Monday, July 6, 2009

Nothing new

There are a few people I see semi-regularly (hair stylist, massage therapist, etc.) who without fail ask how I'm doing regarding my Lyme disease. And the answer is always the same--it sucks. The individual symptoms may vary (pain, malaise, brain fog, insomnia, exhaustion, nausea), but it all adds up to "I'm still sick."

I know that these people ask about my health with the best intentions. And I appreciate that they care. It's just that sometimes there's this shock, kind of like "How can you not be well yet? It's been ages!" And I know that it comes from a caring place, so I'm not annoyed with the person I'm talking to.

I'm annoyed with the disease. While there are many diseases that require prolonged treatment--no one would be surprised if I were undergoing months or years of cancer treatment--Lyme isn't well known or understood amongst the general public (or most doctors, for that matter).

So month after month, I have to keep explaining that I'm not any better...yet. Or that I've improved from 20% of normal to 25% of normal, which doesn't really sound like much. And because of the controversial nature of Lyme treatment, I feel unreasonably defensive about my treatment choices. So I explain that advanced cases of Lyme require months or years of antibiotic treatment, and that it's going to take a while longer before I get well. And, yes, I'm confident in my diagnosis and my doctor, and I think we're pursuing the correct treatment course.

This defensiveness is my problem, not those with whom I interact. So it's something that I need to deal with and work on. At the core of it all, I think, is that every time someone is surprised that I'm not doing better, I'm reminded of how long it's been. And how much more time and effort and suffering and money is going to be involved before I'm anywhere close to "normal."

Self-pity isn't pretty, so I'll only indulge a little here. But, dammit, I've been sick for over a year and a half. It took nine months to get diagnosed properly. I've been on medication for ten months. The side effects suck, and the die-off reactions suck. I wonder if it'll ever stop. If I'll ever get my life back. I wonder how many years this disease will steal from me. I wonder what permanent damage will be left if I ever achieve remission.

And then I have to also realize that this illness has taught me a lot. While I've lost some opportunities, I've gained others. So, you know, silver lining and blah blah blah. Just to balance the scales and to let you know that I'm not always such a downer. With that in mind, I leave you with a joke:
A husband comes home to his wife, who has Lyme disease. He hands her a bouquet of flowers and says, "Honey, let's go upstairs and make love."

His wife asks, "Well, which one is it? I can't do both!"

That one was so funny I'll give you another for free:
A man with Lyme disease was bragging to his friends about how he got lucky the night before. "Yeah, man," he said, "I was able to find my car in the parking lot!"

Insert laugh track here. And finally, one I made up:
Q: How many Lymies does it take to screw in a light bulb?
A: (long pause) What did you say about the refrigerator? I'm confused.


  1. Found your blog through google... I may have Lyme.. my Western blog was positive on band 41 and 23. So I guess 41 is generic but 23 suggests I have it. I'd love to have a CD57 done but don't know if any docs here in Utah will do one.

    Anyway I wish you the best, I know it takes a long time to recover. My new doc who is an MD and also does holistics and is open to Lyme, thinks that I have Candida mainly, and maybe Lyme as well, he's treating me for both. I'm glad I finally found a doctor who will consider it, even if he's an hour away.

  2. Wow . :( I feel so bad for you. You have a great informative blog, good info and interesting to read.

    But all this lyme crap makes me feel even worse about myself now ( i got positive WB a month ago) . (yeah I am that selfish)

    I haven't even started any serious treatment yet, I cannot find any LLMD in MA, the one in NYC charges arm and a leg ( your $110 appt sounds great - that guys charges $900, and $425 for each subsequent, - f... it) - I still have to wait for 2 more month till my appt comes but I am thinking just to ditch him and self treat -will save crap load of money even if I will buying all abx out of pocket

    And to suffer trough all this crap for years? - I feel like I should just quit right now instead of prolonging the torture

  3. Max--I understand how you must be feeling right now. If you are looking for a doctor in MA, I'd check out They have a forum with a section for people seeking doctors.

    Also, to address the cost issue, I have to clarify. My LLMD charges $400/hour. The first appointment is usually 60 - 90 minutes long. Plus then I had to pay for testing and other stuff.

    After that, my appointments are usually 30 minutes long = $200. Then I take the bill and submit it to my insurance company. After I have met the deductible for the year, they cover a portion of the cost. Since my LLMD is not a participating provider, it usually works out that they reimburse me $90 for the $200 visit. So after the deductible has been met, my visits usually end up costing $110 *after* insurance.

    Luckily, my insurance will pay for some of my prescriptions and a small portion of my labs. Still, it's expensive and it sucks. However, I wouldn't trade the expertise of my LLMD.

    Despite how much this disease sucks, he's the first medical professional who has given me hope that I could get better.

    I understand not wanting to deal with this crap for years. There are days when I wonder if it's worth it. But if I don't try everything before giving up, well, that's just not me. :)

    So take heart. Visit Lymenet. Read up as much as you can. Find a support system. And feel free to include me as a part of it. :)