Can you help me gather info on CFS specialists in U.S. and their different approaches?

[Ocean]

Hi everyone,

I am considering trying to see a CFS specialist at some point. I want to look into each one, their different approaches, costs etc. It may take me some time, but if I get all the info, I could put together some sort of chart or table once I get the info so that others may also refer to in the future.

What I'm looking to find out about each specialist in the U.S. is:
-Name
-Location
-Do they take insurance
-Do they take Medicare
-Average visit costs if cash-pay
-Theories/approaches on CFS (viral, immune, etc.)
-Meds and tests they commonly use
-The type of CFS symptoms they are best at dealing with (flu-like symptoms, cognitive, etc.) if any in particular
-Wait list times
-Will they do phone consults or consult with a patients local doctor for patients who can't travel to them
-In addition to that, any other info on any of the specialists would also be very welcome.

Thank you so much for any help you can give.

ETA: I'm thinking of starting a document online, like through Google docs or something similar, and making a little chart or table on there. If I do that would people be interested in adding info to it? I'm not sure how these things work, if I'd have to invite each person or how I could make it so anyone from here could easily contribute. If anyone has any ideas please let me know.

ETA 2: I looked into file sharing but it seems you have to invite every person by email, so I don't think that would work for this. If anyone has any ideas on how else to do a shared file let me know please. Thanks.

 

[Sparrow]

Can't give you too much detail right now, but here are some names that might get you started:

Dr. Nancy Klimas (special focus immune system)
Dr. A Martin Lerner (focused on viral infection)
Dr. Chia (focus on viruses in the gut)

 

[Ocean]

Thanks Sparrow. I'll start putting the info into a document soon.

 

[Sasha]

Dr Daniel Peterson
Dr Derek Enlander (New York)
Dr Nancy Klimas (Florida?)
Dr Chia (does he treat or just research?)
Dr David Bell (or is he retired?)
Dr Cheney...

Anyone else? It would be good to have a list, including websites and contact info.

For instance, here's the treatment page on Dr Enlander's site: http://www.enlander.com/treatment.html

 

[Nielk]

Dr. Derek Enlander, NYC
website: www.enlander.com/doctor.html
phone #: 212 794-2000
office e-mail - enlandercfs@yahoo.com


He focuses on immune function and viral pathogens
He accepts Medicare
He currently is running an open study with Ampligen.
You can also receive GcMAF shots (expensive)
He also sells maf 878 (oral yogurt form) - (not expensive)

 

[aquariusgirl]

Yes, Dr Chia treats. His practice is called ID Med in Torrance. CA.

You could add Dr Joseph Brewer in Kansas City, MO, to the list. An ID doc. Has treated AIDS/HIV patients for 30 yrs.
Also treats PWCs.
Practice is called Plaza Medicine or Medical.
Takes Medicare & other insurances.
A good guy. Pretty narrow focus on viruses IMHO.

Dr Jose montoya. stanford Uni, CA.

Andres (andreas?) kogelnik, Mountain View, CA. (was under Montoya before).

Dr Lucinda Bateman, Utah. (University of Utah in SLC....i think.)


Dr Charles Lapp & Dr Black , Charlottle, N Ca. (I saw Lapp yers ago.. total waste of $$ & time>)

 

[Ocean]

Thanks everyone!

 

[Nielk]

There is also Dr. Benjamin Natelson. He is a Neurologist so, his focus is neurological problems.
He has a Pain and Fatigue Medical Center in Beth Israel Medical Center.
He is running two studies right now of the brain and spine.
This is his website: http://www.painandfatigue.com/clinical_care.html

 

[rosie]

Like aquariusgirl, I also saw Dr Lapp and Dr Black not to long ago. Total waste of time and money. All the help they give you is found right on their website. Over $3,000 out of pocket and still not any better!

 

[Ocean]

Like aquariusgirl, I also saw Dr Lapp and Dr Black not to long ago. Total waste of time and money. All the help they give you is found right on their website. Over $3,000 out of pocket and still not any better!

I'm really sorry to hear that Rosie, it's so frustrating. Thanks for sharing that though. It's exactly what I'm trying to avoid, both in terms of expense and physical cost.

As far as doctor names, Chia, Lerner, and Natelson and Batemen were new to me. Thanks everyong for sharing this info. And thanks Neilk for the detailed info.

Anyone who's had a good or bad experience with one of the speicalists but doesn't want to say so publicly, please consider PMing me. I really really want to try to see someone I think will be able to help me if I take the financial and physical risk to travel. The main ones I considered were Peterson, Enlander, and Klimas since those you hear about most, but I will look into the ohters as well.

