My Lyme Disease Is Not the IDSA Lyme Disease – Sharon Wachsler

This past Wednesday, December 8, 2010, the Chicago Tribune published a lengthy article called “Chronic Lyme Disease: A Dubious Diagnosis.” This article is so biased and filled with misinformation, I need to respond. (As  you’ll see at the bottom of this post, I’m not the only one.)

The article’s central claim supports the stance of the Infectious Disease Society of America (IDSA) that chronic Lyme doesn’t exist.

[The IDSA concluded that there is] “no convincing biologic evidence” for a Lyme infection that persists and continues to sicken despite the recommended treatment, usually a few weeks of antibiotics.

My experience, and the medical evidence that is part of my experience, contradict this dangerous and preposterous notion. Here is my own Lyme disease story (which will act as Part II of the Lyme Awareness Month post from May 2010, when I promised to describe how Lyme has affected me, and what you should know about it).

Summer of 2007

My case is a little different from the typical “How I Became Disabled/Ill” narrative because I was already disabled by chronic illness before I got Lyme disease. I usually try to avoid comparisons among disabilities, but I have to speak the truth: What I have gone through with Lyme disease has been much, much worse than what I experienced in my previous decade of chronic illness. I would gladly have my other illnesses double- or triple-fold more severe if it would rid me of Lyme. I’ve lost parts of my life and myself to Lyme I didn’t know it was possible for me to lose.

Here’s how it started. One day, I was sitting on the couch watching TV, absent-mindedly running my hands through my hair when I felt something sticking out of the nape of my neck. After living in the severely tick-infested area of rural Western Massachusetts with two dogs, I immediately knew this was a tick, although it felt rounder and much smaller than I was used to. Nevertheless, I wanted it off me; I didn’t want to wait to mess around with mirrors and tweezers, so I handled it as I did the dogs’ ticks — I grasped it at the base and pulled.

I heard the “pop!” that occurs when a tick is removed that’s been embedded, and as I had pulled at an awkward angle — my hand behind my head — I dropped it. Into the sofa. The falling-apart, loose-foam, shredded-upholstery black-hole-of-a-sofa. I tried to find it, but I never did.

I was pretty sure it had been a tick, but I wanted to see. I was hoping I had just pulled off some random, weird thing that was not a blood-sucking insect. However, when I checked in the mirror (two, actually, since it was on the back of my head so I couldn’t see it without a second reflection), there was a large, dark-pink raised area with a bloody center — just like how it looks if I pull an embedded tick off my dog. I cleaned it and hoped for the best.

I checked it again over the next couple of days. The area was flattening out, the scab was healing. My (mis)understanding at the time was that if one contracted Lyme disease, a bull’s-eye rash would appear immediately at the site. I saw no rash, so I forgot about the bite.

About a month later, I developed joint pain in my fingers. Out of all the symptoms I’ve had with all my health issues, I’ve never had my joints bother me. The pain was bothersome, but not severe. However, I was a writer, and I relied on my hands for work as well as to make up for functional limitations in other areas caused by my disabilities. I was very protective of my hands. I just didn’t want anything to get worse. Fortunately, I happened to have a doctor’s appointment coming up.

At my biannual appointment with my primary care physician, I mentioned the joint pain. She thought it was probably a worsening of my other conditions, but suggested a couple of tests, including one for Lyme. That set off a bell in my head. I remembered that thing that I had pulled off the back of my head. When I got home, I grabbed my hand mirror and went to look in the mirror over the bathroom sink. I parted my hair and looked at the area where the bite had been. It was flat now — no more bump — but it was definitely discolored. It was red.

I looked up Lyme disease online and discovered that the array of symptoms I’d been experiencing in the last couple of weeks were classic of Lyme — not just the joint pain and the rash, but the new kinds of headache and vertigo, the drowsy fatigue, the constant ache in my neck and shoulders, and more. Crying, I got out my dog-grooming clippers and shaved off the hair in that area so I could be certain of what I was looking at. I compared it to the pictures of erythema migrans (Lyme rashes) I’d seen online. Bull’s-eye.

Well, metaphorically, at least. Some EMs look like bull’s-eyes, but they are just as likely to be roundish, red rashes. I knew this was serious.

