Wednesday, April 11, 2007

A very surreal anniversary

It was about a year ago this month that I was bit by the tick that gave me Lyme Disease (and possibly a second parasitic infection). Even though I've had plenty of time to process it, I still can't believe I got this disease, particularly from a teeny weeny bug barely big enough to see that bit me in my own backyard.

Having this experience has been surreal in so many ways. I have always been fortunate in having good health, and my experiences with the medical system had, for the most part, been sporadic -- isolated things, like strep throat, that could be dealt with quickly. But Lyme Disease has eroded my faith in the medical establishment. The medical establishment told me my symptoms would clear up in a month with a low dose of doxycycline, and they didn't. My internist wouldn't even give me a follow-up appointment to discuss the fact that I, a 41-yr-old person with no other medical conditions, still had characteristic symptoms of Lyme, like shooting joint pain, that I had never had before. Perhaps I was naive, raised on Marcus Welby and Medical Center, but the fact that so many doctors could turn their backs on so many patients, that they could say "it's all in your head" and refuse to treat people in obvious suffering has been disillusioning.

It's not just feeling disappointed in people who were supposed to help me but refused to. It's also feeling at sea, not knowing where to go for real information or sensible advice. I know what I feel, and I don't feel like I did, but after a year of feeling crappy, I'm starting to forget what it was like to feel like me. I think I'm pursuing a sensible course of treatment with a good doctor who knows a lot about tick-borne diseases, but a little part of me is bugged by the fact that so many other doctors, considered "experts" in infectious diseases, pooh-pooh what I'm going through and suggest that the treatment is unnecessary. Maybe I'm just getting old fast. Maybe I'm doing more harm than good taking antibiotics. Maybe it is all in my head.

And then there is the fringe of Lyme patients (I'll admit it; I think of them as the "lyme nuts"). People who turn to remedies that strike me as bizarre, like $3000 machines that supposedly beam certain radio frequencies that kill the spirochetes or who have way-out conspiracy theories (e.g. Lyme was created by evil scientists working for our government who released the germs to harm us all). Do I need to remove all dental fillings made of amalgam and replace them with pure gold? What about coffee enemas? (Nope, I didn't make that one up. Didn't try it, either. I have a fondness for hazelnut coffee, and I don't think my ass should smell like praline.) The concept of the "herx", or Jarisch-Herkheimer reaction, a phenomenon well-documented in other spirochetal illness and sworn to by many Lyme patients. Is herxing for real? Or is it a quasireligious concept, almost a hazing ritual, the fictional notion that you have to suffer in order to feel better? And how can I tell the difference between the fringe and the genuine anecdotal experience of fellow patients?

I saw my doctor last week and he decided to shift course a little. He's always wondered if I had a second tick-borne infection that is co-existing with the Lyme, and we decided it's time to try treating that. I think he may be on to something, but I guess we'll have to see. The new meds are knocking me on my ass, though, so if I seem dopey, or absent, or absent-minded, hang with me. I'm hoping that I won't be observing this anniversary ever again.

30 comments:

Lady Wyvern said...

See, this is why I dont trust doctors
I am a retired vet and when we treat a dog for Lyme, we ALWAYS presumme there is a secondary infection and treat it.
Doxi is the normal course, but a lot of vets use Clavimox for about 2 months, its less harsh on the system then Doxi or the cyclenes.
Reason is that people will not continue to "try" this or that on their pets. at some point they get pissy. However, as people, we forget that our doctors are no different then our vets and sometimes need a reminder that we don't wish to follow them blindly down the primrose path
I had a friend who had Lyme, for 2 years he battled with the doctors, finally one listened, and 8 weeks of clavimox all symtoms were gone. that was 5 years ago.
Remember, being educated and willing to butt heads with the doctors and stand firm that you are not an idiot and they are not a diety is key to getting healthy
My best to you!

Erika said...

Carol, I'm sorry that you have had to deal with this Lyme journey and that the doctors don't have satisfying answers for you. I think that the medical establishment struggles with saying "I don't know", to our detriment.

I was just at a conference about global epidemics. The impact of diseases carried by tiny creatures , at both an individual and societal level, is underestimated by many unless they have been personally impacted, as you have been. The bubonic plague, also carried by a little bug, caused enormous societal and social change via it's impact on the population of Europe in the middle ages. It is amazing stuff to think about.

I hope your journey with lyme will end soon, and that your new meds work to heal your body.

In the meantime, I greatly enjoy your blog posts, and appreciate the no-bull reviews.

