Is this unreasonable?

So I've had an ELISA and Igenex testing done and both were negative with only band 41 being IND. I have been suffering from about 80% of lyme symptoms. My illness whether lymes or not has progressed over the last 10 years. My symptoms for the last 8 and a half years have all been cognitive and fatigue. The last year and a half things have gotten really bad very quickly with muscle aches, dull joint pain, very low stamina, exercise intolerance and many more things. What I'm wondering is... since I've gotten 2 negatives, is it unreasonable to wanting my doctor to do a trial of antibiotic therapy to see if it helps? I don't think he's going to refer me to an LLMD because we have the negative tests. Well he doesn't even know that I did the Igenex one. He's ego is too big that I just know for sure he isn't going to refer me. Maybe it's not Lymes but I'm living in hell right now and it's certainly not going to hurt any. I've also been doing the detox baths and taking other herbs because I am so sure it has to be Lymes. I don't know what else it could be.

Does anyone have any thoughts? Anyone else treating themselves as having Lymes but not having a positive test?!

Thanks!

I think a lot of us were in or are in the same situation as you. I had the Elisa test last year and it came back negative so my Dr said I didn't have it because there wasn't any lyme in my area anyway(HA HA). He is a very good doctor but he, as many other Doctors, just don't know any different. I accepted it but after more and more research to try and self diagnose myself it became more and more clear that it was the only possible explanation. The key for myself was to find a good LLMD and then things just started to fall into place. Even though my Igenex came back with only a 41++ and 39 Ind my LLMD still went with my overwhelming symptoms and began to treat me. Finally I actually started to realize that I was not crazy or a hypochondriac. I have just recently started on a course of various oral antibiotics combined with a very strict diet. The jury is still out on if this will help or hurt me, but after 9 years of anti depressants, faith healers, Xrays, Naturopaths, shock therapy, psychiatrists, psychologists etc I finally feel that I am on the rigth path. Just don't give up trying to get yourself better! As far as trying to treat yourself that is an option but from my limited personal experience nothing compares to a knowlegable LLMD. I have to travel 10 hrs each way to see mine, but I would gladly travel much more for what I am getting out of it. I sincerely Hope things work out for you and just know that perseverance pays off.

 

Jr,

Do you recall being bitten by a tick (or other bug) or being in an area where others were bitten by ticks?  Have you been to Florida, the Carolinas, Maryland, or Delaware?  There are other neurotoxin mediated illnesses in certain areas of these states that strongly mimic Lyme symptoms.

 

As usual thanks to everyone for taking the time to respond to me. I appreciate it very much.

@ Razzle - Thank-you for the very good advice and providing those resources. This gives me a little more ammunition to attend my next drs appointment with.

@CycleVancouver - I believe I was checked for a couple coinfections as well and nothing turned up their either. Here's my test results.

IFA, B Burgdorferi G/M/A <40 (<40 Negative)
Igenex IGM - Negative
CDC/NYS - Negative
**41 Indeterminate
for both IgM and IgG Western Blot

Genomic - B Burgdorferi (negative)
Plasmid - B Burgdorferi (negative)
B. microti, IgM <20
B. microti, IgG <40
E. chaffeensis IgM <20
E. chaffeensis IgG <40
B. henselae IgM <20
B. henselae IgG <40

@ Lyme14 - I do not recall being bitten by a tick. I don't recall having an unusual fever or flu either. I do however live in an area where Lymes disease is present. In fact my family doctor has seen a few patients with this disease and according to him my symptoms don't add up to it.

@ Achievinggrace - Yes, I do need a referral. In Canada we can't go anywhere without a referral from a GP unless I travel to the US and pay out of pocket which is an option that I've considered. My doctor has told me numerous times that there is nothing organically wrong with me and he told me that I've got my head wrapped around my symptoms and that I should get some confidence. He has even gone as far as slamming his fist down on his desk to intimidate me. I'm tired of feeling like I'm trying to convince a jury that I'm truly in fact ill. I've been ill for a number of years but the thing is he's a big pill pusher and he's had me on ativan for anxiety so I've basically lived the last few years sedated and I haven't cared about anything. Now that I've gotten myself off that I can really feel what's going on with my body and I want to get better. I went to him in October of last year because I couldn't function because the fatigue was just so bad. He prescribed me ritilan which I only took once. Then when my eyelid started twitching he told me that was because of inflammation in a tooth, now every muscle in my body twitches. Every muscle in my body also aches and is very weak and his answer to that is I'm not using them enough and I should exercise... then when I try to exercise I am in so much pain for days afterwards.

Doctors are so hard to come by here and I just don't know if I have the energy to start all over again with someone else. On the other hand I'm not getting anywhere with this one. I know inside my own body that something serious is going on. I feel almost incapacitated. If I feel this bad at 29 I can't imagine what it's going to be like at 50 or even 40.

I'm tired of it all. I know I'm not the only one going through this... but I at least want to know if it is Lymes or not so I know how to begin getting better.

Thanks again to everyone for your responses and support.

Hi Traveler, thank-you very much for the suggestion however Calgary is a 2 day drive for me. It's closer for me to go to the US to an LLMD. I emailed you almost 2 weeks ago asking about the chinese medicinal herbs that you are on but I haven't heard from you. Did you get that email? It's from a hotmail account.