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Everything posted by Zarin

  1. There is a website for FVL and you can join the forum there. http://www.fvleiden.org
  2. "Personaly I am unaware of any sideeffect that Clexane can cause to the baby. Being a bloodthinner, it poses risks of bleeding if in an accident or need to undergo emergency surgery, but other that that I am really unaware of any teratogen properties to the child. " LMWHeparin anti-coagulates the blood, there is no risk of bleeding. Wafarin sodium( Coumadin) acts as a so called blood thinner. It basically blocks the Vitamin K function(blood clotter).
  3. My dear, I am so sorry to hear about your troubles. You are in luck as you obviously live in Western Australia. Please contact Professor Ross Baker at the Royal Perth Hospital. He is a leading specialist in DVTs and blood protein disorders. He also has a government funded, and on going study, on the subject; and as you are so young, you may well qualify to be part of this.
  4. You do need to be on some form of LMWHeparin injections if you are planning a pregnancy. The dosage is calculated according to your body weight.
  5. I have always been prone to allergies, so have never been able to pin point what causes them. For many years I needed to take immunoglobin shots as any common cold I contacted turned into pneumonia. Now I take a broard spectrum anti-flu shot and this seems to be working for me. The name of the innoculation is "Vaxigrip" for anyone who is in a similar predicament.
  6. Hi Sandy, Be persistant. How much blood was taken? To get a comprehensive clotting profile done, you actually need to have about 1/2 a pint taken. Be sure to carry a fruit with you as you will feel faint afterwards.
  7. Hi Sandy, with your history, it would be prudent to get tested for blood clotting disorders.
  8. Hi, so sorry for your loss. You should listen to orangefoot.
  9. From what I have gathered, pregnancy will cause the levels of Protein S to diminish. I would suggest you get yourself a good haemotologist and discuss taking LMWHeparin injections during your pregnancy to prevent another miscarriage. Good luck.
  10. Hey Matt, welcome to the forum. Hang in there. We have all been where you are at. It does get better. Cheers!
  11. It took me about 4 years to switch to alternative medicine. It is too long winded to explain here. It has to do with taking magesium to heal the pancreas to jump start the liver and so on. It is eplained in the book. I tried the Ayurvedic route with no success. What you need is available in all pharmacies, dosages are specific for the herbals. Ulceration and skin necrosis are rare, but you are not alone
  12. Ginko Bilbola acts as an anti-coagulant by enhancing the circulatory functions of the system. There is a French pharamaceutical company that did some research on this subject. They now manufacture a graded dose of Ginko Bilbola. I cant remember the name of the company, but will certainly try and find out for you. Most pharmacies/ health food shops, should carry Ginko Bilbola. I am not certain how it works in the U.K. Like I said, I take Blackmore's Ginko Forte 2000. Going off wafarin sodium and onto alternative therapies to manage PSD and or PCD is a complicated process. Caution needs to be exercised in taking this route. Zarin
  13. Hi Cheeky and welcome! Yes there are alternatives to wafarin sodium. Blackmore's is putting out a hospital approved graded dose of Ginko Bilbola, called "Ginko Forte 2000". Last year when I had a TIA this was prescribed as an alternative for me.
  14. I manage my PSD and PCD using alternative medicine. Regardless of what route you take, contact sport is not acceptable. You will need to make a few lifestyle changes in order to cope with your condition.
  15. I smoke. I gave up smoking after my first few blood clots, but it did not stop me from clotting. So I went back to smoking. I should add, I puff, I do not inhale. I run with my dogs every morning, I cant afford to have unhealthy lungs. I love smoking, so I just puff. Maybe that is the answer to your sister's problem
  16. Zarin

    Fluctuating INR

    It is very possible that the INR is fluctuating due to the diet. If you plan to be on Wafarin Sodium, it is inportant to be consistent with your intake of vitamin k. Somewhere on this BB you will find a list of foods and their Vitamin K values. It is not a complete list, but it is quite comprehensive. Make sure that you do not vary the intake.
  17. Zarin

    Fluctuating INR

    I had a TIA last year. Hospitals across Europe and Austral-Asia, now offer an alternative to Wafarin Sodium. It is a chinese herb called Ginko Bilbola, that has been researched by a french Pharmaceutical company. The dosage has been graded and approved for use in lieu of other 'blood thinners'. Blackmores, NSW, Australia, produces a graded dosage called Ginko Forte 2000. On this herb, your INR is not relevant.
  18. Wow Andy, that is some story. Great you posted it where more people can read and learn.Zarin
  19. Thanks PMS/PSD, I hope the book will help you. Walking in a mall is stressful. The floors are too smoothe. When I lived in Toronto, I too used to walk in malls, but only in winter. Try the good old fashioned outdoors, you will find it very invigourating. Congrats on your daughter getting married. Trust me, you will be better. Zarin
  20. Hi PMS/PSD, I know what you are going through. The pain can be quite incredible. When I first started walking I wore compression stockings, and walked very slowly, using a walking stick. My simple logic said, if my veins are rotten, I need stronger muscles to support them. To get stronger muscles I had to exercise, and that is what I did. To begin, with start on short walks. Carry a bottle of water, as you will be exhausted and will need plenty of breaks to complete your walk. To give you an example, a mountain treck that took me an hour and a half when I first started( and I was huffing and puffing), I can now do in about 20-30 mins. Yes I do take herbal supplements. I take a graded dosage of ginko bilbola and vit. E 400 iu. Ginko bilbola is a circulation enhancer and vit. E zaps the vit K that one intakes in foods. Zarin
  21. To both Sara and PMS/PSD: It does get better. I am living proof of that. I have dealt with PSD and PCD for over 20 years and today I live a drug free life. I exercise regularly and live fairly normally.
  22. Hi Stuart, My book does give the basic protocol, but I am the first to admit, times have changed. Yes, you will find a lot of answers and solutions when you read the book. I do not have a new book right now. I am changing the text of my new book to reflect the changes in my life. Research is catching up with us orphans. I remember the first time I contacted NIH, they told me I had and orphan disease. But you do need to look at a graded dosage of ginko bilbola. hospitals across Europe and Asia recommend it now. It would probably be a day when hell freezes over in America before anyone even looks at the situation. I understand that it is revolutionary, however, after my TIA last year, and my history of violent reaction to wafarin Sodium; the fact that I was effectively treated with this herb, warrents further research. If you are not comfortable with a regime of Coumadin, then you really need to look at the alternatives. recently, I needed and MRI and an incidental cyst was found on my kidkey. These are the side affects of this drug. Right now, I take 400 i.u. of vit.E to zap the vit. k consumed in foods. Please note, Vit. E will NOT thin your blood. I also take a graded dosage of ginko bilbola. I seem to be thriving on this. I need to caution you. Before you reach where I am at, you really need to follow the protocol to enhance your pancreatic functions, elaborated in the book. It will take years, but it can be done. I wish you success.
  23. This manukahoney sound very interesting. If it works, go for it. Standard procedure for healing skin ulcers and skin necrosis is to stop Coumadin(wafarin sodium) and to take LMWHeparin till the lesions heal.
  24. Hello Faith, and welcome. If you go through the various posts in the pregnancy section, you will find that many women have had successful pregnancies. I am so sorry for your loss. Atleast now, armed with the knowledge that you have PSD, your next pregnancy can be successful. Good luck. Zarin
  25. Hello Ben, Welcome to the forum. Many people diagnosed with PSD remain symptom free and do not experience a DVT. It is possible to maintain yourself with some lifestyle changes and an intake of 400 i.u. of vit E to zap the vit. K that you ingest from food; and a graded dosage of ginko bilbola.
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