posted
I don't know if this is Lyme related or if anyone knows about these issues... the doctor scared the poo out of me with it though. My doc ran some blood tests that showed a few things of concern.
1) Prothrombin Antibodies, IgM were high at 34 (range 0-20)
2) Anticardiolipin Ab, IgM, Qn was high at >150 (range 0-12)
3) Two genetic mutations C677T and A1298C identified- the MTHFR enzymes- leading to higher chance of heart disease, miscarriages, strokes, etc.
4) I had a PICC line in for IV infusions and they pulled it out today and it had several clots on it.
The doctor advised I go off birth control and notify my GYN and get a hematologist. I am not sure what to do.
If anyone out there is knowledgeable on these topics... any thoughts ideas or calming words would be helpful Renny
Posts: 341 | From NY/FL | Registered: Apr 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
i have the Factor V (5) Liedum... a genetic clotting disorder. I just take precautions such as enzymes to help prevent fibrin buildup and a baby asprin a day.
While on I.V. I had to do Lovenox shots.
Yes, you have to stop BC pills.
Now that you know, you'll be aware and take necessary action.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
My doc has run some clotting tests on me. Mine were also abnormal. Although I don't remember now how out of range mine were. I didn't have any gene testing though. I don't think.
Anyhow...my doc put me on Nattokinase (an enzyme) and my tests have so far been fine since.
So I agree with DMC about the enzymes. They really can work to thin out the blood.
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Look up Amy Yasko's website for info on the MRTHFR mutations. Also Terry K (and a little from me as well) has posted some excellent stuff on here about it.
My mom had 2 miscarriages and when I got clots w/ my PICC, my awesome LLMD immediately tested me for it. There are specific supplements you can take to help override that particular mutation. Sorry, I can't comment on the others- don't know much about them.
If your doc and you ever want to try IV ABX again, you may want to consider coumadin prophylaxis (that's what I'll have to do if I ever go back on IVs).
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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posted
Just wanted you to know that you can have successful pregnancies, even with the clotting problems. so just wanted you to relax about that!
I have the two MTHFR genetic mutations and also antiphospholipid antibodies and am on heparin and baby aspirin when pregnant to prevent blood clotting. Many are successful with this therapy during a pregnancy. It is good that you know ahead of time, most women have to find out the hard way, after many miscarriages.
Posts: 871 | From NJ | Registered: Mar 2007
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posted
Wow, thanks everyone I feel a lot better. I am 25 and planning on having children in the next ten years. Knowing that I can be okay with this gene mutation is very helpful. The doc really scared me and didn't tell me I would be OK.
So thank you.
Also, spoke to GYN today and she said to go off NuvaRing and to take aspirin daily. Do you think baby aspirin is enough? I dont want to cause an ulcer.
I still need to get treated for lyme. Thank gosh the meds made me so sick and I decided to quit and get my line pulled. Phew! But I still need treatment... my stomach sucks so orals are hard, now I have clotting issue so IV is hard! OY!
Thank goodness for this board. RENNY
Posts: 341 | From NY/FL | Registered: Apr 2010
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I have a serious genetic blood clotting disorder, Protein S. I had two healthy boys before I started miscarrying. All this was before I even knew.
I did lose two PICC lines to clots, and also got three more clots from hep locks. I am about to get a port, but am now on Coumadin.
I'm not worried about it. I hate the Coumadin because it's impossible to stay therapeutic with all my meds. In this past week, my levels have gone from 13.1 to 1.6. But otherwise, it's not that big of a deal. All the clots occurred when I was not on any blood thinners.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I should rephrase that: they weren't healthy, they had congenital lyme. But there were no issues due to blood clots!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I had hypercoagulation and used heparin therapy for a few years. I should be taking enzymes but am not doing so right now.
Many who are trying to conceive and have clotting issues do use heparin to help them.
Also look into Boluoke, the best brand of lumbrokinase.
It is possible that once you are treated, the clotting problems will improve. The anticardiolipin antibodies can also improve... mine went back to normal after treatment for Lyme & Co.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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