Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 I have had some ischemic strokes, 2 years after identifying myself as PWC, for which the causes have not been definitively determined.. Needless to say I was intrigued by the Hemex explanation of my experiences, as it seemed to explain it all... I have spent a lot of time with Hematologists since, and none has found any hypercoagulation factors. I did have the Hemex ISAC panel, which was inconclusive - they said the blood sample must have been handled incorrectly.. Having had all of the most advanced coagulation tests on offer by some of the most respected hematologists who totally dismissed the Hemex ideas, I did not submit new sample. But, my questions about the connections between CFS and hypercoagulation remain, as they have combined in my case, although " Medicine " cannot explain it to me. Is there some other possible explanation for a hypercoagulable state which would not show up as an APS marker, or other factor, but might still cause a clot to form in my brain? I tried Heparin, still believing the Hemex theory (which I cannot say conclusively is wrong BTW), and did not notice much of a change except that I could suddenly feel sleepy, which I had not for years. The hematologists who dismissed Heparin could not explain this. Stopping the Heparin ($50/day so it had to end) ended the sleepiness. I have not had a nap since. That's my story as regards heparin. Colin spite.check wrote: > > > Ran across the pubmed abstract on heparin a few days ago, thought the > old post was worth a BUMP. Switched off the heparin and on to Natto > based on berg thinking everybody with cfids has hypercoagulable state > even tho i never got the hemex tests and don't know that has been shown > to be true? Can't bump an old post? maybe it will bump up by itself > tomorrow. > > Searched site for Heparin + elastase. > > Anybody document HLE improved with heparin? > > My fridge just lost 10,000 units. [] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2006 Report Share Posted August 26, 2006 Hi, Colin. Have you tried any of the nonprescription anti-hypercoagulation remedies, such as nattokinase or lumbrokinase? Some PWCs have found them to be helpful, and have noticed that their hands, formerly cold all the time, became warm. Rich > > > > > > Ran across the pubmed abstract on heparin a few days ago, thought the > > old post was worth a BUMP. Switched off the heparin and on to Natto > > based on berg thinking everybody with cfids has hypercoagulable state > > even tho i never got the hemex tests and don't know that has been shown > > to be true? Can't bump an old post? maybe it will bump up by itself > > tomorrow. > > > > Searched site for Heparin + elastase. > > > > Anybody document HLE improved with heparin? > > > > My fridge just lost 10,000 units. [] > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2006 Report Share Posted August 26, 2006 Hi, Colin. One more thing: I don't have CFS, but I did have a TIA a few years ago that resulted in temporary loss of ability to use short-term memory. Really a strange experience. It followed a very stressful time in which I was struggling to meet a deadline. Fortunately, it resolved itself in about 3 hours. Since then, I have taken several things to try to prevent a recurrence, and have not had one, thankfully. These have included bromelain, vitamin E (including the gamma tocopherol), flax oil, and ginkgo biloba. When I accidentally cut myself now, my blood seems to be quite " thin, " but it clots and stops bleeding in a normal amount of time. The ER doctor at the time recommended that I take aspirin daily, but I didn't want to do that, for my stomach's sake. Rich > > > > > > Ran across the pubmed abstract on heparin a few days ago, thought the > > old post was worth a BUMP. Switched off the heparin and on to Natto > > based on berg thinking everybody with cfids has hypercoagulable state > > even tho i never got the hemex tests and don't know that has been shown > > to be true? Can't bump an old post? maybe it will bump up by itself > > tomorrow. > > > > Searched site for Heparin + elastase. > > > > Anybody document HLE improved with heparin? > > > > My fridge just lost 10,000 units. [] > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 Hi Rich - I did not experience any improvementd from bromelain or natto, after trying for some time. I was on warfarin (coumadin) for 2 years, and know what thin blood is like! This did not help me either, except from having more strokes, which I have not had, AFIK. When I had my second stroke I turned up at the ER with and INR of 4.7, which means my blood was 4.7 times a thin as a normal persons, so whatever caused the stroke was likely not a clot.... No one on my medical team has explained it yet.. No surprise. I am taking 1 325 mg aspirin these days. Thanks - Colin rvankonynen wrote: > > Hi, Colin. > > One more thing: I don't have CFS, but I did have a TIA a few years > ago that resulted in temporary loss of ability to use short-term > memory. Really a strange experience. It followed a very stressful > time in which I was struggling to meet a deadline. Fortunately, it > resolved itself in about 3 hours. Since then, I have taken several > things to try to prevent a