More questions...

[kitty9309]

Hi again! Thanks to everyone who has given me ideas and recommendations.
Sorry to keep posting, but my neuro appt is Friday and I am nervous about the outcome. My endo who dx'd me is this neuro's good friend. I need this neuro to get on board for my diagnosis and treatment. The endo made it sound like he could make it happen. They are both Top Docs and I really like them both. (Saw the neuro last year, independent of the endo, hadn't even met the endo yet!)
I have a lot of thoughts going through my head right now. I'll list them:

1. I have NO positive blood tests (2 neg ELISA's and 1 neg WB).
2. Do I do a spinal tap as my endo suggests? Even if the yield is low, what if I am the person who tests positive?
3. The spinal tap can help r/o MS.
4. The endo says that my tests may well be negative at this point b/c I have had it for so long (14 years).
5. My first ever Lyme test was 3 years after the rash and 1st vertigo spell. It was an ELISA and we all know they are not necessarily accurate, right?
6. The endo wants to treat w/o any positive tests due to history and symptoms. (this is good, I know). He said let's not spend $$ on the Igenex tests right now. He relies on his clinical skills, which I love. I told him I want a positive result so I can frame it!! He got that. lol


I am a microbiologist and understand all the testing and bacteria related stuff. I just need some human thoughts or suggestions about the above thoughts!

My head is spinning. I need to get through Friday's neuro appt!   aaaggghhhh

[laura1967]

http://www.personalconsult.com/   Here is his website. He has a lot of free e books you can download too. I have 4 of his books and he seems to really understand chronic lymes which most drs don't.
Don't forget to scroll down on all of his pages...they seem to go on forever with info...lol
Let me know how you do. So far so good on the doxy for me....

[kitty9309]

Thanks. Can you give me his website?

[laura1967]

Sorry Kitty forgot to add....I would not waste any time on a doctor unless he is a lyme disease specialist. With all the neuro problems and you being chronic you need someone you understands completely how to rotate meds and what to treat first.
I think the new lyme specialist I found in naples does long distance consults. He has a website too.....let me know if you want his information. At least his office may be able to recommend someone in your area.

[laura1967]

Hi there...I would ask for him to put you on an antibiotic rotation protocol for lymes. Especially the doxycyline. First rule of them with treating with negative tests (which by the way is typical) is looking for the herximer reaction when starting antibiotics. This is usually the first positive sign of treatment working. Even though you will feel like he//.
Very important to be tested for co-infections, because if not treated first for those you will not get better and be able to kill off the lyme buggers. (Babesia, Ehrlichia, and Bartonella)
The Elisa test is hardly ever accurate...there are crappy tests out there that are "approved tests" by insurance companies. Go straight for the treatment is your insurance will allow. There are a whole bunch of complimentary herbs you can take with the meds to inhance the effects. If you are interested in some really good books by Lyme disease specialists, let me know and i will let you know which ones I have.
I am in chronic stage....first tick bite was years ago. Now that i am in florida, most drs laugh at the possibility. I found a specialist in naples just recently who has written about 3 books on lymes treatments and recovery. He sounds absolutely miraculous....saving the funds to go to him. I just started a round of doxy yesterday for bronchitis....it will be interesting to see if i have any die off from residual lymes or co-infections. Kind of scary...lol....hate the herxes!!
I would do spinal tap as last resort....there are too many treatment options to try first and always you will feel them working if it is the right treatment.