-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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joalo
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Up.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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TX Lyme Mom
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My husband has taken warfarin for 35+ yrs. because he gets blood clots if he stops. It's relatively safe with a very long track record -- much safer than the newer blood thinners.
The only "disadvantage" of warfarin/coumadin is that he has to have his blood tested every two weeks to keep it within range. Actually, that's really an "advantage" though because it helps him to keep tight control -- although it can be a bit of an inconvenience.
There used to be an older blood thinner, Dicumarol, which was even better than warfarin/coumadin because Dicumarol had a shorter half life, but it was taken off the market when the patent ran out.
When my husband was scheduled for surgery, he had to discontinue warfarin for several days in advance of the surgery because it has a longer half life. Fortunately, he is able to stop it for a few days without difficulty.
Some doctors will tell you that there are dietary restrictions with warfarin, but we don't worry about any of those because he measures his blood clotting time regularly. Foods that are high in vit K such as green leafy veggies can interfere with warfarin, but we refuse to take those beneficial foods out of his diet. Instead, believe it is much better to adjust the dosage of warfarin than it is to change one's diet so drastically.
Posts: 4563 | From TX | Registered: Sep 2002
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canbravelyme
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Thanks, TX Mom!
As my LLMD told me Xarelto is considerably safer than Warfarin, I feel somewhat confused to have found out about the serious risks regarding Xarelto -- like if a bleeding event occurs, they don't have anything proven to counteract the drug, unlike Warfarin, which has an antidote. What is my LLMD referring to, when asserting it is safer? When you say Warfarin is much safer, could you please elaborate?
Apparently, if one switches from. Xarelto to Warfarin, one is at higher risk of complications due to clots.
I'm only on this med for 3 months + 3 weeks -- what are your thoughts on my sitting tight? I must say, the lack of antidote to an adverse bleeding event is a source of constant low-level concern...
Best,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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nefferdun
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It might be a good idea to get the methyl cycle mutations test so you can address the underlying reason for hyper coagulation.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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canbravelyme
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Thanks, Neff. I got the clot due to complications with a PICC line -- do you think I should still get the test?
Best,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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TX Lyme Mom
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quote:Originally posted by canbravelyme: Thanks, Neff. I got the clot due to complications with a PICC line -- do you think I should still get the test?
Best,
Lyme patients who are at risk of hypercoagulation are not good candidates for PICC lines. In fact, some LLMDs do a hypercoagulation test panel first before allowing any of their patients to start IV antibiotics because there have been several deaths in the Lyme community which resulted from the complications of blood clots from PICC lines, according to one LLMD who lost one of his patients that way. (Personal communication)
However, you probably won't need to be on blood thinners for the rest of your life as my husband has been, so it's up to you to decide about testing for methylation defects. (They didn't have hypercoagulation testing until about 10+ years ago and we didn't bother to get it then because it was still so new that I didn't see any point since he has been stable on his blood thinning meds for 35+ years.)
I am seriously considering having him tested for genetic methylation polymorphisms though. The advantage is that it takes the guess work out of managing his nutritional supplements and I expect that we would save money in the long run if we knew exactly which supplements he needs to be taking. Here's the lab I intend to use for this test, followed by a sample test result so that you can see which 30 SNPs are included in the test:
There are other diagnostic labs that do cheaper testing, but you get more value for your money from this lab, IMO. The patients who follow the individualized methylation program from this lab are making remarkable progress that I'm just not seeing among other patients who use other diagnostic labs.
Remember, you only ever pay for this kind of genetic test once in your lifetime because your genes to not change. What changes are the "epigenetic expression" of those genes, and that's what you are aiming for.
Here's a link to a FREE e-book about this program, but beware that it's not only just about autism! This program is effective to prevent cancer by improving one's detoxification pathways. It also helps prevent heart attacks, which you are probably a candidate for since we already know that you have a tendency to blood clotting problems. The list of genetic conditions goes on and on.
When you receive the results of the test, then you also receive a FREE copy of the author's new, updated version of her book, titled "Genetic Bypass" because it's about so many more health problems than just autism. You can also participate in their FREE forum for patients who follow this methylation improvement program. The book is not available on Amazon, but used copies of "Genetic Bypass" sell for around $245.
This methylation program would be especially helpful for MCS patients or for any Lyme patients who do not tolerate antibiotics well because of their inability to detoxify sufficiently.
A lot of CFS patients follow a similar methylation program, but their forum discussions are like "the blind leading the blind." If you are smart enough and brave enough to try to figure it out for yourself, then you might be able to save money by testing with another diagnostic lab.
However, I expect that one would save the difference in the cost of nutritional supplements over time instead of choosing them by "trial and error" -- not to mention the value of receiving a copy of the expensive GP book. Also, with access to the free forum, you would learn about updates to the program just as soon as they are developed.
When you read about the author's unique background and experience, you will begin to appreciate just how much this particular methylation program has to offer over other similar programs.
I do not have any financial ties to this company.
Posts: 4563 | From TX | Registered: Sep 2002
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
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quote:Originally posted by canbravelyme: Thanks, TX Mom!
As my LLMD told me Xarelto is considerably safer than Warfarin, I feel somewhat confused to have found out about the serious risks regarding Xarelto -- like if a bleeding event occurs, they don't have anything proven to counteract the drug, unlike Warfarin, which has an antidote. What is my LLMD referring to, when asserting it is safer? When you say Warfarin is much safer, could you please elaborate?
Apparently, if one switches from. Xarelto to Warfarin, one is at higher risk of complications due to clots.
I'm only on this med for 3 months + 3 weeks -- what are your thoughts on my sitting tight? I must say, the lack of antidote to an adverse bleeding event is a source of constant low-level concern...
Best,
If you read that article more carefully, you will see that it applies only to patients with a history of atrial fibrillation. Furthermore, it also states:
"But patients who temporarily or permanently stopped rivaroxaban or warfarin during the trial had similar rates of stroke or non-central nervous system embolism, according to Piccini."
Remember, the newer drugs are more profitable for the pharmaceutical companies. Drug companies spend a lot of money "selling" doctors on these new drugs at medical conferences. Many doctors fall for their propaganda.
Instead, we follow the advice of our retired family doctor who was "old shcool". He always said: "Never be the first to jump on the band wagon, and never be the last to jump off the moving train."
There's another relatively new anticoagulation medication -- can't think of the name -- which has been out a few only just a few years, and already there are class action law suits because of complications from it. Just watch the TV ads and you'll be able to figure out which drug I'm referring to here.
Personally, we always try to avoid any new drug which hasn't been out long enough to see if it's pulled off the market by the FDA because of reported adverse events or whether there are class action law suits against the drug manufacturing company whenever the FDA fails to take action to protect the public from the drug.
That's why we consider warfarin to be safer than any of these newer anti-coagulant drugs which are so very profitable for the pharmaceutical companies. Besides, warfarin is out in generic form now so it's relatively cheap, especially compared to these fancy new drugs which are being so heavily marketed to doctors.
Posts: 4563 | From TX | Registered: Sep 2002
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CherylSue
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Any Lyme patients on Xarelto? What were your experiences?
Thanks.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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CherylSue
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Any Lyme patients on Xarelto? What were your experiences?
Thanks.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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