How many of you have invested in a LLMD opinion on your neuropathy?
 

I'm about to bite the bullet and spend big bucks on a consult with a LLMD in a few weeks. I can't get a concrete diagnosis besides PN and autonomic dysfunction and equivocal for sjogrens:confused:

I live in a tick infested area. I have a black cat that gets ticks and brings them in everyday spring, summer, and fall. I lie and sit in the grass all summer in shorts, never wear shoes, and have had a few ticks on my over the years.

I had the western blot and only two positive IGG bands show up, so according to mainstream medical, they say "I don't think its lyme", but they won't say for sure.

Have any of you gone this route? I feel like I just can't leave anything unchecked and clinically I have all the symptoms except for the fevers and swollen joints.

I think this is a valid thing to investigate.

I have a functional medicine doctor that is willing to run the Igenex panel on me so that is probably my next move. I was an avid mountain bike racer and have been bitten ticks of all kinds. Several years ago I had neurological symptoms 2 months after a deer tick bite. I had 4 negative Lyme tests (standard CDC elisa) and a negative MRI. My doctor threw her hands up in the air and gave me 10 days worth of antibiotics, which was probably not enough.

The issues that I've noticed are that LLMDs seem to be all over the place in terms of belief systems and treatments. So it could be a little of a buyer beware situation.... But the CDC standard is clearly failing so I think the LLMD route is definitely a reasonable option, if you have the money to spend. The current thought of some LLMDs is that chronic lyme becomes much like an autoimmune condition and if it doesn't get treated in the first month, you are pretty much in an uphill battle.

One of the most informative sources that I've listened to a few years ago on this topic was an interview that Chris Kresser did. It seems like a pretty balanced piece.

http://chriskresser.com/diagnosing-a...g-lyme-disease

LLMD ethics seems very questionable, the fact that they dont accept insurance raises a red flag. They also try to push you to untested regiment, or abt treatments, that arnt neccesarily good as well. I look around on people who went to llmds, they seemed to have more side effects from treatments, than actually relief, So buyer beware.
You can reccommend more antibiotics, for a few months to see if that changes. Using antibiotics long term has its own risks, like side effects, antibiotic resistance. from my understanding, doctors other than LLMD and LLND will not recognize igenex as a valid testing method for lyme. I mentioned LYme a few months ago, and got a call today, because i missed her appt, and she(pcp welfare) doesnt think its lyme based on my neuro symptoms, I think she is more inclined to point my issues to "mental problems" than anything else. if you are going the LLMD route, just do your research on them before you make an appt, because i heard its very expensive for an appt.

[QUOTE=Neuroproblem;1132368]LLMD ethics seems very questionable, the fact that they dont accept insurance raises a red flag.
/QUOTE]

It's not that they don't accept insurance, it's that they can't. They don't follow the CDC standard thus there is not a way for them to bill insurance.

Search member name Apollo here.
He has some posts on newer testing protocols.

When I get onto my computer I'll link to his thread
In the subforum.

Have to go with your gut feeling!!!!!!!

Hi Healthgirl

I had the western blot and only two positive IGG bands show up, so according to mainstream medical, they say "I don't think its lyme", but they won't say for sure.

Would you like to share a bit more about this?

There seem to be two not mutually exclusive possibilities:

(1) A serum sample was probed in a Western with IgG specific for Lyme antigens. That suggests that you are infected with the Lyme bacterium.

(2) A serum sample was probed in a Western for Lyme-specific IgG - that suggests that you have been (but may not be currently) infected with the Lyme bacterium.

As an immunologist (not a health professional) who has done many 100s of Westerns I might be able to interpret what you have written in a helpful way.

Here is the link to Apollo's experience and also the newer testing
protocol. He was here on PN for quite a while before going to the new lab for the newer Lyme testing.

http://neurotalk.psychcentral.com/thread195046.html

If you search his name, there are a few followup posts too in the main forum.

This is the lab he finally used:
http://www.advanced-lab.com/

False positives are quite rare in Lyme.... so if you had two positive hits, that would be a clue to further testing that is more sensitive and specific.

[QUOTE=madisongrrl;1132371]Yea thats one of the reasons they dont accept insurance, because they would have to find guidelines, and they would make a bigger profit by not accepting insurance, from my understanding private doctors get a fixed amount for each visit to the office. Without insurance the LLMD can charge you as much as they want.
I almost convinced myself to see an LLMD, based on my neuropathy issues, but i figure that my symptoms are probably not LYMES(not enough symptoms to suspect). and i figured those LLMD are more trouble than thier worth. i know there is a whole population out there that believes in "Chronic lyme"
You already are aware that some of the LLMD practices are questionable, its good to do research on them before investing in them. In california, some of them have yelp profiles.
Where and who is diagnosing you with those NEUROPATHY disorders? is a rheumatologist or neurologist.