Hypercoagulation

[HopingSince88]

I queried on hypercoagulation (as I saw this term in a recent post) and found about a dozen threads that contain the term, but none were actually devoted to the subject, so I thought I would start this thread.

I have to say that I did not realize that hypercoagulation was a symptom of ME/CFS? Is it? I knew of low blood volume in some PWC, is this related or causative?

I experienced a very dreadful pulmonary embolism in 2000. Nearly lost my life that night. I was on warfarin for 6 months. The doctors were surprised at how long it took for the clots to dissapate and be reabsorbed by my system. They told me it should take 6-8 weeks, but it took 6 months. They found my PE odd as it was not a large clot that had hit my lungs but large numbers of small clots, and they hit both lungs. I had one lung completely blocked and the other was more than half blocked when I got to the ER.

I was told that they checked for DVT and some genetic clotting disorder and found nothing. They blamed the cause on my starting birth control pills (which I had started about 2 months prior). Now I think they must not have run all the right tests. How does one test for hypercoagulation?

TIA for any guidance.

 

[wciarci]

As I understand it the hypercoagulation is caused by fibrin deposits. Keeping hydrated using probiotics every day and digestive enzymes on an empty stomache keeps it in check. There are also supplements, natto kinease (?) for this condition. It is well known with CFS/ME. Hope this helps.

Wendy

 

[HopingSince88]

Thx Wendy,

I just changed PCP's last week and have a follow up visit in about 6 weeks. During our first visit she was interested in knowing more about the testing that had already been done, and I could not give her much as I just relied on my pulmonary doc to do the right thing. I am going to send for those records this week and fill in the blanks with new tests, if necessary.

The more I read these boards, the more I realize what I don't know. I am forever grateful to you all for sharing your knowledge.

 

[wciarci]

Wow, my response didn't post? There is a lot of information on the web. I use supplements rather than heparin or other anti-coagulants. Pro biotics and digestive enzymes on an empty stomach appear to work. I know this yet I stopped. I guess I have a zillion reasons to start again. There are just so many darn supplements.

Wendy

 

[aquariusgirl]

check out these threads. I suspect, but do not know for sure, that some of us might require more powerful anticoagulants than natto, lumbrokinase etc...but would assume you need a knowledgeable doc to manage toxic shock risk..

http://www.springboard4health.com/notebook/health_hypercoagulation_ill.html
http://www.springboard4health.com/notebook/health_hypercoagulation_aps.html
http://www.springboard4health.com/notebook/health_hypercoagulation_aps.html

 

[Michael]

check out these threads. I suspect, but do not know for sure, that some of us might require more powerful anticoagulants than natto, lumbrokinase etc...but would assume you need a knowledgeable doc to manage toxic shock risk..

http://www.springboard4health.com/notebook/health_hypercoagulation_ill.html
http://www.springboard4health.com/notebook/health_hypercoagulation_aps.html
http://www.springboard4health.com/notebook/health_hypercoagulation_aps.html

Thanks for these links. What are you taking and what results are you noting?
thanks, Michael

 

[aquariusgirl]

i did a private consult with david berg. he told me i had a massive fibrin problem.... but not hypercoag ....
by then i had got on heparin.....been on it a while.. seemed to help at first... now.. i think maybe u need to be on some serious pathogen killers at the same time as the heparin...o/wise you are just releasing more bugs into theblood stream.

Problem is i don't respond much to antivirals... replication rate is too low i suspect....

 

[ukxmrv]

I had a few months on heparin but it made no difference to my ME symptoms. Have heart and stroke history in my family so always try to learn about these things.

 

[Sushi]

I had a few months on heparin but it made no difference to my ME symptoms. Have heart and stroke history in my family so always try to learn about these things.

I "flunked" the ISAC panel and did 7 or 8 months on heparin and felt a lot better. After that went onto nattokinase.

Sushi

 

[xks201]

I would think mild diabetes insipidus could induce hypercoagulation as a compensation mechanism for dehydration/low blood volume.

 

[taniaaust1]

I have a MTHFR polymorphism (two copies) which can cause clotting issues (and two of my blood tests both also showed hypercoagulation). Post what they've tested u for once you have your test copies.

The following links may be of interest to you
http://www.anapsid.org/cnd/diffdx/hypercoagulation.html
http://lassesen.com/cfids/familyhistory.htm

 

[overtrain]

Thank you for this topic. This mutation was discovered in the mid-90's, if I recall correctly. The significance of 'bad blood' depends on the stats you believe. "Pulmonary embolism causes more deaths annually in the United States than breast cancer, AIDS and highway fatalities (combined)."

I have Factor V Leiden Mutation (Heterozygous type) via my mother (gut issues her whole life, & a pulmonary embolism in her 20's). My appendix was taken out at age 11. A doctor told me once Factor V can cause joint pain. I went thru menopause without HRT, just in case.

Re inflammation, my CFS came on after an upper resp. bug AND over-training- read over-inflammation- as well as a bad bike accident (again, inflammation).

I think my mother has undiag. POTS, as well as I, & both our ability to withstand heat has deteriorated over the years. She's unable to exercise even in aircond. room. My sibling wasn't born with Factor V, & despite a junkfood diet the last 53 years, remains fine. Grrr.

All I take are herbals (like white willow raw steeped in tea, devil's claw, bromelain, etc.,) & Claritin. I only knew to take Claritin because a doctor told me it would make me feel better due to high eosinophil count. I take handfuls thruout the day, & if I bike, I get in an ice bath after, if I can stand it. I have to ice various part of body EVERY day (fingers, wrists, back, knees, etc), & if I don't, I'm no good the next day.

Would LOVE to get hands on better anti-inflamms. I'll do a site search. Thank you.

--forgot to add: I've been thirsty ALL my life... at nite go thru about 16 ounces while trying to sleep. & I do use "real" himalayan salt, which I crave.

Cheers,
Iowa, USA

 

[Marlène]

http://www.publichealthalert.org/pdf/2013/2013_1.pdf

 

[dannybex]

Thx Wendy,

I just changed PCP's last week and have a follow up visit in about 6 weeks. During our first visit she was interested in knowing more about the testing that had already been done, and I could not give her much as I just relied on my pulmonary doc to do the right thing. I am going to send for those records this week and fill in the blanks with new tests, if necessary.

The more I read these boards, the more I realize what I don't know. I am forever grateful to you all for sharing your knowledge.

The person to 'talk' to re hypercoagulation is Ken Lassesen. I've known him since 2005 or so. He recovered fully in 2001(?) -- had tons of energy for over 10 years -- then just had a relapse this past spring, (due in part to lyme), but is almost recovered again -- says he should be well again in about a month. He's on Facebook, but here's a link to his blog page on hypercoagulation:

http://www.lassesen.com/cfs/index.php/treatment/thick-blood-clots-dimension-of-cfs-etc

 

[Master4thDegree]

I see a great number reporting the use of heparin and pleased to hear of good results from it. Some with poor kidney function though are denied this by their doctor for good reason though. In such a case, talk to your doctor about prescribed phlebotomy (blood removal). Even hemochromatosis can be given the green light to self phlebotomize, but that requires training and many may not have the nerve to do it to yourself, but then some of you may. You can see youtube videos on it to see how not complicated it is. Talk to your doctor though, this simple procedure has saved my life, I pray more can find recovered from it. Here is another article on it.

http://www.anapsid.org/cnd/diffdx/hypercoagulation.html