I need a new doctor!!!

[Mandy]

Hey Friends,
I need a new doctor. I'm willing to travel to the ends of the earth, if I can find a doc to treat me.
I've been seeing a rheumatologist for several years, who has diagnosed me with CFS, but she won't do any of the antiviral treatments, or LDN, or really anything besides the Cymbalta that I'm on. I'm so fed up with her. Last year I found a naturopath to do testing for me, and tested positive for EBV and Parvo - but, I was notified last month that he was committing insurance fraud and has lost his license!!!
Help?
I looked over the list of the doctors listed in this site, but have any of you seen them?
Do you have doctors you recommend?
My husband will fly me out to see anyone!
Give me your recommendations, please
-Mandy

 

[Who Me?]

Where are you? US? UK? Oz?

Also who you see depends on what the root cause is. Viral? Immune? @IrisRV Posted about this but I can't remember where. Which doc to see.

Kaufman at OMI does antivirals. Levine in Ny? Chia in Torrance CA is enterovirus, Montoya does viruses Hunter Hopkins in NC.

Gordon is mostly Lyme.

 

[Hope]

Check out Hip's Roadmap to ME; at the very end he lists the top few dozen doctors for ME and what they focus on:

https://sites.google.com/site/cfstestingandtreatmentroadmap/

@Mandy

 

[Mandy]

Duh! Sorry, in my mind, I added my location!
I'm in Washington state - USA
I tested postitive for Epstein Barr and Parvo virus. My naturopath had me taking Lister V, naturopathic antivirals, and I got moderately better on them. He was just about to test me again, and then move me onto another antiviral, when he lost his license.

I don't have Lyme or Entero. I did test positive for Ep Barr and Parvo.
My rheumatologist treats me for RA, even though all of my blood work doesn't show the RA markers.
I have severe post exertional malaise, sore throat, and now heart arrhythmia, I sleep about 14-16hrs a night (had a sleep study done - no apnea), and am lying down in bed most of the day. I'm able to do one thing a day, cook or fold laundry....that's about it. I'm positive I have ME/CFS.

I want a doc who knows their shit about ME/CFS. I have a 2 inch file of all of the blood tests I've requested. I just need a doctor to start actually treating the ME.....I think with antivirals.

 

[Who Me?]

@Mandy try Kaufman in California or Montoya at Stanford

Kaufman is at open medicine institute He's in Silicon Valley area

Also. If you want antivirals I can tell you where to get them. I started myself on acyclovir and it helped. Send me a pm.

You can get acyclovir, valtrex, Famvir even Valcyte.

 

[Mandy]

Check out Hip's Roadmap to ME; at the very end he lists the top few dozen doctors for ME and what they focus on:

https://sites.google.com/site/cfstestingandtreatmentroadmap/

That is an awesome link! Thank you. I just skimmed it, and saw all the tests I've had done!
But the doctor link is great. It looks like Dantini, or Klimas, or Montoya would be what I'm looking for.
Thank you

 

[weyland]

As far as I know Klimas' clinic is still closed to new patients. As Who Me? said, I would go for either OMI or Stanford. OMI doesn't take insurance but Stanford does.

You may come across Harborview Chronic Fatigue clinic in your searching in your state but I wouldn't bother with them.

 

[Who Me?]

I do think chia rx antivirals. It's almost who you can get in to see faster. I'm not sure what the waiting lists are for anyone.

 

[Folk]

Dr. Kaufman's waiting list is getting each time longer but I think he is the best option.

He is my Dr. too and I would recomend him to anyone that can afford and go see him.
He works on Open Medicine Institute in Mountain View.

 

[Strike me lucky]

Sounds alot like ebv which u can treat with famvir or valtrex. Parvo is harder to treat but may improve if ebv treated. Ivig is generally used for parvo but i think just trying to improve immune system can help.

Sounds like the immune herbs are helping some so i would stay with that. Id consider adding famvir and start slow like 250mg once a day and work up to 500mg twice a day. It can take a few months to improve.

Have you been tested for cmv hhv6?

 

[Cort]

Duh! Sorry, in my mind, I added my location!
I'm in Washington state - USA
I tested postitive for Epstein Barr and Parvo virus. My naturopath had me taking Lister V, naturopathic antivirals, and I got moderately better on them. He was just about to test me again, and then move me onto another antiviral, when he lost his license.

I don't have Lyme or Entero. I did test positive for Ep Barr and Parvo.
My rheumatologist treats me for RA, even though all of my blood work doesn't show the RA markers.
I have severe post exertional malaise, sore throat, and now heart arrhythmia, I sleep about 14-16hrs a night (had a sleep study done - no apnea), and am lying down in bed most of the day. I'm able to do one thing a day, cook or fold laundry....that's about it. I'm positive I have ME/CFS.

I want a doc who knows their shit about ME/CFS. I have a 2 inch file of all of the blood tests I've requested. I just need a doctor to start actually treating the ME.....I think with antivirals.

Too bad about your naturopath!

If you can travel there's also Peterson at Incline Village - decades of experience. Kaufman is an ex HIV doc - very versed in pathogens as well. Peterson has access to Ampligen if you can afford it and afford to stay there.

No guarantees, of course, but these guys have been around.

 

[IrisRV]

@Mandy,

The last I heard, Petersen is very picky about who he accepts, requires tons of specific testing in advance, and doesn't take many new patients these days. He's really good, though. Can't hurt to ask if you're interested.

I vote for Kaufman, too. He has a lot of treatments in his toolbox, so there's less chance that he won't treat your version of ME/CFS. He's probably closest to you, too, which is a plus.

As someone said, the INIM team (Klimas, Rey, Vera) are full, or nearly so. I would encourage anyone who is interested in seeing them to at least ask and get on the waiting list if you have to. INIM is a long trip for you, so I'd try the California teams -- OMI (Kaufman, Kogelnik) or Stanford (Montoya) first.

Have you been tested for HHV6 or CMV, yet? They can be nastier than EBV.

Your symptoms sound similar to mine when I had out-of-control herpesviruses (HHV6, EBV). I'd suggest you see a specialist who treats them aggressively when they find them. If herpesviruses (EBV, HHV6, CMV, VZV, HSV) aren't a problem for you, no harm done. The specialists I mentioned above all treat viral infections aggressively.