Re: was Vaccine > Sticky Blood

[Guest guest]

In a message dated 4/9/99 9:39:46 PM Eastern Daylight Time,

S@... writes:

> this is a long post but it seem to be very encouraging.-- especially for

> those of us who seem to have over active immune systems.

Hello Steve...... This is what I call Sticky blood, looks so promising for

some,

Gail has posted on this also Dr Bell is involved , here is their page.....

Good info......

Still riding the wave......

Susy......

<A HREF= " http://www.hemex.com/framesetone.html " >HEMEX Laboratories,

Inc.StickyBlood

</A>

http://www.hemex.com/framesetone.html

[Guest guest]

In a message dated 4/10/99 8:22:43 PM Eastern Daylight Time,

S@... writes:

<< s HEMEX the only organization that does this time of testing? Can heparin

be ordered though any pharamacy or does one need to go through HEMEX.

If anyone is interested I did get an 800 # from their web site >>

Steve, I doubt that you'll find any on this list who have tried it unless you

wait a few more months. This is very, very new! Only the partial pilot

study was announced at the fall AACFS conference. They are now analyzing the

very first double-blinded study (the lab is sent healthy patients blood and

those with CFIDS to see if they can tell them apart). Our current

newsletter, which will go into the mail in about four days, has a report

about the very first patient who tried this as part of the pilot study.

There are several labs who test for DIC but, the other labs set their numbers

too high (there must be an exeption, but I don't know where it is) so they

don't pick up the low-level DIC. Dr. Bell was the one supplying the

samples for the blinded study. There are some who have been individually

tested and I know of only a few that have gone onto the treatment. If your

test is positive, the lab will fax your doctor a protocol they suggest based

upon the test and their own studies. Your doctor then prescribes the

treatments. The treatments never come from the lab. They only test for

blood problems. They are not medical doctors.

Dr. Bell, himself, has just begun to put less than a handful of patients on

the drugs. He's very conservative and has had a lot of dissapointments in

the past, so went slowly and cautiously with this. He's been convinced

enough to try it. Your own doctor will be just testing for DIC, a

well-known medical condition. There's nothing yet published on this. There

may not be anything published for quite awhile. Research is v-e-r-y

s-l-o-w!!! That 's why was so great about this site!

The 800 number is really just for doctors to call in case they need a test

kit, etc. There's nothing they can tell you about individual CFIDS cases.

Remember, before last summer, these researchers knew absolutely nothing about

CFIDS! One person challenged them and they decided to look. If you want a

copy of our latest newsletter, just e-mail me back-channel.

Gail

[Guest guest]

thanks so much for providing the information on heparin and the HEMEX corp.

I find this information very interesting but at the same time very hard to

evaluate. Does anyone have any knowledge of individuals who have tried this

medication? I would also be interested in experiences in deal this the

company especially in regard to collection third party payments and pricing.

Is HEMEX the only organization that does this time of testing? Can heparin

be ordered though any pharamacy or does one need to go through HEMEX.

If anyone is interested I did get an 800 # from their web site

(800-999-2568) I plan on calling them on Monday morning. My only concern is

that my DR. might consider this type of treatment a little far out. From the

information I found at the web site it seems that heparin is an accepted

approach to the treatment of some illnesses but it is new to the treatment

of CFS.

The reason I am hopeful regarding this approach is that I tend to react

negatively to drug that boost the immune system -- gamma goblin and

interferon, but do better with drugs that calm the immune system --

antihistamines and prednisone.

One last thing -- I have been experimenting with immunocal for about three

weeks. I do not find that it has been helpful -- at all. I have taken whey

protein supplements over the years and I not sure that immunocal is anything

more than that. On the packaging it only claims to a milk based protein

product. For a fraction of the cost one can buy a variety of whey protein

product that include a variety of amino acids and vitamins.

Thanks to all for the information and support.

Steve

[Guest guest]

thanks for all the info. My CFS Dr is a hemo so maybe he will be open to

trying heparin. Is there any strong risk associated with this drug. If not

maybe I can try it without any testing. Most thing I have tried have been

based on trial and error not on testing.

Thanks

Steve

[Guest guest]

Steve, there's really no risk if you are being tested how the lab will inform

your physician to test...and the fact that he's a hemotologist is luck!

He'll really understand! If you're positive, the risk is to you.....eventual

liver damage, etc., but this can turn it around before it goes that far. Let

us know what happens.

Gail