hic svnt leones qvoqve

6/2/11

After five years of suffering through debilitating fatigue, muscle pain and severe balance issues, my dad – who’d seen every doctor from the Bay Area to the Mayo Clinic – finally had an answer: he has chronic, tertiary, long-term Lyme Disease. Sitting down to research Lyme, I immediately understood it to reside in this part of the world:

LenoxGlobeDracones(bl).jpg

Yes, that is the original copper globe that has the phrase “HC SVNT DRACONES”, or “here be dragons”. Also to be found on that vast savannah is chronic-fatigue syndrome, fibromyalgia, XMRV and a host of other beasts that guarantee two things: a lot of human suffering, and a lot of other people telling them it’s all in their heads. These are the crazy diseases that inevitably become political, with patients crying out for a cure, scientists finding no disease, and government taking sides.

In sober moments, you can see both sides of the tale. Take my dad, a formerly more-than-healthy, robust symphony conductor destined to live (like all conductors with their upper-body aerobics) into ripe old age. Then, without much warning, take away his ability to balance long enough to cross the room, and then put him in bed for two days for expending the energy to rake leaves. He tests positive for Lyme Disease, and the symptoms match. The treatment? Broad-spectrum antibiotics.

Now take a bunch of doctors, who have tested the efficacy of antibiotics on long-term Lyme sufferers, and can’t reach consensus. And who’s to say it’s actually Lyme? It could be the combination of 17 other things nobody has tested for. And just because someone wants a Rocephin/Cipro/Doxycycline smoothie, doesn’t mean they can have one. Besides, didn’t tests show that the auto-immune effects of Lyme Disease continue to plague patients long after the original bacteria has been killed?

There have been reports that antibiotics can put a real dent in this thing, and for my dad’s sake, I hope so. Perhaps some of you have suffered from a phantom disease as well, and know the profound, heartbreaking relief of somebody telling you “this is real, and this is how we’re going to fix it.”

I dunno, we can deal with vagueness and uncertainty well enough in other aspects of our lives – hell, the mere act of talk therapy and anti-depressants amounts to nothing more than a crapshoot, and in most cases, it’s close enough for jazz. But when you’ve got something that adversely affects your day-to-day life, and many professionals aren’t even sure your affliction exists, you aren’t just in the land of dragons, I’d say you’re not far from Hell.

10 thoughts on “hic svnt leones qvoqve

  1. LFMD

    Sorry to hear about your dad. Hope he feels better soon.
    Same kind of situation happened with my mom. . . she had undiagnosed Lyme for years and was in horrible shape (fatigue, Bell’s Palsy, etc.) before she received the proper diagnosis.

    Reply
  2. jersey

    Sorry to hear that. My mom was diagnosed with MS about five years ago. Bad times. Terrible disease.
    A great friend, father of four, terrific athlete, was diagnosed with ALS last summer. Life sucks sometimes.

    Reply
  3. Joanna

    About a year ago, I said I was not ever going to sell my snake oil on this blog again, but I just can’t restrain myself. I had debilitating symptoms that my doctor wouldn’t acknowledge and turned instead to an integrative practice in Chapel Hill – actual MDs and nurse practitioners, but far more open to alternative approaches than most. I started improving within about 2 weeks of following my NP’s advice and still return to her suggestions when I start to feel run down.
    Megan, maybe your symptoms are caused by stress (maybe not), but that doesn’t mean help is not available to you. There are a couple of amino acid supplements that have been very restorative to me and that I’ve shared with friends when they were in times of stress. Check out Seriphos http://www.vitacost.com/InterPlexus-Seriphos?bv=product-_-4595-_-RLP-_-16843-_-image_link&pd_section=pr (I just take two before bed) and Adrecor http://www.neuroformulas.com/products/AdreCor.html in the morning. I’d be happy to share other suggestions, books, etc. I hope you find a way to better health!
    Ian, I’m so very sorry about your dad.

    Reply
  4. Lee

    Megan, I so hear you. Not only have I been dealing with Thoracic Outlet Syndrome since 1999 – just calling something a syndrome, to me, means it’s “in my head”, but also have been unable to eat wheat for about the same amount of time. I get sooo sick- like the flu- and always turns into a sinus infection and the whole thing knocks me out for about a month. My endocrinologist says he sees about 10 people a week with the exact same symptoms and thinks we’ll figure it out by the time I’m in “the home”- maybe 25 years from now. Until then, I just feel exhausted all the time, taking my nerve blocking pills, and feeling like a freak. it does suck.
    And Ian, my mom had the exact same thing happen when we were at UNC and was finally diagnosed with the Parvo virus. She was one of 5 people in the US at the time and talk about being treated like a nut. Finally got the right drugs and got better for a while.
    Hope your dad does get better and soon!

    Reply
  5. Megan

    Thanks for the links, Joanna. I’m open to suggestions at this point and may look into an integrative practice after this round of tests is over. And Lee, thanks for your story. It’s good to know I’m not the only one who feels like a freak.

    Reply
  6. Ian

    Joanna, you are always welcome to share any healing ideas you have – I certainly don’t consider alternative meds to be snake oil, and I doubt anybody else on here wants to hear less options…

    Reply
  7. Caitlin

    The thing is, there are major problems with long term antibiotic treatment, especially IV treatment. Life threatening complications such as bloodstream infections, blood clots that can cause damage to the lungs or even strokes. selection of extremely drug-resistant bacteria that go on to cause infections that are very hard to treat, terrible c diff infections as a consequence of wiping out all the normal gut bacteria, and so on. There’s an important reason not to do long term antibiotics, because the treatment has potential to cause serious harm. I think the harms of long term antibiotic therapy often get overlooked.
    It doesn’t surprise me that people who get IV antibiotics for various chronic conditions feel better. People who get IV placebos also feel better. Something’s being done, something invasive and expensive, and visible. Someone’s paying attention. Offering hope. Running tests. Modifying the treatment. This has got to encourage people and help them feel better. The placebo effect can be a powerful force for good and for healing. Antibiotics are dangerous placebos, though.

    Reply
  8. Eric G

    My mom died before her doctors ever figured out what was wrong with her. She clearly had some sort of Alzheimer’s-type problem, but even in the weeks before her death, there were still doctors who thought it might be some sort of psychiatric retreat from the world that wasn’t caused by a physical disease. I choose to believe that it was an early-onset dementia that was aggravated by her poor physical health. It may have been Alzheimer’s. We’ll never know. I’m not really angry about it, but it would have been comforting for her treatment team to arrive at some sort of consensus during her life.

    Reply

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