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» LymeNet Flash » Questions and Discussion » Medical Questions » Protein S defiecency - anyone else?

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Author Topic: Protein S defiecency - anyone else?
tickedoffjan
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I have read topics on here addressing "sticky blood". I had a stroke when I was 28 and it was then that we found out I had protein s defiecency (that word looks like it is spelled wrong - sorry if it is).

I know that lyme disease can cause hypercoagulation and was wondering if anyone else might have some sort of clotting disorder, especially the protein s one.

Jan

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olivia_ham
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No, but I have prothrombin gene mutation factor 2, and recently found out I also have factor 5...craziness.

I've been on coumadin since April, and along with ABX, I've been feeling like I've been herxing ever since.

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tickedoffjan
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Thanks for replying Olivia. I am on coumadin as well, actually since 1994. I am sure you know to have your INR checked weekly when on abx.

Jan

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olivia_ham
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Yup, I've actually gotten it down to once every two weeks...way better than twice a week!

Have you noticed any side effects from coumadin over the years?

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tickedoffjan
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Not really, other than hair lost. But that is a toss up as to whether it is from lyme or coumadin. I am on a fairly large dose - 11mg daily.

I'm not sure when I contacted lyme so I don't know if coumadin caused herxing as I would have been unaware of what herxing was.

Best of luck and health!

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pamoisondelune
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Olivia---Why are you on Coumadin? I've read that people aren't put on Coumadin until after a second blood clot--- have you had two blood clots, or have the rules changed?
Did your doctor think your 2 clotting factors were serious enough to necessitate coumadin? I have the same factors, but i seem, i imagine, to be doing fine on high-dose Nattokinase. Do you have some other risks in your situation to deal with? I've read that many people with the Leiden V gene live a long life without even knowing they have the gene.

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olivia_ham
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Pamoisondelune...Hi. I only had one clot, and as you guessed, since I have both gene mutations, my doc (hematologist) thinks I should remain on coumadin for life. I'm not too thrilled about it...would really rather try the enzyme approach.

When one takes enzymes like nattokinase, is INR monitored like it is when on coumadin so that it's in that "therapeutic" range?

I'm curious to find out what my llmd who is an ND thinks.

Sticky blood [Frown]

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pamoisondelune
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Olivia--- I'd really like to know if your hematologist categorically puts everyone with those 2 mutations on coumadin for life, or if he is factoring in other risks?

The hematologist should know a lot more about your risks than an ND or LLMD.

Nattokinase has a good reputation among patients in this area, but NOTHING is MEDICALLY PROVEN yet, as of ayear or so ago. I stopped reading the blood clot forum; i'm not current.

See Dr Moll's website, he's the hematology expert; you can ask him questions, i think.

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pamoisondelune
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PS. From what i've heard, Nattokinase doesn't change the INR; but i'm not an expert; and i've never had my INR tested; although i should and am curious.

On a forum i read that one woman, a chiropractor who works with doctors, researched Nattokinase for a year before starting to take it--- concurrently with her Coumadin! She takes them both.

Coumadin would be really bad for me since i have osteoporosis, which i treat NOT with doctors' proferred drugs but with Vit K2 menaquinone-4 (=menatetranone) and Strontium and other things.

I suggest reading some blood clot forums and consulting Dr Moll, or getting a second opinion.

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olivia_ham
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Olivia--- I'd really like to know if your hematologist categorically puts everyone with those 2 mutations on coumadin for life, or if he is factoring in other risks?


I will ask next time I see him!

P---thanks for all of your info!

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livinlyme
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i wish someone would have posted the answer to this question here i am in dire need of finding it concerns me as my grandfather died after being on coumadin and then shortly after heparin and he had issues with his fibrinogen anyone want to open this up and give me some insight here on coumadin my mother is sort of being pushed to get on it and she is completely opposed to she started back on nattokinase and has been feeling much better but the inratio numbers still show her in deadly low ranges.. anyone please help or pm me or email me direct I do not get online that often anymore.. thanks in advance as I will check somewhere along the lines I hope before anything serious happens

--------------------
"Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it."

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