posted
How much did you take and what effects did it have? How often did you have your PT and PTT checked (blood clotting) checked? My LLMD is recommending it for me and I'm a little nervous about starting on it. Liz
Posts: 383 | From Ar | Registered: May 2007
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CaliforniaLyme
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Member # 7136
posted
We had one patient from our local group who was put on it and who not recovered now the last few months. He was told it would help him but it has set him back considerably. He had been doing very well. So be careful. He is the only person I know treated with it. I was on IV Rocepihn and did lots of heparin flushes with no problem... but it was not the main treatment.
Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
I've tried it briefly three times, and each time it resulted in heartburn that began within a couple days. Very odd.
Posts: 727 | From USA | Registered: Mar 2006
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lpkayak
Honored Contributor (10K+ posts)
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posted
dguy-has it helped? did you stop cuz of heartburn? anyone else? thanks
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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quote:Originally posted by lpkayak: dguy-has it helped? did you stop cuz of heartburn? anyone else? thanks
Didn't notice any improvement from heparin, but the trials were very short due to the heartburn. I think someone else on the board had once mentioned heartburn from heparin too.
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter herxed on it because the abx were finally getting to places it couldn't when the blood was like fudge.
However, after a month, her stomach lining was stripped and she had to stop.
We have lozenges, so she and I both take one a couple of times a week.
It really helped with the blood issue.
Posts: 2903 | From AZ | Registered: Feb 2006
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
z gil-
be careful to base your opnion of a certain treatment protocol off of one person's experience.
but, that said, i used heparin therapy with great success.
its a good tool for those who have upper body disfunction, such as increased head pressure and visual brain fog.
heparin increases blood flow as you know which will alleviate your lyme sx (eventually. you may have a worsening in your sx initially)
also, you might want to look into a natural supp that does the same thing heparin does, but not as harmful.
nattokinase. its an anti coagulant, and allows blood to flow and reach places it otherwise would not be able to (if you are dealing with inflamation)
i was on heparin, now nattokinase, and to be honest, nattokinase seems to be working better.
the dose is 36 mg, and it can be found on pretty much any internet supplement store.
good luck
humbly
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Thanks for all the replies. Don't those of you who take supplements ie: nattokinase have labs routinely checked for clotting effect? Liz
Posts: 383 | From Ar | Registered: May 2007
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posted
I've been on Heparin for almost two years now. I am at 3000 units twice a day. I get a PTT once every month. My PTT since being on Heparin has been between 30 and 32.
I haven't noticed much difference since being on it.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
Kathy....I think the numbers should be around 28 to be effective. I just remember mine was always around that figure.
I took 11,000 units twice a day.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
I have been on Heparin for 1 year-it can make you herx very hard and I have found that I need much lower dosages of AB's. Perhaps this article will help you understand the necessity of Heparin, I beleive it is necessary as a part of recovery:-
Borrelia Burgdorferi (Lyme Disease) and Hypercoagulation
Written by 3 separate doctors
Dr C: Hypercoagulation, or thrombophilia, may be defined as reduced capillary blood flow or a greater tendency than normal for blood to coagulate, or clot. Of approximately 900 borreliosis patients that I have tested, 90 percent have hypercoagulation. Comparatively, only five percent of the general healthy population has hypercoagulation.
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.
Hemex Laboratories in Phoenix, AZ has discovered that a number of infections, including mycoplasmas, and Borrelia Burgdorferi can trigger the blood clotting system to become active, preventing oxygen and antibiotics from reaching and destroying the pathogen. This is called hypercoagulation. The Hemex Lab ISAC panel can be run to determine if this is a problem. If this test is positive, appropriate blood thinning agents may be prescribed (Heparin is the preferred choice).
There are a number of problems that must be addressed in patients. For instance, some individuals have a coagulation defect that is set off by the chronic infection Borrelia Burgdorferi (Lyme Disease). This results in the laying down of a fibrin coating on the lumen of the vessel causing impaired oxygen and nutrient transfer. This can result in fatigue, muscle aches and "brain fog". If suspected, diagnosis requires specialized testing (presently only available at Hemex Laboratories in Phoenix) . If not treated, not only are the cells starved for oxygen and nutrients, but it is very difficult to eradicate any infection because they will "hide" in the fibrin coating. If the Coagulation defect is not addressed the defect will limit the antibiotics from reaching and destroying the pathogen
Hypercoagulation leads to "clogging" of our mucous membranes with extra Fibrin and doesn't allow for proper entry into cells of nutrients or egress from cells of waste products. Eventually this causes our interstitial fluids (Terrain) to be filled with toxic waste (Dr. Reckeweg's Homotoxins) and our cells to be deprived of proper nutrients. This leads to all forms of chronic degenerative diseases such as atherosclerosis, Fibromyalgia, arthritis, cirrhosis, emphysema, chronic fatigue and the 100 or so other chronic degenerative diseases.
