Re: Introduction and study I'm participating in...

[Guest guest]

hi barb!!

i'm in that one too! boy, am i glad to meet you! :-)

i also feel like i'm worse while taking the stuff. have no idea what to

make of this!

you're doing 15 capsules once a month! i'm doing it twice a month.

wow, i wonder how many dosing schedules there are! i haven't heard of

that one.

@}{~{<<~~~~~~~~~~~~~~~~~~~~

debbie s. - dlsherman@...

[Guest guest]

Hi,

Welcome and thank you for all the information! It is nice to hear that an

Infectious Disease doctor takes us seriously and is doing something to

help! Is he the one who got you into the study? And will testing and

treatments be available anytime soon? An will there be more studies? I

know - it's 20 questions, but this sounds promising.

Please keep us updated with your progress and also just keep posting!

Take care,

Christie

At 02:16 PM 10/15/99 EDT, you wrote:

>From: Babs123927@...

>

>I've been on the list about a week and really enjoying the discussion. My

>name is Barb, I'm 52, and been ill for about two years. Since July 15, I

>have been on short term medical disability and face long term disability in

>2000. On an activity scale of 100, I move between 20 and 30. I have daily

>symptoms of pain, fatigue, stiffness, headache, brain fog, insomnia, etc

with

>worse days with additional pain [esp. jaw], chills, sweats, weakness,

nausea,

>irritable bowel, jitteriness, etc.

>

>Since February, I've been working with an Infectious Disease specialist in

>Kansas City [i live in Topeka, KS] He prescribes Oxycontin for

time-released

>pain control which works very well. In September, I began participating in

>an experimental treatment study with Dr. Brewer. He has found that most of

>his CFS patients test active for HHV6 and have very low Natural Killer

>[NK]Cell counts [mine is 5....norm should be 80-100]. He is working with a

>lab in Wisconsin [that developed the test to detect " active " HHV6 [not

>anitbodies] and a company in South Carolina that has engineered colostrom

>[first cow's milk for newborn] successfully with other Herpes viruses for

>successful treatment, i.e. Epstin Barr. The hope is that by taking

Colostrom

>taken from cows who are infected with HHV6 and have developed immunity to

>it....that that immune strength will be " transferred " [thus called transfer

>factor] to the human and will increase strength of our immune system

>[especially in relationship to Natural Killer Cells] and we will have relief

>from CFS. The study started in September. It is a double blind. I take 5

>days of 600 mgs per day of Colostrom [or placebo] and then off 25 days. I

am

>ready to start my 3rd dosage this weekend. With my second dosage, I was

>especially sick with nausea, chills, and diarrhea during the 5 days....but

>had 2-3 days of more energy immediately following. Other than that there is

>no discernible change in my condition either from my symptom perspective or

>from my NK Cell count. My husband's perspective is that I have the placebo

>and all my symptoms are just waxing and wanning of CFS.

>

>Hope that gives everyone a perspective about me and about the study I'm

>particpating in.

>

>>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]

In a message dated 10/22/99 2:54:14 PM Eastern Daylight Time,

S@... writes:

<< does anyone have anything good to say about TF?

>>

[Guest guest]

In a message dated 10/22/99 2:54:14 PM Eastern Daylight Time,

S@... writes:

<< does anyone have anything good to say about TF?

>>

Yes! But it all depends on which TF is used and they can be very different.

My daughter was helped tremendously by TF that used a close family donor to

make it years ago before it was oral. She also got help from the one

originally made orally by Dr. Giancarlo Pizza from Italy. When it was made

by another company that Dr. Pizza gave it to, it didn''t help at all. But

when it does work, it's a great help. Not a cure, of course, but it gave her

a good 50% more energy and all her symptoms were reduced in severity.

Whether or not a company has perfected this for CFS remains to be seen.

Gail

[Guest guest]

does anyone have anything good to say about TF?

thanks

Steve

[Guest guest]

My opinion is the same. I am on human TF (shots) again and it helps a lot.

Stania

There has never been published any study about human TF in CFS in my country

and my dr. would appreciate any info about such studies in other countries.

I was not able to find anything on the web. Could anybody help? Thanks.

Another sort of TF is also used here - made from cow's blood - it is taken

orally and some PWC were helped by it. It gives them more energy but its

effect wears off in three or four days. (they take it once a week.)

-----Pùvodní zpráva-----

Od: GAILRONDA@... <GAILRONDA@...>

Komu: onelist <onelist>

Datum: 22. øíjna 1999 21:17

Pøedmìt: Re: Introduction and study I'm participating

in...

>From: GAILRONDA@...

>

>In a message dated 10/22/99 2:54:14 PM Eastern Daylight Time,

>S@... writes:

>

><< does anyone have anything good to say about TF?

> >>

>Yes! But it all depends on which TF is used and they can be very

different.

>My daughter was helped tremendously by TF that used a close family donor to

>make it years ago before it was oral. She also got help from the one

>originally made orally by Dr. Giancarlo Pizza from Italy. When it was made

>by another company that Dr. Pizza gave it to, it didn''t help at all. But

>when it does work, it's a great help. Not a cure, of course, but it gave

her

>a good 50% more energy and all her symptoms were reduced in severity.

>Whether or not a company has perfected this for CFS remains to be seen.

>Gail

>

>>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.

>