Re: Preliminary report on coagulation testing

November 1, 2007

I just wanted to emphasize, for those who don't know much about the connection between hypercoagulation and infection, why testing may be very relevant to pwc . As I mentioned previously, Dr. Gleuck is doing a study right now on hereditary clotting disorders and pseudotumor cerebri (intracranial hypertension). I've believed for a while that those of us with chronic infections are probably suffering from a mild form of PTC/ICH. It's not much of a stretch since CFS is even called myalgic encephalitis (brain inflammation) by most countries outside of the U.S. The symptoms of both illnesses are largely the same. Dr. Gleuck believes that PTC/ICH is directly linked to hypercoagulation and is currently conducting a study on it. By extension, we know that hypercoagulation is linked to infection and many believe that if we can reduce hypercoagulation, we have a better chance of reducing

our infections. If we can get proof that we have these clotting disorders, then we are more likely to be taken seriously by docs, especially when situations arise that need treatment. Plus, treatment is more likely to be effective because less clumpy/sticky blood means better drug dispersal and a better functioning immune system all around. If you test positive, you will probably be treated differently by docs and insurance. They may not get our entire illness, but they'll be a heck of a lot more careful when treating you. Most people don't find out they have these clotting disorders until AFTER they've had a stroke or heart attack. If you know you've got them, then you're that much better equipped to get better medical care up front and prevent these disastrous events. I highly encourage people to get the testing done. If your local doc won't order it

for you, I'd recommend contacting Dr. Glueck directly for help. HEMEX, which is known in pwc circles, also performs many of these same tests and could probably refer you to doctors willing to do this kind of testing in your area, but I'm not sure their tests are as comprehensive or as highly regarded as those backed by Dr. Glueck. Plus, they may be expensive. You can do the research yourself and compare. Dr. Glueck's website tells you exactly what tests you need and he even provides all the forms to send to the lab, and all the permission forms for your doc to fill out. All he really needs to do is draw the blood. The best part is that he takes insurance which covers all the costs associated with the testing. penny Penny Houle <pennyhoule@...> wrote: Hi all, My doc called me this a.m. with the results of my coagulation testing through Dr. Glueck and mdl labs ( www.mdl-labs.com ). I need to see the labs myself and to talk with Dr. Glueck to better understand everything, but I know now that I tested positive for at least 4 of the genetic clotting disorders. This is not only high, it probably explains why I have osteonecrosis of the jaw & had minocycline induced pseudotumor cerebri. It may also explain the chronic migraines, not to mention a potential

venous thrombotic clot (according to one person who viewed my CT scans) as well as high cholesterol and extreme difficulty fighting chronic infections. Unfortunately these genetic disorders contribute to a self perpetuating cycle because chronic infections also cause hypercoagulation. This clotting issue is really important for pwc to understand because not only is it related to many of our health issues, but the people with these hereditary clotting disorders are proven to be at HIGH risk (3 to 80 times the norm) for heart attack and stroke. Glueck highly recommends that patients with these clotting factors take warfarin as a preventative. He gave me a recommended starting dose of warfarin to work toward achieving the appropriate INR, which is different from people who don't have the clotting disorders. I believe that many pwc

(people with chronic infection & inflammation), would probably test positive for one or more of these genetic clotting disorders and would benefit from blood thinners to reduce the inflammation and help fight infection more effectively. Pwc I talk to on blood thinners say that their headaches and body pain disappear, etc., not to mention their risk factors are greatly reduced. Unfortunately Dr. Glueck says we're probably 10 years away from routine testing for even the most basic thrombotic clotting disorder which causes death in women who take estrogen or birth control pills. If you want to know more about thrombophilia, I recommend you visit Dr. Gleuck's website. He is THE authority in the field of coagulation disorders and their consequences and has hundreds of studies and articles to back him up. http://www.jewishhospitalcincinnati.com/cholesterol/index.html penny .

November 1, 2007

One of the coagulation disorders results in elevated homocysteine levels in the blood which leads to, along with stroke and heart attack, memory loss and cognitive dysfunction (sound familiar?). Here's an article by a supplement company on the risks and neurotoxic effects associated with elevated homocysteine and countering them with B vitamin supplementation. I don't know if the supplements are effective or not (although I've responded well to B complex in the past), but the general information in the article is worthwhile and the cognitive & B issues are something most pwc are very familiar with. http://www.vitacost.com/newsletter/newsletter.cfm?nl=241 pennyPenny Houle <pennyhoule@...> wrote: Hi all, My doc called me this a.m. with the results of my coagulation testing through Dr. Glueck and mdl labs ( www.mdl-labs.com ). I need to see the labs myself and to talk with Dr. Glueck to better understand everything, but I know now that I tested positive for at least 4 of the genetic clotting disorders. This is not only high, it probably explains why I have osteonecrosis of the jaw & had minocycline induced pseudotumor cerebri. It may also explain the chronic migraines, not to mention