--Erika

gabriella said...

hey carol - hang in there!! (not very comforting, i know, but it's all i got from a few hundred miles away.) feel free to blog out any frustration (i, for one, just love to pieces the sarcasm and humor that you can pull out of any situation - your little grace's temper tantrum from a little while back being case in point.) i can't imagine how exhausting and painful lyme must be, and i too hope you won't have to observe the unnerving anniversary ever, ever again.

on a completely unrelated note: i'm looking forward to your upcoming laceweight posting over at black bunny fibers - i am in the market for something gorgeous with which to design a stole. you're my gal. (photos of the recently completed BBF sock yarn stole, by the by, are on my blog today - not blocked yet but man those colors are just killer!!)

take care of yourself and very best wishes of strength and wisecracking...
~gabriella

Cara said...

I'm sorry that you've lost some faith, but most of all that you're not feeling better. I so hope you find a working solution soon.

mindy said...

Hugs, and hoping that this time next year it'll just be a dim memory.

diane said...

echoing Mindy's sentiments. i know what it is to not feel like yourself for a good while. in time, you'll get better and will be relieved when you realize you're "back".

Wily Jeneric said...

Oh, I do hope you're on the mend, too. The co-infections can be nasty - that was my husband's experience. Once that was treated, he felt great. Unfortunately, his doctor kept telling him he was sick, and he wasn't!

Cheesehead With Sticks said...

It is so frustrating to be told you are not right about how you are feeling. I hope this gets to the bottom of it and you are feeling better fairly soon.

I have learned after 2 trips to the ER and 3 weeks of passing out in the shower because of complications with a miscarriage, and nobody listening to until my iron levels were down to a FIVE, that sometimes you have to fight hard and fight loud to be heard.

Lynne E. said...

Carol, once I learned from your blog that you had Lyme Disease, all was forgiven regarding the limited offerings in your Etsy Black Bunny Fibers shop. (Happily, I was able to take advantage of the latest shop update.) Thank goodness that (1) you have located a doctor who understands something about the disease, and (2) Lyme has been around for long enough now that such doctors exist. The very real symptoms do make patients appear to be malingerers or hypochondriacs.

Marilyn said...

I worry about you all the time. And I completely understand your mistrust of doctors. Talk to me sometime about what I went through with Jimmy. You have to be a bulldog, but when you're ill, it's damned hard to muster up the strength. As far as I'm concerned, doctors provide a service for which they are handsomely paid. Therefore, I am entitled to and demand answers to my questions. I learned that much in the past five years.

I get better answers from my cable service than I have from doctors. And that's saying something.

Sarah said...

Don't you love these "anniversaries?"

I myself have 3. 3. Im 23. I have 3. I don't want these 3. Someone can take them.

The first one is what landed me in my life today. Good Friday, 2000. Nothing really too good about it. It was the day, after a week of pain, talking and arguing with doctors, yelling and agony, that they "finally" figured out the pain. Or, rather, it figured itself out. My appendix ruptured inside my body. It had been dripping in my system the entire week. God damned doctors "couldn't find it". Insurance didnt want to cover a cat scan. I was one sick pup. Gangrene, perotinitis.

My second anniversary was directly related to this. My diagnosis of Fibromyalgia, February of 2004. The doctors said my body just pretty much retaliated from being too sick. I've been pretty sick ever since then. Lost of pills, lots of doctors. I'm doing better, but it's still here.

My third anniversary is no where directly related to either, but it was given to me by some asshole on Halloween, 2005. He decided he wanted to have sex with me, I didn't want too. I think you can put two and two together. But good things have actually come out of this, believe it or not. Really good things. It pissed me off so much I became an activist, and I helped to found a pro-choice group on campus. Now we are starting a women's crisis center, etc.

Wow, you gonna send me a bill for therapy now? ;-)

The "bad" anniversaries are always difficult in relation to the happy ones.. babies, weddings, etc. And some people have more of them than others. I like to believe that everything always happens for a reason, even though that might not always be true.. but that might be a good thing to think, so Im going to think it. It all shapes and forms who we are, and we woudln't be in the place we are if it wasn't for that. I know, personally, I wouldn't give that up for the world.

Carrie said...

I am the first person to find another doctor when the one I'm seeing pooh-pooh's me. I hate that. I don't know about everyone, but I don't go to the doctor unless I feel really, really bad. The Lyme's disease sucks, and is real and serious, so people who have sworn to provide medical service should get with the damned program. Good luck feeling better. I'll be sending prayers your way!

Diane In Chico, CA said...

Good luck on your long road! I read Amy Tan's book, "The Opposite of Fate: Memories of a Writing Life". She went through a long period of undiagnosed Lyme's disease. Her experiences left her feeling much like you, I think.

Angie said...

That really blows :( I never really recovered after I had mono back in 2002, but not a single doctor will suggest anything more than regular exercise and more sleeep. I can get by, but it really is devastating to compare how I used to feel to how I feel now :(

Mel said...

