Hypercoagulation, or thrombophilia, may be defined as a greater tendency than normal for blood to coagulate, or clot. Of approximately 500 borreliosis patients that I have tested, 90 percent have hypercoagulation. Comparatively, only five percent of the general healthy population has hypercoagulation.

Two major aspects of hypercoagulation are infections and hereditary or genetic abnormalities. Chronic infections such as borreliosis, Epstein-Barr virus, cytomegalovirus, human herpes virus 6 and mycoplasma have all been associated with hypercoagulation. These infections appear to be the driving force behind the greater tendency to form blood clots. Infections may elevate levels of fibrinogen, fibrin, thrombin/antithrombin complexes, fragment 1+2, and Factor II (prothrombin) activity.

When you get a cut, the fibrinogen in your blood converts into fibrin, which in turn forms a mesh to create a blood clot to help stop the bleeding. Antithrombin binds to thrombin to form a complex to prevent thrombin from causing blood to clot. Antithrombin protects against too much clotting, when it binds thrombin.

When thrombin is forming a clot it produces fragment 1+2. Prothrombin (Factor II) converts into thrombin, which causes blood to clot. When these coagulation components are high, it indicates that the blood has a greater tendency to clot.

Inherited or genetic disorders may also predispose to blood clotting. Some of these hereditary defects include antithrombin activity deficiency, protein C activity deficiency, protein S activity deficiency, Factor II gene mutation, APC resistance (Activated Protein C resistance is also called Factor V Leiden deficiency), elevated lipoprotein(a) or Lp(a), elevated PAI-1 (Plasminogen Activator Inhibiter-1), and elevated homocysteine. Hereditary hypercoagulation test panels are abnormal in 74 percent of borreliosis patients, as opposed to about two to five percent of the general healthy population.

Treatment for hypercoagulation caused by infections is heparin, which is a blood thinner. Typically, heparin is given subcutaneously (under the skin) by injection twice a day in low doses for not more than nine months. It can also be compounded into a troche that dissolves in the mouth, but that is usually more expensive and is often less effective than injections.

Symptoms that improve with heparin are pain, fatigue, cognitive problems and neurological problems. About 80 percent of borreliosis patients feel better with heparin, and it has been a safe treatment so far. (One patient did develop bleeding from the rectum, but then a colonoscopy revealed a colon cancer that had not yet spread to the local lymph nodes. In other words, the heparin unmasked a hidden malignancy, so in this case the side effect was a blessing.)

Heparin is not only a blood thinner, it is also anti-inflammatory, antiviral, antibacterial, and may even be anti-cancer (unproven). Therapy with heparin usually lowers the level of the coagulation components fibrinogen, fibrin, thrombin/antithrombin complexes, fragment 1+2 and Factor II activity. This is desirable, because elevated levels of these coagulation components can cause decreased capillary blood flow, if they are high enough. Capillaries are microscopic blood vessels that are about eight microns wide. A normal red blood cell, which travels through the capillaries, is about seven microns wide. When elevation of coagulation components occur, they could conceivably attach to the inside surface (endothelial surface) of capillaries, thereby narrowing them. For example, fibrinogen attached to the inside surface could make it harder for a seven-micron-wide red blood cell to squeeze through the narrowed capillary. Reduced blood flow in capillaries would in turn reduce oxygen and nutrients, and reduce removal of toxins from tissues. It stands to reason that if heparin could improve blood flow, antibiotics and hormones would be more effective because they could pass through capillaries easier.

Life is in the blood. Less blood flow means less ``life,'' and possibly more symptoms and diseases -- perhaps even death.

Hypercoagulation is associated with other chronic diseases, not just borreliosis. It is my opinion that how hypercoagulation is treated will become a paradigm shift in medicine, once further research has been accomplished.

i have hypercoagulation and have just learned that a normal person can get oxygen to the tissues in 2 seconds but it takes me 6-7 minutes due to fibrin build up.

I also have factor V leiden and lyme. I am going to be taking heparin very slowly...it makes me very ill because it is releasing lyme as it disovlves the fibrin. I am also going to try hyperbaric oxygen to try to get some pain relief from my muscles.

it is great for me to read the info you provided because i feel like I am finally on the right track.

