Guest guest Posted April 6, 1999 Report Share Posted April 6, 1999 In a message dated 4/6/99 1:44:28 AM Eastern Daylight Time, CJCIMAGE@... writes: << My doctor only has certain labs he can use (partly a managed care practice), and cannot do the test from Texas. (I might use another doctor for this) BUT he said I could come in and have the old clotting time test done. Would this be useful at all? Could you be normal on the clotting time test and still have the hypercoagulation? He also cannot do IV stuff like the heparin. Can you just take coumadin if you had this problem? Would that do anythinng? >> Jody, the old clotting test is really done for illnesses such as Von Willabraun's Syndrome. It's one to just test clotting and not test coagulation. The test from Hemex will take all forms of insurance and they are from Arizona. You need a laboratory that is looking at low level DIC (disseminated intra-vascular coagulation) and few do that. The heparin was never given by IV. In fact, the physician is faxed a protocol that tells them how to treat this according to the test results. Heparin shots are taken by the patients who learn how to give shots to themselves and, in many cases, they're only on the shots for weeks. The coumadin did not seem helpful when used in the pilot trials until the patient's DIC state was reversed. At that time, they used coumadin as a low maintainance remedy. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 1999 Report Share Posted April 11, 1999 In a message dated 4/11/99 2:44:16 PM Eastern Daylight Time, GAILRONDA@... writes: > .the extra > protein (fibreegan) builds up on the endothilial cells (the lining of the > skin that transports blood) and, eventually, the liver is affected. It can > be turned around, though. > Gail Hello Gail........ This is going be a weird ? but just underneath the skin, I have the tinyest little nodules, like the jell pack substance they put in packets to keep vits fresh etc in the bottles...? also does the red cells become odd shaped and broken bridges, just curious about the gossip on this.. Thank you...... ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 1999 Report Share Posted April 11, 1999 In a message dated 4/11/99 3:58:49 PM Eastern Daylight Time, SUSYDOG@... writes: << but just underneath the skin, I have the tinyest little nodules, like the jell pack substance they put in packets to keep vits fresh etc in the bottles...? also does the red cells become odd shaped and broken bridges, just curious about the gossip on this.. >> A lot of people have skin problems. The ones I've spoken to that have been on the protocol and are now just on maintainance said their skin cleared up completely. Dr. Les Simpson from New Zealand (now , I think, Australia) found the RBCs were misshapen and that has a lot to do with this. The blood can't circulate correctly when the arteries and veins have narrowed so much from the build-up on the walls. It's like mild arteriosclerosis......with mini clots instead of large ones. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 1999 Report Share Posted April 11, 1999 Hi, I am continually amazed at the crossover symptoms and syndromes of these various diseases. The following skin/clotting problem can be dangerous, however. Suzy, have you spoken to you doctor about the nodulues? I also have had the small blood vessel involvement in back of eye which resulted in blindness, so I react when I hear about these things. Take care & good luck to you, Christie tab@... ICQ# 24506195 At 05:34 PM 4/11/99 EDT, you wrote: >From: GAILRONDA@... > >In a message dated 4/11/99 3:58:49 PM Eastern Daylight Time, SUSYDOG@... >writes: > ><< but just underneath the > skin, I have the tinyest little nodules, like the jell pack substance they > put in packets to keep vits fresh etc in the bottles...? > also does the red cells become odd shaped and broken bridges, just curious > about the gossip on this.. >> >A lot of people have skin problems. The ones I've spoken to that have been >on the protocol and are now just on maintainance said their skin cleared up >completely. Dr. Les Simpson from New Zealand (now , I think, Australia) >found the RBCs were misshapen and that has a lot to do with this. The blood >can't circulate correctly when the arteries and veins have narrowed so much >from the build-up on the walls. It's like mild arteriosclerosis......with >mini clots instead of large ones. > >------------------------------------------------------------------------ >Has ONElist changed your life? >http://www.ONElist.com >Visit our homepage and share with us your experiences at ONElist of the Week! >------------------------------------------------------------------------ >This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 1999 Report Share Posted April 11, 1999 In a message dated 4/11/99 7:44:04 PM Eastern Daylight Time, tab@... writes: > I also have had