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[QUOTE=cl84;4644027]I was diagnosed with Lyme Disease in August 2009. My main symptoms were vision problems, severe fatigue, and cognitive dysfunction.[/QUOTE]

Let me preface this by saying that I am not a doctor, so cannot diagnose. I can only share my own experiences and the knowledge I have gathered during more than a year of treatment for chronic Lyme disease. Others have already given you great advice, i.e., find a Lyme-Literate doctor (aka LLMD) AS SOON AS POSSIBLE.

Did your ID doctor ever test you for OTHER tick-borne illnesses (so-called coinfections)?? I have Babesiosis, Ehrlichiosis (HME), and Bartonella in addition to Lyme. The tick that bit me was a walking Petri dish of infection......and unfortunately this is [I]extremely[/I] common.

YES, you still have Lyme (you know you do or you wouldn't be here), and YES, chronic Lyme exists. I am here to tell you it does, because I have it! As do many many members of this forum and other Lyme forums out there.

There is currently a battle raging between the IDSA (bad guys) and the LLMDs who belong to ILADS (good guys). It's about money, bottom line. The IDSA is in cahoots with the insurance companies, and big pharma, and who knows who else! They say "Lyme is rare and hard to catch. It's easy to cure...just 2 to 4 weeks of antibiotics and you're good to go!"

This is an outright lie, of course....well, you already know how well that worked for you! As I said, I've been under treatment for more than a year now, with several different antibiotics. I took Doxycycline to start, then switched to Zithromax after 6 weeks, then was told that they wanted to treat my Babesiosis so was started on Alinia (in addition to the Zithromax).

Because I had [I]vision problems[/I] and [I]cognitive issues[/I] (just like you), I was told that I had neuroLyme, and that the best treatment would be IV Rocephin, because that's the antibiotic that does the best job of penetrating the blood-brain barrier. Because the bacteria have invaded my central nervous system.

My insurance wouldn't pay for the IV antibiotic, so I paid out of my own pocket for 7 weeks of IV Rocephin last summer. I actually started to see an improvement in my brain function during the 7th week of IV treatment!

Then I ran out of money. I'm now taking an oral "cousin" of Rocephin called Suprax. My cognitive problems have returned; apparently I need more Rocephin. I'm still taking Alinia, Zithromax, and in addition, Malarone, which is an anti-malarial drug for the Babesiosis. Babesia is related to malaria.

Bartonella can also cause cognitive problems and other neurological issues. Plus it can cause you to have negative blood tests for Lyme and for itself since it has the charming habit of altering your immune system response and "turning off" the ability to manufacture certain antibodies.

You probably already know that the blood tests for Lyme, etc., are not really testing for the presence of the bacteria but rather for [I]antibodies[/I] to the bacteria. If your immune system has been weakened in any way, a blood test may produce a false negative.

Well, I've told you all of this in an attempt to explain that treating Lyme disease (and the attendant coinfections) is a very complicated process that can take many months if not years. Especially in people with neuroLyme. This is what I was told by my LLMD.

By the way, we just found out that my husband now has Lyme....since Lyme is a spirochete related to syphilis, we're pretty well convinced he got it from me. :eek:

Please, please get yourself an LLMD! Where do you live? Someone here should be able to help you find a doctor who is affiliated with ILADS. I live in CA and could email you a list of CA LLMDs privately.

Good luck with everything and please keep us posted!





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