+Re: Anyone here taking protocol at a Fibro and Fatigue Clinic?

[Guest guest]

I was in Portland. Best thing ever happened to me. Not because of their program,

but because of the physician I choose. I saw an interview with him on a local tv

station and immediately knew I had to meet him. I had been at the FFC before for

an information gathering but didn’t make an appointment because I did not like

their physician. Than they hired a second physician and that's when I made an

appointment.

If you interview the physicians to see if they are a match for you(after all

they do take your money), it is possible to have a good experience in the FFC

but you have to be an active participant and let your physician know what is and

is not acceptable for you and what research you have done yourself etc. Let them

know you will buy your own supplements and be persistent if needed.

They are very good in extreme testing. Anything you can think of and they didn't

they are happy to run or order tests for you. In my case I was so lucky to have

a lab person in the clinic all the time who knew me and my body very well and

knew how to get those 12 or 21 vials without too much looking for a new place

to stick a needle. I am hypercoagulated and low blood volume.

After the first test results came back it was obvious from the start that I

didn't fit in their normal patient group. I was too ill to follow their program

and became a private patient which suited me very well. We developed out own

program, get stronger and normalize immune system first before starting to treat

the infectious illnesses and die from the die-offs. Like Sara I also inject

myself every day with Heparin and it makes a lot of difference.

The FFC Portland is closing it's doors. My physician is opening his own brand

new clinic and has started a cooperation with the FFC and will see the FFC

patients for 2 days a week, so their treatments can continue, but I'm happy that

I will be able to see him on the other days, not bound by corporate regulations.

Every FFC patient will have it's own story, some are raving some are

disappointing. It all depends on the physician you choose within the FFC. Is

he/she will to think outside the box and go the extra mile with you? Does he

value your input and research?

My physician and I we both grew over the past years, in knowledge and in

experience. He's not afraid to tell me he is doing a treatment for the first

time or that he doesn't know something. Together we can work it out and find

what works for me.

For me the integrative approach is the only way to treat my illness, my

physician is a Naturopath and classical Homeopath, and in Oregon Naturopaths

have prescription writing privileges so that comes in handy and we use quiet

some Oriental medicine as well.

Over the years I have seen patients come and go at the FFC and I have the

feeling that the most who get well are those who have not been ill for decades.

WRT the financial side of it, yes you have to pay upfront and submit claims to

your insurer, they give you detailed invoices with the right codes. Lab test

were all paid by my insurer directly and the claims were reimbursed as out of

network costs. For me it's a nice option because I would never be able to afford

Cheney or Klimas let alone the fact that I would not be able to travel there at

all.

--

Portland, OR

On Jul 2, 2010, at 2:51 AM, Sara W wrote:

> Yes, was patient at the Atlanta FFC for over two years with good progress. I

had never worked on infectious diseases' before, so wanted their help in that

area. I have to be honest, the first doctor followed protocol so strictly I

thought I would die from antibiotics and antifungal die off. Changed doctors

within the same clinic, and had a good strong year. My progress was really

ramped up when I started taking the heparin shots. I entered the FFC with a

50% functionality level, and am now at 85%. Feel free to write me privately

with any questions. While I personally have issues with their new " packaged "

care-------I think for those who have never used an integrative approach, or do

not have a good integrative MD, the FFC's are a god send.

>

> God Bless,

> Sara

[Guest guest]

I wanted  to let the  new people to this forum know that the people at the

Fibro and Fatigue Center are not necessarily the experts that  they claim to

be. Be wary of their protocol ,as it can harm. This is just a word to the wise

and let the buyer beware, especially since the new   Fibro and Fatigue Center

package plans  can be  quite expensive, as stated in 's post.

If you need more information you can reference my original post from 11/24/09 or

privately contact me.

If they had the ultimate answer for a cure........you would have heard about it

by now. 

Kathi

+Re: Anyone here taking protocol at a Fibro and

Fatigue Clinic?

 

Yes, was patient at the Atlanta FFC for over two years with good progress. I had

never worked on infectious diseases' before, so wanted their help in that area.

I have to be honest, the first doctor followed protocol so strictly I thought I

would die from antibiotics and antifungal die off. Changed doctors within the

same clinic, and had a good strong year. My progress was really ramped up when I

started taking the heparin shots. I entered the FFC with a 50% functionality

level, and am now at 85%. Feel free to write me privately with any questions.

While I personally have issues with their new " packaged " care-------I think for

those who have never used an integrative approach, or do not have a good

integrative MD, the FFC's are a god send.

God Bless,

Sara

[Guest guest]

Everyone's experience depends on who they see and when. I saw two doctors at

two offices. They had no clue how to treat CFS. It was like they were given a

sheet saying, start treating this way, then continue with this, then this, etc.

They had no clue how to treat.

One doctor followed message boards and checked what people said about her

office, on one phone call she said, " Are you xxx on xxx.com? " That was creepy.

I left $8000 cheaper with no improvement.

>

> Dear Mort,

>

> First let me say I am very sorry you have suffered all these many years

with CFS. I have had two sieges of CFS----one at age 34, lasting one year,

and the second at age 52 lasting 12 years. I come from a mainstream medical

family---uncle MD, mother nurse, ex-father-in-law MD. That said it was

holistic/integrative health care from some of the varying medicals you discount

that saved my life both times. I am thankful that I did not follow the

mainstream medical ignorance of CFS----because it would have trapped me as many,

such as yourself, into downward health disasters. It is my experience that

individuals who position mainstream medical up on pedestals are deeping scarred

by the eventual let down. Kathi referred to here had a terrible experience,

AND she also had a brother, an MD who was not able to help her. She doesn't

blame her brother for her health problems---but yet feels she was mistreated by

her FFC MD. To condemn the FFC's is not fair----they have a very successful

protocol, which has served many, myself being one. No doctor is perfect---to

realize and educate oneself on what is or isn't working is each patients

responsibility. I had read about Dr. Teitlbaums protocol for several years

before I started care at the Atlanta FFC. I received good care, with

resounding success regaining my health.

>

> Anyone looking for a doctor educated in CFS care can check out

www.ACAM.org------or call Dr. Teitlebaums' office for doctors trained in his

protocol----they are not nessacarily only in FFC clinics. Remember FFC clinics

are owned privately by man who HAD CFS, and saw the need. Dr. Teitlebaum is

only the " medical director " ----they follow his protocol, but he is not involved

in the day to day care.

>

> Disappointment can be a powerful negative energy---but if one turns it

around immediately, the air is cleared, and a new answer is on the horizon.

>

> God Bless,

> Sara

>

>