the small blood vessel involvement in back of eye so far Christie , No problem but i have been lucky with circulation etc. Drs never said anything about the nodules, but as you know it is common to have eye problems, have to keep up noticing anything new..... and question it. Good Luck.....Thank You Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 Wallace Good post. I would think though the slime in the throat may be key to understanding the sticky in the blood. Bacteria produce adhesions that allow them to cling to cells.Free floating adhesions may explain that sticky blood. > Suzy posted this but I thought it might be useful to people here. > Maybe some of us have this? > > Wallace > > http://www.timesonline.co.uk/newspaper/0,,175-1741009,00.html > > August 20, 2005 > > Body & Soul > > Old-fashioned detective work > Simon Crompton > > Dr discovered a disease that affects 150,000 Britons. Now it > bears > his name > > Just across the river from the Houses of Parliament, tucked away in St > ' Hospital, works a man who should be recognised as one of the > heroes > of modern medicine. Yet despite being hailed around the world as > having made > one of the most important medical discoveries of the past 50 years, > no one > beyond a select band in the UK has heard of him or the syndrome he > discovered - even though it has implications for all areas of > medicine and > affects 150,000 people in the UK. > > About 20 years ago, the rheumatologist Dr Graham reported in > the > British Medical Journal that he had identified a syndrome that > resulted in > blood becoming sticky, leading to potentially dangerous blood clots. > Since > then, his discovery has been confirmed as the cause of one in five > recurrent > miscarriages, one in five strokes in younger people, and one in five > DVTs > (deep vein clots). Sticky blood is also strongly linked with migraine, > Alzheimer's disease, and infertility, and the numbers believed to be > affected are larger than those with high-profile conditions such as > Parkinson's disease. > > Internationally, hundreds flock to Dr 's lectures and fellow > scientists have hailed his discovery by naming this strange condition > > syndrome. The dean of medicine at Barcelona University has said that > there > are just two new diseases of the late 20th century - syndrome > and > Aids. > > Yet here? Here we're hardly making the most of a great British > achievement. > Dr reckons that only a handful of GPs are alert to the > condition and > this lack of knowledge causes thousands of people to suffer > needlessly - and > thousands of unnecessary miscarriages. " Bit by bit, obstetricians and > neurologists are picking up on it but GPs aren't, " says Dr , > who runs > the Lupus Research Unit at St 's. " It's not easy to pick up > because > sticky blood can affect every organ in the body. The commonest > problems > people have are migraine, headaches and memory loss. Some cases are > picked > up in infertility clinics and there is now a simple blood test > provided to > some women who have had two or more miscarriages. But it's not > routinely > available. It's inexpensive and should be standard for all pregnant > women. " > > Perhaps one of the reasons why syndrome hasn't hit the > headlines is > that its discovery was the result of good old-fashioned clinical > detective > work - not massive research funding. Dr made his discovery > through > carefully observing and talking to thousands of patients - something, > as he > is only too aware, that most doctors nowadays have precious little > time to > do. He is obviously a master of the art, in conversation he is polite > and > enthusiastic - the kind of doctor you would really want to describe > all your > symptoms to in detail. > It started in the early 1970s, when he set up Europe's first clinic > for > lupus (a type of arthritis) in Hammersmith Hospital. On his ward > rounds, he > was struck by the number of people who seemed to have a collection of > symptoms - memory loss, balance problems, recurrent miscarriage, > fluctuating > blood pressure and recurrent thrombosis - who then went on to have > strokes > and heart attack. Testing their blood, he found that all had high > levels of > a kind of antibody that destroys phospholipid - a fat found in cells. > > It was clear that these were not simply lupus symptoms. " Right from > the > start, we knew we were on to something, " says Dr . So he went > to other > hospital departments and asked if specialists had seen similar > problems. > Sure enough, liver clinics revealed people with liver blood clots who > also > displayed memory loss, fluctuating blood pressure and so on. The same > pattern appeared in epilepsy, multiple sclerosis and pregnancy > clinics. And > all the patients with these groups of symptoms also revealed high > levels of > antiphospholipid antibodies. > Since 1983, a host of research papers