a potential venous thrombotic clot (according to one person who viewed my CT scans) as well as high cholesterol and extreme difficulty fighting chronic infections. Unfortunately these genetic disorders contribute to a self perpetuating cycle because chronic infections also cause hypercoagulation. This clotting issue is really important for pwc to understand because not only is it related to many of our health issues, but the people with these hereditary clotting disorders are proven to be at HIGH risk (3 to 80 times the norm) for heart attack and stroke. Glueck highly recommends that patients with these clotting factors take warfarin as a preventative. He gave me a recommended starting dose of warfarin to work toward achieving the appropriate INR, which is different from people who don't have the clotting disorders. I believe that

many pwc (people with chronic infection & inflammation), would probably test positive for one or more of these genetic clotting disorders and would benefit from blood thinners to reduce the inflammation and help fight infection more effectively. Pwc I talk to on blood thinners say that their headaches and body pain disappear, etc., not to mention their risk factors are greatly reduced. Unfortunately Dr. Glueck says we're probably 10 years away from routine testing for even the most basic thrombotic clotting disorder which causes death in women who take estrogen or birth control pills. If you want to know more about thrombophilia, I recommend you visit Dr. Gleuck's website. He is THE authority in the field of coagulation disorders and their consequences and has hundreds of studies and articles to back him up. http://www.jewishhospitalcincinnati.com/cholesterol/index.html penny dumbaussie2000 <dumbaussie2000 .au> wrote: aOnce again you've thrown the baby out with the bath water..Fevereshly we emphasised how important carefull scanning for infection was and everything else wasn't going to deliver, but more importantly! waste your time... not to mention get you offside with all your follow up appointments as your scans are all clear supposedly..Now we have another farce that see's your efforts going into believing some medical paper on glutamate toxicity and peniciliin's affects on it..which by the way is totally against the grain

of everything we've understood and fought for in these conditions..Again today chatting with another lyme person, the hard drug protocols over many months have seen her friends go into remission from your style of symptoms..I don't know if you read that well with your rose coloured glasses ?tony> > >> > > Tony and Matt,> > > > > > So far since I started the penicillin VK on Tuesday morning and > > took 3 grams> > > a day my head ache decreased amazingly even on Tuesday. This > would > > SEEM to> > > be the effect of reducing glutamate as I doubt there would be a > > bacteria> > > die-off that quickly. But I am just speculating. This is the > first > > time in> > > 16 months I have strung 5 days of almost headache free time > > together. > > > > > > I upped the Lyrica on Thursday night to 150 mg, but the headache > > had already> > > cleared for 2 days prior to that. Thursday evening it

got > somewhat > > bad> > > again, thus I decided to increase the Lyrica. I've been on 75 mg > of > > Lyrica> > > every 12 hours, but this did NOT relieve the headache, only > > temporarily> > > cleared the symptoms until the Lyrica wore off, and some days it > > didn't even> > > do that - bad days.> > > > > > a> > > > > > Matt> > > I realised along time ago that the literature, that your so big > on, > > > isn't worth the paper it's written on most of the time.I can't > > > really see anyone putting in penicillin and it having a reduction > > in > > > toxicity not an effect on the trillion organisms that are part of > > the > > > human body.> > >> >>

November 1, 2007

Penny,

Do you know which clotting disorders you tested positive for?

Have you, alongside abx ever tried to use fibrinolytic enzymes? They can pack a real punch even if you don't have GENETIC hypercoag issues (we all have hypercoagulation issues with chronic infections, which of course can be both cause and consequence thereof).

My husband has the Factor V Leiden heterozygotous mutation which means that he has excess fibrin (not enough lysis of the produced fibrin). He takes nattokinase and we think it helps (hard to say of course). But I can't take nattokinase or bromelain at all with abx, they give me the worst headaches ever.

Good that you had this tested. Did you have the clotting parameters tested before doing the genetic tests or did they just do the genetic tests?

Nelly

Re: [infections] Preliminary report on coagulation testing

I just wanted to emphasize, for those who don't know much about the connection between hypercoagulation and infection, why testing may be very relevant to pwc .

As I mentioned previously, Dr. Gleuck is doing a study right now on hereditary clotting disorders and pseudotumor cerebri (intracranial hypertension). I've believed for a while that those of us with chronic infections are probably suffering from a mild form of PTC/ICH. It's not much of a stretch since CFS is even called myalgic encephalitis (brain inflammation) by most countries outside of the U.S. The symptoms of both illnesses are largely the same.