I spent 4.5 years with an infectious disease specialist in training. Oh do I know how they can be. He told me that my fibromyalgia pain was just because I needed to lose weight - never mind the fact that it was the same when I first met him and weighed much less, and never mind that the weight only went on because I was with him.

When I diagnose Lyme or deal with cases that have a history of testing positive for it, I always tell the owners that it cannot be considered curable. You may be able to get it under control, but I see Lyme-related illness show up several years after the initial diagnosis. I know that in some sense that may not be much consolation, but anyone who tells you it's gone needs some sense slapped into them.

Cetta said...

As someone with autoimmune problems (Crohn's, Sjogren's, Fibromyalgia), I can relate to what you've said about feeling crazy, self-doubt, doubting doctors, and thinking other people's extreme takes on "cures" are insane.

Just know that only YOU knows what's best for you. If I've learned anything in my own journey, it's that you have to fight for yourself, and find a doc who allows you to disagree with him/her.

Be well!

Sarah said...

I hope this newest course of treatment is more helpful for you. While I do not have Lyme disease, I do understand the kind of frustrations you've been enduring. It looks like you're doing a pretty good job coping with it all and the changes it creates. I hope you get to remember what well feels like, and soon.

Marianne said...

I am so glad that my doctor treated me well after I was bit by a tick 3 years ago ! I discovered a big red ring on my leg that got bigger every day, since I hadn't seen that I was bitten by a tick I didn't react immediately. I went to see him after 2 weeks and he subscribed medicines for me immediately. Luckily I didn't have any more symptoms of Lyme after that. When I read about all the troubles and pains you had I feel so sorry for you ! Please fight against this disease or it will hunt you for the rest of you life.
I hope the new medicines will help you win the fight !
Wishing you the best.

Liz K. said...

I can imagine the worst part is not feeling like yourself again. Wondering if you'll ever feel like you used to. Wondering if this is what feels like you now. You know, a new normal.

I truly hope not, and have my fingers and toes crossed for your new course of treatment.

ccr in MA said...

Wow, all I can say is, good luck with everything, and may you never celebrate this anniversary again!

Deborah C. said...

A lousy anniversary indeed. I had Lyme undetected for 6 years and it did all kinds of damage, which I never did recover from. I have now been diagnosed with Lupus, and it's one damn thing after another, all of which leads me to hate doctors. They tend to pooh-pooh symptoms until you literally scream at them that something is wrong and then they have an "a-ha" moment - it's so frustrating! Anyway, I'm keeping my fingers crossed for you to get over this soon!

Stuntmother said...

A lurker wishes you a full recovery, and the arrival of a day, distant or soon, when this will be only a memory of a trying year, and a testament to your courage in dealing with adversity.

Your courage is inspiring.

rho said...

My secondary infection was babesosis (probably spelled wrong) with the Lyme dx. Not fun... then after that I had a bout of mono that went on and on with a couple of relapses and liver involvement followed by fibromyalgia and Ulcerative Colitis-- somehow I think that the last two had lots to do with having had the previous ones. Not that any experts will listen to that idea.

Phoe said...

Ugh. I truly hope that your new treatment works for you. I've got an anniversary like that too... fibromyalgia and Sjogren's syndrome. I have never been so disheartened by anything my illness has caused than I am by the doctors I have had to deal with. Best of luck.

Lynn S. said...

I have anniversaries, too, in fact one (my first really stupid medically caused heart attack) is next week. My cousin has Lyme, really badly, and her father is a doctor. I'd always heard about "herx" reactions but only from alternative practitioners so thought it wasn't medically recognized, but he says that it's well-known in the medical community. He is NOT an alternative-supporting guy, either. Herx is real. take care of yourself! Be glad you caught it early! My cousin had been infected for decades before she was diagnosed correctly.

Elizabeth said...

Chronic pain sucks ass. That is all there is to it. I deal with it for other medical reasons (not Lyme) and can relate to the paradigm that some medical "professionals" have when it comes to living with constant pain. I'm pretty sure that it's not in my head... as much as I would like it to be! Thanks for your wonderful blog- you have such a nice perspective on so many things. The foul language is a plus. All that, and you are a good fucking knitter.

Janet said...

Your comments about your struggles with Lyme disease echo the experiences of my sister and some of my nieces who have Lyme. So difficult to find a doctor and systematic treatment.

Anonymous said...

Decaf or regular?

Liz in NoWhere PA

Carol said...

I would think you'd want regular, if your goal was to, um, move things along.

Me said...

Hello,
I'm a lurker to your blog...it's always a fantastic read.

I'm sorry to hear about your health. I haven't had to deal with anything too serious so I cannot say that I can relate. However, I have seen my share of doctors that just want to shoo me out of their office...or try to push medication that I do not need...or who want to charge me ridiculous prices for treatments that I never needed.

I hope you will not have to observe this anniversary again.

Sincerely,
Linda