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In a message dated 4/26/99 1:18:18 AM Eastern Daylight Time,

theocean@... writes:

<< I am still upset that I tested

negative, only because HEMEX claims such a high percentage of CFIDS

patients test positive. JL >>

Some that have tested negative are those who are on saline infusions. It

affects the outcome of the test. Maqybe other therapies do, too. There's

one patient who was diagnosed by an expert that they missed, so it may be a

high percentage, but not everyone. They did find a gene that may be a marker

in the one that tested negative!

Gail

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Guest guest

Thanks for the info. I was just curious if any of you

have had any of these tests that Hemex offers, or the

Great Smokies Lab?? Im thinking of asking my doc

about them, but would like some " first hand "

information as well as what the web sites say.

Thanks - Michele U.

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

--- GAILRONDA@... wrote:

> From: GAILRONDA@...

>

> In a message dated 4/27/99 6:47:16 PM Eastern

> Daylight Time,

> theocean@... writes:

>

> << I havent had any test done by Hemex, but I am

> thinking

> > aboout getting some labwork done. I was

> wondering

> > what test you were referring to?? >>

> Michlle, if you want the test for DIC (disseminated

> intra-vascular

> coagulation), go to the website (hemex.com) and it

> has it there. They look

> for a low (and lately, moderate) level of the

> problem that doesn't allow

> correct circulation, etc.

>

>

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

> Did you know that we add over 1,000 new e-mail

> communities every day?

> http://www.ONElist.com

> Explore a new hobby, discover a new friend, laugh at

> a new joke!

>

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

> 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.

>

_________________________________________________________

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  • 1 month later...
Guest guest

In a message dated 5/29/99 5:24:17 PM Eastern Daylight Time,

penn@... writes:

<< I forgot to ask you. Have you heard any significant details of how the

patients in the Boston area who are on the heparin-coumadin protocol are

faring? >>

It's just a week to a week and one-half for most, so it's too early to tell.

There were no adverse side effects so far, though.

Gail

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  • 1 year later...

Mike,

Do you remember anything about how quickly we're supposed to bleed. I am

considering getting an ISAC, but I bleed quite easily, while shaving for

example. Also, nurses have no problem getting blood draws. Do these

factors lessen the likelihood I have ISAC? Maybe Ken could provide some

input if he reads this message. Steve Bullock

Hemex

>

> Before getting a ISAC panel form Hemex, why not do a simple

> coagulation test. That would be to stick yourself and then to see

> how quickly (or slowly) you stop bleeding. I had this done once

> and I know there are standards with which to make a determination.

> I think I had mine before nasal surgery because I had taken some

> aspirin or something. Just a thought.

>

> Mike

>

>

> 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.

>

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Excellent suggestion - but remember this is a ONE WAY test...

if you are very slow to bleed than you have coagulation

IF you are quick to bleed, you can still have a DIFFERENT form of

hypercoagulation...

The other way is looking at your SED- if it is 0-4 than you likely have

hypercoagulation

(again a high SED does not exclude hypercoagulation)

M Lassesen, M.S.

ex " Dr.Gui (MSDN) " , " Dr. VB "

cv: http://www.folkarts.com/kenl/ KenL@...

Phone: 360 297.4717 Cell: 360 509.8970 Fax 520 832.6836

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

From: Mike

Before getting a ISAC panel form Hemex, why not do a simple

coagulation test. That would be to stick yourself and then to see

how quickly (or slowly) you stop bleeding. I had this done once

and I know there are standards with which to make a determination.

I think I had mine before nasal surgery because I had taken some

aspirin or something. Just a thought.

Mike

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In a message dated 9/23/00 11:32:09 AM Pacific Daylight Time,

mcamp10139@... writes:

<<

Before getting a ISAC panel form Hemex, why not do a simple

coagulation test. That would be to stick yourself and then to see

how quickly (or slowly) you stop bleeding. I had this done once

and I know there are standards with which to make a determination.

I think I had mine before nasal surgery because I had taken some

aspirin or something. Just a thought.

