Monday, July 17, 2006

Naivete crashes against the rocks of reality

When I first was diagnosed with Lyme Disease, I optimistically, naively, assumed that having caught this thing early and gotten antibiotics, I'd finish taking my medicine and be done with it.

Not so fast.

What I have now learned is that Lyme is an incredibly frustrating and confusing disease to get. Not the least of which because there is so much disagreement about it and so much that is simply not known for sure.

Everyone agrees that ticks carry a variety of disease that can be transmitted to humans, of which Lyme is merely one (and the most well-known). Everyone agrees that an organism called a spirochete is responsible, and that a tick bite can transfer spirochetes to a human. The spirochetes multiply in the human body and cause various symptoms, including fatigue, aches, chills, joint pain and fever. Everyone agrees that certain antibiotics are generally effective in treating at least some cases of Lyme, and that if left untreated, the spirochete will infest the nervous system and may cause a parade of horribles including facial paralysis, arthritis, multiple sclerosis and more.

But here's where the body of conclusive knowledge ends and the frustration begins.

It is very difficult to diagnose Lyme. Lab tests are notoriously unreliable and frequently give false negatives. Why? Not sure. Could be some people are tested too early, before antibodies are made; people who take antibiotics like me may not make enough antibodies to show up; labs may not be sensitive or careful enough; or maybe we just don't know enough to know why there is such a high rate of false negatives. If you get the famous bull's-eye rash (think the Target logo), oval or circular, sometimes with a white center, that is considered a conclusive diagnosis of Lyme. But if you don't get the characteristic rash (and some people don't; estimates range from as high as 70% to as low as 20% of Lyme patients do NOT get the rash) or if you don't see it (if it's on a part of your body you can't see well, like your back, or that is covered with hair, like your back scalp, and the blood tests are negative, you may not get treated quickly enough or at all.

It is also difficult to treat Lyme. There is widespread debate about what it takes to knock out the spirochete. The most conservative say 7 to 10 days of antibiotics; others say 4 to 6 weeks; some say a minimum of 6 weeks of treatment is required because the life span of the spirochete extends for at least a month so you have to treat long enough to be sure you've killed all stages of it. Some say oral antibiotics are enough; others say intravenous are necessary, at least in some cases. Some say 100 mg of Doxycycline twice a day is enough; others say at least 300 to 600 mg per day is the minimum required; some say other drugs are better. Some doctors scoff at Lyme patients, saying it's all in their head and referring them to shrinks if their symptoms last longer than the doctor thinks is reasonable.

As a newly-diagnosed patient, I took my meds but now am seeing additional symptoms crop up. The most troubling of these is joint stiffness, swelling and pain. It may horrify you to know that IT'S AFFECTING MY KNITTING. (It horrifies me, too.) I've never had any of these symptoms before (e.g. a strange creepy-crawly sensation on my skin, like brushing against a spiderweb but there's nothing there; to the point where I've scratched the skin raw in places) and they are well-documented in the Lyme literature so I have to think there's a connection.

My regular internists pretty much have dropped the ball. When I phoned to report additional symptoms, their reaction was to ask for a blood test to make sure I really have Lyme's. Not helpful. (See, for example, the Center for Disease Control website: "Validated laboratory tests can be very helpful but are not generally recommended when a patient has [the classic bull's eye rash]." or WebMD: "If you have symptoms of Lyme disease but test results are negative, treatment should not be delayed. " and "Detecting antibodies to the bacteria that cause Lyme disease does not always mean that the infection is active.") If the test is accurate, it will certainly show antibodies since I had the disease (hence the rash), but it won't tell whether the infection is active and on-going or merely leftover antibodies. If it's not accurate, it'll suggest I don't have Lyme, which I suppose will mean it's all in my head.

So I decided to consult an expert, someone who really knows Lyme, who can tell me if I've been "cured" and these are just residual symptoms, or if I need more treatment. There aren't that many specialists in Lyme, and ones that are considered Lyme-friendly, meaning they won't send you to the men in the clean white coats if you complain of long-term symptoms, are highly sought-after. The first doc I called had a one-year waiting period for new appointments, took no insurance, and charges $750 for the first visit plus over $2000 in required lab tests (only 25% of which might be covered by your insurance, if you're lucky).

I ended up with an appointment with a doc in New Jersey. Here's hoping he understands why a disease that interferes with my knitting MUST BE ERADICATED.

And the sooner the better.


turtlegirl76 said...

Oh no! Not the knitting! I hope this new Doc isn't a wingnut like the other doctors sound. You should absolutely be taken seriously when reporting more symptoms and in need of proper care. Good luck.

Sherry W said...

Urgh- it can be really frustrating. A year wait, but your supposed to be treated right away. I love that one.

Christina said...