Joop: I too, have Factor V Leiden, hetero--one copy of the gene--it has been stated that it is much harder to get the infections under control with the increased blood viscousity, lucky us, huh?

I don't know if you saw the other posting with regards to this topic matter, but I told my story with FVL on that thread--too lazy to retype it here( hands hurt with arthitic pains tonight)

Great site about FVL
www.factorvleiden.org

Thre is a patient chat forum---after following that for over a yr, I must admit this: If you think Lyme is bad---you should see what some of those poor clotters have been though---some have lost limbs to DVT's

I have taken attention to those in the know who reccommend dietary measures and lifestyle adjustments to prevent clotting!!

There are several commercial pilots who post there---as aviation( flying) can trigger clotting(DVT'S)

These flyboys know every trick in the book to prevent a clot. Since it could effect their ability to ply their trade( fly)

One clotting incident, and you are off work for 8-9 months' on Heparin

Two clotting incidents and you are a heparin lifer.....and I believe that is contradicted with flying a jumbo airliner!! Which could mean an early retirement for those guys and gals.

Iamanurse:
Tough business you are in, if you are plying your trade and dealing with lyme at the same time!!

The factor II, and factor VIII seem to also crop up amoungst lyme patients--or so I have seen from others on the web who have clotting diorders and lyme even though factor V Leiden is supposably the most common clotting disorder

JellyBelly:
Just wanted to add this fact,

I also have that hand-out from Dr. Crist---which was wonderful work on the part of the staff who placed this information together for the patients

One thing I want to correct:

Factor V Leiden and Activated Protein C resistance **Present** as the same thing

BUT,

Factor V Leiden is a genetic mutation--you either are missing one or two copies of this gene---and there is nothing that you can do to change this--nothing

It is a germ-line mutation( meaning at birth) if you have this, so does one or both of your parents---cut and dry.

Activated Protein C Resistance is not a genetic mutation--henceforth the term **activated** in the name

Something has triggered this clotting cascade, like chronic infection, chemotherapy, cancer, ect.

Hopefully---for most, it is not permanent condition

Yes, I am considering babesiosis seriously, that is why I have come here. I am doing really good, but I have 2 sick kids that I've no doubt passed this on too. My daughter is planning to begin treatment in the next couple of months. Both of my parents are/were sick. My mom had FM and has since been told she has MS, is this really Lyme and did she pass it on to me or was it the tick bite I got at 12. My dad had Lupus, so they thought, not 100% sure, but he was VERY sick and passed away a little over a year ago.

quote:

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Originally posted by Jellybelly:
My mom had FM and has since been told she has MS, is this really Lyme and did she pass it on to me or was it the tick bite I got at 12. My dad had Lupus, so they thought, not 100% sure, but he was VERY sick and passed away a little over a year ago.

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Or did all of you contract Lyme when you were 12? I believe my parents and I got Lyme at the same time....or close to the same time.

My father died of "Parkinson's"....long before I was dxd with Lyme. So we didn't get the connection.

I hope you get treatment soon!

quote:

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Originally posted by Jellybelly:
My mom had FM and has since been told she has MS, is this really Lyme and did she pass it on to me or was it the tick bite I got at 12. My dad had Lupus, so they thought, not 100% sure, but he was VERY sick and passed away a little over a year ago.

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Or did all of you contract Lyme when you were 12? I believe my parents and I got Lyme at the same time....or close to the same time.

My father died of "Parkinson's"....long before I was dxd with Lyme. So we didn't get the connection.

I hope you get treatment soon!

I have bad CNS lyme disease.
In the past I had a blood clot which required hospitalization. I have a family history of protein C genetic deficiency, but I was negative for that.

My thought would be to have the ISAC panel through HEMEX first. See where you stand with hypercoagualtion and then treatment can be started ASAP if needed. I then got my genetic coagulation tests next/later. These tests aren't cheap so unless you have awesome insurance then I would chip away at them slowly. At least if you start treatment for hypercoagulation (if you have it) then a blood clot wouldn't likely be a problem while on heparin.

Treatment ??? Does anyone have any comments or thought about using Bromelain, on an empty stomach, instead of Heparin.

Ive read its suppose to help hypercoagulation and might be a little easier on the body than heparin.

You seem to be very up on this issue. So thought I would ask. I have Von Willibrands' Factor, which I believe is a reduction in my clotting factor VIII. This is a family trait I inherited from my mother.

