Any other places to find LLMD's?

[Elleon_arual]

Hello!

I think you all know I pretty  much despise my LLMD. I met ANOTHER person over the weekend who goes to him and hasn't gotten better. I've now met over a dozen people who go to him and no one has gotten better. He never prescribes supplements or any kind of cyst busters.

I emailed ILADS when I first got diagnosed but both of the docs they gave me were $$$$$. They gave me an e-mail of a woman who volunteers for some Lyme group in Georgia and she provided me with some names too. Again, they were all costly and I absolutely can't afford them.

Is there any where else or anyone else I can e-mail or message/call and ask about LLMD's in my area? I'm losing hope.  

[Ricobord]

That's great that an ID doc actually looked at your IGeneX results without mocking them, and is willing to treat you. I was seriously considering taking the same route. But I ended up hospitalized before I could get in to see an ID doc, and the docs in the hospital rudely insisted I didn't have Lyme. I was even twice refused a consultation with an ID doc because I'd tested negative on blood and CSF screening tests. They told me the CSF test was "highly accurate."  That ended that plan.  I ended up at the big bucks LLMD less than 2 weeks later.

But it's shrewd to get as much as you can through the system. I know someone who got 4 months of Rocephin from an ID doc, which is amazing.

For anyone who has insurance but not the money to go to a costly LLMD, I encourage you to call up your insurance company to ask about reimbursements for out of network doctors. Some insurance will cover medications even when prescribed by an out of network doctor, which limits out of pocket costs to the appointments and co-pays.  I only get 1/3 of my appointment cost reimbursed, but since all my meds are covered, it's nowhere near as painful as if I had to pay for everything.

If insurance will cover meds and you just need the funds for appointments, then sell something, call on family members, anything to come up with the money.  Without treatment, Lyme only gets more entrenched.  Your life is worth it.

[ngageme]

I can relate to your situation as I was and still am in the very same boat. In my area a so-called LLMD wanted to charge $850 for the first visit, of which I have already written a post before.
After some logical thinking done, I came upon a conclusion that it might not have to be an LLMD who is going to treat me. Emotions set aside, I went to see an Infectious Disease Specialist, a visit to whom has cost me $166 instead of $850. I had brought my Igenex lab results to him.
The doc was actually very receptive to these tests, but stated that the positive bands show up as ++ may also indicate current infection of other bacterial and/or viral etiology. He explained that the Lyme spirochettes share the same proteins to which they bind.

He is neither confirming nor denying my late-stage Lyme diagnosis.

Having said that, he suggested that I take 3 weeks of Rocephin IV to see if that could clear some neurological symptoms that I am having amongst other symptoms. Meanwhile he ordered more blood tests such as CD4 and CD8 to see the progression of infection.

I am saying all this because at the end of the day, the reality about not being able to afford to see an LLMD becomes a very good reality.

Sometimes one has to work with what tools one has at their disposal.

I hope this helps!

[tryingtofindpeace]

check out some of the ones in NY. i am waiting to get in to see one. the ones near me all have good reviews from what i have read

[cave76]

I'm sorry that you can't afford the high prices. Not to diminish that----- you're unfortunately in with a huge number of other people in the same fix. :(

If you're gauging your llmd's ability to help you I do have to remind you that you've really only been treated for a fairly short time, Lyme-wise. Sorry.

If you're gauging your llmd by how many others haven't gotten better---- perhaps they've only been in tx for a couple of years. And it's not known just how long they had Lyme before they started treatment, or if they cycled through a lot of antibiotics, or ---- etc. Sorry.

Too harsh? Not really---- just truthful. Sorry.

[Elleon_arual]

I've posted in other Lyme forums and just get the same few names over and over again.  They want $800 for first appointment, $350 for follow ups. It's not that I don't want to pay that much, it's just that I literally cannot afford it.