Carol, I hope you find a doctor that respects you as a patient and considers every symptom you describe. As someone who has a difficult to diagnose disease (Hashimoto's thyroiditis), I have had doctors run the gammit from claiming I have bipolar disease, lupus and diabetes before discovering the subtle laboratory cues of Hashimoto's. When this all started, I was 16 and didn't know any better and believed the docs and took meds like lithium, glucose suppressors like Medriol, and the like before getting formulas for a fluxing thyroid. Now eight years later, I see how many doctors overlooked so many clues because their own opinions got in the way.

When I was in high school I was friends with a girl who had advanced Lyme before getting treated and she had many symptoms that doctors brushed off as psychological. Some, like you, claimed that she never had the disease, but she was just crazy. There ARE doctors out there that consider your symptoms serious and will take actions to get you (and your knitting) back to normal! It is exhusting to be sick and even more exhusting to not be taken seriously, but there is someone out there who can help you. I hope this doctor in NJ gets you the help you need, but if s/he doesn't, don't give up!!

Carol said...

Thanks, guys! You know something is fucked up in your society when the waiting period for a gun is shorter than the waiting period for a doctor.

jillian said...

That's terrible - there are far too many doctors whose egos get in the way! If this NJ doc doesn't respect you - don't give up. keep seeking treatment!

Anonymous said...

Alway be aggressive with the docs Carol. When I was 19, I went to the hospital emergency room for swelling in my abdomen, and severe pain. I was dismissed by an ER doc as "hysterical." They released me and told me to take some tylenol. I waited over the weekend for my college's health services to open back up and on Monday I walked in and begged to see a doctor. The nurse-midwife-gyno discovered two tumors- yes folks, freaken tumors, on my ovaries, and immediatly sent me to a hospital that specializes in women's health. There, I was diagnosed with two semi-solid ovarian tumors, and one cyst which had ruptured and was making me ill. (I lucked out and everything turned out benign and okay but it still hurt like hell.)

And the jackass ER doc had called me hysterical. I still harbor anger-filled feelings towards that man. I was 19 for goodness sake, 3000 miles away from my parents, and scared- and he called me hysterical.

Point being, if they tell you its all in your head- chances are it isn't. Keep going to different doctors until they give you answers.

Elizabeth said...

Oh Carol, this is infuriating! I'm hoping you'll get some real relief and proper treatment FAST!
(Now, trying to see the area on the back of my knee where my husband pulled a tick off of me a couple weeks ago...)

Franklin said...

Oy vey, lovey - all I can say is I hope they knock out the damn thing quick. I hate to hear of you suffering. :-(

Charity said...

OH, Carol, I'm so sorry to hear this! I hope the dr. you're seeing is able to help you - quickly!

Ween said...

I'm so sorry Carol. When I read about you being diagnosed I kept my mouth shut. I didn't want to be gloom & doom and you had been diagnosed and treated so quickly. Unlike a friend of mine who went undiagnosed for almost a year. Since we live in California, where it isn't as prevelant, and certainly not at that time 10 years ago her doctors dismissed her as a hypocondriac. Her pain was intense, mostly her back and hips, she had to sleep sitting up because it had caused all kinds of stomach problems that eventually let to GIRD. It was absolutely awful to watch. We have lost touch since, but I know she was getting better. She was going into year 2 of treatment but will never be the same. You are at an advantage since you live in an area where it is more common. And there are actually doctors that specialize in it. But still, it SUCKS.

As far as doctors in general, you have to be your own advocate. No one else is going to look out for you, even the well meaning ones. I've had to pay out of pocket and seek outside help for my thyroid.

I also have two friends that had cancer that had gone mis/undiagnosed for extensive amounts of time.

Keep researching, keep pursuing until you feel good again. Don't give up!!!


Wily Jeneric said...

Oh, I was hopeful a quick treatment would work. My two cents: talk with the patients in the waiting room. If they've been treated for more than a year, consider another doctor. We were snookered by a doctor who never seemed to think the Lyme was cured (when in fact, it probably had been a long while ago). Also keep in mind that there are some co-infections that go along with Lyme and are more common than the average doctor knows.

But boy, howdy, do you have the symptoms! Just be glad you aren't Norma!

Unknown said...

Thank your lucky stars that you're smart, and understand how to find alternate resources than your regular medical staff.

Can you imagine poorer folks who need to rely on whatever healthcare is thrown their way.

It still pisses me off that Hillary was berated for her ideas on social medicine.

Zardra said...

Reading your post reminded me of what I've heard of Amy Tan's bout of Lyme Disease (I think she talks about it in one of her books). She apparently had it very bad, it wasn't diagnosed for awhile. She almost went crazy from the experience.

It's just really sad when doctor's don't listen to their patients.