>>

This might not be such a good idea because I did exactly this. I bled pretty

good so I thought I must not be coagulated.......I was very wrong! I just

got back my HEMEX panel and I am very coagulated. So please if you aren't

sure get the test. karen

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Mike,

I too am a little skeptical of Hemex. They do have a financial incentive in

getting as many people as possible to get their test done. Nevertheless, I

think I'm going to give it a try. Steve B.

Re: Hemex

>

> This is my point. I am skeptical of Hemex. THey seem to find

> hypercoag in almost everyone. We have had this discussion before

> so no need in rehashing 'facts'. For ME, I would just rather

> take bromelain since it is a digestive aid.

>

> Mike

>

>

> > In a message dated 9/23/00 11:32:09 AM Pacific Daylight Time,

> > mcamp10139@a... writes:

> >

> > <<

> > Before getting a ISAC panel form Hemex, why not do a simple

> > coagulation test. That would be to stick yourself and then to see

> > how quickly (or slowly) you stop bleeding. I had this done once

> > and I know there are standards with which to make a determination.

> > I think I had mine before nasal surgery because I had taken some

> > aspirin or something. Just a thought.

> > >>

> >

> >

> > This might not be such a good idea because I did exactly this. I

> bled pretty

> > good so I thought I must not be coagulated.......I was very wrong!

> I just

> > got back my HEMEX panel and I am very coagulated. So please if you

> aren't

> > sure get the test. karen

>

>

> 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.

>

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In a message dated 9/23/00 7:34:58 PM Pacific Daylight Time,

mcamp10139@... writes:

<<

This is my point. I am skeptical of Hemex. THey seem to find

hypercoag in almost everyone. We have had this discussion before

so no need in rehashing 'facts'. For ME, I would just rather

take bromelain since it is a digestive aid.

Mike >>

Hi Mike, I was wondering about that as well. Did you take the test? I also

wonder about that LUAT test from Igenex for Lyme disease. By the way, I just

tested positive for ISAC by Hemex. Has anyone tested negative on this list?

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This is my point. I am skeptical of Hemex. THey seem to find

hypercoag in almost everyone. We have had this discussion before

so no need in rehashing 'facts'. For ME, I would just rather

take bromelain since it is a digestive aid.

Mike

> In a message dated 9/23/00 11:32:09 AM Pacific Daylight Time,

> mcamp10139@a... writes:

>

> <<

> Before getting a ISAC panel form Hemex, why not do a simple

> coagulation test. That would be to stick yourself and then to see

> how quickly (or slowly) you stop bleeding. I had this done once

> and I know there are standards with which to make a determination.

> I think I had mine before nasal surgery because I had taken some

> aspirin or something. Just a thought.

> >>

>

>

> This might not be such a good idea because I did exactly this. I

bled pretty

> good so I thought I must not be coagulated.......I was very wrong!

I just

> got back my HEMEX panel and I am very coagulated. So please if you

aren't

> sure get the test. karen

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No, sorry, Steve, I don't remember. But I think it is a pretty

standard test where you are pricked by one of those little silver

things to get a drop of blood from your finger, and if you stop

bleeding within one minute or so then you are OK for surgery. But

as someone just posted, Hemex will probably find something wrong

even if you bled for ten minutes!

> Mike,

>

> Do you remember anything about how quickly we're supposed to

bleed. I am

> considering getting an ISAC, but I bleed quite easily, while

shaving for

> example. Also, nurses have no problem getting blood draws. Do

these

> factors lessen the likelihood I have ISAC? Maybe Ken could provide

some

> input if he reads this message. Steve Bullock

> Hemex

>

>

> >

> > Before getting a ISAC panel form Hemex, why not do a simple

> > coagulation test. That would be to stick yourself and then to see

> > how quickly (or slowly) you stop bleeding. I had this done once

> > and I know there are standards with which to make a determination.

> > I think I had mine before nasal surgery because I had taken some

> > aspirin or something. Just a thought.

> >

> > Mike

> >

> >

> > 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.

> >

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I'm missing something here. What is Hemex and what about platelet

aggregation? Are some people deveoping DIC from sepsis or what? When

I first got sick, my platelets were high but I was bleeding and

bruising easily. The doc was really puzzled about it. Mentioned they

were slightly mishapen but didn't have any ideas about what might

have caused it. And with all the other problems that came along, I

pretty much forgot about it. Any ideas?

