Hi everyone,
Just wanted to share something with you. Might give hope to others.

I was dx in 1997 with CFIDS. All anyone ever did was give me antidepressants and B-12 injections. Neither worked. Got so bad had to go on SSD.

Last month found a new infectious disease doctor who specializes in CFIDS and his research is well-known. His name is Dr. Martin Lerner, Beverly Hills, MI.

Anyway, he put me through a bunch of tests and found that my CFIDS is being caused by Cytomegalovirus infection.....in my heart!

His research has shown that most CFIDs patients have either EBV or CMV or both infecting their heart. This is why the fatigue is so bad. It reactivates in your body causing all kinds of viral type symptoms.

Anyway, he put me on Valcyte 450 mg, and said I will be on it for 6+ mos. He watches his patients very closely for adverse reactions. But he swears he can get a lot of your life back.

I am so excited. I saw him again yesterday and he asked me how I was feeling and I said very tired! He said that was excellent! He told me I would probably feel like that and maybe worse for up to 6 weeks, as that is the herxheimer reaction. Herxheimer is where due to viral die off you get sicker at first until some of the virus has been killed and eliminated from your body.

I'll let you all know how this goes. For now, I am so excited at possibly getting some of my life back!

Suzette

Hi Suzette -

How do you get tested for this? I have tested positive for lyme, babesia, and ehrlichia and have a lot of heart involvment at this point. I know that when your body if fighting infection that other opportunistic viurses and bacterial infections can start.

Thanks for any more info. you can give and I am so glad you are feeling better.

ncgirl88

Hi ncgirl88,
I had been tested before for Cytomegalovirus and it always came out positive, but no one did anything.

Your best bet is to ask for them to test you for it. It's a blood test. Then if that comes out positive, ask them to do a EKG, Holter monitor and echo of your heart.

These tests should show abnormal T-wave changes. They either flatten or invert somewhat. If you have both a positive result on the blood test and T-wave changes, you can be pretty sure you have this infection.

For more information, check the web for CFSviraltreatment or look for Dr. Martin Lerner, Beverly Hills, Mi. It should come up with his site.

Also, he has found that the EBV virus can do the same thing. Sometimes people will have both EBV and CMV infecting their heart. I am sure that if you contacted him once you were tested, he would help guide your doctor in treatment. He is a very nice person and had the same illness himself, that is why he got so interested in it. He is now cured of his problems.

Good Luck, and please let me know how things go for you ,OK?

Suzette

:confused:

I have been tested for the Cytomegalovirus, but I haven't gotten my tests
back yet.

In all of my searching and reading about this virus, I have NEVER seen or heard anything about this affecting the HEART !

Am I missing something here ?

Gee Gee

Gee Gee,
I haven't found a lot in the research area about it either. However, if you look for viral induced cardiomyopathy, Cytomegalovirus infection in heart, etc. You will find some info. Or you could check out Dr. Martin Lerner's work on it. He isn't the only one who has found the connection but he is the foremost pioneer in this area.

Keep looking, and you'll find something on it. Believe me it's real!

If I can answer any questions for you I will be happy to. I just don't know if I have enough info myself but I'll try to get the answer if you ask a question.

Suzette

well, I have Human Herpes 6, CMV, and EBV IGG negative level, but no one really does anything.


I am diagnosis with CFIDS as well, but My doctors says just live with it.

Hello,
I you understand and I am in the same boat. I've been dx with HHV-6 as well as the CMV and EBv. However, the last test I had for EBV it didin't show up, so my first test may have been wrong.

It is difficult to get doctors to take any of this seriously. But all I can do is to tell you to keep looking for a doc that will cooperate.

Good luck,

Suzette