Dr. Gleuck believes that PTC/ICH is directly linked to hypercoagulation and is currently conducting a study on it. By extension, we know that hypercoagulation is linked to infection and many believe that if we can reduce hypercoagulation, we have a better chance of reducing our infections. If we can get proof that we have these clotting disorders, then we are more likely to be taken seriously by docs, especially when situations arise that need treatment. Plus, treatment is more likely to be effective because less clumpy/sticky blood means better drug dispersal and a better functioning immune system all around.

If you test positive, you will probably be treated differently by docs and insurance. They may not get our entire illness, but they'll be a heck of a lot more careful when treating you. Most people don't find out they have these clotting disorders until AFTER they've had a stroke or heart attack. If you know you've got them, then you're that much better equipped to get better medical care up front and prevent these disastrous events.

I highly encourage people to get the testing done. If your local doc won't order it for you, I'd recommend contacting Dr. Glueck directly for help. HEMEX, which is known in pwc circles, also performs many of these same tests and could probably refer you to doctors willing to do this kind of testing in your area, but I'm not sure their tests are as comprehensive or as highly regarded as those backed by Dr. Glueck. Plus, they may be expensive. You can do the research yourself and compare. Dr. Glueck's website tells you exactly what tests you need and he even provides all the forms to send to the lab, and all the permission forms for your doc to fill out. All he really needs to do is draw the blood. The best part is that he takes insurance which covers all the costs associated with the testing.

penny

Penny Houle <pennyhoule@...> wrote:

Hi all,

My doc called me this a.m. with the results of my coagulation testing through Dr. Glueck and mdl labs ( www.mdl-labs.com ). I need to see the labs myself and to talk with Dr. Glueck to better understand everything, but I know now that I tested positive for at least 4 of the genetic clotting disorders. This is not only high, it probably explains why I have osteonecrosis of the jaw & had minocycline induced pseudotumor cerebri. It may also explain the chronic migraines, not to mention a potential venous thrombotic clot (according to one person who viewed my CT scans) as well as high cholesterol and extreme difficulty fighting chronic infections. Unfortunately these genetic disorders contribute to a self perpetuating cycle because chronic infections also cause hypercoagulation.

This clotting issue is really important for pwc to understand because not only is it related to many of our health issues, but the people with these hereditary clotting disorders are proven to be at HIGH risk (3 to 80 times the norm) for heart attack and stroke. Glueck highly recommends that patients with these clotting factors take warfarin as a preventative. He gave me a recommended starting dose of warfarin to work toward achieving the appropriate INR, which is different from people who don't have the clotting disorders.

I believe that many pwc (people with chronic infection & inflammation), would probably test positive for one or more of these genetic clotting disorders and would benefit from blood thinners to reduce the inflammation and help fight infection more effectively. Pwc I talk to on blood thinners say that their headaches and body pain disappear, etc., not to mention their risk factors are greatly reduced. Unfortunately Dr. Glueck says we're probably 10 years away from routine testing for even the most basic thrombotic clotting disorder which causes death in women who take estrogen or birth control pills.

If you want to know more about thrombophilia, I recommend you visit Dr. Gleuck's website. He is THE authority in the field of coagulation disorders and their consequences and has hundreds of studies and articles to back him up.

http://www.jewishhospitalcincinnati.com/cholesterol/index.html

penny

..

November 1, 2007

Nelly

Nice to have you back..

tony

> Hi all,

>

> My doc called me this a.m. with the results of my coagulation

testing through Dr. Glueck and mdl labs ( www.mdl-labs.com ). I need

to see the labs myself and to talk with Dr. Glueck to better

understand everything, but I know now that I tested positive for at

least 4 of the genetic clotting disorders. This is not only high, it

probably explains why I have osteonecrosis of the jaw & had

minocycline induced pseudotumor cerebri. It may also explain the

chronic migraines, not to mention a potential venous thrombotic clot

(according to one person who viewed my CT scans) as well as high

cholesterol and extreme difficulty fighting chronic infections.

Unfortunately these genetic disorders contribute to a self

perpetuating cycle because chronic infections also cause

hypercoagulation.

>

> This clotting issue is really important for pwc to understand

because not only is it related to many of our health issues, but the

people with these hereditary clotting disorders are proven to be at

HIGH risk (3 to 80 times the norm) for heart attack and stroke.

Glueck highly recommends that patients with these clotting factors

take warfarin as a preventative. He gave me a recommended starting

dose of warfarin to work toward achieving the appropriate INR, which

is different from people who don't have the clotting disorders.

