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I finally found a real LLMD!!

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Lyme Disease
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Posted 3/19/2014 4:45 PM (GMT 0)

Hello everyone,

I think I finally found a legit LLMD! You know what they say, 15th times a charm. He actually knows what he is talking about when it comes to Lyme. This is literally the first doctor who has! Unfortunately he still wanted to do more blood work to look for other coinfectors that were not on my IgeneX, and to help rule out other some things. So now it’s another wait while my blood is processed. I’ve waited this long, what’s another week or so? I asked him why the last two LLMD’s didn’t care about my IgeneX test. He said while the CDC always comes back negative, IgeneX always seems to come back positive. He likes to use a lab in NJ that seems to be somewhere between the two. That being said, he did not dispute my results and said I am symptomatic. How and what he will treat me with is going to depend on coinfectors though.

Posted 3/19/2014 4:56 PM (GMT 0)
I am so glad for you! Getting a doctor that you trust and that knows what he/she is doing is a great step in the healing process.

Please keep us informed of your progress.
Posted 3/19/2014 5:04 PM (GMT 0)
This isn't Dr. I in Plainview is it?
Posted 3/19/2014 5:24 PM (GMT 0)
It's Dr D in Delray and Plantation.
Posted 3/19/2014 6:03 PM (GMT 0)
do you mind sharing lab in NJ, that is going to be used?

thanks
Posted 3/19/2014 6:13 PM (GMT 0)
Ok well that's good. I was hoping for your sake it wasn't Dr. I.

I've tested through the Jersey lab (MD Labs) and I have mixed reviews. While they found Anaplasma and Mycoplasma P., their Western Blot was severely lacking and my Bart test was negative and I strongly believe I have it. They also never tested for Babesia Duncani (only Babesia Microti) but maybe the doc had never requested it.

Through MD Labs I only tested positive for one band (41 IgG) which was quadruple positive with IGeneX. IGeneX was a totally different story and found many other bands plus they report INDs and don't throw out bands 31 and 34. Everyone is not positive through them as many on here have tested negative. Sorry don't mean to rain on your parade but I felt it was important to post this so when you get back your test you don't get down if you see a negative Lyme result. I know you're looking more at co-infections but just keep in mind that detecting Bart and Babs is very difficult through any lab.
Posted 3/19/2014 6:14 PM (GMT 0)
Hi Akkami-

I am brand new here and I came across your post. I couldn't believe it when I read where your LLMD is located. I live in Sunrise. Won't bore you with my story. I'm sure you've read enough of them and suffice to say it's as long (definitely not as long as some unfortunate others) and convoluted as most stories. I fall into the "do I have this thing or not?" category like a LOT of other people. I'm pretty convinced I will never know for sure and that is proving to be a VERY difficult thing for me to accept. Regardless, I acknowledge that I need help and am wondering if you are willing to share the name of your LLMD since it SO close to me. I'm new to this site but is there a way for you to send me a private message if you're not comfortable posting it? Shoot, I'd give you my cell # if you wanted it LOL If you're in Florida like me you probably don't have a soul you could talk to in person and relate to just like me!
Posted 3/19/2014 6:24 PM (GMT 0)
Todd: Thanks for the info.

Cog: I will be glad to msg you and save you a lot of time and money. South FL is terrible for finind a good LLMD. It took me 8 months and 15 docs.

I believe you need to go into your profile settings and share yor e-mail before I can msg you. When I go to your profile now the option is not available. I can't share the name in a post due to the firestorm around Lyme.
Posted 3/19/2014 6:39 PM (GMT 0)
Good! I hope this will be the one you need so you can relax more and start your journey to health. I'll keep my fingers crossed!
Posted 3/19/2014 6:50 PM (GMT 0)
Welcome to the forum COGFL14! You need to remove your email from the forum and go to your profile to enable it on there. Anybody can access this forum, so you don't want it out there for anyone to use.
Posted 3/19/2014 6:59 PM (GMT 0)
COGFL: Sent
Posted 3/19/2014 7:57 PM (GMT 0)
So glad for you finally finding a doc to treat you. This is crazy the
way we can not find good medical care for Lyme Disease. Hope you are soon feeling better!!
Posted 3/20/2014 3:22 AM (GMT 0)
Glad to hear you finally found a good LLMD. Can you private message me who you are going to, we own a place in Boca and our renter is moving out end of next month so we might be moving back. I lived down there 10 yrs and went from doctor to doctor trying to find out what was wrong.

Keep us posted on your results.
Posted 3/20/2014 3:50 AM (GMT 0)
I just saw llmd today for first time and she wants to do some more testing for coinfections and MD lab, I have never heard of them until today and then saw ur post here. She did mention they usually find mycoplaxma and anaplasma. I am so suspicious of labs anymore but I have to put my trust in her experience, that is what I'm paying for, I had become frozen regarding next testing steps since I have lost faith in the process. Hopefully ME is a reputable lab.

Good luck with ur search for good llmd. I am curious were the other drs that dismissed ur igenex tests really llmds? I know the feeling of wanting empirical evidence of infection especially due to the treatments we have subject ourselves to, would like the confidence knowing I'm not putting myself at mote risk with treatments but realise I may not get that confirmation after being sick probably 10 years. It's frustrating and scary.
Posted 3/21/2014 7:27 PM (GMT 0)
Do any of you have experience with Dr. I in plainview, ny? I'm going to see him on Monday! Not sure if I have lyme. + Igenex, - Elisa, and Standard Western Blot is pending. Thanks!!
Posted 3/21/2014 8:30 PM (GMT 0)
Akkami,

I had 2 IGeneX tests done for lyme and co-infections both were negative. My new LLMD sent the co-infection test to Labcorp and finally I got a positive result.
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