Re: 2nd to Cheney or Doc in Bay Area?

[Guest guest]

Kat,

This is a list I got off the Topica Bay Area Cfids group. I don't know

about these docs. I'd call and ask questions. I'm going to Dr.

Rosenbaum in Corte Madera and I like him but don't know if he does what

you're looking for.

Tracey

Barbara Bishop MD, SF

Rajiv Dixit MD, Concord

Roxanne Fiscella MD, Berkeley

Gracer MD, East Bay

Klonoff MD, South Bay

Mandel MD, Hayward

Noah Oderberg MD, Berkeley

Polly Young MD, Berkeley

Gardner MD, Greenbrae

Cummings MD, Menlo Park

s MD, San Mateo

Targoff MD, SF

Speigel MD, Palo Alto

kattemayo wrote:

>Need suggestions, please! I have this small window of possible help in seeing

CFIDS/ME expert. My uncle's offer was only for Mayo, but since Mayo reccommended

I see CFIDS specialist he may be open to it. His summer home is NC and he said

to call Cheney. Of course,NO new patients,little chance that will change.

> In addition to extreme concern (as

true for everyone) if I don't get treated for CFIDS/ME/MCS,etc., the almost more

scary situation of being turned away for progressing Neuro stuff because of

presenting with the " CFS " history. THis has now happened at Stanford and Mayo

Neurology Clinics. I have Dystonia,ET spreading in body,severe heat

intolerance growing, MCS too.

>

> Is there consensus here or

individual's experience of a really top CFIDS educated doc besides Cheney? If I

had the educated testing and beginning protocol, my uncle would perhaps provide

for it, at least get me started. He is elderly and knows he will not be here

very long. A solid recommendation elsewhere may work, but I am in the Bay

Area,Ca., so also interested in someone here.

> So far, will continue to piece

together treatment as I have in Bay Area on MediCal only, and through our and

Dystonia networks of info. Supplement budget dwindling, don't know if that will

continue down or a miracle will happen.

> I have tested positive for several

cognitive and executive deficits in right frontal lobe.But no SPECT or PET which

I wish I could have.

> Positive for Ciguatera, past

antibodies to CMV,EBV,HHV6, Osteopenia, and more fun stuff.

> The tightrope I walk is everything

that helps everything is containdicated for everything else. Sound familiar?

Now I smoke to suppress violent Dystonia movement (common to do so with some

Parkinsonson's, tremor, Tourettes). Oddly enough, can then handle rush hour

pollution too and some other sx too. THe contraindication here obvious of

course. I am on a trial of

Ritalin, just so I can get a grip on finances and these time sensitive

decisions. Another contra but it is helping for the moment.

Hope this makes sense. Soooo dear PWCS, any other miracle CFIDS docs???

Thank you,

> Katrina

>Hmm, also any other great Brain docs in this area? I have such interesting

brain data and responses, questions.

>

>

>

>This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

[Guest guest]

> Need suggestions, please! I have this small window of possible help

in seeing CFIDS/ME expert. My uncle's offer was only for Mayo, but

since Mayo reccommended I see CFIDS specialist he may be open to it.

His summer home is NC and he said to call Cheney. Of course,NO new

patients,little chance that will change.

Seeing many postings from Dr Ritchie Shoemaker on the stealth virus

list makes me think he is the sharpest in the USA on CFS, Lyme and

anything in between. He also accepts medicare.

[Guest guest]

OOOps! I sent a doc list for the S.F Bay area. i think you wanted east

coast, huh?

Tracey

jseaton357@... wrote:

>Read my recent post just sent w/i the hour? Go read it. There are no great

>CFS docs. Most don't know the first thing about lyme and yet CFS in and of

>itself should be a diagnosis saved for the final straw, but CFS docs deny

>lyme existance and/or just don't know how to test for it or diagnose it. I

>only feel confident in saying this b/c of too many stories, many personally

>known people with CFS come find out they're really lyme. Your job is to rule

>out everything else and then go to CFS doc if you have to but you may find

>out your LLMD, if you find one, is as good a CFS doc as you could ask for

>anyway, so you get your cake and eat it too and likely get insurance covering

>your tests and come out with money left in your wallet. If all else fails

>you then go to a " super CFS " doc and see what they can do for you. Sound

>like a plan? Hope so. Maybe I'm just crazy and shouldn't be trying to buck

>the system like I tend to always do. Some ardent CFSer-only types on here

>though will argue that CFS is neuro and that's why it is legit and lyme is

>BS. Well, again, go read the link, open your mind to possibilities AND the

>facts and do your homework and you'll see that lyme does affect brain, big

>time. The spirochetes LOVE the brain a little too much. What's interesting

>is the same that say CFS is neuro/HPA will then turn around and say it can't

>be lyme b/c CFS is viral. Viral? I thought it was " neuro " ? Make up your

>mind. If it is viral then fine, go chase your virus that you'll never find

>but in the mean time why not chase a bacteria that you just MAY find? If it

>is neuro then realize that actually more weighting goes to lyme causing the

>neuro disturbances than any virus, b/c we know what lyme does to the brain

>but don't know what some unknown virus may do to the brain.

>Good luck.

>

>

>

>In a message dated 5/6/03 9:56:50 PM Eastern Daylight Time,

> writes:

>

>

>

>

>>Need suggestions, please! I have this small window of possible help in

>>seeing CFIDS/ME expert. My uncle's offer was only for Mayo, but since Mayo

>>reccommended I see CFIDS specialist he may be open to it. His summer home

>>is NC and he said to call Cheney. Of course,NO new patients,little chance

>>that will change.