>

> I believe that many pwc (people with chronic infection &

inflammation), would probably test positive for one or more of these

genetic clotting disorders and would benefit from blood thinners to

reduce the inflammation and help fight infection more effectively.

Pwc I talk to on blood thinners say that their headaches and body

pain disappear, etc., not to mention their risk factors are greatly

reduced. Unfortunately Dr. Glueck says we're probably 10 years away

from routine testing for even the most basic thrombotic clotting

disorder which causes death in women who take estrogen or birth

control pills.

>

> If you want to know more about thrombophilia, I recommend you

visit Dr. Gleuck's website. He is THE authority in the field of

coagulation disorders and their consequences and has hundreds of

studies and articles to back him up.

>

> http://www.jewishhospitalcincinnati.com/cholesterol/index.html

>

> penny

>

> .

>

November 1, 2007

Hi Nelly, I don't have the lab results in front of me yet so all I can do in the meantime is try to remember what my doc read over the phone. There was a lot of info and even he was finding it complicated to sort through. I definitely remember that I was heterozygous and homozygous on different tests but don't recall which ones. I remember for sure that he said I have the MTHFR gene, because it is aptly nicknamed to sound exactly how it looks by people in the autism community, or so my doctor tells me, and hearing him call it the Mother F***er gene definitely woke me up! That's the one that I think allows an excess of homocysteine ( & inability to process nitrous oxide?). It can cause stroke and heart attack and interferes with pregnancy. I'm fortunate that I carried 2 healthy kids to term. I'm pretty sure I have the Factor V Leiden that you describe (protein C

resistance...estrogen replacement or birth control can be deadly for women who carry that gene so I need to get my girls tested asap, and am glad I've always been wary of any estrogen tinkering). Then there's the PA-1 gene (linked to osteonecrosis) which I definitely have and the Prothrombin gene mutation (which predisposes one to venous thrombosis). The only one left is the Glycoprotein IIIA, which is related to PA-1 vs PA-2, and I think that's the one he said I was okay on. I can't remember all the details, just that I tested positive for 4 out of the 5. The 6th and final test was to determine, based on my results, how much coumadin/warfarin I'd need to start on. I don't know if that somehow involves finding the parameters you mentioned. Several of these defects allow an excess of unhealthy fibrin which leads to a variety of health problems and is speculated to be

involved in fibromyalgia & CFS. According to Dr. Glueck's extensive research, he says it doesn't matter how many supplements you take (with the exception of B vitamins) they will not help you thin the blood enough if you have these genetic disorders. Combine that preexisting condition with the hypercoagulation we have as a result of our infections, and it's no wonder we feel so freakin' crummy. And it certainly would explain why many of us have felt that B vitamins relieve some of our symptoms. My doc of course wants me to take about 15 different supplements rather than coumadin. He wants me to take niacin together with some kind of liquid iodine drops, circumen, hemp and flax oil, vitamin D, acetylcholine and a host of other things I can't remember right now. I've already been way down that road and based on Glueck's expertise on the subject, I plan on either talking him into letting

me try the coumadin with some B supplementation, or going to a hematologist to get it prescribed. If this treatment could stop the fear of migraines I live with and all the meds I have to take to prevent them, I'd be ecstatic. I've been becoming more and more concerned that these migraines and/or the meds are leading me toward a stroke. And I've been getting worried about my cardio health for a while as well. This all makes sense, now that I've had the tests done. As a reference point, I know several people who've responded very well to coumadin including a microbiologist here at the UCSD lab who is not currently ill but has some of these genetic defects and has been on coumadin for years now and says she will be for the rest of her life, just to maintain good health. You can see the specific tests and what they mean under "Thrombosis Panel" at: http://www.mdl-labs.com/ Since your husband was tested, have you been tested as well? If so, have you considered warfarin /coumadin? penny Nelly Pointis <janel@...> wrote: Penny, Do you know which clotting disorders you tested positive for? Have you, alongside abx ever tried to use fibrinolytic enzymes? They can pack a real punch even if you don't have GENETIC hypercoag issues (we all have hypercoagulation issues with chronic infections, which of course can be both cause and consequence thereof). My husband has the Factor V Leiden heterozygotous mutation which means that he has excess fibrin (not enough lysis of the produced fibrin). He takes nattokinase and we think it helps (hard to say of course). But I can't take nattokinase or bromelain at all with abx, they give me the worst headaches ever. Good that you had this tested. Did you have the clotting parameters tested before doing the genetic