Be Well,

> > > In a message dated 9/23/00 11:32:09 AM Pacific Daylight Time,

> > > mcamp10139@a... writes:

> > >

> > > <<

> > > Before getting a ISAC panel form Hemex, why not do a simple

> > > coagulation test. That would be to stick yourself and then to

see

> > > how quickly (or slowly) you stop bleeding. I had this done

once

> > > and I know there are standards with which to make a

determination.

> > > I think I had mine before nasal surgery because I had taken

some

> > > aspirin or something. Just a thought.

> > > >>

> > >

> > >

> > > This might not be such a good idea because I did exactly this.

I

> > bled pretty

> > > good so I thought I must not be coagulated.......I was very

wrong!

> > I just

> > > got back my HEMEX panel and I am very coagulated. So please if

you

> > aren't

> > > sure get the test. karen

> >

> >

> > 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.

> >

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Uma,

Are you taking atenolol or another calcium channel blocker? I was just

wondering if that may be lowering your BP. 68 over 57 (if that's your BP

and not your pulse rate; I think you have typo in message), you must have

trouble just maintaining conciousness. I have had raynauds/dysautonomia 22

years; it preceded my first fatigue symptoms by 12-13 years. Only thing

that has helped reduce dysautonomia symptoms for me is the bounce-back

chair. Steve B.

Re: Hemex

>

> Hi Mike,

>

> My Hemex test came out normal recently, but my NMH

> (dysautonomia) is really kicking up and starting to cause heart

> problems. Not currently in a relapse cycle. Heart beat is 48 BPM.

> resting pulse is 68 over 57 or right near that range. Definitely got

> the blood problems but no hypercoagulable state now like I did

> in the early years with the black blood that wouldn't bleed. Uma

>

>

>

> > > In a message dated 9/23/00 11:32:09 AM Pacific Daylight

> Time,

> > > mcamp10139@a... writes:

> > >

> > > <<

> > > Before getting a ISAC panel form Hemex, why not do a

> simple

> > > coagulation test. That would be to stick yourself and then to

> see

> > > how quickly (or slowly) you stop bleeding. I had this done

> once

> > > and I know there are standards with which to make a

> determination.

> > > I think I had mine before nasal surgery because I had taken

> some

> > > aspirin or something. Just a thought.

> > > >>

> > >

> > >

> > > This might not be such a good idea because I did exactly

> this. I

> > bled pretty

> > > good so I thought I must not be coagulated.......I was very

> wrong!

> > I just

> > > got back my HEMEX panel and I am very coagulated. So

> please if you

> > aren't

> > > sure get the test. karen

>

>

> 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.

>

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Hi Mike,

My Hemex test came out normal recently, but my NMH

(dysautonomia) is really kicking up and starting to cause heart

problems. Not currently in a relapse cycle. Heart beat is 48 BPM.

resting pulse is 68 over 57 or right near that range. Definitely got

the blood problems but no hypercoagulable state now like I did

in the early years with the black blood that wouldn't bleed. Uma

> > In a message dated 9/23/00 11:32:09 AM Pacific Daylight

Time,

> > mcamp10139@a... writes:

> >

> > <<

> > Before getting a ISAC panel form Hemex, why not do a

simple

> > coagulation test. That would be to stick yourself and then to

see

> > how quickly (or slowly) you stop bleeding. I had this done

once

> > and I know there are standards with which to make a

determination.

> > I think I had mine before nasal surgery because I had taken

some

> > aspirin or something. Just a thought.

> > >>

> >

> >

> > This might not be such a good idea because I did exactly

this. I

> bled pretty

> > good so I thought I must not be coagulated.......I was very

wrong!

> I just

> > got back my HEMEX panel and I am very coagulated. So

please if you

> aren't

> > sure get the test. karen

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In a message dated 9/23/2000 1:32:01 PM Central Daylight Time,

mcamp10139@... writes:

>

> Before getting a ISAC panel form Hemex, why not do a simple

> coagulation test. That would be to stick yourself and then to see

> how quickly (or slowly) you stop bleeding. I had this done once

> and I know there are standards with which to make a determination.

> I think I had mine before nasal surgery because I had taken some

> aspirin or something. Just a thought.