Large reddish-pink splotchy rash on the back of Shaved headLyme Rash

My Lyme rash (EM). The clear spot in the middle is where the actual tick was attached.

I called my PCP and told her about the tick bite and symptoms. Because I’m allergic to tetracycline, a relative of doxycycline, the frontline drug for Lyme, the doctor prescribed the second-best antibiotic for early Lyme, amoxicillin. I read all the comforting information by the Centers for Disease Control (CDC) and the IDSA that Lyme, when treated promptly, responds quickly and completely to appropriate antibiotics. I had heard of chronic Lyme, but my impression was that this was a disease that only occurred if one went years without treatment after infection. I also thought of it as a mild disease, more of a nuisance — some joint pain, maybe a little fatigue, but not a big deal.

“Something Curable and Non-Controversial”

I focused on the information on site after site that said prompt diagnosis and treatment would cure me. I even told my friends and family, who were upset and scared to hear I’d contracted Lyme, “At least I have something curable this time!”

I meant it. Yes, I was scared. I didn’t like having a frightening disease given to me by a disgusting tick, but I felt almost giddy with relief that now I would be on the road to recovery. This was just a bacterial infection. Antibiotics kill bacteria. Within a couple of months, I’d be back to normal.

It was also a nice change of pace to have a disease that seemed to be without controversy. Lyme was caused by a known microbe; nobody disputed that. Unlike my other diseases, whose etiology was still being pieced together, this time I would not have to hunt for a physician who knew how to diagnose and treat me.

I stayed on the amoxicillin. Initially, I got much sicker (which I now know is a Herxheimer, or die-off reaction), and then most of my symptoms started to improve. But not all of them. My PCP kept me on amoxicillin. Weeks turned into months, and some of my symptoms, including my rash, persisted. Different antitibiotics just made me worse. I became much sicker.

Thank God I had that rash.

Doesn’t that seem like a strange thing to say? That’s because in the hellish time to come, the rash would be the one piece of incontrovertable truth that the tick bite had occurred and done damage. It was proof of infection, proof that something wrong was left behind, something visible on the skin.

In November, I became suddenly and drastically worse. The light- and sound-sensitivity and headaches became all-consuming. The musculoskeletal pain was unendurable. I developed neurologic symptoms, including intermittent vocal-cord apraxia (inability to speak) and functional paralysis in my arms — and more often — my legs, severely compromised cognition, and behavioral and mood changes.

I was so weak that I couldn’t leave my bed and had to use my powerchair to get to the bathroom. I needed help to brush my teeth, eat or drink, get in or out of bed. I had trouble breathing and eating; I lost thirty pounds.

I started searching for a doctor who could help. None seemed able to intervene because none of them were convinced, entirely, that my illness was caused by Lyme. Why? Because all of my Lyme tests were negative. I soon learned that this was meaningless; Lyme tests are notoriously inaccurate for producing false negatives. I was tested over and over for multiple tick-borne diseases by multiple doctors as I started seeking more answers. All bloodwork returned “inconclusive” or negative.

However, the CDC officially states that blood tests are not to be used as primary diagnostic tools for Lyme. The IDSA and CDC both say that the presence of an EM rash is 100-percent proof of Lyme infection, and that treatment of patients with EMs should begin immediately; blood tests in such cases are optional.

That’s what they say. Officially. However, none of the doctors seemed to know this. . . .

“Lyme Can’t Cause This.”

I was desperately ill and scared. My friends and family were afraid that I was dying. Yet nobody could come up with a diagnosis. Physical exams and blood tests showed abnormalities, but nothing gave a conclusive answer as to the why.

The only thing we knew that had been added to the mix was Lyme disease, and that was now being dismissed because (1) all my blood tests for Lyme were interpreted as negative (despite that all my lab results say right on them that the test is not conclusive and that clinical evidence must be taken into account), and (2) my doctors were as uninformed about Lyme disease as I’d been.

“Lyme can’t do THIS,” I heard again and again, as each doctor rushed me out of his or her office. Most knew something physical was truly wrong, yet I still heard suggestions for psychiatrists. Doctors who had known me for years treated me like a scary stranger. I was told to find out what was wrong and then come back. Some refused to see me altogether.