Anonymous said...

Carol, I'm so sorry about the Lyme diagnosis. I had it many years ago, and still suffer side effects from it (arthritis, a slight droop to one eyelid, things like that). Having Hashimoto's syndrome like Christina, I also know how dreadful it is when a doctor essentially tells you there's nothing wrong physically, and wants to send you to a psychiatrist. Not that I might not need one (grin) but having symptoms and a positive blood test, and asking for help, and being told you're dreaming is outrageous. If we were dreaming, it would be of FUN things, like knitting, and fiber, and such, not pain! Keep looking for a good doctor, it's worth it.

M-H said...

Sorry to read this Carol. I hope that your new doc takes you seriously and can help.

rho said...

I am so sorry you are going thru this - I was one of the lucky ones to get Lymes and Babesosis in the begining of the knowledge about them and not much was done so I am still paying for that (also I was so lucky that either one tick had both diseases or two different ticks got me at the same time) Sarcasm fully intended....

Try getting some of those lycra like fingerless gloves -- they help a bit -- also if the base of your thumb is bothering you try warm soaks (if you can get a warm wax treatment to see if it helps it might be worth getting one of those little heated tubs for that) I also have rice bags I heat in the microwave to put on my hands sometimes when it is bad.

Good luck with the doctor --- finding a good one is hard - I lost mine -- he went to boutique medicine and I couldn't affort $2,500 a year for the honor of being one of his patients.

JJ said...

Carol, Lyme disease (and all tick-borne diseases) are extremely difficult to treat. Lyme disease is caused by a spirochete (Borrelia burgdorferei) that is transmitted by ticks. It's been a long time since I studied it (as an undergrad 12 years ago), but I remember that the antibody tests at the time weren't that great, and they still aren't. (I'm a veterinarian, and we run into the same diagnostic issues in dogs.) There are a lot of people who believe combination antibiotic therapy may be better for treating tick-borne illnesses. The other problem with these diseases is that it seems to create immune dysfunctions which lead to sequelae like neuropathies and the like.

Good luck with treatment. I really hope the doc in Jersey has better treatment options for you than what you're currently on. This is a truly frustrating illness (as I'm sure you're aware).

ESPECIALLY when it affects the knitting. (Hope Black Bunny Fibers doesn't suffer for it...)


Anonymous said...

Oh Carol! I was so hoping you were done with it. When is the appt in NJ? Please please keep us posted, and know we're all hoping for the best. In the meantime, I'll be thinking tons of "non-achy" thoughts for you.

Sner said...

I hope you feel better soon. This sounds like a real burden. I have throughly enjoyed your articles on fit in knitted garments and hope you keep them comming. Stuff like the sleve info is exactly what I was looking for in the knitting community. Thanks again for all your effort on this blog!!

Diane said...

Good for you for realizing that your regular doctor was doing his best but not enough to really help you.

And thank you for sharing this information with everyone on your blog.

Wishing you all the best as you do everything needed for get better.

Sherry W said...

You know, the more I read and hear about women being 'hysterical' over symptoms, the more it pisses me off. I don't want to fill your comments with *my* story, but I have a rare and harmless neurological condition that can give me weird MS-like symptoms. Took me 4 months of waiting to get to a neurologist so I could get a simple MRI.

Slap them around, girls.

MsAmpuTeeHee said...

I'm sad about the knitting knews...and I'm so glad I'm so glad you are talented, efficient and able enough to self-advocate (even though it's a shame that's what it takes).

Thinking very positive thoughts and lighting candles for you (ie: doin' the mojo) for health, support (including financial), clear information, and pain free knitting. If I missed somthing, email me ;-)


Anonymous said...

If you talk to those doctors the same way you write your blog--precise, intelligent, well-researched, and witty--you should be knitting detailed she-who-must-not-be-named sweaters very soon.
A little joke--

tics-blood-sucking organisms

the hanged man said...

Carol -
Good luck with the doctor in Jersey and if there's anything I can do to help, please let me know. I'll check with my sister Julie (who's a nurse and a considerable fount of medical knowledge) for her two cents.

Anonymous said...

So sorry to hear about your struggle. My mom's Lyme doctor is Andrea Gaito and she is in central NJ, Basking Ridge, I think. She is or was the president of the medical association for Lyme disease. Best wishes, Blogless Kim (kimberly_nico at yahoo dot com).

brewerburns said...

I just wanted to wish you good luck. I will be thinking of you.

Anonymous said...

I know this post is years old by now, but I just wanted to let you know how happy I am to have found it, on a blog I now read regularly even! I was diagnosed with Lyme's in Feb. and the last few months I have developed some major muscle and joint pain and my knitting is suffering severely!

I am off to scour your blog even more thouroghly now!