I have never had any real problem with it at all, aside from a little extra bleeding after childbirth and a wisdom tooth extraction that had to be restitched twice. Maybe a little extra bruising here and there.

What impact might this have on this hypercoagulation issue? Technically, I do not have enough clotting factor, so if I was to have hypercoagulation from Lyme, is it likely to have the potential to cause fewer problems for me? Am I at any advantage at all?

I have never researched this issue at all, but do read posts like this as I do find it interesting.

Any clue what all this may mean to me?

Interestingly enough, I have 2 children, one has it, one doesn't. I was told going into having children that I would have a 50 - 50 chance of having a child with it. Genetics do work. And it played out just like they said it would.

Thank you for your help.

Connie

quote:

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Originally posted by sofy:
I have never been able to get any doc to test me for this but Im still pushing.

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I have seen three LLMDs. All three are like, "What are you talking about? Why you wanna get tested for hypercoagulation?" and then "I don't know that test, or I don't like that test, or I don't know what to do with the results."

I'm having trouble separating facts from fiction.

I've also heard that people with hypercoagulation do not always improve on heparin.

michael.......Do you mean that you've heard that some people on heparin do not get improvement for their hypercoagulation, or do not get improvement for their Lyme disease?

I don't see how it couldn't help the hypercoagulation, because if the proper blood thinning is not achieved, the dosage is upped.

I would think those with muscle/joint pain, brain fog, and fatigue would benefit the most from the heparin. Also remember that the abx will be able to go deeper into the cells/tissues with the heparin.

The better the penetration, the more keets that will be reached.

Sofy....There are better natural alternatives to the heparin than bromelain, though some good results can be achieved with the bromelain.

I'm planning a switch to either lumbrokinase or nattokinase when I run out of the heparin. You can read more about these in a link within the link below.
http://flash.lymenet.org/ubb/Forum1/HTML/033070.html

I can say without hesitation that there is absolutely NO way I will skip taking my Omega 3 supplements daily. I pay in pain if I miss my dosages. Currently, I am taking Natrol Omega-3 1,000mg capsules. In the morning I take 3,000mgs (3 capsules) and then I take 4,000mgs (4 capsules) at night. So, currently I'm at 7 capsules a day. If I experience an increase in nightly numbness I will increase my dosage by a 1,000 mg Omega-3 capsule. I had dropped back to 6 capsules a day but I had an increase in numbness but I seem to be doing better on 7 capsules. Every so often I like to do a test period for a few days to a week and see what happens if I increase or decrease my dosage by a capsule at a time. I didn't think it would make much difference but it does.

As for the CoQ10...I am currently only taking 150mgs per day. I prefer to that that amount twice a day but I have other supplements I have to have as well so I have to try to keep costs down as much as I can. Even this dosage definitely does help. I ran out a while back and had to take a few weeks off. When that happens the pain in my left leg is nasty and I can not even sleep or rest on my left side because I can't stand the pain in my left leg. The CoQ10 seems to help reduce this problem and without realizing it, I will find myself reclining on my left side. The CoQ10 does not "cure" the problem because there is still discomfort there, it's just not as severe as it is without the supplement.

Hope this helps anyone seeking help with these problems who would prefer to avoid heparin, etc.

Take care,

Angie

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Posted Jan 7, 2005

I'm going to offer my theory for anyone who is interested, for anyone who is waking in the night with parts of their body feeling numb, like the circulation has been cut off. I don't know if it will help anyone whose hands or feet go numb during the day as that problem may be due to other causes, but I would think it is worth trying for a few weeks to a month or so to see if any benefits may be experienced. However, it can take a bit to kick in.
An added bonus of trying the supplements that help with this problem is that they may help some of you with your joint pain and arthritis as well. It may have the fortunate side effect of allowing you to cut back on pain killers.

The spirochetes activate inflammation of the platelets in your blood. Their presence also causes an increase in fibrin in the blood. Now, you have blood which is not only inflamed but, in a sense, thicker. As long as you are up and moving you are keeping the blood flowing because your movements, no matter how small, are helping to push the blood along. Once you lay down to go to sleep, you stop moving and you experience more obvious problems caused by the sluggish circulation.

