Should I start looking for LLMD?

Hi all from CT,

New to this board. I play lots of sports and one day noticed knee pain, I thought it would go away so kept playing but it only got worse. Ended up visiting ortho a few times, did MRI, X-Rays etc., didn't find any structural damage only slight degradation so prescribed NSAIDs and let me go. I kept doing my exercises too. I kept getting better but then got a bit worse and my other knee was involved, even though not as bad as the other one.

I decided to report this to my PCP which is really nice and since I already met my deductible I didn't really care about the number of tests she would run, so she ran tests for lupus, RF and a lot of other stuff I never heard about and Lyme was one of them (I now understand that not every doc would order this test at all).

The first test was:

LYME IGM AB NEGATIVE
LYME IGG AB POSITIVE

So they ordered a follow up western blot test which came out as:

IGM IMMUNOBLOT NEGATIVE
Notes: No bands detected

IGG IMMUNOBLOT NEGATIVE
Notes: p93, p41, p23, p18

This seem to be negative according to general standards as they require >=5 bands for IGG but as far as I'm concerned P23 and P41 bands are direct markers for Lyme. So what do I do now?

I haven't received a follow up call from my PCP yet as western blot results were released today and I'm not sure if she'll request any further exams, but chances are she'll have to follow insurance guidelines and will treat me as healthy individual.

My current symptoms are: knee pain, fatigue (definitely need to sleep more lately, even had to sleep in the office a few times even though I'm trying to get plenty of sleep). However, due to my knee pain was initially started due to me being stupid (had to stop putting lots of pressure on my knees as soon as the symptoms manifested due to overuse) I can't really tell if my joint pain could be connected to Lyme?

I go hiking almost every week and my area is definitely affected as the city where this disease comes from is located 50 minutes from me. I had no bull's eye rush, however, I definitely remember I had a bite around 6-8 months ago which I couldn't identify, I was also bit by a tick around 20 years ago but didn't run any tests at all as it was in a totally different area.

So what do you guys think? Does it look like freshly acquired Lyme? Does it look like Lyme which I had for years?

If you could PM me a good LLMD in the area in CT I would appreciate that too.

Thanks.

Hi PlayerOne, welcome to our group.

Connecticut is one of the Lyme hot spots. Your clinical symptoms are more reliable that the results of the lab tests, and really, 3 markers would be more than enough for a pos. diagnosis, and CDC knows it. Requiring 5 isn't necessary.

You might want to go to our top topic, "New to Lyme?...start here". There is much valuable information there, including a link to a link to a site that lists Drs. by State that are ILADS friendly, rather than IDSA coherents.


It's hard to know sometimes whether you have a fresh infection or have been harboring an old one, unless you've had symptoms before or were aware you were bitten and perhaps had the bullseye rash.

Often people are bitten and infected and get symptoms (without necessarily knowing what from), but sometimes they don't. Months or years down the line suddenly it seems every aspect of their health starts deteriorating and they experience migrating pain.

Usually once they become familiar with Lyme and Co infections they can pinpoint traumatic events in their lives; surgery, sometimes as little as having teeth pulled, or snowballing emotional stress or other severe illness, just prior to this huge flare of odd symptoms. This happens with Lyme.

Post Edited (julymorning) : 11/21/2016 6:18:00 PM (GMT-7)

If you have symptoms - it's active.

"My current symptoms are: knee pain, fatigue (definitely need to sleep more lately, even had to sleep in the office a few times even though I'm trying to get plenty of sleep)."

In addition, you had a tick bite 6-8 months ago.

There isn't really a good, reliable test to determine if an infection is active.
If you had a tick bite...and didn't treat it...and now have symptoms, then you should see a LL Dr.

When treatment starts...you should have a response...either you will herx (increase in symptoms)..or you will start to feel better....or both.
It may not happen in the first few weeks, though...everyone is different.

But you had a tick bite 20 years ago...as well. ..not to mention + on lyme specific bands.

I'm with Girlie.

I wouldn't prolong treatment for too long either. The longer you wait, the longer you will need to be on some kind of treatment protocol to get better.

Go ahead and activate your email so that one of us can email you some names.

A more accurate Lyme and co-infection testing laboratory is IgeneX labs. You will have to pay for the tests, which vary in cost depending on what you want. I believe you may be able to get reimbursed from your insurance carrier.

Post Edited (julymorning) : 11/21/2016 9:26:08 PM (GMT-7)

PlayerOne said...
I've updated my account so should be able to receive emails now.

Watch your email in the next 15 minutes.

Welcome to this community! I agree with girlie, if you have symptoms, then something is up. This screening questionnaire really clinched it for me, to start going beyond nutrition and adding herbals. one you can print out and do www.cangetbetter.com/symptom-list and one you can take online. www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html
When I read story after story of how difficult it is to a. get diagnosed b. find someone who can help I followed the advice here. I invested in some books and began testing with some herbs using the Stephen Buhner protocol.

Do you need to go through your insurance company? I do know some LLMD's do take insurance. Not in my area Out of pocket it will cost you $600 on up for the first consultation. Why don't you put up a thread that says seeing CT LLMD that takes insurance.

I would definitely share the results with your regular GP.

If you have money out of pocket, I would recommend investing in seeing an LLMD to get their take, but don't wait to begin taking right action.

Hi all,

Thanks for all the replies to my mailbox. One of the members actually sent me a doc who seem to be in my network (i just kept entering them into my insurance search), moreover, it seems that he's located 15 minutes away from my office. But I don't really get how it works, according to CDC standards I'm not infected, so what happens next? I schedule an appointment with the doc, share my concerns, and then what? Will doc be able to prescribe ABX based on the test which is negative by the standards of CDC but positive according to the standards of IGNEX? This is soooo weird.