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please help hypercoagulation (clotted blood in lower leg)

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Posted 2/8/2015 9:36 PM (GMT 0)
I can believe how little this is mentioned. What an eye opener. I just evaded pulmonary embolism.

I was limping a couple days. No biggie, thats my life. BUT I could not message out the HUGE knot in my calf. Because It is a blood clott - per ulra sound. Out of the blue. No long sitting or anything-woke up limping thus morn. They pretty much said If I was a typical guy that ignores pain, I might be dead by now from PE.

LLMD took me off ABX 4 wks ago, I'm negative on a very accurate lyme culture test (culture not antibody).

I'm on cumaden, and sodium shots now, not happy about it.

Who else experienced this?

So now if I tell the vein Dr that I was treated for lyme with abx and supplements, I'm sure he'll go nuts on me.

On that subject I can take suppliments besides vitamins, and only tylenol for pain (no NSAIDS) while on these 2 blood meds.

I was hoping this was caused by one of the many supplements and was going to ask you all if any of the know lyme supplements can cause coagulation????????????????????

So I read it can be from lyme itself. BUT I'm negative on the cuture test and my c4a improved too.

I started a serrastreptase (spelling?) - it disolves fibrins. I wonder if it dislodged fibrins in my bold and "fell" to the lower leg?

What bites is I can take suppliments till I'm off cumaden (blood thinner). Managing blood coagulation is very touchy, a lot alters it. NO ABX at all on this - per Drs and Pharmacist. So I wonder how people on blood thinner beat lyme- on herbs only?

Any advise - please share. I dont feel very "lymie" right now and went off abx 4 wks ago anyway. But I want to try HH tea for possible bart again. I dont think I can do that now. I have no idea what it could do, plus the "vien" Dr would flip out.

thank you (my computer is hiccuping, I might not reply back tonight if anyone has questions)

If its not one thing it another.
Posted 2/8/2015 11:39 PM (GMT 0)
I'm very glad to hear that you are okay, Astroman!!! My hubby almost died from blood clots in his lungs (both lungs 70% full) and his legs (hip to ankle, both legs), so I know how serious this all is for sure!! What he has is called Factor V (5) - it's a condition that can develop very quickly for some - which is ironic as he almost bled to death (quite literally) just 4 years prior to developing the Factor V.

Amazingly, while it's a very dangerous situation, it doesn't happen very often. Many Lyme patients never experience enough issues with hypercoagulation issues to worry much about it.

My husband has to stay on warfarin (Coumadin) for the rest of his life - so avoid vitamin K - check everything you take, including your multi-vitamin. Green vegetables are high in vitamin K as well, so watch those. You will need to either keep a very steady stream of them in your diet or avoid them all together.

Here is a pretty good list of the vitamin K in different foods:
goo.gl/2MPhyO

Be very sure to get your blood check at least monthly. If this turns into long term use of warfarin for you, there is a home testing method that you can use. Hubby tests his blood each week and reports it to the doc and changes are made quickly that way.
Posted 2/9/2015 3:50 AM (GMT 0)
Glad you are ok. Nothing to mess around with.

I don't know anything about the supplements but I was reading Burrascano saying hypercoaguable states could be a cue for Babesia.

Just a thought. Don't know your med history.
Posted 2/9/2015 4:24 AM (GMT 0)
astroman:

I am glad you are ok, I don't have anything to add since I didn't experience this. I've heard it can be painful. I have heard an old wife tale about this--not sure if there is anything to it.

This lady used to get clothes a lot, she almost died from them several times. She says she takes a leaf of cabbage, rolls something on top of it to make it softer and more manageable, and she puts it on her leg--she mostly gets the cloths in her legs--where the problem is. She says it helps, I don't know how or if it does but I guess you can try it while laying down. It certainly won't hurt! And if you decide not to try it, maybe it will give you a good laugh :) I would try it however, you have nothing to lose except for a leaf of cabbage ;). She is on meds too on and off for cloths.

Best of luck!
Posted 2/9/2015 4:32 AM (GMT 0)
The meds and diagnosis were from saturday urgency care. So I will see a reg Dr Monday to figure out how this happened. I contacted my LLMD too. Really dont want to be on cumaden for life, hope its a temporary thing, cross your fingers for me.

Giving myself sodium shots in the belly twice a day (for now) is certainly interesting.

I will try Sterlings MTHFR support with my 23and me results. Livewello didnt work for me. Genentic genie did- as short as it is (not much for explanations.)

I never was dxed with Babasia, but who knows, all these Co's are so stealthy.