tests or did they just do the genetic tests? Nelly Re: [infections] Preliminary report on coagulation testing I just wanted to emphasize, for those who don't know much about the connection between hypercoagulation and infection, why testing may be very relevant to pwc . As I mentioned previously, Dr. Gleuck is doing a study right now on hereditary clotting disorders and pseudotumor cerebri (intracranial hypertension). I've believed for a while that those of us with chronic infections are probably suffering from a mild form of PTC/ICH. It's not much of a stretch since CFS is even called myalgic encephalitis (brain inflammation) by most countries outside of the U.S. The symptoms of both illnesses are largely the same. Dr. Gleuck believes that PTC/ICH is directly linked to hypercoagulation and is currently conducting a study on it. By extension, we know that hypercoagulation is linked to infection and many believe that if we can reduce hypercoagulation, we have a

better chance of reducing our infections. If we can get proof that we have these clotting disorders, then we are more likely to be taken seriously by docs, especially when situations arise that need treatment. Plus, treatment is more likely to be effective because less clumpy/sticky blood means better drug dispersal and a better functioning immune system all around. If you test positive, you will probably be treated differently by docs and insurance. They may not get our entire illness, but they'll be a heck of a lot more careful when treating you. Most people don't find out they have these clotting disorders until AFTER they've had a stroke or heart attack. If you know you've got them, then you're that much better equipped to get better medical care up front and prevent these disastrous events. I highly encourage people to get the testing done. If your

local doc won't order it for you, I'd recommend contacting Dr. Glueck directly for help. HEMEX, which is known in pwc circles, also performs many of these same tests and could probably refer you to doctors willing to do this kind of testing in your area, but I'm not sure their tests are as comprehensive or as highly regarded as those backed by Dr. Glueck. Plus, they may be expensive. You can do the research yourself and compare. Dr. Glueck's website tells you exactly what tests you need and he even provides all the forms to send to the lab, and all the permission forms for your doc to fill out. All he really needs to do is draw the blood. The best part is that he takes insurance which covers all the costs associated with the testing. penny Penny Houle <pennyhoule > wrote: Hi all, My doc called me this a.m. with the results of my coagulation testing through Dr. Glueck and mdl labs ( www.mdl-labs.com ). I need to see the labs myself and to talk with Dr. Glueck to better understand everything, but I know now that I tested positive for at least 4 of the genetic clotting disorders. This is not only high, it probably explains why I have osteonecrosis of the jaw & had minocycline induced pseudotumor cerebri. It may also explain the chronic migraines, not to mention a potential venous thrombotic clot (according to one person who viewed my CT scans) as well as high cholesterol and extreme difficulty fighting chronic infections. Unfortunately these genetic disorders contribute to a self perpetuating

cycle because chronic infections also cause hypercoagulation. This clotting issue is really important for pwc to understand because not only is it related to many of our health issues, but the people with these hereditary clotting disorders are proven to be at HIGH risk (3 to 80 times the norm) for heart attack and stroke. Glueck highly recommends that patients with these clotting factors take warfarin as a preventative. He gave me a recommended starting dose of warfarin to work toward achieving the appropriate INR, which is different from people who don't have the clotting disorders. I believe that many pwc (people with chronic infection & inflammation), would probably test positive for one or more of these genetic clotting disorders and would benefit from blood thinners to reduce the inflammation and help fight

infection more effectively. Pwc I talk to on blood thinners say that their headaches and body pain disappear, etc., not to mention their risk factors are greatly reduced. Unfortunately Dr. Glueck says we're probably 10 years away from routine testing for even the most basic thrombotic clotting disorder which causes death in women who take estrogen or birth control pills. If you want to know more about thrombophilia, I recommend you visit Dr. Gleuck's website. He is THE authority in the field of coagulation disorders and their consequences and has hundreds of studies and articles to back him up. http://www.jewishhospitalcincinnati.com/cholesterol/index.html penny .

November 1, 2007

No, I didn't have the genetic testing done. We both had a coagulation panel done (in which various parameters were tested) and my husband had some abnormal result (increased fibrinogen if I remember well and extremely low ESR), and that's why they offered to do the genetic testing (especially as one aunt and an uncle of his died at a youngish age, one at 49 from pulmonary embolism and the other age 60 of a stroke). He only had the F V Leiden heterozygous which they said, on its own is not too bad, and they would not treat with anything at all. They were really patronising and said, just walk upstairs instead of taking the lift and you'll be OK!!!!

All my parameters (not genetic) being normal they simply would not do any genetic testing. Here in France genetic testing is always a big deal and you just can't have it done any place. Plus all my rels live forever (90+). My husband had to go to this special place in that one Paris hospital and sign waivers etc.

Doctors know absolutely nothing about these mutations, they just look blankly when he asks for heparin before flying long distance (which he has to do frequently), but now he has one who just prescribes it.