>

Mike,

This test doesn't count. what hypercoag means is that you clot, bust the

clot and then reclot, distributing fibrin in abundance to clog up the tiny

capillaries, which lead to.....

The most common occurance of a hypercoag state would be bruising, for

nothing. Large knotted bruises that you don't remember getting and they stay

and stay and take forever to go away. If you are hypercoag and have deep

tissue surgery --without knowing you have this condition,--- you can bleed

out. Don't mean to be scary, but this is the case. What happens is that

initially you will start to heal, but that healing will be imperfect and

bleeding will start again and again and again... same reason your bruises

don't go away, but this will be on a gigantic scale.

To have a slow clotting time, the way you have explained it means that your

blood is extremely thin, just the opposite of hyper coag " thick blood " . You

will probably have mishappen or fewer platlets than you should... which if

aspirin or some other agent is not involved, look for a blood pool disorder.

Ruth

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  • 1 month later...

Anything that mentions a " cure " catches my eye! Steve, have you tried this

protocol yet? And have any others on the list tried it with major results?

I find this even more interesting because I was tested way back in MAY, and

my results seem to be in limbo. My doctor's office never got them and the

labs can't seem to find them either. It frustrates me because it takes so

much out of me to go for blood work, I don't want to have to venture out

again for a retest! But if we're talking " cure, " it might be worth it?!

Laurel

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

In a message dated 11/15/2000 2:02:46 AM US Mountain Standard Time,

egroups writes:

<<

Message: 2

Date: Tue, 14 Nov 2000 16:59:38 -0800

From: " R. Bullock " <bullocks@...>

Subject: Re: Ellen, regarding Cheney

Ellen,

It was well worth the money. However, before you arrange to see Cheney or

any other CFS/FMS specialist, I would recommend you get an ISAC test done.

If you test positive on the ISAC (www.hemex.com), Berg's protocol may be

more direct, effective, and has the potential to cure the illness vs. lessen

the symptoms. Steve B. >>

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  • 5 months later...
Guest guest

Madeleine wrote:

.... it has to do with hypercoagulation of the

blood and the heparin clears out the gunk

allowing better access to the bugs by the abx and a

quicker treatment period ...

Hi All,

Please let me refer you to

IMMUNE SYSTEM ACTIVATION of COAGULATION (ISAC)

Blood Coagulation and Fibrinolysis 1999: 10 435-438.

You can read the article at

http://www.centurytel.net/tjs11/bug/l8.htm

Because I have atrial fibrillation, I take 10 mg coumadin

every day (along with my 5 aspirins). My last Bowen result

(a month ago) showed no Erlichiosis and also a greater

reduction in spirochete concentration (in the blood) than

any other family member.

Jack

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Guest guest

Madeleine,

I'm familiar witth the reasoning, I have tried to talk about

hypercoadulation pbs with Lyme on several Lyme forums but nobody seemed very

interested. I had coag tests done (not Hemex, I'm in France) but all was OK

except fibrinogen which was slightly elevated. I am taking bromelain but I

have to be careful as I get more spontaneous bruising when I'm on it so I

don't take it all the time.

Nelly (on cfs lists as well)

>

> Anyway I was wondering if anyone has had the Hemex Labs (Dave Berg.)

> ISAC panel and if any of you are taking heparin. I don't know if I

> can explain it accurately for anyone not familiar with this but it

> has to do with hypercoagulation of the blood and the heparin clears

> out the gunk allowing better access to the bugs by the abx and a

> quicker treatment period.

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  • 2 months later...
Guest guest

Hope,

Thank you SO MUCH for your post re: HEMEX. My husband has a genetic

clotting defect and I was able to convince the doc to order the Lovenox

instead of the coumadin. He had to anticoagulate for 6 months.

My concern about this therapy is that Coumadin is a nasty drug, and

interacts with just about everything under the sun - most other drugs,

foods, herbs, etc. Did you have any trouble getting insurance to cover the

Lovenox? It is soooooo expensive!

Thanks again for sharing this - I am very interested in this.

Here's a question for the whole group - Any6one have an opinion or personal

experience with Chelation Therapy?

Take care,

NurseDeb

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