recurrence, and have not had one, > thankfully. These have included bromelain, vitamin E (including the > gamma tocopherol), flax oil, and ginkgo biloba. When I accidentally > cut myself now, my blood seems to be quite " thin, " but it clots and > stops bleeding in a normal amount of time. The ER doctor at the > time recommended that I take aspirin daily, but I didn't want to do > that, for my stomach's sake. > > Rich > > > > > > > > > > > Ran across the pubmed abstract on heparin a few days ago, > thought the > > > old post was worth a BUMP. Switched off the heparin and on to > Natto > > > based on berg thinking everybody with cfids has hypercoagulable > state > > > even tho i never got the hemex tests and don't know that has > been shown > > > to be true? Can't bump an old post? maybe it will bump up by > itself > > > tomorrow. > > > > > > Searched site for Heparin + elastase. > > > > > > Anybody document HLE improved with heparin? > > > > > > My fridge just lost 10,000 units. [] > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 Hi, Colin. As you probably know, there are two general types of strokes: those caused by clots, and those caused by hemorrhages. It sounds as though your second stroke, at least, may have been of the hemorrhage type. Have your doctors considered the possibility that you might have HYPOcoagulation? What does your sed rate measure out to be? Have you had your von Willebrand factor measured? Rich > > > > > > > > > > > > Ran across the pubmed abstract on heparin a few days ago, > > thought the > > > > old post was worth a BUMP. Switched off the heparin and on to > > Natto > > > > based on berg thinking everybody with cfids has hypercoagulable > > state > > > > even tho i never got the hemex tests and don't know that has > > been shown > > > > to be true? Can't bump an old post? maybe it will bump up by > > itself > > > > tomorrow. > > > > > > > > Searched site for Heparin + elastase. > > > > > > > > Anybody document HLE improved with heparin? > > > > > > > > My fridge just lost 10,000 units. [] > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 Hi Rich - It was not a hemmorage. I am not sure of my sed rate, but I once presented info on the Hemex idea to a hematologist and he said something like " if that were true your sed rate would be abnormal and it isn't " . The other possibility besides clots and bleeding is vascular disease, inflamation of the brains vessels cutting of blood flow. I had a " clean as a whistle' cerebral angiogram, so this is no longer under consideration. I don't know of the top of my head what my von Willebrand factor is. The last round of hematology did not turn up any factors which were worrisome at all. I had slightly above normal lp(A) which is a possible stroke risk increaser. Mine was 38, my dad's is 168, and he had an early heart attack for no good reason too. I thought this was the culprit, but it does not appear to be at this point. Any idea why the heparin made me sleepy? Thanks - Colin rvankonynen wrote: > > Hi, Colin. > > As you probably know, there are two general types of strokes: those > caused by clots, and those caused by hemorrhages. It sounds as > though your second stroke, at least, may have been of the hemorrhage > type. Have your doctors considered the possibility that you might > have HYPOcoagulation? > > What does your sed rate measure out to be? Have you had your von > Willebrand factor measured? > > Rich > > > > > > > > > > > > > > > > > Ran across the pubmed abstract on heparin a few days ago, > > > thought the > > > > > old post was worth a BUMP. Switched off the heparin and on to > > > Natto > > > > > based on berg thinking everybody with cfids has > hypercoagulable > > > state > > > > > even tho i never got the hemex tests and don't know that has > > > been shown > > > > > to be true? Can't bump an old post? maybe it will bump up by > > > itself > > > > > tomorrow. > > > > > > > > > > Searched site for Heparin + elastase. > > > > > > > > > > Anybody document HLE improved with heparin? > > > > > > > > > > My fridge just lost 10,000 units. [] > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 Hi, Colin. Here's another hypothesis for you to shoot at: Maybe you have low total blood volume and your sympathetic nervous system is working overtime to keep your blood pressure up so that you get sufficient blood flow to your brain. When you took heparin, maybe it thinned your blood and lowered your blood pressure, and the lowered blood supply to your brain made you sleepy. Rich > > Hi Rich - > > It was not a hemmorage. I am not sure of my sed rate, but I once > presented info on the Hemex idea to a hematologist and he said something > like " if that were true your sed rate would be abnormal and it isn't " . > > The other possibility besides clots and bleeding is vascular disease, > inflamation of the brains vessels cutting of blood flow. I had a " clean > as a whistle' cerebral angiogram, so this is no longer under consideration. > > I don't know of the top of my head what my von Willebrand factor is. > The last round of hematology did not turn up any factors which were > worrisome at all. I had slightly above normal lp(A) which is a possible > stroke risk increaser. Mine was 38, my dad's is 168, and he had