Penny, this might be a turning point for you as you might be able to find a way to break the vicious circle of infection-hypercoagulation.

Nelly

Re: [infections] Preliminary report on coagulation testing

I just wanted to emphasize, for those who don't know much about the connection between hypercoagulation and infection, why testing may be very relevant to pwc .

As I mentioned previously, Dr. Gleuck is doing a study right now on hereditary clotting disorders and pseudotumor cerebri (intracranial hypertension). I've believed for a while that those of us with chronic infections are probably suffering from a mild form of PTC/ICH. It's not much of a stretch since CFS is even called myalgic encephalitis (brain inflammation) by most countries outside of the U.S. The symptoms of both illnesses are largely the same.

Dr. Gleuck believes that PTC/ICH is directly linked to hypercoagulation and is currently conducting a study on it. By extension, we know that hypercoagulation is linked to infection and many believe that if we can reduce hypercoagulation, we have a better chance of reducing our infections. If we can get proof that we have these clotting disorders, then we are more likely to be taken seriously by docs, especially when situations arise that need treatment. Plus, treatment is more likely to be effective because less clumpy/sticky blood means better drug dispersal and a better functioning immune system all around.

If you test positive, you will probably be treated differently by docs and insurance. They may not get our entire illness, but they'll be a heck of a lot more careful when treating you. Most people don't find out they have these clotting disorders until AFTER they've had a stroke or heart attack. If you know you've got them, then you're that much better equipped to get better medical care up front and prevent these disastrous events.

I highly encourage people to get the testing done. If your local doc won't order it for you, I'd recommend contacting Dr. Glueck directly for help. HEMEX, which is known in pwc circles, also performs many of these same tests and could probably refer you to doctors willing to do this kind of testing in your area, but I'm not sure their tests are as comprehensive or as highly regarded as those backed by Dr. Glueck. Plus, they may be expensive. You can do the research yourself and compare. Dr. Glueck's website tells you exactly what tests you need and he even provides all the forms to send to the lab, and all the permission forms for your doc to fill out. All he really needs to do is draw the blood. The best part is that he takes insurance which covers all the costs associated with the testing.

penny

Penny Houle <pennyhoule > wrote:

Hi all,

My doc called me this a.m. with the results of my coagulation testing through Dr. Glueck and mdl labs ( www.mdl-labs.com ). I need to see the labs myself and to talk with Dr. Glueck to better understand everything, but I know now that I tested positive for at least 4 of the genetic clotting disorders. This is not only high, it probably explains why I have osteonecrosis of the jaw & had minocycline induced pseudotumor cerebri. It may also explain the chronic migraines, not to mention a potential venous thrombotic clot (according to one person who viewed my CT scans) as well as high cholesterol and extreme difficulty fighting chronic infections. Unfortunately these genetic disorders contribute to a self perpetuating cycle because chronic infections also cause hypercoagulation.

This clotting issue is really important for pwc to understand because not only is it related to many of our health issues, but the people with these hereditary clotting disorders are proven to be at HIGH risk (3 to 80 times the norm) for heart attack and stroke. Glueck highly recommends that patients with these clotting factors take warfarin as a preventative. He gave me a recommended starting dose of warfarin to work toward achieving the appropriate INR, which is different from people who don't have the clotting disorders.

I believe that many pwc (people with chronic infection & inflammation), would probably test positive for one or more of these genetic clotting disorders and would benefit from blood thinners to reduce the inflammation and help fight infection more effectively. Pwc I talk to on blood thinners say that their headaches and body pain disappear, etc., not to mention their risk factors are greatly reduced. Unfortunately Dr. Glueck says we're probably 10 years away from routine testing for even the most basic thrombotic clotting disorder which causes death in women who take estrogen or birth control pills.

If you want to know more about thrombophilia, I recommend you visit Dr. Gleuck's website. He is THE authority in the field of coagulation disorders and their consequences and has hundreds of studies and articles to back him up.

http://www.jewishhospitalcincinnati.com/cholesterol/index.html

penny

..

November 1, 2007

Penny, when you speak of hypercoagulation etc, I wonder what

plant-derived enzymes (e.g. Now brand, etc), 2-3 capsules on

empty stomach chased with 4-8 oz water would do for you, as an

experiment. I have seen a single dose of enzymes clear up roulades

shown on darkfield microscopy completely, suggesting low levels

of enzymes may be a culprit, and that occasional enzymes on

empty stomach is useful to have in one's bag of tricks for acute

use.

---

High C-reactive protein is often addressed with adequate

folic acid and B12 for the individual.