Could use the $800 igenixs co infection test I guess. $800 is a lot, but considering I just dodged a bullet, its cheap now.

I'm really burnt out on researching, and then this.
Posted 2/9/2015 6:02 AM (GMT 0)

astroman said...
The meds and diagnosis were from saturday urgency care. So I will see a reg Dr Monday to figure out how this happened. I contacted my LLMD too. Really dont want to be on cumaden for life, hope its a temporary thing, cross your fingers for me.

Giving myself sodium shots in the belly twice a day (for now) is certainly interesting.

I will try Sterlings MTHFR support with my 23and me results. Livewello didnt work for me. Genentic genie did- as short as it is (not much for explanations.)

I never was dxed with Babasia, but who knows, all these Co's are so stealthy.

Could use the $800 igenixs co infection test I guess. $800 is a lot, but considering I just dodged a bullet, its cheap now.

I'm really burnt out on researching, and then this.

babesia infections are on the rise in the US(global warming) Hopefully the clots were the result of infections.
Posted 2/9/2015 7:40 AM (GMT 0)
My LLMD was saying babesia testing is a difficult one to get positive on. What's new? Seem like all the testing is a roll of the dice. He treated me anyways. May have been a BLO or BabLO who knows. All that being said, there are some people here that HAVE tested positive for Babs also so $800 seems like nothing if you got a life treating condition. I agree with that for sure.
Posted 2/9/2015 7:52 AM (GMT 0)
Does the 800$ test check just babesia, or looks at other coinfections?
Posted 2/9/2015 7:57 AM (GMT 0)
IGenex I believe has a co-infection panel for $800 if I recall correctly. I think that is what @astroman is referring too. There are lots of different options honestly.
Posted 2/9/2015 8:02 AM (GMT 0)
FL1953 causes hypercoagulation states as well.

http://protomyxzoa.org/wp-content/uploads/2013/05/Protomyxzoa_rheumatica.pdf

I just got tested for FL1953 aka Protomyxzoa rheumatica. It is through Fry labs. I am waiting to see what results are. LLMD mentioned I test for it cause when I herx it's like an a-bomb is being dropped.

Sorry brother, I know a lot of the symptoms overlap. Hard to tell what is what.

JM
Posted 2/9/2015 8:13 AM (GMT 0)
Red root - herbal that Buhner strongly suggest is a HYPERCOAGULANT!
Be careful if you are on this herb.
I won't take it for this reason.

I got a blood clot with my acute lyme & co's infection.
It was very scary & the hospitals didn't dx my lyme, so I became direly ill, handicapped.
I understand tx for blood clots as I had to treat for lyme, too, along with the clots once I finally go a doctor to test me for it. Elisa & WB +.
That was almost two years ago & I NEVER found anyone else that that happened to on the forums. Very lonely.

Good luck to you.
Posted 2/9/2015 10:39 AM (GMT 0)
So happy you went to the doctors. Blood clots are very scary! Four months ago hubby landed in the hospital because of a clot that damaged 1/3 of his left kidney. LLND took him off all herbals. He only takes the antibiotics now.

Wishing you the very best!! Keep us updated.
Posted 2/9/2015 12:55 PM (GMT 0)
So sorry to hear of this latest (and scary) issue, astroman!

Best wishes to you!!!

Please keep us posted.
Posted 2/9/2015 2:42 PM (GMT 0)

happyjo said...
br />Traveler~I would imagine your hubby tested for LD? How is he now?? Wow, you have been thru so much! ~jo

Actually, no, he has not been tested for LD. The tests are quite unreliable as we all know, and he's shown no signs of the "regular" symptoms. His issues, while life threatening, have been different. Unfortunate in a way, as with Lyme at least there is a good possibility of healing. With what he has, it only gets worse. But thank you for asking!!

Hubby is stable. I'm tired of almost losing him (that was the 3rd time), so he now has to take care of himself!! LOL!! He eats much better, tries to get whatever exercise his combined conditions allow, and goes to the doctor regularly now! Ahhh, the power of being "the wife"!!! LOL!
Posted 2/9/2015 3:40 PM (GMT 0)
Thanks Happyjo!! Mine is stubborn too - that's why he got so bad to begin with!! But, I'm more stubborn since I'm persistent too!! LOL!! We're just among the 'walking injured' here. Still counting our blessings - although it did take some time to get there, it's a nice place to be! Still kickin'!
Posted 2/9/2015 6:22 PM (GMT 0)
Astroman so glad you went to the doctor and didn't ignore it. I often get bad pain in my calf and wonder but then it passes. So it was an actual knot? My dad a few years back had blood clots in his lungs and he was afraid to go to the doctor for 5-7 days, thank God it didn't take his life then but has since passed.