Yes, I had had Lyme, the doctors agreed, that was not in dispute, but since I’d been treated for it (actually, according to IDSA standards, I’d been overtreated for it), it could not possibly be the cause of my myriad symptoms. My Lyme was cured. So, all of this suffering and blatant physical dysfunction that occurred immediately following infection was just a coincidence. Besides, everyone knew Lyme just caused some joint pain, headaches, Bell’s palsy, etc. It didn’t make you unable to speak or lift your foot. It didn’t create such agonizing pain that it literally immobilized you. It didn’t destroy your life, like whatever this was.

Thus, in February 2008, my Lyme doctor stopped treating me. She knew I was sick, but without a positive test result, she said she couldn’t “justify” continuing to prescribe antibiotics. I didn’t know at the time that doctors who treated patients with Lyme beyond the IDSA’s “guidelines” were in danger of losing their licenses, losing insurance coverage, and even criminal prosecution. I just knew I was being abandoned.

I spent nine months without treatment, unable to talk, stand, feed, toilet, or bathe myself. I was in excruciating pain, nauseous, dizzy, and couldn’t tolerate any sound, movement, touch, or light. I had migraines around the clock. I had psychological symptoms I’d never had before, altering my personality, and causing me to lose most of my friends.

During this time, not knowing what else to think, I eventually began to believe the doctors. They said this wasn’t Lyme, therefore it must not be Lyme. I didn’t know what it was. I just was holding on for dear life.

I had one friend who had gotten Lyme around the same time as I had. Luckily, her test results had been positive, though she did not remember a tick bite. She was absolutely convinced that my symptoms were caused by Lyme and coinfections. She sent me printouts of Internet Lyme forum posts from other people who’d lost their voices, who couldn’t stand or walk or had tremors, and on and on. She begged me to get retested.

“Positive”

Physically and emotionally, it took everything I had to get retested. In October, 2008, I was again tested for antibodies to the spirochete that causes Lyme, as well as for three other tick-borne diseases. I couldn’t bear the thought of the results coming back stamped, “Negative, negative, negative.” It would be the end of hope. But, I needed someone who was in a position to help me heal to finally know the truth, and this seemed the only way. I had to risk it.

I remember sitting in front of the fax machine, slumped over with exhaustion in my power wheelchair, as page after page came through from the lab.

  • “Western Blot, Borrelia burgdorferi” (the microbe that causes Lyme), “Positive.”
  • “Lyme disease — Confirmed by Southern Dot Blot, Positive.”
  • “Babesia microti” (another tick-borne disease), FISH (a test that shows the presence of the parasites’ RNA in my blood), “Positive.”

As the positive results came through, I cried and cried. Finally, answers. Finally, “evidence” that I wasn’t “crazy.” Over a year-and-a-half after infection, the combination of antibiotics goosing my immune system into producing enough antibodies, and the time that allowed the organism to multiply in my blood and tissues had led to proof: positive blood tests for Lyme and babesia.

Based on these results, my doctor started treating me again. She said she was “thrilled that now she could finally help me.” I can only assume that she had been afraid to risk it before, to risk her practice, because of the politics.

With these two diagnoses came a third — Bartonella. I had almost all of the symptoms, and it is even harder to get an accurate test for this infection than for Lyme. In light of the proof of existing tick-borne disease, my doctor now made a clinical (symptom-based) diagnosis of this third infection. Bartonella seemed particularly likely to be at the root of the psychological symptoms that had cost me my sense of self and most of my support system.

Thus began a grueling treatment regimen, with herx reactions so strong that they usually lasted for several months. Now I am slowly — very slowly — getting better. I’m still not back to how my life was. But I can do more, I suffer less physically, and my personality has been returned to me. I have hope.

“Dubious?” How about “Definitions”?

The IDSA says there is no evidence for chronic Lyme infection that persists after their recommended treatment of 28 days of antibiotics.

My body — my story — provides the evidence that the IDSA is wrong.

