It started with a Twitter chat about different thyroid meds. Then we were emailing about hypothyroid. It morphed into conversations about our families, our hometowns, and the other stuff of life, but it always came back to health stuff. And then the other day Miss Diagnoses emailed me a transcript of an interesting talk about tick-borne illnesses and how their symptoms often masquerade as autoimmune diseases. Hmm. There’s something familiar about that!
I read the 21 page transcript, then I visited the doctor’s web site. I ordered his book from my library system and will pick it up next week when it arrives at my local branch. I considered trying to visit this doctor, without insurance, 5 hours away. And then I checked myself. How many times have I traveled down a similar path?
There are so many things that could be the cause of my health problems. There are so many things that could be contributing factors. It’s hard to know which to pursue. But every time I see a potential answer to the big question, I grab hold of it like a life jacket in the middle of the ocean. Then I remember that there’s a boat nearby. I’m just not sure if I can manage to swim to it, or if it might have a hole in the bottom. Because if I see the wrong infectious disease specialist, I might be told I don’t have any infectious diseases even though I do. Or I might be told I need treatment that I don’t need. Or I might be given antibiotics for 1 month when I really need them for 1 year.
There was a time when I believed, as so many people still do believe, that if you get sick, you see a doctor, they find the problem, they treat you, and you get better. But I know better now. I have literally dozens of stories to disprove that neat little theory. Take last fall. I saw a sleep doctor who said there was nothing he could do to help me. He gave me a referral to a sleep psychologist. Great. Then I saw someone else in his practice (the doctor I’d originally been trying to see anyway!) He ordered tests that the first doctor didn’t even suggest. He suggested a medication change that the first doctor ignored. I ended up with a sleep apnea diagnosis that the first doctor never considered. And he prescribed a CPAP machine that I was clearly never going to get from the first doctor. The CPAP has made a huge difference for me. I sleep so much better, and I feel more clear-headed. Some nights I haven’t used it all night for one reason or another (an ear infection, congestion, a weird dream that caused me to take it off in my sleep) and there’s a noticeable difference the next day not only in my fatigue and energy levels, but also in the clarity of my thinking. More than that, if untreated, sleep apnea can be dangerous. One doctor diagnosed it. Another never considered it. And that was in the same practice.
I can give similar stories in the fields of endocrinology, rheumatology, internal medicine, physical therapy, psychology, dentistry, orthopedics, and probably others that I’m not thinking of right now. So why should infectious disease or any other specialty be any different?
And yet I know that I need to pursue this. And visiting an supposed-expert 5 hours away for many hundreds of dollars just isn’t the most realistic approach. I need to find someone local, and I really won’t know if they’re any good until I try them. And even then, I don’t know enough about the field to be sure. But I’ll try, because what other option is there? Can I really risk leaving this stone unturned?
I started a list tonight of new paths to pursue, new potential pieces of my health puzzle. Maybe this isn’t one of them. But there’s no way to know until I try.
If you know of a great infectious disease specialist in Boston, please let me know in the comments or email me at msrants at gmail dot com ! And I’d love to know about your experiences with infectious disease diagnoses and research.
Chronic Rants 
I’ve met both great and awful doctors since my diagnosis – and seeing a new one is like playing the lottary. I’ve also read so many different explanations for my conditions that it’s enough to make your head spin. From diet, to genetics, viral infections, psycho-social factors and environmental factors everything could be the key. In the end it’s probably a combination of some of these. But I think we should keep digging for our own sake, keeping in mind that the answer is probably different for each one of us.
You’re right, escharae, finding a good doctor is like playing the lottery, but more important. I just wish there was a way to improve my odds of winning!
I just read about tick borne illnesses but from a different source – labrador forum. I too sometimes think that my illnesses are down to something else. I am a ‘difficult patient’ the Doctors never really know what to give me now. They wish they could help more but some drugs that might help I can’t take.
I think you have the added stress of having to find a competent Dr in that field first before anything else. Whereas all I do is ask for a referral to a clinic at the hospital then wait for appt to turn up. I think I told you before that I have a choice of hospitals too.
I hope you find a good Dr and that maybe, hopefully this is a field of medicine that can help you.
Hugs x
Lorna, you’re right to watch out for ticks on your dog. Do you use Frontline or one of the other treatments? As for finding a doctor, my primary care doc would probably recommend someone, but who knows if they’d be any good? I’d rather find my own person so I’m more confident. I wonder how many of us have one of these infections and don’t know it?
Yes I use Advocate at the vets with a wormer pill. We have lots of slugs so have to worry about heartworm .
It’s sad how true this is for all of us. A sleep study should be one of the first things done for those of us who report poor sleep and fatigue, yet it often ends up being something we have to ask for (as I did). Blood work, too, is often over-looked, especially the tests for things like Lyme. Unless you live in the NE the answer you get is simply “we don’t have that here, you don’t need to worry”. I hate how doctors dismiss things like that.
I’ve been down the road so many times of thinking that there surely has to be a better answer, and thinking I might have an idea of what that answer may be.
On another note, I’d really love to interview you for the Fibro Warrior feature on my blog and share your story. If you’d be interested, please email me at drunkitty2000@gmail.com
Wow, Julie, it never occurred to me that you’d have to convince a doctor to test for Lyme. Since I live in Massachusetts, they can’t say “we don’t have that here.” My issue is just the inaccuracy of the tests. I hope you’ve found ways to get the tests that you need!
I’m so flattered that you want to interview me! Thanks! I’ll email you 🙂