Carol

November 1, 2007

Thanks, Nelly. I wish you could get tested too. You sound so much like you fit the profile. And my relatives, at least what I know about them, were quite long lived as well. Have you considered coming to the states for treatment? I suppose it would be extremely expensive. What about Asia or India, where they have some great doctors and much cheaper prices? penny Nelly Pointis <janel@...> wrote: No, I didn't have the genetic testing done. We both had a coagulation panel done (in which various parameters were tested) and my husband had some abnormal result (increased fibrinogen if I remember well and extremely low ESR), and that's why they offered to do the genetic testing (especially as one aunt and an uncle of his died at a youngish age, one at 49 from pulmonary embolism and the other age 60 of a stroke). He only had the F V Leiden heterozygous which they said, on its own is not too bad, and they would not treat with anything at all. They were really patronising and said, just walk upstairs instead of taking the lift and you'll be OK!!!! All my parameters (not genetic) being normal they simply would not do any genetic testing. Here in France genetic testing is always a big deal and you just can't have it done any place. Plus all my

rels live forever (90+). My husband had to go to this special place in that one Paris hospital and sign waivers etc. Doctors know absolutely nothing about these mutations, they just look blankly when he asks for heparin before flying long distance (which he has to do frequently), but now he has one who just prescribes it. Penny, this might be a turning point for you as you might be able to find a way to break the vicious circle of infection-hypercoagulation. Nelly Re: [infections] Preliminary report on coagulation testing I just wanted to emphasize, for those who don't know much about the connection between hypercoagulation and infection, why testing may be very relevant to pwc . As I mentioned previously, Dr. Gleuck is doing a study right now on hereditary clotting disorders and pseudotumor cerebri (intracranial hypertension). I've believed for a while that those of us with chronic infections are probably suffering from a mild form of PTC/ICH.

It's not much of a stretch since CFS is even called myalgic encephalitis (brain inflammation) by most countries outside of the U.S. The symptoms of both illnesses are largely the same. Dr. Gleuck believes that PTC/ICH is directly linked to hypercoagulation and is currently conducting a study on it. By extension, we know that hypercoagulation is linked to infection and many believe that if we can reduce hypercoagulation, we have a better chance of reducing our infections. If we can get proof that we have these clotting disorders, then we are more likely to be taken seriously by docs, especially when situations arise that need treatment. Plus, treatment is more likely to be effective because less clumpy/sticky blood means better drug dispersal and a better functioning immune system all around. If you test positive, you will probably be treated differently by docs

and insurance. They may not get our entire illness, but they'll be a heck of a lot more careful when treating you. Most people don't find out they have these clotting disorders until AFTER they've had a stroke or heart attack. If you know you've got them, then you're that much better equipped to get better medical care up front and prevent these disastrous events. I highly encourage people to get the testing done. If your local doc won't order it for you, I'd recommend contacting Dr. Glueck directly for help. HEMEX, which is known in pwc circles, also performs many of these same tests and could probably refer you to doctors willing to do this kind of testing in your area, but I'm not sure their tests are as comprehensive or as highly regarded as those backed by Dr. Glueck. Plus, they may be expensive. You can do the research yourself and compare. Dr. Glueck's website tells you exactly what

tests you need and he even provides all the forms to send to the lab, and all the permission forms for your doc to fill out. All he really needs to do is draw the blood. The best part is that he takes insurance which covers all the costs associated with the testing. penny Penny Houle <pennyhoule > wrote: Hi all, My doc called me this a.m. with the results of my coagulation testing through Dr. Glueck and mdl labs ( www.mdl-labs.com ). I need to see the labs myself and to talk with Dr. Glueck to better understand everything, but I know now that I tested positive for at least 4 of the genetic clotting disorders. This is not

only high, it probably explains why I have osteonecrosis of the jaw & had minocycline induced pseudotumor cerebri. It may also explain the chronic migraines, not to mention a potential venous thrombotic clot (according to one person who viewed my CT scans) as well as high cholesterol and extreme difficulty fighting chronic infections. Unfortunately these genetic disorders contribute to a self perpetuating cycle because chronic infections also cause hypercoagulation. This clotting issue is really important for pwc to understand because not only is it related to many of our health issues, but the people with these hereditary clotting disorders are proven to be at HIGH risk (3 to 80 times the norm) for heart attack and stroke. Glueck highly recommends that patients with these clotting factors take warfarin as a preventative. He gave me a recommended

starting dose of warfarin to work toward achieving the appropriate INR, which is different from people who don't have the clotting disorders. I believe that many pwc (people with chronic infection & inflammation), would probably test positive for one or more of these genetic clotting disorders and would benefit from blood thinners to reduce the inflammation and help fight infection more effectively. Pwc I talk to on blood thinners say that their headaches and body pain disappear, etc., not to mention their risk factors are greatly reduced. Unfortunately Dr. Glueck says we're probably 10 years away from routine testing for even the most basic thrombotic clotting disorder which causes death in women who take estrogen or birth control pills. If you want to know more about thrombophilia, I recommend you visit Dr. Gleuck's website. He is

THE authority in the field of coagulation disorders and their consequences and has hundreds of studies and articles to back him up. http://www.jewishhospitalcincinnati.com/cholesterol/index.html penny .

