I went to see the Infectious Control doctor 2 weeks ago and he had me get blood work done and I just heard from him today (I called him).
He tested my liver pancreas kindney and thyroid function: all good.
He also tested me AGAIN for the western blot: results were wierd two testing facilities one in California and the other in Pittsburgh, Calif.
Test came back negative for wb but they did a C6 on me and I was highly positive for lyme. Pitt's test came back that I was poistive.
The "doc" is suppose to be finding out why the differ, any thoughts?
Also he tested me for West Nile Virus and hey I tested positive for it so now I have that too!!!!
NOW knowing all of this I asked the doctor How are you going to treat me for this?
He told me "I REALLY THINK THAT YOU BEING ON THE TWO COURSES OF ANTIBIOTICS (doxy 200mg daily for 15 days) THAT SHOULD BE ENOUGH TO HELP YOU.
WE'LL RETEST YOU IN 8 TO 12 WEEKS AND SEE WHAT THOSE RESULTS SAY."
I about fell over. Anyone else had/have this? I know you can have co infections but this....?
I called Dr.J and he cant get me in till Dec is this normal?
Help I need input?.
[ 08. November 2007, 07:06 PM: Message edited by: eliza85 ]
Posted by Lymetoo (Member # 743) on :
30 days of doxy????? I have names of other LLMD's in PA if you need them.
I hope your appointment will be early enough so there is no break in treatment??
Posted by disturbedme (Member # 12346) on :
Was he supposed to be LLMD?
Posted by Lymetoo (Member # 743) on :
No, Dr J is....if I'm right about assuming the rest of the name!!
Posted by Geneal (Member # 10375) on :
That is interesting. I googled ticks and West Nile and guess what?!!!
They can be vectors of it. Great.
Please find yourself a LLMD as soon as possible.
Hugs,
Geneal
Posted by adamm (Member # 11910) on :
I went neuro 3 weeks after my tick bite
while taking that dose of doxy--I think
the official figure is that it fails for 40% of
folks. And if you have multiple infections, forget
about it! You need something more stronger, so
get thee to an LLMD.
Posted by CaliforniaLyme (Member # 7136) on :
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
Posted by tailz (Member # 10014) on :
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.
Posted by bettyg (Member # 6147) on :
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
leave membership no. blank; send; read any replies.
Posted by ByronSBell 2007 (Member # 11496) on :
I tested positive for west nile as well, it was not an active infection, just the traces.
My doc told me west nile shows up in alot of people but 98% never show any symptoms.
Posted by Vermont_Lymie (Member # 9780) on :
What is the treatment for West Nile, anyway?
Posted by CaliforniaLyme (Member # 7136) on :
CDC testing for TBE viruses- *********************************************** From: "CIDDVD1-SPATH" Date: March 1, 2005 8:11:25 AM PST
Subject: RE: Lab Test for Tick-borne Encephalitis?
Yes, our laboratory will do serology for tick-borne encephalitis. To request testing, you may contact Dr. Pierre Rollin or Dr. Andy Comer at
404-639-1115.
Please let me know if you have additional questions.
Will they send me a kit to take to the doctor? - is that how it works?
Posted by CaliforniaLyme (Member # 7136) on :
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!!!
Posted by tailz (Member # 10014) on :
Wow, thanks. Does a doctor need to order the test though?
Posted by eliza85 (Member # 13630) on :
I would think that if your doc refers you the insurance should pick it up, right?
The duck told me I tested highly for WN so does that mean it's new?
Or does it stay in your system along with the lyme?
Beth
Posted by princesslee (Member # 12141) on :
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,
Posted by on :