I'm not certain if blood thinners help this problem or not, I have not researched their individual actions on this problem but I do know that the advice I am planning to give can cause the blood to thin and those on blood thinners, if they are interested in trying this, will have to work with their doctors to insure that they have their dosages correct because it is very likely that it will need to be reduced and pretty quickly at that. I would only advise a very gradual implementation of the supplements I advocate. However, these supplements could potentially take the place of the blood thinning drugs so that could be a nice bonus.

My recommendation is the use of fish oils with CoQ10. The fish oils not only reduce the inflammation in the blood, they also help to reduce the fibrin in the blood. If you have had clots in the blood or are presently experiencing these problems then you need to purchase fish oil that has a higher ratio of DHA than EPA. Remember that, higher levels of DHA because the actions of these two components of fish oil can be very different.

The CoQ10 is important because it works to reduce the ability of the platelets to aggregate and adhere to each other.

In combination, these supplements will reduce fibrin, inflammation, clotting and clumping. Your sleep may not be completely free of these episodes because this activity is always going on because the infection is always there. I think it is further evidence of the continued presence of the infection. I did not have this problem prior to Lyme and now, it returns very quickly if I take a break from the fish oils. I haven't been using CoQ10 very much in the past but I have realized that I felt a little better while on it and now, I think I have a partial explanation.

I am certain that there are other drugs out there that may be reducing this problem in individuals as well but, again, I have not researched enough to know which ones may be effective. I know plaquenil greatly reduced my joint pain when I was on it but I can't really remember if it had much effect on this problem but it does seem it wasn't as bad when I used it. However, I do know that since I started on the fish oils they have, hands down, worked better for me than any medication I've tried (for the nightly numbness/lack of circulation and joint pain).

I would recommend an Omega 3 fish oil dosage of about 4-8 of the 1,000mg capsules. It takes about 6 capsules daily for me to experience benefits and I tend to favor Salmon Oil because it seems to be a little less expensive.

As for the CoQ10, I've used 50mg, 100mg and currently, 300mg. I didn't notice any change on 50mg. On 100mg I did feel a bit better but didn't really attribute it to the CoQ10 at that time. Now, I've started back on the stuff and am taking 300mg (purchase it at Sams or Costco for the best price) and already am feeling better than I was earlier in the week, before I had started back on the stuff. I have an orthostatic intolerance so these changes while not huge, can make a difference in my ability to care for myself and function on a day to day basis.

Anyway, I thought I'd throw this out here for anyone struggling with trying to understand what may really be happening as well as what to do about it. Hope this helps.

Take care,

Angie

Sorry I got back to this so late---but I do not have the knowledge of Factor VIII that I do of the other clotting factors

There is information available on the net, and at this site www.factorvleiden.org

As someone esle stated: You can have part of the coagulation cascade causing hypercoagulation, and other sections---such as your Factor VIII--being deficient

You can also have hypercoagulation due to chronic infection---maybe that would be easier for someone in your position to deal with----but I am not 100% sure, or even 70% sure for that matter!!

Only a hemotologist would be able to answer that one

It's one of the most complex metabolic systems within the human body

Yes, Genetics do have a strange way of working, don't they??

Hello everyone esle who posted on this thread!!!

I was on heparin( lovenox) for 8 months'--due to PE, because of Factor V Leiden( I tend to believe that the infectious hypercoagulation triggered the genetic FVL into activity)

I have used Natto, and other natural sources with good results

Problem that can happen here: You really need to know just were the coagulation is stemming from:

I.E, is it excessive fibrin, elavated homocysteine levels, elavated lipoprotein A levels, ect., ect.--this can reflect which supplementation route would be most efficent for you, personally

quote:

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Originally posted by Lymetoo:
michael.......Do you mean that you've heard that some people on heparin do not get improvement for their hypercoagulation, or do not get improvement for their Lyme disease?

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What I meant to say was that some people on heparin see no improvements in their symptoms. I don't know it helped their hypercoagulation. Probably did?

I've taken Nattokinase for 1 month. Made no difference in my symptoms. But I also don't know if I have hypercoagulation. Never had a test done.

I don't know if the speed at which blood stops bleeding through a cut is any indication of hypercoagulation. But if it is, I don't think my blood coagulates any faster than anyone else in my family.

I know this is not an accurate assessment of hypercoagulation. But just FYI.