November 1, 2007

Penny, et all--Am glad you got this testing done as it is probably a

missing link for many. This was discussed very thoroughly on other

lists, including CFSExperimental 3 or more years ago. The guru then

was Berg of Hemex Lab. FWIW, Hope-

November 3, 2007

Just curious, what was your platelet count like?I think often we do

run pretty low platelet counts at times which mnay also explain this..

tony

>

> At the risk of sounding really dumb, I'm a CFS/EBV/FMer, and

recently tried taking 200mg of grapeseed extract daily and found it

really helped my energy level and pain, and helped me not get a

horrible cold that was going through the house. I stopped last week

because I had a blood draw in prep for surgery and at least for that

day my arm wouldn't stop bleeding without forceful pressure. Which

is to say i believe it has blood thinning properties. For what it's

worth.

>

November 4, 2007

What are they removing?

>> > At the risk of sounding really

dumb, I'm a CFS/EBV/FMer, and recently tried taking 200mg of

grapeseed extract daily and found it really helped my energy level

and pain, and helped me not get a horrible cold that was going

through the house. I stopped last week because I had a blood draw in

prep for surgery and at least for that day my arm wouldn't stop

bleeding without forceful pressure. Which is to say i believe it has

blood thinning properties. For what it's worth.> > > > >

>

November 4, 2007

Ask them to get a good culture from these things...And especially to

report anything growing, nothing to be dismissed as a contamination...

This approach/knowledge may help you in future health concerns..

With my logic- I'd be more interested in the toxicity of any

organisms, which may or may not be obesrved by minimul lab work ups,

but only by labs more like esoterix...

> > > Hi Tony - I don't have that data with me, I

will be able to look it up on Monday and let you know. Warning, I'm

not as sophisticated on medical vocabulary as you folks are, but I do

know I have data on clotting and RBC, which I believe is what you are

referring to. I recall that I was not anemic and I had one clotting

figure out of sorts. My father has a clotting disorder which I am

trying to get more information on because I think it would help

explain the pain if I have inherited that. Also curious to me, he had

polio as a young man and recently Nova (PBS) had a show about how we

inherit more than genes from our parents, that we can inheret any

physical insults that they experienced as well. I guess we're all

longsuffering medical pioneers. I really appreciate the conversations

you folks have here, thank you for all your hard work.> > >

infections@: dumbaussie2000@: Fri, 2 Nov 2007

23:30:19 +0000Subject: [infections] Re: Preliminary

report on coagulation testing> > > Just curious, what was

your platelet count like?I think often we do run pretty low platelet

counts at times which mnay also explain this..tony--- In

infections , SHELLEY REED <sreedp@>

wrote:>> > At the risk of sounding really dumb, I'm a CFS/EBV/FMer,

and recently tried taking 200mg of grapeseed extract daily and found

it really helped my energy level and pain, and helped me not get a

horrible cold that was going through the house. I stopped last week

because I had a blood draw in prep for surgery and at least for that

day my arm wouldn't stop bleeding without forceful pressure. Which is

to say i believe it has blood thinning properties. For what it's

worth.> > > > >>

>

November 5, 2007

>

>penny

wiki the word epigenetic

November 6, 2007

Doctors and pathology are such a pathetic act. You'll have your cysts

removed and will only get a report for 'cancerous tissue', or

non 'cancerous tissue'..This is fine information if like many your

generally travelling well, but when you need a little more back up

information when your not travelling well thru life, you need to push

that little harder to get more.. otherwise you'll end up like a,

never any wiser after a long stretch of appointments..

This basic principal applies to anything we do, because thanks to the

net you'll see people time and time again waist many years and often

decades non the wiser with there ilness's..

In your case you basically want to know if the middle of the cyst

contains staph areus, pseudonomas, or any other organisms displaying

any toxic tendencies that can possably create these scenario's.

ANOTHER WAY OF LOOKING AT THINGS-I don't think the general query by

patient's -why is this occuring, THEN - WE DON'T KNOW BY THE DOCTOR..

GETS ANYONE ANYWHERE.. SO TAKE IT A STEP FURTHER WHENEVER OPPURTUNITY

PRESENTS IMO..

Tony