an early > heart attack for no good reason too. I thought this was the culprit, but > it does not appear to be at this point. > > Any idea why the heparin made me sleepy? > > Thanks - > > Colin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 OK. Thanks.. How do I shoot at it? I had been on warfarin for the prior two years, which would also have thinned it, so this does not totally explain it. Maybe warfarin and heparin thin it differently, and the part that warfarin was not thining was sudden thinned by the heparin. Too bad I could not stay on it. At $50/day, I could only afford a month of it. My blood pressure has always been " good " - I was on a monitor for about 8 straight weeks in the hospital, and it was always stable and " good " , although I do not remember the #s. 80 - 90 over 110 / 120 or so is my best memory (??) Thanks - C rvankonynen wrote: > > Hi, Colin. > > Here's another hypothesis for you to shoot at: > > Maybe you have low total blood volume and your sympathetic nervous > system is working overtime to keep your blood pressure up so that > you get sufficient blood flow to your brain. When you took heparin, > maybe it thinned your blood and lowered your blood pressure, and the > lowered blood supply to your brain made you sleepy. > > Rich > > > > > > Hi Rich - > > > > It was not a hemmorage. I am not sure of my sed rate, but I once > > presented info on the Hemex idea to a hematologist and he said > something > > like " if that were true your sed rate would be abnormal and it > isn't " . > > > > The other possibility besides clots and bleeding is vascular > disease, > > inflamation of the brains vessels cutting of blood flow. I had > a " clean > > as a whistle' cerebral angiogram, so this is no longer under > consideration. > > > > I don't know of the top of my head what my von Willebrand factor > is. > > The last round of hematology did not turn up any factors which > were > > worrisome at all. I had slightly above normal lp(A) which is a > possible > > stroke risk increaser. Mine was 38, my dad's is 168, and he had an > early > > heart attack for no good reason too. I thought this was the > culprit, but > > it does not appear to be at this point. > > > > Any idea why the heparin made me sleepy? > > > > Thanks - > > > > Colin > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 Hi, Colin. I'd say that you got in a couple of very good shots! So much for that one! I'll have to do some studying before I can send up another one. I think your idea is a good place to start, though. What does heparin do that warfarin doesn't? Rich > > > > > > Hi Rich - > > > > > > It was not a hemmorage. I am not sure of my sed rate, but I once > > > presented info on the Hemex idea to a hematologist and he said > > something > > > like " if that were true your sed rate would be abnormal and it > > isn't " . > > > > > > The other possibility besides clots and bleeding is vascular > > disease, > > > inflamation of the brains vessels cutting of blood flow. I had > > a " clean > > > as a whistle' cerebral angiogram, so this is no longer under > > consideration. > > > > > > I don't know of the top of my head what my von Willebrand factor > > is. > > > The last round of hematology did not turn up any factors which > > were > > > worrisome at all. I had slightly above normal lp(A) which is a > > possible > > > stroke risk increaser. Mine was 38, my dad's is 168, and he had an > > early > > > heart attack for no good reason too. I thought this was the > > culprit, but > > > it does not appear to be at this point. > > > > > > Any idea why the heparin made me sleepy? > > > > > > Thanks - > > > > > > Colin > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 I've read that heparin has antiviral and immune modulating properties (which warfarin doesn't). Trina rvankonynen <richvank@...> wrote: Hi, Colin. I'd say that you got in a couple of very good shots! So much for that one! I'll have to do some studying before I can send up another one. I think your idea is a good place to start, though. What does heparin do that warfarin doesn't? Rich > > > > > > Hi Rich - > > > > > > It was not a hemmorage. I am not sure of my sed rate, but I once > > > presented info on the Hemex idea to a hematologist and he said > > something > > > like " if that were true your sed rate would be abnormal and it > > isn't " . > > > > > > The other possibility besides clots and bleeding is vascular > > disease, > > > inflamation of the brains vessels cutting of blood flow. I had > > a " clean > > > as a whistle' cerebral angiogram, so this is no longer under > > consideration. > > > > > > I don't know of the top of my head what my von Willebrand factor > > is. > > > The last round of hematology did not turn up any factors which > > were > > > worrisome at all. I had slightly above normal lp(A) which is a > > possible > > > stroke risk increaser. Mine was 38, my dad's is 168, and he had an > > early > > > heart attack for no good reason too. I thought this was the > > culprit, but > > > it does not appear to be at this point. > > > > > > Any idea why the heparin made me sleepy? > > > > > > Thanks - > > > > > > Colin > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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