LymeNet Flash: Help - Lyme and blood clotting

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Posted by johnnyb (Member # 7645) on :

I've noticed that post-tick bite, my right lower leg will feel "dead" in a specific spot at times.

About 3 months ago, I also gotten a horrible cramp in this same area out of nowhere, which went away 15 minutes later.

Stabbing pains in my hands and feet as well.

I know this could all be due to the lyme, but do any of you have a high tendency to clot caused by lyme disease?

I found APS (hughes syndrome) on the web, but this looks like a different animal.

Are there any blood tests that I should ask my doctor to do, now that I know I have lyme?

Any info appreciated!

- JB

Posted by lymeinhell (Member # 4622) on :

Up the magnesium intake. I'm assuming you were given Magnesium with Potassium to take from your LLMD... It's a fairly low dose - so take it often. I take 8 capsules a day, every 2-3 hours. And keep raw almonds handy, and make them your regular snack, along with raw broccoli.

I would suggest you ask to get your mag. levels tested - although this only tests your blood levels, not your cells. My guess is this is what's causing the cramps. I get foot cramps - that's when I know it's time to get another IM shot... which I'll be doing next week.

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Julie G.
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lymeinhell

Posted by tickedntx (Member # 5660) on :

www.hemex.com

Jellybelly is extremely knowledgable on this subject. You might want to email her and point her to this thread.

Posted by 1tick3victims (Member # 7445) on :

Yes and yes to answer simply.

I recently found out that I have a clotting disorder and was shocked. My llmd had ordered the specific blood test because he is aware that lyme patients (not sure if it is chronic lyme patients) have this particular condition.

Please refer your dr. to www.hemex.com for the appropriate labs (ISAC panel). Most drs. and even llmds are not aware of this condition, so they are not aware of the correct bloodwork or treatment.

Per Hemex Lab physicians, "this hypercoagulable state does not result in a thrombosis, but rather in fibrin deposition. We suggest that an appropriate name for this antiphospholipid antibody process would be Immune System Activation of Coagulation (ISAC) syndrome."

This topic has been discussed here in the past few months, but I can't recall the title.

Hope this is helpful. I would suggest getting yourself checked asap.

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best regards and blessings,
paisley

Posted by tickedntx (Member # 5660) on :

The downside to Hemex testing is the expense, and most insurance does not cover most of the cost. I had the testing done two years ago and it cost me close to $1000 for the initial panel and, subsequently, the hereditary panel.

The only test that came back out of range in the first panel was fibrinogen, which was high on the Hemex scale but when I had fibrinogen retested a few months later at LabCorp, it came back at the same level and was within their normal range.

I think that this is a distinction made by Hemex between "normal" (what is seen in the wider population) and "optimal".

Doctors who are familiar with Hemex testing know which tests to order from commercial labs which can save you a lot of money. My doctor needed to rely on Dave Berg's expertise and so I needed to be tested at Hemex.

I ended up not doing anything about the results because I could not make myself comfortable with using Heparin based on a conversation with a relative who is a hematologist. I have, however, seen many people discuss the good safety profile of the low doses which are used.

I did use Nattokinase for a while last summer but can't really say what role it played. I am considering adding it back as I have seen many people say that it has helped them.

Lumbrokinase is supposed to be better, but it is much more expensive.

Posted by johnnyb (Member # 7645) on :

Thanks, All.

I couldn't seem to get jellybelly's email address, so I am hoping she will stumble upon this...

I will check out hemex in the meantime, and try to use a cheaper alternate if possible.

- JB

Posted by Carol in PA (Member # 5338) on :

I found the previous LymeNet discussions about hypercoagulation very interesting.

Since I had the symptoms, I decided to try systemic enzymes and see if anything happened.

I hit the jackpot with Wobenzym. http://www.iherb.com/wobenzym.html

This product has reduced my headaches. I used to wake up with a headache almost all the time, and now I don't.

What I really want is something that will give me back my mind.

Carol

Posted by LymeinPrincetonNJ (Member # 7696) on :

It may not be Lyme at all. I have a high clotting factor that is the result of a genetic predisposition called Factor V Leiden. The only reason I found out was because my mother had a blood clot and her oncologist did the DNA marker test and found out she has the disorder. When my younger sister got a blot clot in her leg, I decided it was time for a test. It came out positive. I am homozygous Factor V Leiden, which means I have only one parent that passed the gene onto me. It's pretty common, actually, about 10 - 30% of the population are Factor V positive. It just makes one 3 to 8 times more likely to have a blood clot, so things that might cause thrombosis (hormones, steriods, etc.) have to be monitored.

Another blood test to test your clotting factor is called a D-DIM. Anything above 200 or so indicates a high clotting factor. (Last checked my D-DIM was 616, but may have been the results of taking prednisone for asthma.)

If you're bruising very easily, or feel like you have a constant "charlie horse" in your calf or thigh, or you have numbness and coldness in your arm or leg, then have it checked out by the doc ASAP. If you have a history of blood clots in your family, then get the Factor V blood test.

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LymeinPrincetonNJ

Posted by Jellybelly (Member # 7142) on :

Hi JB,

I have a little website where I store research. There is a whole topic on hypercoagulation/ISAC and another topic on Digestive Enzymes which can do a real good job of fixing things up, IF your blood isn't to badly messed up. You would likely want to talk to a doc first, but the Nattokinase is considered very safe.

As stated above there have been some conversations here and you could look them up in the archives, but the search feature doesn't work all that often.

So here is a link to my website, then you can come back here and ask any questions you have.

http://cure2003.conforums.com/index.cgi?board=coagulation

Posted by treepatrol (Member # 4117) on :

http://www.anapsid.org/cnd/diffdx/hypercoagulation.html
http://www.ilads.org/burrascano_1102.htm#sympt
http://www.diagnose-me.com/cond/C546624.html

There are test for it I would try a asprin a day untill you talk to a LLMD