Start a List of Doctors who Treat Mulv Related Viruses (Human Gamma Retro Virus)?

[Mya Symons]

I am willing to travel long distances for a doctor that is more open minded. I have not even been able to get my doctor to agree to take blood for the assay/antibody test. She is a big believer in the Psychosomatic theories. Is there anyway we could start a list here of doctors who believe that MuLv related viruses could be the cause of CFS and the names of those who are willing to start treating for MuLv related virus infection?

 

[BEG]

Great idea, Mya. I know my doctor will sign off on the tests, and my medicare advantage plan pays for them. As for treatment, it's my guess that the specialists will handle that. Try calling the Hunter Hopkins Center. Dr. Black is going to the symposium. Perhaps she'll be learning about treatment?

 

[muffin]

Thanks for that info Brown-eyed girl.

And also, you can have Jimbob back. I found another hottie!!!
Hugs - Muffin

 

[BEG]

Huh, Muffin? Another hottie on the forums, you say?! Please, do tell.


Mya, I'm hoping someday there will be drug trials (surely, they're coming). I plan to try to get into one.

 

[ukxmrv]

Does anyone know if Dr Enlander is supportive?

 

[Daffodil]

i think dr. kogelnik in san fran might be supportive. he worked with montoya before. also, dr. brewer in kansas. i heard dr. holtorf is thinking about treating too.

 

[SickOfSickness]

Great idea, let's also put what type of doc they are? ID, neuro, PCP, etc. And waiting time for an appointment or anything else you know.

 

[MEG]

I have to recommend that Hunter Hopkins be put high on this list. Dr's Lapp and Black are both very good. Office staff is second to none in trying to be helpful...Pam and all. They do care about their patients in a special way. Waiting time for Dr Lapp appears to be a few months, Dr Black ...less waiting time. They are also very willing to work within our financial constraints....many of us have little money left. They understand.

Dr Black works with my primary MD (who is sure CFS is PTSD) gracefully. Everything that can be done and covered by Medicare etc, she has my primary do and then send results to HH. This saves a lot of money. I find Dr Black willing to try anything that her patients feel might be effective. I am hoping for a more definitive treatment protocol soon....

 

[me2]

ukxmrv, maybe you should post your question about Dr. Enlander as a separate thread. I don't know the answer, but I don't think you will find out with your question buried within this thread. Just my thought. Hope you find out.

 

[Nielk]

ukxmrv, maybe you should post your question about Dr. Enlander as a separate thread. I don't know the answer, but I don't think you will find out with your question buried within this thread. Just my thought. Hope you find out.

I am a patient of Dr. Enlander and he is supportive. He took my blood sample last week to be tested for MRV viruses. He always believed that ME/CFS is viral related.
He thinks it's still early in the game and there is a lot more we need to find out about this new discovery and how to treat it.
But, when I told him that I would still want to find out if I personally have it, he told me to come in and he'll take a sample.
I'm not sure where he sent it. I have a feeling that he sent it to Alter.

 

[Mya Symons]

I have to recommend that Hunter Hopkins be put high on this list. Dr's Lapp and Black are both very good. Office staff is second to none in trying to be helpful...Pam and all. They do care about their patients in a special way. Waiting time for Dr Lapp appears to be a few months, Dr Black ...less waiting time. They are also very willing to work within our financial constraints....many of us have little money left. They understand.

AND

Originally Posted by Neilk--"I am a patient of Dr. Enlander and he is supportive"

Where are these docs located? Are they near the Colorado or Wyoming area by any chance?

 

[Nielk]

Dr. Enlander is located in New York City

 

[SickOfSickness]

Lapp & Black (at The Hunter Hopkins Center) are apparently in Charlotte NC... http://www.drlapp.net/

 

[JillBohr]

Does anybody know of any doctors in Ohio? I am sitting on 2 XMRV test kits that are waiting for a doctor to sign them. My kids ped will not do it. I am going to ask my son's neurologist this week but I am not holding out much hope.