has been published, tracing the > antiphospholipid antibody as a key factor in a range of diseases. Dr > > believes he now understands the mechanism behind syndrome, or > antiphospholipid syndrome as it is also known. > > In people with a genetic predisposition to the syndrome, a virus > seems to > trigger the release of antiphospholipid antibodies into the blood. > These > attack the slippery coating of blood cells, so they become sticky, jam > together and cause clots. Since clotting can affect every sphere of > medicine, the syndrome can be at the root of many conditions. In > pregnancy, > clots block the placenta causing it and the foetus to wither and die. > In > neurological conditions, such as memory loss, the clots impair blood > flow to > the brain. > > And now research by Dr and his team at St ' is revealing > that > many people with syndrome are being misdiagnosed as having > multiple > sclerosis. " Thirty per cent of people with syndrome have that > label > hanging over them at some stage, " he says. > > Once syndrome is diagnosed through a blood test, then it is > easily > controlled. Taking aspirin, or anticoagulants such as heparin and > warfarin, > produces a dramatic reduction in symptoms in 80 per cent of > patients. " We had > one lady who had been wrongly told she had 'mad cow' disease, and > she's well > now, " he says. Another was in a wheelchair, paralysed from the waist > down - > luckily, she was seen by a neurologist who referred her to us and she > can > walk now. " > > It must be like being a miracle worker. But you also sense his > realism. > Sadly, until doctors throughout the UK become aware of sticky blood, > the > full implications of his discovery are unlikely to be realised. " I'm > proud > that the community decided to call it syndrome, " he says. " But > I > think they only did so because my name is easier to spell than > antiphospholipid. " > > Have you got it? > > If you have had one or more of the following, you may have the sticky > blood > condition discovered by Dr : > Memory loss; recurring migraine and headaches; a deep vein thrombosis; > recurrent miscarriage; mini-stroke, or stroke in a young person. > > > A testing kit for Syndrome, £28, is available from TDL > Pathology, > stickyblood@, 020-7307 7373 > > Visit www.hughes-syndrome.org or call 020-7188 8217 > > What's in a name? > > There have never been any strict criteria for a syndrome or disease > to be > named after its discoverer - it's usually a matter of medical > colleagues > deciding that they deserve it. There's invariably a more technical > name for > a condition, too. Here are some stories behind the eponyms. > > Down's syndrome: English physician Langdon Down published a > paper in > 1887 describing the condition now known to be caused by a genetic > defect. > The term was not officially adopted by the World Health Organisation > until > 1965 - before then, Down's syndrome was still known as Mongolian > idiocy. > > Alzheimer's disease: The German neurosurgeon Alois Alzheimer first > referred > publicly to what he described as a " peculiar disease of the cerebral > cortex " > in November 1906. By 1910 the condition had become known as > Alzheimer's > disease, despite lobbying by Italians, who favoured the name > Alzheimer-Perusini in honour of another researcher. > > Reiter's syndrome: a combination of genital, eye and joint > inflammation, was > actually documented by Sir Brodie in 1818 - almost > 100 > years before Reiter documented a single case. However, a 1942 article > describing the first known American case of the disease credited Hans > Conrad > Julius Reiter alone as having discovered it, and the eponym stuck. In > recent > years Reiter's record as a Nazi war criminal has prompted efforts by > members > of the American College of Rheumatology to have the disease renamed, > but > there is no clear process for doing so and the title has so far stuck. > > Munchausen's syndrome: the continuous fabrication of symptoms or an > illness > by a patient is named not after its discoverer but after the > fictional Baron > Munchausen, famous for his tall tales - such as sailing to the moon > in a > ship. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2008 Report Share Posted January 26, 2008 Hi friend, didn't get your name. But I had my spleen removed years ago, and my blood platelets got really sticky, and they were watching for a stroke. Then with the ReA getting worse all the time, they were really upset. Then finally this new Dr came into the group and laughed, and said all I need to do is take a baby aspirin everyday. And when they test my blood now, it is fine.Maybe you can try that, and next time you see the Dr tell him/her to test your blood again.Should work for you too. D. In Oregon Quote Link to comment Share on other sites More sharing options...
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