Help in getting CFS treatment for Kaiser Permanente patient

[Guest guest]

Hi there. I don't know if this is the right place to be posting -

please redirect me if it's not. I'm trying to help a dear friend get

CFS treatment through Kaiser Permanente in San . She's seen many

physicians there, and is now labled in her charts as a difficult

patient, hysterical, etc. Until 3 years ago she was in good health,

working, and rarely visited the doctor. She is now broke and

disabled and does not have money to go out of system.

We're guessing CFS, BTW, because she sort of fits the profile. She

had been previously (2 yrs ago) diagnosed with hyperthyroidism and

her thyroid was radioactively " killed. " She is now taking synthroid.

There has been absolutely no improvement.

Any suggestions specific to addressing CFS through this HMO are much

appreciated.

Thanks, M

[Guest guest]

Can she change to another plan during open enrollment? I believe Kaiser is the

worst place to be if you have anything the least bit out of the medical

mainstream. During my next open enrollment period I switched to a PPO and vowed

never to join an HMO again.

Doris

----- Original Message -----

From: finchwar

Hi there. I don't know if this is the right place to be posting -

please redirect me if it's not. I'm trying to help a dear friend get

CFS treatment through Kaiser Permanente in San . She's seen many

physicians there, and is now labled in her charts as a difficult

patient, hysterical, etc. Until 3 years ago she was in good health,

working, and rarely visited the doctor. She is now broke and

disabled and does not have money to go out of system.

[Guest guest]

Hi M,

I'm sorry to hear of your friend's problems. I first came down with CFS

while living in San . I didn't belong to Kaizer Permanente, but

got an early diagnosis at San Medical Group in Los Gatos (on

Bascom) by Dr. Cummings. I don't know if she's still there.

That was in 1988. She diagnosed me based on my symptoms and positive

test results for Epstein Barr and HHV6. She then told me there is no

treatment or cure. She went on to test me for every other possible

causes to eliminate other diseases. She was willing to try just about

any researched treatment that I brought to her. However, nothing made

much difference. Since then, like many people on this board, I have

been to many doctors, some who have written books on CFS and I'm still

very much disabled by this disease. So, I don't know how much help any

traditional MD is going to be for your friend. If she just reads this

board and other research sites for cfs, she'll probably learn more than

most doctors know.

I do think that it's important for her to be tested for the

various viruses involved in this illness, as well as going to a

wholistic doctor who uses testing from the Great Smokies Lab to check

for liver detoxing ability and mercury levels. Most of us resort to

spending quite a bit of money beyond what our insurance will cover.

As far as the doctors labeling your friend as being hysterical, I

believe that as a patient, one has to be factual and calm, straight

forward and courteous (though firm) with doctors. I always take in

research documents from the web to convince them of what I want to

try. If the doctor still won't cooperate, try to find one who will. If she

truly is feeling a high amount of anxiety and isn't sleeping well, she

could research Klonopin and if it sounds right, she could ask for a

prescription. She can also research Dr. Cheney's treatments; he's

considered to be one of the top doctors on this disease. His programs

are on the site for the Dallas/Fort Worth Cfids Support site. I think

if you type DFW CFS Support Group into google, it will come up. Also,

the monitor of this message board has an excellent web site; type

" Lassesen " into google.(I hope I spelled the last name correctly)

I put " Kaizer Permanente+Chronic Fatigue Syndrome " into Google Search

Engine and got this site, so I know they recognize the illness.

http://www.permanente.net/kaiser/pdf/6738.pdf

I'm sure there is a CFIDS Support Group in San where she could

get some infomation and help. Also, now through March 31 is an Open

Enrollment period in California so that people can change insurance

companies.

Good luck to your friend and best wishes, Sandy

> Hi there. I don't know if this is the right place to be posting -

> please redirect me if it's not. I'm trying to help a dear friend get

> CFS treatment through Kaiser Permanente in San . She's seen many

> physicians there, and is now labled in her charts as a difficult

> patient, hysterical, etc. Until 3 years ago she was in good health,

> working, and rarely visited the doctor. She is now broke and

> disabled and does not have money to go out of system.

>