Sorry to hear of your difficulties... I know how frustrating it is to not get a diagnosis and have to fight for one. It took doctors more than 20 years and them almost killing me by changing my medication (resulting in a 2 week "vacation" in the hospital) for them to take me seriously and give me a "partial" diagnosis. I hope that your condition improves. Lyme is horrible, although they have made great advances in treatment in the past few years.
Best,
Alfred
Hi Al,
Wow!!! I can't believe that I encountered another Lyme patient here!
Apparently, you have a less severe case of it. You appear to be more functional than I am, although I don't know much about you. You may be familiar with the old saying: "There are different degrees of Lyme". I was bedridden when I was between the ages of 22 and 33. That's how bad my particular case of Lyme Disease is.
I have a cousin who is a nurse. She is the one who actually diagnosed me. Back in 1990, when I was 22 years old, and when my (numerous) doctors couldn't figure out what the hell was wrong with me, she half-jokingly suggested that I be checked/tested for Lyme Disease. It turned out that she was right.
My Lyme blood tests came back positive, but that doesn't mean much because, to this day, Lyme Disease is
still a "clinical diagnosis" (unfortunately). You have to take the Lyme blood test results with a grain of salt. The blood test results are just one piece in a giant jigsaw puzzle, and 98% of the pieces to that puzzle are missing. This is what it is like for a doctor to diagnose Lyme Disease. My family doctor at that time tentatively diagnosed me as having Lyme Disease. And he sent me to a rheumatologist who confirmed the diagnosis. That was 25 years ago. And the rest is
history.
I see that you also
had to deal with doctor ignorance, which is very common among Lyme patients. I
had to deal with some of that. But, fortunately, in my case, the ignorance wasn't that bad. My family doctor at that time (who is now retired) was fairly open-minded. And he also
had another Lyme patient then. We both got sick at the same time (
Spring of 1990), and we both presented him with similar symptoms. He couldn't figure out what the hell was wrong with either one of us. We were
his first Lyme patients. He
had never seen a case of Lyme Disease before.
Unfortunately, most of the specialists I saw weren't as open-minded as my family doctor. I
had to deal with an incomprehensible amount of ignorance from them. And many of them were openly hostile to me. They routinely hurled insults at me. I can't tell you how many fights I
had with them (I lost count
). Many of my specialist visits often degenerated into screaming matches, with the doctor and myself literally yelling and screaming at each other.
I am not aware of any advances in Lyme treatment that were made recently. But I have been "out of the loop" for a while. I was a Lyme Disease Foundation (LDF) member, but they are now defunct, and they no longer send out newsletters.
I
hope your condition improves too.
Meepzorp