CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
West NIle is a flavivirus in which is the same family of viruses known as the TBE viruses- the tick borne encephalitis viruses. They are slow viruses meaning that they can take 2-10 years to show effects. Sometimes 20-30 even!!! A subgroup of people infected with them will have neurological sequelae which is the reason they panicked when WN hit new York.
WEST NILE does NOT have as bad neurological sequale as Far Eastern TBE which results in ALS type manifestations in a subgroup- West Nile is MUCH MILDER!!!! Still neuro complications in some people years later- but not generally as bad, more polio like... and that is in a minority of people infected- MOST will be fine!!! VAST majority will be fine!!!
I would get treated thoroughly for the Lyme and worry about the WN later. It can result years later in sequelae but that is in a minority of people- and there are potential treatments for it which you can explore.
Another less scary example of a flavivirus which they have found to be completely curable (which until recently was not thought possible!) is Hepatitis C. Hep C is also a flavivirus, you can have it for 20-30 years before it shows any neuro symptoms.
It is now 100% curable and I expect within the next few years they will find similar cures for the others. Seriously.
I tihnk there are probably others of us neuro Lymies who have WN as well- and you MAY have tested positive for the WN because it hit the same test response as a TBE type virus of the USA- Powassan or Deer Tick Virus- may be a false positive-!!!
I would get tested again by the CDC. They will test the public for flaviviruses for free if you get the blood to them. Someone in my support group got that info and I will post it on this thread when she resends it to me because I can't find it!!! Again, there are MANY flaviviruses and many are non-lethal and it could be a false positive. I would get tested by the CDC to make sure. It's worth it to really know exactly what you have!!!
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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tailz
Unregistered
posted
I live in PA, too. I asked Dr. S to test me for West Nile since I was so sick, and he laughed, but then again he told me he was somehow involved in helping to develop the new guidelines.
Whoever you see, don't go to Dr. S. He dumped me because he didn't want to hear me go off at him every visit - and I WOULD have, too.
That's insane what they are doing to you.
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bettyg
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posted
the ducks got you again!
if you do a SEARCH found at top for others with lyme and west nile virus; i remember 1-2 but have no idea if that was months or 1-2 years ago!
lyme and west nile virus medical topic line any date
-------------------- 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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tailz
Unregistered
posted
Will they send me a kit to take to the doctor? - is that how it works?
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Tailz- with the CDC I think you have to get your blood to them!!! I think you have to pay for that but they will test for free is my understanding!!!
-------------------- 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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tailz
Unregistered
posted
Wow, thanks. Does a doctor need to order the test though?
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posted
I don't think infectious disease specialists are much help when it comes to lyme. The only one I ever took my daughter too, was belittling and wanted to do spinal tap and other horrid tests.
I don't think I'd waste my time going back to him if I were you. But, I'd definitely keep your appt with Dr. J. It may sound like a long time, but at least you'll get real help.
I know you mentioned you have horrible symptoms that are all symptomatic of lyme, so I'd think you're not free from it yet.
Just my thought, Take care and God bless,
Posts: 56 | From Downingtown, PA | Registered: Jun 2007
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