 

[Ocean]

I hear that PR is working on such a list, so that should be good news for all of us who really could benefit from it.

 

[greenshots]

There is April Ward-Hauge MS, NP, BCIM a telemedicine (skype & phone) in N. Cali.
www.autismnti.com
530-559-6824

She's mine and is a UC Davis graduate nurse practitioner who is board certified in Integrative Medicine. I can't remember her CFS/ME web address but the one above will also get you there and She believes CFS is multifactorial with genetic underpinnings (nutrigegomics/methylation medicine) as well as immune, infectious, and environmental and has a mostly Skype practice in northern california, though she sees us locals in her Sacramento office. She's $190/hr and will provide a superbill for PPO imsurance purposes. She can order many of the medical tests & legally have them covered under insurance snce she never left mainstream medicine but prefers a genetics based panel along with it (outside lab $500). She was a yasko doc but split from her since Yasko is insanely complicated and won't change her ideals to match reality (rumor on this last part). She translated Yasko's medicine and put it up on her website for FREE, yippee!

My next door neighbor actually recommended her to me (he's a family practice doc & she treats his son and wife) and my dad's cardiologist also referred her to me so she's a doctor's doctor out in our neck of the woods. This is the reason I chose her. Fortunately for me, she's outstanding! She's already got me to 70% and has recovered 2/3 of my kids with autism. Rumor also has it, she sees a surgeon wife's out here and he is a complete toad but calls her a "genius", which to my knowledge, is the first nice thing he's said about anyone! She also gives you a full consultants write up for the visit cost! I pray to God every month she doesn't go outta business with her pie in the sky idealism, you know us California dreamers! But last time I saw her, there was a couple from France who flew here just to see her so hopefully she will do ok at these lower costs.

Why I'm REALLY impressed though is that when 10 of the Hewlett Packard families out here lost their jobs, she didn't let them go and charged them even less, on a payment plan, than she does already! She actually gives a rat's hiney about people and knows her stuff, not easy to find these days.

Angela

 

[eve789]

i know i'm starting to sound like a broken record...but this is why a wiki would be great!

 

[roxie60]

I am in the same boat as you Ocean. Trying to find a CFS specialist not to far away and what their focus / approach is / and their success rate for their patients. Thanks for satrting this thread. I have been revewiing as many threads as I can find but it takes much energy and sometimes my brain seems to short circuit. I have been told Lerner is focused on anti virials, is in Detroit. I was considering him since I have family in that ara andwould have a place to stay. But I dont know if he is looking for people that will end up supporting his theory or if he is patient focused (what you have is what you have and we'll treat what we can). I deparately need a CFS specialist, my Dr just doesnt seem to have a sense of urgency, never has. I WANT ANSWERS!!!

 

[Sushi]

You also have the problem that sometimes patients are not willing to post about their doctors on an open forum that can be searched by Google. They know that some people will quote their opinions in ways that may not be helpful or accurate either to other patients or to their doctors.

It is a difficult maze to navigate.

Sushi

 

[helen1]

Dr Byron Hyde in Ottawa does Skype consults and sees people at his practice. He charges $600 for a 2 hr consult. He does a lot of tests to try to find other causes for symptoms and claims that 40% of people that come to him are found to have cancer, MS, diabetes, etc. He is a big supporter of PWME and has gone to court for patients who've lost jobs, have been cut from disability, etc. If anyone wants to know more about my experience with him and my opinions please contact me directly.

Dr Ian Hyams in W. Vancouver BC has a private CFS/FM clinic and is a also a GP. He is an Integrative medicine doc and quite knowledgeable & respectful, taking a broad view of the illnesses. He's my new GP and so far, so good.

 

[helen1]

I just looked into Greenshots doc, April Ward-Hauge and she is not taking any new patients for 2013.

 

[WillowJ]

dr Lerner's page: http://www.treatmentcenterforcfs.com/
Dr Bateman's page: http://www.fcclinic.com/Dr.Bateman.htm
Dr. Klimas's pages: http://www.cfsclinic.com/About-Us.html
http://www.nova.edu/nim/patients/payments-insurance-accepted.html

 

[Scotty81]

Ocean,

I came across this post just recently. Has there been any progress on such a list to your knowledge?

Thanks,
Scotty81

 

[Gingergrrl]

@Ocean Not sure if this is already on your list but Open Medicine Institute is in Mountain View (No. CA) and has two doctors, Andreas Kogelnick and David Kaufman. Both are amazing IMHO and it is both a research center and clinical office for patients. You can PM me if you want specific info.