>> In addition to extreme concern

>>(as true for everyone) if I don't get treated for CFIDS/ME/MCS,etc., the

>>almost more scary situation of being turned away for progressing Neuro

>>stuff because of presenting with the " CFS " history. THis has now happened

>>at Stanford and Mayo Neurology Clinics. I have Dystonia,ET spreading in

>>body,severe heat intolerance growing, MCS too.

>>

>> Is there consensus here or

>>individual's experience of a really top CFIDS educated doc besides Cheney?

>>If I had the educated testing and beginning protocol, my uncle would

>>perhaps provide for it, at least get me started. He is elderly and knows he

>>will not be here very long. A solid recommendation elsewhere may work, but

>>I am in the Bay Area,Ca., so also interested in someone here.

>> So far, will continue to

>>piece together treatment as I have in Bay Area on MediCal only, and through

>>our and Dystonia networks of info. Supplement budget dwindling, don't know

>>if that will continue down or a miracle will happen.

>> I have tested positive for

>>several cognitive and executive deficits in right frontal lobe.But no SPECT

>>or PET which I wish I could have.

>> Positive for Ciguatera, past

>>antibodies to CMV,EBV,HHV6, Osteopenia, and more fun stuff.

>> The tightrope I walk is

>>everything that helps everything is containdicated for everything else.

>>Sound familiar? Now I

>>smoke to suppress violent Dystonia movement (common to do so with some

>>Parkinsonson's, tremor, Tourettes). Oddly enough, can then handle rush hour

>>pollution too and some other sx too. THe contraindication here obvious of

>>course. I am on a trial of

>>Ritalin, just so I can get a grip on finances and these time sensitive

>>decisions. Another contra but it is helping for the moment.

>> Hope this makes sense. Soooo dear PWCS, any

>>other miracle CFIDS docs???

>>Thank you,

>> Katrina

>>Hmm, also any other great Brain docs in this area? I have such interesting

>>brain data and responses, questions.

>>

>>

>>

>

>

>

>

[Guest guest]

ly I would be skeptical of the list. I've been getting names of doctors

around here (and going to many of them) for years, and there is only one on this

list I ever heard of. The only real experts that come up a lot in the Bay area

are Rosenbaum (in Marin) who is writing a lot of articles lately; I heard he

writes good reports for disability, but I have heard good and also moderate

things about him in terms of treatment. And the true one that comes up again

and again is Dr Gordon in Santa . That is at least 3 hours from me but

the next place I will be trying. Everyone seems to love him, and he seems

really on top of CFS (Cheney treatments as well as others) as well as lyme.

Thanks,

Doris

[Guest guest]

Katrina:

I don't know if you might be interested in Dr. Rosenbaum in Marin

County (415/927-9450). I went to him when he still came down to L.A. every

month. He's by no means cheap and wouldn't take MediCal, but he wrote a book

with Dr. Susser on CFS and so that might satisfy your uncle. He knows

environmental med. and nutrition and infectious causes and does acupuncture,

I believe. But I don't know that he would be an equivalent to Dr. Cheney.

He does seem knowledgeable about Lyme, parasites etc..

I'm new to the group and wish you the best.

Joyce Waterhouse, Ph.D.

members.aol.com/SynergyHN

[Guest guest]

Hi Joyce,

Thanks so much. His name had come up but did not know this range...I like

that. I will look for the book to see some more ideas, Does he seem to know

intacricies of the BRAIN?

Thank you, Joyce. I have learned alot from this group over the years. It

cycles through many changes and approaches.

Katrina

> Katrina:

>

> I don't know if you might be interested in Dr. Rosenbaum in Marin

> County (415/927-9450). I went to him when he still came down to L.A. every

> month. He's by no means cheap and wouldn't take MediCal, but he wrote a book

> with Dr. Susser on CFS and so that might satisfy your uncle. He knows

> environmental med. and nutrition and infectious causes and does acupuncture,

> I believe. But I don't know that he would be an equivalent to Dr. Cheney.

> He does seem knowledgeable about Lyme, parasites etc..

>

> I'm new to the group and wish you the best.

>

> Joyce Waterhouse, Ph.D.

> members.aol.com/SynergyHN

>

>

>

[Guest guest]

I don't know to what degree he is versed in the brain's inticracies, but he's

been around quite a while. I believe he now has a web site and that may have

more information. If he hasn't down a new edition, his book must be about

7-8 years old. Either do a web search for the web site or ask his office for

the web address.

Joyce

In a message dated 5/8/03 3:57:05 PM Pacific Daylight Time,

kattemayo@... writes:

> Hi Joyce,

> Thanks so much. His name had come up but did not know this range...I like

> that. I will look for the book to see some more ideas, Does he seem to know

> intacricies of the BRAIN?

> Thank you, Joyce. I have learned alot from this group over the years. It

> cycles through many changes and approaches.

> Katrina

>

>

>

>

> > Katrina:

> >

> > I don't know if you might be interested in Dr. Rosenbaum in Marin

> > County (415/927-9450). I went to him when he still came down to L.A.

> every

> > month. He's by no means cheap and wouldn't take MediCal, but he wrote a

> book

> > with Dr. Susser on CFS and so that might satisfy your uncle. He knows

> > environmental med. and nutrition and infectious causes and does

> acupuncture,

> > I believe. But I don't know that he would be an equivalent to Dr.

> Cheney.

> > He does seem knowledgeable about Lyme, parasites etc..

> >

> > I'm new to the group and wish you the best.

> >

> > Joyce Waterhouse, Ph.D.

> > members.aol.com/SynergyHN

> >

>

[Guest guest]

FWIW, I completely agree with .

-

1985 Incline Village Epidemic Survivor