Dr K: Studies have found that approximately 80% of patients have this low level activation of the clotting system. This low level activation does not produce a blood clot, but rather an intermediate substance called a soluble fibrin monomer (SFM). This coats the inside of the blood vessel and limits oxygen and nutrient flow into the cells. The SFM coating not only limits the oxygen and nutrient flow, but it also provides a place for the spirochete to "hide" and escape destruction by the immune system/antibiotic. Thus, it can be very difficult for patients to rid the body of these infection without treating the Fibrogen Defect. Diagnosis is made by the use of a specialized test called an ISAC (Immune System Activation of Clotting) panel, which measures platelet activation, soluble fibrin monomer, fibrinogen, prothrombin fragment 1 +2 and thrombin/antithrombin complexes. Treatment is low dose heparin and substances to break up the fibrin as well as elimination of the initiating agent, whether it is a virus, bacteria, yeast or toxin. Intervention can be from several weeks to a number of months, if treating with antibiotics Heparin should be continued for the duration of antibiotic treatment.
Growth-Inhibitory Effect of Heparin on Babesia Parasites There is some very current information and an actual study showing that heparin may erradicate Babesia all on it's own and the same may hold true for Lyme- Sabine Bork,1 Naoaki Yokoyama,1 Yuzuru Ikehara,2 Sanjay Kumar,1 Chihiro Sugimoto,1 and Ikuo Igarashi: We examined the inhibitory effects of three heparins on the growth of Babesia parasites. The multiplication of Babesia bovis, B. bigemina, B. equi, and B. caballi in in vitro cultures and that of B. microti in vivo were significantly inhibited in the presence of heparins, as determined by light microscopy. Treatment with various concentrations of heparin showed complete clearance of the intracellular parasites. Interestingly, a higher percentage of abnormally multidividing B. bovis parasites was observed in the presence of low concentrations of heparin. Furthermore, fluorescein isothiocyanate-labeled heparin was preferably found on the surfaces of extracellular merozoites, as detected by confocal laser scanning microscopy. These findings indicate that the heparin covers the surfaces of babesial merozoites and inhibits their subsequent invasion of erythrocytes.
Posts: 1172 | From UK | Registered: Jan 2007
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pamoisondelune
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posted
I take Nattokinase, 500,600,or 700 mg doses, 4 or 5 or 6 times a day; a dose much higher than anyone else takes. I take this much because my body tells me it needs that much to feel right.
I have a couple of genes for blood clots, incl. the Leiden V gene, which causes 50% of hospital blood clots (?) or admisssions for blood clots(?), i read.
I take enough Nattokinase to remove symptoms i used to have: little random spot pains in the lower legs, and the bottom third of lungs not too available for breathing. Since i've been taking nattokinase for a couple of years, i don't get those symptoms, unless i lower the dose. On a blood clot forum i used to read, people who have clotted mentioned the little pains in the lower legs.
The brand i take, Now brand, isn't labelled "NSK-SD", which is the standard to assure genuine Nattokinase; so that may explain some of the high dosage. A fellow on the blood clot forum said this brand works well for him.
I never have symptoms like bruises. I haven't been tested, but recently on a blood draw, the nurse could hardly get any blood out of me. I don't think my blood is too thin.
Posts: 1226 | From USA | Registered: May 2007
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Jellybelly
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posted
I have been on heparin for many years, stopped, used natto and now back on heparin BECAUSE it may inhibit Babesia.
I have never heard of it causing heartburn or of setting anyone back. Sarah, what I suspect in your friend that appears to be set back from heparin is that they are actually herxing. heparin uncovers alot of stuff just by removing firbrin. Not only does it expose pathogens, but it makes for better absorption of abx. All of that leads to increased herxing. Right?
Did you know that cloaking themselves with fibrin is one way that pathogens evade the immune system? Quite routine. Heparin just rips that cloak right off!
