Re: Am I missing something?

September 6, 2006

The CDC officially and others discourage testing, after ruling out other things.

They say no pathogen has been shown to be causal and it's like an official edict

to our doctors...along with not encouraging us to over-focus on symptoms...do

not coddle the dysfunctional person who wants tests and more tests. for what? no

known cause, no known treatment...

Some easy ones are C-Reactive Protein and Fibrin. If you have high Fibrin, you

can take a natural blood thinner. You can look on Homepage. The Moderator here,

Ken has some intersting info on Hypercoagulation.

Did you check out the Cardiac pages/video that just got posted? See if that

resonates...

Do we have a web beacon that says we're discussing genes?

Katrina

>

> I want to convince my doctors that I need some more tests. Their reasoning

when I've brought up the subject is pretty much, " well we know you're got CFS "

accompanied by a glazed look. I was tested for the usual suspects EBV (positive)

HHHV6B (positive) ricketsia (negative - but apparently the test is unreliable as

the little bugs showed up in tissue of a woman previously tested negative) and

that's about it.

> I'd like to be tested for CMV and maybe a few other things but what is the

point?

> Antibiotic therapy would be out of the question for my body.

> Are there things I can sensibly ask to be tested for, which would lead to

additional treatments which might make life more comfortable for me?

>

September 6, 2006

,

The only reason to test for CMV would be if there was a specific

anti-viral drug that was effective against it. I tested pos for EBV,

HHV6 and CMV, but my doc said there wasn't anything that works great

against CMV anyway. I decided against anti-virals regardless and I

have been able to keep them in check with Transfer Factor and

Lauricidin. You might want to just assume you have it, and get a

transfer factor that also targets CMV (there are many different

kinds). Other respected docs recommend Thymic Protein A. Both

Transfer Factor and Thymic Protein A are expensive. If you decide to

go the Thymic Protein route, I have found the best price at:

http://www.naturedoc.com/products/proboost-thymic-protein-a.html

You would need to take 3 packets a day. With transfer Factor, I

believe you would take 3 pills a day for 3 months, and then 2 a day.

Other people take immune modulators, like ImmuneCare 64 or Immune

Suppert 26 instead. I have not taken either of these, so I can't give

you an opinion.

You might want to get your hormones, adrenals and thyroid checked out

as well, since they are often out of wack in CFS.

Good luck!

Chris

>

> I want to convince my doctors that I need some more tests. Their

reasoning when I've brought up the subject is pretty much, " well we

know you're got CFS " accompanied by a glazed look. I was tested for

the usual suspects EBV (positive) HHHV6B (positive) ricketsia

(negative - but apparently the test is unreliable as the little bugs

showed up in tissue of a woman previously tested negative) and that's

about it.

> I'd like to be tested for CMV and maybe a few other things but what

is the point?

> Antibiotic therapy would be out of the question for my body.

> Are there things I can sensibly ask to be tested for, which would

lead to additional treatments which might make life more comfortable

for me?

>

September 7, 2006

,

It sounds like you are on the right track. Have you thought of

approaching this from a different angle - instead of running a bunch

of tests, which will run into the thousands with a very predictable

result, choose a treatment program first, and then decide which tests

will help you get the best result out of the program? PWC's seem to

test relatively similiarly - sub-optimal NK cell count, sub-optimal

CD4 cell count, etc. If the tests didn't show this, you wouldn't have

CFS! I have found that there are a lot of opinions on what causes

CFS, but very little controlled studies on what helps. I.E., for

people that try the Marshall Protocol, why did person A improve,

person B stay the same, and person C decline?

Some doctors, like Lerner believe CFS is viral in nature and will want

to treat you for all of the viruses you have. Othere, like Dr. Ali

believe CFS comes from oxidative stress and focuses on correcting the

stress damage to your cells. Still others rotate anti-biotics to

treat you for all of the infections you may have.

Have you looked into the various protocols at at this web site?

http://lassesen.com/cfids/protocols.htm

Ths sample sizes are small and I suspect it suffers from

self-selection bias, but it is a great place to learn about treatment

options.

I only recently learned about these protocols, but I am 85% recovered

from CFS through simply removing the stressors on my body and changing

my diet. I went through extensive allergy testing and removed all

allergic foods from my diet and corrected the environmental allergies

(dust mite protection on bedding, etc). I also got off the western

diet and eliminated all sugar and white flour, and started to eat more

healing foods. I only use Aubrey natural products for body care and I

got a Vitamin C filter to remove the chloramines from my shower.

I have no idea what may work for anybody else, but that is my story

and 2 cents!

Good luck and please let me know what you decide and how it is working.

Cheers,

Chris

>

> Thanks for taking the time to write Chris. I'll ask my doc about

those for sure. I've had my adrenals thyroid hormones checked, and I'm

taking DHEA, T3, T4 Thyroid Extract and adrenal support. I've only

been on them this year. I suppose it takes time for it all to pull

together. Thanks again,

September 7, 2006

Sara,

I decided I would give FFC a try because I was anxious to get to 100%.

I am extremely unhappy with them, and going to discontinue treatment

as I felt they were dangerous to my health. Maybe I got a bad doc,

but I will outline my experience:

1. They put the protocol over the patient, and were unwilling to

modify the protocol to meet my wishes. Every time I questioned

something they prescribed, the answer was always the same, " you really

need this " . They never gave me any additional information to convince

me they were correct. As an example, they prescribed me 25 mg of

cortisol. I balked and said that I have read studies that show

anything over 20 mg is damaging to the immune system. I wanted to

talk about starting off on 5 mg, or trying Isocort first, but my doc

wouldn't listen. We actually argued about this, to my disbelief.

