So, I’ve never yet told the story of how I got my Lyme disease diagnosis. And I feel like this is possibly the most important part of the story to share, because it can serve as an example of how to get things done, medically–and an example of when you should fire your doctor.
So, I had been having weird medical problems, one after another, for about eight years by this point, and I had long been of the opinion that I had some sort of underlying medical condition that was causing them. It seemed like every time one thing would clear up–bad back, bad knees, weird wrist pain, hip pain–something else would show up. I was sent to physical therapy over and over, none of which ever helped–and sometimes it made it worse. Then, after several months of pain, the problem would inexplicably go away–only to be replaced by something else, a problem in some other joint or muscle. It was maddening.
So off and on, I had been googling this, that, and the other to figure out what this underlying medical condition might be. I found a number of things that sounded like a LOT of my symptoms–progesterone deficiency, hypothyroid (both of which it turns out I might ALSO have)–but not all the crazy joint stuff. Finally, one of my friends whose daughter was having crazy medical issues too sent me a list of symptoms she had found of Lyme disease that seemed to fit her daughter’s problems–and it fit mine, too.
Now it was time to get to work. I researched Lyme disease like it was my JOB. Discovered it was difficult to get a good diagnosis, because many doctors rely on the ELISA test, which is terrible at actually detecting Lyme. I had had an ELISA test before, and it had come back negative. The diagnosis and treatment of Lyme disease is a very tricky and contentious subject amongst doctors. So I did my research and got myself all ready to see my family doctor (I had wanted to go straight to a Lyme specialist, but Mom persuaded me to try my GP first). I had printouts, the pamphlet linked to above, lists of my symptoms, everything.
I get in there, and my doctor was SO dismissive. I tried to hand her the checklist from the pamphlet with the DOZENS of symptoms I was experiencing, and she wouldn’t take it. She interrupted me, talked over me, simply wouldn’t listen at all. She agreed to let me have a second ELISA test, but told me when pressed that if it came back negative she would assume I didn’t have Lyme. Instead, she claimed that most of my symptoms were caused by my depression (her go-to solution, and one that didn’t require her to do anything to help me), and when I kept complaining about my symptoms, claimed that I probably had fibromyalgia–a condition I had already researched and dismissed as not matching my symptoms. She even did a modified fibromyalgia test on me, which involves pinching different touchpoints on the patient’s body, and if more than a certain number of them are painful, it’s fibromyalgia. Something like three of the eight actually hurt; a couple more were like, “Well, you’re pinching me, so of course it hurts?” But she was like, “You have five out of eight pressure points! You probably have fibromyalgia!”
Sure. Cause THAT’s how that works.
I was SO pissed. I felt so dismissed and disrespected, and above all, NOT HELPED. This was really the last straw with this doctor: she had prescribed anti-depressants that came with such terrible symptoms that the government actually warns doctors about prescribing them and had been very unhelpful on other occasions, and I was just done. After this, I switched my GP to a Physician’s Assistant at the same clinic who actually listens to me (miracle of miracles!).
Anyway, Now I needed to find someone who COULD diagnose my Lyme disease. So the first thing I did was look for ILADS doctors. There are two main schools of thought on the diagnosis and treatment of Lyme disease: IDSA and ILADS. ILADS diagnoses more people and continues to treat them as long as they have symptoms, whereas IDSA says that if they give you the 4-6 week antibiotic treatment and you continue to have symptoms, they must be psychosomatic.
So you can understand why I went with ILADS.
Because Lyme disease is such a hot-button topic among doctors, a lot of doctors don’t advertise that they’re ILADS docs. So the best way to find a doc is through ILADS.org’s referral system. You tell them where you live, and they send you the contact info for ILADS doctors in your area. I also got the name of another local doctor who wasn’t registered with them but who followed their basic guidelines. Unfortunately, he didn’t take insurance: a common problem with ILADS docs. Of the other three doctors in the general area whom ILADS directed me to, one didn’t take insurance and one didn’t treat chronic Lyme. So I ended up going to a Lyme doctor who was an hour and a half drive away.
HOWEVER: everything turned out well. He ordered me a wide-spectrum western blot test, which is far more accurate than an ELISA, and also assured me that even if it didn’t come back positive, he could still try me on the treatment and see if it helped. It came back “indeterminate,” which he, looking at the markers, called a positive result. I had to pay out of pocket for this test and for some intravenous treatments he wanted me to take, but in the end: it worked. As far as I can tell, my Lyme symptoms have gone away.
Which doesn’t mean I actually feel better–see hypothyroidism, above–but I’ll get to that in another post.
Basically, I hope that this information helps other people who might have Lyme disease and are trying to navigate the difficult waters of diagnosis and treatment–and also people who think they may need to fire their doctors, but again, I’ll give that topic a post all its own.
Please contact me if you want more information on any of these subjects–I’d be glad to help!