The only way I can even begin to imagine that heparin would cause heartburn is if your were taking those troches. Usually shots are given and I have always used a nasal spray, if you would like more info PM me.
I was tested for the hypercoagulation through ISAC, then once started on heparin I got my PTT tested once and never again after that. Even after taking the long break, my doc still didn't check. A dose of 11,000 units or less is extremely small when considering when given for DVT in IV, there is usaally a loading dose of 5,000 units given and then 20,000-40,000 units given in a 24 hour period broken into 1 hour increments.
Right now I am taking 8,000 units a day, twice a day. Heparin has an extremely short half life, that is why it is given every hour by IV. That makes heparin very managable, much more controlable then Coumadin/Warfarin which stay with you for days.
Did you know that heparin is routinely given to pregnant women with a certain condidtion? It helps to prevent miscarriages. My daughter was on heparin for her 1st and 2nd. Merely quit once contractions began, excessive bleeding was no problem.
Like I said, I have used natto and do like it very much, so does my doc and it was working. The reason I am back on the heparin is purely because, I have not read anywhere yet, that any of the enzymes kill babesia like heparin seems to.
Posts: 1251 | From california | Registered: Apr 2005
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
pamisondelune-
you take 1000's of mg of natto?
wow! thats good to know.
my baby dose of 36 mg is nothing
mr dr did say i could increase it, so no worries.
thanks
humbly
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I think the higher the number on the PTT the thinner the blood is. My PTT is around 32 on only 3000 units twice a day. If I took anymore my blood would be to thin.
I first started Heparin at 6000 units twice a day but my PTT came back high. So they backed me down to 3000 units twice a day a day. PTT has been good since.
It just goes to show how we are all so different. I also have no functioning thyroid, but I only have to take a childrens dose of synthroid to get to a normal TSH.
I am extremely drug sensitive to almost everything.
Kathy
quote:Originally posted by Lymetoo: Kathy....I think the numbers should be around 28 to be effective. I just remember mine was always around that figure.
I took 11,000 units twice a day.
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
I've started a Heparin therapy and don't fully understand how it's supposed to be making me feel better. I'm in great pain and hoping that it will help with bone and cartilage pain. My LLMD says that 90% of his patients are on this therapy.
AND... for those of you that used it, did you give yourself the shot twice daily, like every 12 hours.. ?? I just re-read the prescription and saw where it said every 12 hours rotating between thigh and hips.. please tell me.. help!!
Also, do any of you Rife while doing the Heparin therapy?? Will someone please write back to me so i can fully understand this.. and how soon should i see results.. ?
Help please... thanks...
Posts: 120 | From nashville, TN | Registered: Nov 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Smiley... It can make you HERX big time! It helps get the abx into your cells.. So it will make the abx more effective. It may even make Rifing more effective. Not sure.
I gave the shots into my stomach fat. Later, I ended up doing the oral troches.
Give it at least a month before you will see if it is helping.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I'm so glad that I checked back in to see what you all have said. I have only been doing Heparin along with my Rife Machine and then one night also used someone's EMEM 5D unit, and boy, the herxing is some kind of pain that I've NEVER experienced before. The chest pain was so horrific, I was sure that I was dying, passing a blood clot, as I have had them lodge in my lungs before. I can't believe some of you have done this for a year or so.. that's unreal. I was wondering what is the length of time that this is done, and how do you know when you are done, I just don't understand the perimeters with this therapy. Like what does the Dr. look for as being your perfect level?.. I've used the heparin injections since January.
Also, how are you supposed to come off of Heparin if you are herxing too hard and just can't take it?? I was taking .10 thru insulin needle twice a day, then once a day and then just stopped, but I also take baby aspirin as a daily therapy anyway.
I've just had the worst symptoms, jaw pain, chest, back pain, vice-squeezing headaches, feeling like i'm going to die type pain.. I wanted to call and talk to someone, but I realize there is NO ONE to call or talk to.. ha.. but you guys..
Anyway.. looking at these comments have been great to check out. I feel like i'm doing the right thing..
JellyBelly.. when you did Heparin for a year, did you go off and on and if so, how long in between? and were you doing ABX or doing Rife machine along with it??
And Can someone tell me what does Nattokinase do that is similar to what Heparin does?
Thanks for all the help everyone.. on with the fight!!
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