NEW by Dr. Lerner - ME/CFS Treatment Resource Guide for Practitioners & ME/CFS video

[SOC]

What dose of Valtrex have you been taking SOC? The same that Lerner recommends?

Yes, Dr Lerner prescribes it for me.

 

[SOC]

I am a Dr Lerner patient. I have been with him for 4 years. I was treated with valtrex for my EBV. I was treated with valcyte for CMV and HHV6 and doxycyline for mycoplasma pnuemoniae. I started as a 1 on his energy index. I am now about a 4.5. I could not hold a job or do anything on a consistent basis, but there is noticeable improvement. I can go out and do something once in awhile and feel "normal. "My family notices a huge change in me. As I could not attend any holiday functions unless I went and laid in bed. Now they can pretty much count on me being there.

My cognitive abilities have improved noticeably. My tachycardia was improved. I still get the flu like malaise, but not everyday like before.

I was taken off valcyte the last visit, mid Jan. Not because Dr. Lerner wanted to take me off, but because insurance stopped paying and it is very
expensive. I feel like I have had some withdrawal from going off valcyte after 4 years. I am going to ask Dr. Lerner about it on my next appt. which is this
Weds.

Did I think if was worth it?? Yes, I do! My quality of life is much better. Yes, there are still ups and downs, but now I least I have some ups where before there were none.

From being around his office and talking to the various people we have met along the way, my unscientific observation is that the young people have the better recoveries.
The few young people I know, I have gotten to a 9-10 on his scale. The people in their 50-60's have all improved, but not to that number. One is an 8, another a 7 and me a 4.5. It seems like everyone jumped about 3 or so on his scale. Being I started lower, I still went 3 or so, but am not a 7-8 yet.

Also, I have the co-infection of mycoplasma which he says are harder to treat. The other people I know only had the viruses. They have a better chance of recovery.

If I were a young person, I would find myself a way to Michigan.

This is consistent with my family's experience. My college-age daughter is in full remission (from 5-9.5). I'm still fighting but have improved from 3-5.5, but have setbacks. My uncle (in his 70's) stayed on antivirals for something like 8 years, going from 7-10. So an approximate 3 point gain seems about right to me.

Perhaps the longer we've had the viruses or the weaker our immune systems the more entrenched the viruses are or the deeper they are in hard-to-get-at areas of the body (brain, bone marrow). If that's true then it might take longer treatment and higher doses to get at the infections. Or maybe we need to add immune modulators (immunovir, ampligen) or something like Rituximab that quickly kills infected cells before they infect others.

 

[Wally]

I believe Dr. Kogelnik and Dr. Montoya are using antiviral protocols similar to Dr. Lerner's. Dr. Montoya is located at Stanford Medical Center in Palo Alto, California and Dr. Kogelnik is just a few minutes away in Mountain View, California.

Last year, Montoya's wait list was about 3 years. Getting an appt. with Dr. Kogelnik was much faster because he just opened up his clinic at the end of 2009. He now has over 1000 patients with lots of interest from around tbe globe in his Rituxan study. Wait time for new patients may have changed, so it would be a good idea to call each office to find out the current status of scheduling an appt. as a new patient.