Its been a while since i posted on here, and to be honest, i feel bad. It may seem to some that i am not taking there advise, i assure you all it is only my circumstances that are stopping me from finding a LLMD and getting a definate diagnosis. I have posted a few things here, and have appreciated every single comment and reply. Unfortunately, i have been forced down one particular route, only because other routes are not available to me at the moment.
I am still trying to get my doctor to take my Lyme concerns seriously, and at one point thought i was making progress. I managed to get an infectious disease specialist on my case, who began to take me seriously, even arranged an Elisa test(which turned up a negative result). I then managed to get her to agree to do a Western Blot, which is normally refused if Elisa is negative. the result of the W/B was also negative. What suprised me was the fact that i did not have a print out of the actual bands that they used to come to that conclusion. Instead, all i had was the pathology report with the word Negative next to the test names. I have, of course made a request to see said bands in black and white.
I was also tested for McArdles disease(negative). I have even asked if i can have some Doxycycline to try and force a herx or something(yep, you guessed it, the answer was no) apparently, my situation does not warrent such drastic measures. All these negative results leaves me doubting myself................but then i look at all the research and information i have, and there is always a contradiction to what my doctors say.
I am now been referred to a Neurologist as Infectious Disease specialist does not feel that my symptoms are been caused by Lyme. Although she is also getting me a muscle biopsy referral which they will use the PCR method to try and detect Lyme. My doctor is now saying that i MUST stop concentrating so much on the fact that this could be Lyme, and look outside the box, so to speak.
My arguement has always been this........hello, i was perfectly fine, fit and healthy before i was bitten, i get a flu like illness a week after the bites, then my health begins to get worse gradually, i develope multi systemic symptoms over a period of about 6 months after the bites, and my health has taken a steady decline over the last 5 years. The circumstances fit, the symptoms fit, and yet none of this has anything to do with ANY kind of bacteria that can be carried by any biting blood sucking insect. Been a logical person, seem very strange that any doctor would dismiss my whole situation as something other than Lyme(or co-infection relating to a bite).
I just wish that i had the funds to get my whole body tested to try and find whatever it is in my body that is causing all my symptoms.
I do have a LLMD on the side lines, i am just going to have to raise as much cash as i can. I am just hoping that one day, i will have a test done that might accidently pick up something. Until then, i am been forced to deal with doctors who i am trying to educate, but who do not want to take notice.
I now realise that there may be certain organisations that are still in the dark ages concerning diagnosing, testing and treating Lyme(and co-infections) and that there are protocols set out that seriously endanger peoples lives.
My apologies if this post seems a little harsh. Frustration just doesnt come close.
Thanks for reading guys n gals.