Finally Saw an LLMD

So after much waiting and debating back and forth with myself I finally decided to go and see an LLMD which I saw yesterday. I put it off for so long because of my negative ELISA and Igenex results, but decided there was nothing to lose by going. I was expecting to either get a diagnosis or to rule Lyme out but didn't get this... maybe it's not that cut and dry. The doctor was very nice and knowledgeable and did say that I have some symptoms of the disease and she wants to treat them. I get the feeling that most people who see this doctor gets treated, whether they have Lyme or not. I'm sure there are others that are or were in the same boat, I just wish there was a way to know for sure without treating something that might not be there. I don't know how I feel about this.... however I am willing to try anything to feel better. I was hoping to get some comments from others who have seen LLMD's... is this typically how it works? I have two voices in my head and they are fighting back and forth... one is telling me that I have to have this disease because of how bad I feel and the other is telling me that I don't have it because there is no evidence with the exception of some of the symptoms which could be caused by something else. Now I obviously don't hear these voice :) this is just the inner struggle I have going on because of the lack of proper testing for diagnosis. I guess I could always try the treatment plan for several months and see how I respond?

borderlyme said...
Unfortunately there are still no guarantees in medicine...and especially with these sort of chronic "mystery" condition there's always so much questioning! I think most of us who have Lyme find we have a lot of other similar things going on, and things like diet, drinking plenty of lemon water, detoxing, decreasing inflammation, resting, etc., will help with a number of conditions.

How negative was your test? Did you have any bands? I can tell you that a lot of people have their western blots change over time - mine was just barely igenex positive in the beginning and now it's overwhelmingly positive (yet still not cdc positive, annoyingly). It's definitely a personal decision, but my opinion is that if you're suffering and there's really no way to definitively diagnose or rule out lyme, the possible benefits of treating if it turns out you don't actually have it outweigh the risks.

I always advocate for taking detailed notes about your symptoms - it makes things so much clearer as you go along (just be careful - it can be easy to become obsessed with writing down symptoms!).

Keep us posted on what you decide!

All the bands on my Igenex test were negative except band 41 which was IND. The co-infections also came back as negative.

My symptoms are mainly as follows.

Fatigue/poor stamina
Neck/back pain
Muscle pain/aching
Muscle cramps
Muscle twitching
Headache
Floaters
Light sensitivity
Increased after images
Ear buzzing/ringing
Eye/Ear pain
Poor balance
Lightheadedness/woozy
Difficulty in thinking
Mood swings
Hot/Cold Intolerance
Exercise Intolerance

I don't have fever, joint pain/swelling, inflammation, etc. My labs are normal for the most part except for very low testosterone.