Blood clots are nothing to mess with and somebody posted on here yesterday about hyper coagulation from Lyme and co, and we should all be tested. Again, glad you are still with us.

Trav, sorry to hear about your husband, sounds serious and glad your making him take care of himself. Life is to short to have health issues.

I'm going to get more serious about taking curcumin and fish oil on a regular basis, don't want to have to go the rat poison route ever.
Posted 2/9/2015 8:19 PM (GMT 0)
Revive-

I first though it was a bad muscle knot (which I am use to).

After trying to work it out, it would not "melt away" and also felt different than a knot usually feels like. Thats when I figured it might be vein related, which ultra sound confirmed. The swelling is somewhat better from the blood thinner already. And I can walk without limping.

Of course it will be my job to figure out how this happened since conventional Drs just patch you up without looking for the cause which could be repeated in the future.
Posted 2/9/2015 8:39 PM (GMT 0)
So you could actually feel and see a bulge?

Are you cured of the Lyme, I would think reading that other link that it could be Lyme related. And you are right, conventional doctors don't ever look for the cause. Get that blood work that was posted on that other link.

My dad ended up having to take the blood thinner thru the rest of his life, I would not want to do it and I know you don't want to either.

I will pray you never have another.
Posted 2/9/2015 10:37 PM (GMT 0)
Yes, the calf muscle was obviously filling with blood per visual and to the touch.

Went to the Dr today. As I suspected, they will monitor it and re-ultra sound for a while. The plan is, when it looks good (the vein in my leg), they're done.

Yep, no investigating why it happened. Typical conventional medicine.

"if it happens again we'll look into it"
Posted 2/9/2015 10:39 PM (GMT 0)
Info from the other old post on this subject:

" Hemex Laboratories' ISAC (Immune System Activation of Coagulation) test panel and Hereditary Hypercoagulation test panel. My blood coagulation results were very abnormal.

What exactly is hypercoagulation? It's a condition in which your blood will clot more quickly than normal, and it causes your actual blood flow, especially through the smallest capillaries, to be slower than usual.

Why is this such a bad thing? Well, if your blood is clotting too quickly and easily, and the various clotting factor levels (fibrinogen, fibrin, thrombin/antithrombin complexes, fragment 1+2, and Factor II (prothrombin) activity) are too high, this can even lead to a stroke."

Guess its another special test I will end up paying for, unless there are conventional lab test similar to this?
Posted 2/9/2015 10:41 PM (GMT 0)
My sister was on her death bed before they decided to look to see why things kept happening, they are worthless most of the time unless you break a bone, have something they can see, like in your case, or for surgery.

Very interesting astroman, glad you caught it.
Posted 2/9/2015 10:50 PM (GMT 0)
Thank you for your kind words, Revive! Mu hubby is on coumadin for life due to his issues - so I can confirm that it's something to avoid and prevent whenever possible!!

If you hit your head while on coumadin, please, please, please get yourself to an Emergency room and announce to them that you are on coumadin and have hit your head!!! This can cause a small brain bleed that can paralyze the person, or kill them. I make my hubby go in any time he hits his head - and that's not to mention accidentally cutting yourself and bleeding too much!!

Astroman, I hope that this just goes away and you have no more occurrences!!
Posted 2/10/2015 3:44 AM (GMT 0)
I just wanted to clarify something that Traveler said. You don't "develop" Factor V - you are born with it. It's a defected gene that is inherited and usually a parent has it. So you can't go about life without Factor V and later develop it. Now, it is possible that one have a clotting disorder AND bleeding disorder and no they do not cancel each other out (would be nice if the body worked that way). Question for Traveler, do you mind if I ask why your husband had a bleeding problem? Has he ever been checked for Factor VII? Also, is your husband Factor V leiden heterozygous or homozygous? Hetero having 1 defected gene, homo having 2 - homozygous is much worse. I have heterozygous and never had a clot but always scared...
Posted 2/10/2015 4:41 AM (GMT 0)
Wow Astroman this is really scary stuff. I'm glad you went in when you did. Take care of yourself!
Posted 2/10/2015 5:09 AM (GMT 0)
BTurc -

"Factor V leiden heterozygous or homozygous? Hetero having 1 defected gene, homo having 2 - homozygous is much worse. I have heterozygous and never had a clot but always scared..."

Is this info that can be deciphered from 23andme data? (linking with one of the deciphering websites)?
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