifics with my insurance. I have Aetna and they are pretty good on covering most things. They do acknowledge CFS. I wish more doctors were aware about it. Sushi I am wondering about the Lyme test too. I cant find a testing site in Michigan. Also, to get these labs do I have to get them ordered by my doctor or can i get them and insurance will still cover them?

IgeneX is the most popular Lyme test. It is a specialty test, ordered by your doctor. You get a kit in the mail which you take to a lab/hospital to get your blood drawn and they ship it off. Quest does this in my area but not LabCorp.

The other labs you can get by yourself through a company like Walk-in Labs.com prepaid or you can get an order from your doctor for insurance to cover the testing.

 

[nofuture]

Ok. Ill ask my doctor to order the tests.
Ema I was wondering if i can get the links to the quest labs for EBV HHV6 and CMV so i can get some printouts for my doctor and to have the correct labs?

 

[Ema]

Here's a link to the Test Center at Quest:

http://www.questdiagnostics.com/testcenter/TestCenterHome.action

I don't use them so I don't have the links handy.

Ema

 

[nofuture]

Does this one sound right ?
http://www.questdiagnostics.com/tes...empe 1255 W Washington St (800)766-6721 (QSO)

 

[SOC]

My hospital doesn't have any specific tests. I also don't know which ones to test for or where. If you guys can give me some idea. I live in Lansing, Michigan.

You are close enough to Dr Lerner that it would be worth it to see him for expert testing and evaluation. He has decades of experience using antivirals for ME/CFS, so you'd probably get the best advice for which antivirals to use and how to handle any problems you have with them.

Since you have a doc willing to prescribe antivirals, you don't have to stay with Dr Lerner long-term if the travel gets to be too much, but the initial testing and evaluation would be worth the effort.

 

[nofuture]

How much does this Dr. charge? I heard its an arm and a leg. Did your insurance reimburse you?

 

[SOC]

How much does this Dr. charge? I heard its an arm and a leg. Did your insurance reimburse you?

Dr Lerner was not expensive at all. Testing is expensive, but it's the same everywhere. Yes, my insurance reimbursed me for both doctor costs and labs.

BTW, Dr Lerner is an Infectious Diseases specialist, so he is well qualified to investigate and treat EBV, CMV, HHV6, etc.

 

[nofuture]

If things don't work out with my doc ill have to give him a try. Meanwhile im going to ask my doctor to order these tests and see if I do better on Famvir. I'm stuck in a bad situation. My student insurance expires mid November. Because i dropped classes I cannot get this kind of insurance anymore. So the coverage will not be as good. I'm not sure what insurance to get after this.

 

[SOC]

If things don't work out with my doc ill have to give him a try. Meanwhile im going to ask my doctor to order these tests and see if I do better on Famvir. I'm stuck in a bad situation. My student insurance expires mid November. Because i dropped classes I cannot get this kind of insurance anymore. So the coverage will not be as good. I'm not sure what insurance to get after this.

You are fortunate to have a local doctor concerned enough and willing enough to treat you with any antivirals. Many of us would be thrilled to have a local doctor like that.

That said, it is highly unlikely that your local doc knows enough about ME/CFS to give you all the treatment you need. If you haven't already, you might want to give your local doc a copy of the ME/CFS Primer for Clinical Practitioners. While it's not perfect (In my opinion it's weak on pathogen treatments), it's probably the best document we have to help unknowledgeable docs help us with secondary conditions and symptomatic treatments.

For encouragement -- my daughter was in a place similar to yours a few years ago. She was about to drop out when we went to see Dr Lerner. Under his care, she got enough better to stay in school (with good grades) that semester. She stayed in school, continued to improve and is now fully functional, in graduate school, and engaged to be married.