2. As a subset of point 1, they whole program is set up for little

patient involvement. After they ran 25 tests on me, they only

scheduled 30 minutes to discuss every test with me and charged me

$390! During this 30 minute conversation, they prescribed Valtrex,

Heparin, Diflucan, Cortisol, T3, Testosterone, plus a bunch of

supplements. I said I had a bunch of questions on these treatments,

and the doctor told me I would need to schedule another $390 call and

that I was taking up too much time and being inconsiderate to his

other patients!

3. The doc knew enough to be dangerous about CFS, but not completely

informed. I asked to do a tilt table test, but he wouldn't do it

saying my blood pressure indicated I didn't have NMH. Well, I have

the Hopkins study on NMH that explicitly states you can ONLY

determine NMH with a tilt table test and blood pressure indicated

nothing. After I researched the results of my coagulation tests, I

determined that my tests indicated I suffered from hypercoagulation,

not hypo, and Heparin wouldn't help me. This is from information on

testing published by Hemex. In fact, I think he didn't order enough

coagulation tests to make a determination. He should have ordered the

complete panel from Hemex, which leads to another complaint:

3. They only order tests from Quest Diagnostics. I think it is

widely known that there are better labs for certain specific tests

like mycoplasma, parasite, etc.

4. Like of controls in place to monitor patient. After prescribing

me Heparin and T3, he never told me to monitor anything like daily

temp and pulse for T3, or platelet count for Heparin. Even the Hemex

web site says you should closely monitor platelet count when you first

start treatment. In fact, when I questioned him about the safety of

Heparin, the doc said it was " completely safe " . Even Dr. Tietelbaum,

who is now the medical director of FFC rarely prescribes Heparin

because of his concern for its safety. He says this on his website.

Maybe their protocol would in fact help me, but the bottom line was

their style didn't mesh with mine. Anyway, I will be searching for a

new doctor.

--- In , Mercuria <mercuria@...>

>

> This is the approach FFC takes -- their doctors work several angles

> at once. They do start with a huge battery of tests to figure out

> which problems will be the most productive to focus treatment on, and

> then take off from there. No point in giving ProBoost to people who

> don't show major signs of viral load, after all; or hormones to

> people whose hormones are in pretty good shape.

>

> Sara

>

September 8, 2006

Sara,

I don't feel comfortable mentioning the clinic name or the doctor

publicly, but if someone wants to e-mail me....

>

> There's wide variety between the clinics, . It sounds like yours

> was awful.

>

> Could you tell us which office and doctors this was, so others will

> know to stay away?

>

> Sara

>

April 2, 2008

I think we all understand why many, many parents failed to file a claim for vaccine injury....it is because they have crafted a legal criteria that has made filing a claim extremely difficult for parents. Indeed, my own family is caught in the same legal snare.

Even so, at a rate of 1 in 150 EVERY DAY, for the last five years at least, there must be TENS OF THOUSANDS OF PARENTS who have been denied their quest for justice...and....as our ranks swell, so too, should our voices.

In the meantime, as long as this number of "pending claims" remains constant, it creates the mis-leading "perception" that parents of autistic children are no longer filing claims for vaccine injuries. This, too, must end.

Planning your summer road trip? Check out AOL Travel Guides.

April 2, 2008

Gus writes:

PAGE 5In recent weeks, there have been a number of reports in the media concerning a certain Vaccine Act case, currently pending before the court. Some of those reports have erroneously stated that the Office of Special Masters has recently issued a "decision," "opinion," or "ruling" concerning the issue of whether a Vaccine ACt claimant's autism symptoms were caused by one or more vaccinations.http://tinyurl.com/2xbht4

-------------------------------------------------------------------------------------------------

The Special Masters write:

A. Number of cases at this time, about 4,900 petitions in autism cases remain pending, stayed (at the petitioners own request) until the conclusion of OAP. Additional petitions continue to be filed (italics added)

The public has a right to know how many "additional petitions have been filed" in addition to the 4,900 already pending..Planning your summer road trip? Check out AOL Travel Guides.

December 9, 2009

I strain mine because some of grains are small and I don't want to miss a single

one when making a new batch!

Marci

>

> Whats with the straining? I have been just pulling the big grain clump out

with a spoon and putting it in the new jar of milk. Much less to wash. Seems to

work so far. Thanks , Lydia

>

June 21, 2011

Donna,

The last email I received from the group was on the 15th. But I am also

thinking maybe everyone is busy because of the time of year. I know I spend a

lot of time outside enjoying the warm weather. I am not on my computer as much

and maybe it is the same for others. I don't know, just perhaps.

Pat in Pennsylvania

Bilateral TKR August 2010

Am I missing something?

I can't believe there have been no email from the group. I even went into

and checked. I don't think I have seen a message in a week. I didn't edit

my info but I think I should have.

I think something is wrong? Can someone tell me if we have had no email in a

week or so.

Donna R

June 21, 2011

Hi Pat and all others, I have been crossing the Atlantic on the QM2, and just

got to North Yorkshire on Friday. No aches and pains, to speak of, and so

nothing to say!

I hope all are having a great summer, and the Aussies are having great

weather, whichever season it is!

All the best, Joan