Let’s break it down, definition by definition:

  • Evidence: It should be enough for any practitioner to have seen me to know that I was physically ill (and, indeed, that’s what they saw and various blood tests and exams showed), but since clinical common sense was not enough, let’s look at the evidence that takes the human factor out of the equation. We have my EM, at the site of a tick bite. That’s evidence that the CDC and IDSA don’t even dispute. We have the multiple blood-test results that show that one-and-a-half years after infection, the microbes and antibodies were still in my blood. Evidence? Check.
  • Chronic: Chronic disease refers to a persistent and lasting medical condition. In some cases, I’ve seen cut-offs of months or years used to define chronic. Six months is sometimes used, or a year. I had positive test results of infection twenty months after exposure. Three-and-a-half years later, I’m still sick. Chronic? Check.
  • Infection: Here’s a good definition of infection. “The pathological state resulting from the invasion of the body by pathogenic microorganisms.” Borrelia burgdorferi, “the Lyme bug,” is a bacterium in the spirochete family, similar to the microorganism that causes syphilis. Babesia microti is a parasite that causes babesiosis, similar to the parasite that causes malaria. Infection? Check.
  • Persistence of illness after IDSA’s protocol has been performed: I was on amoxicillin from July 2007 through October 2007 and cefuroxime from October 2007 through February 2008. That’s a lot more than 28 days. Yet, as is clear from the evidence of chronic infection above, I was still sick. Persistence? Check.

So much for my easily curable, noncontroversial illness. That’s the IDSA Lyme disease, not my Lyme disease.

I sure wish the gap between the two wasn’t so wide. I sure wish my illness had been quickly and easily curable.

If the IDSA’s picture of Lyme matched the reality of it, that tick bite would have faded, along with my rash, to a distant memory.

If that had been the case, not only wouldn’t I have had to suffer the physical damages of this illness, I wouldn’t have to write a blog to counteract misinformation claiming that my experience doesn’t count, and that my disease doesn’t exist.

Thank you for reading.

-Sharon, the muse of Gadget (who also had Lyme, and who also required treatment much longer than he was “supposed to” have), the spirit of Jersey (who seems to have escaped the plague), and Barnum, who gets tick-checked every night from March through November and has had over 60 deer ticks found on him in his first year alone in rural Massachusetts

P.S. Please support this effort. Comments are very welcome. I also encourage you to visit the following other bloggers who say “My Lyme Disease Is Not the IDSA Lyme Disease.”

I believe Ashley spearheaded this effort; she is a fierce and eloquent advocate for Lymies. Some of the other bloggers also have MCS, like me. Candice is one with severe MCS and food allergies, and a moving story. Heather’s tale is one of the most compelling I’ve ever read, on any topic; please read it.

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18 Responses to “My Lyme Disease Is Not the IDSA Lyme Disease – Sharon Wachsler”


  1. 1 Ashley December 11, 2010 at 3:37 pm

    Isn’t it amazing how many “experts” can say things don’t exist or that they can’t be as severe as they are in some? CRPS has similar misinformation that is constantly put out. I’ve been told it doesn’t exist, it doesn’t spread, it can’t put you in a wheelchair, it doesn’t affect anything besides the pain factor. We are constantly fighting the same battle you are. In fact, that is why I started my blog.
    Off to read! If you don’t mind, I will pass this on to.

    • 2 Sharon Wachsler December 12, 2010 at 10:15 pm

      Hi Ashley,
      Thank you for commenting!
      I didn’t know anything about CRPS before your blog and now I’ve “met” someone else online with it, so I didn’t know you fight this same battle. Although, quite honestly, I don’t know anyone who hasn’t had dealings with medical people who were talking outta their butts. But when you have a chronic illness — especially one that is not well understood (which is most of them!) — it’s even worse!
      With Lyme, there is the added twist that there is an active campaign to deny it, much like with MCS, because there is money at stake in discrediting its existence. With MCS, it’s the chemical industry (losing ground, happily) putting money into PR and “expert witnesses” to say MCS is “hysteria.”
      With Lyme, it’s the health insurance industry in bed with the IDSA. So so so much cheaper to pay for a month of antibiotics and declare you cured than pay for many months or years of medication. Of course, the irony is that if they did properly diagnose and treat people in the beginning, in the long run, people wouldn’t be as sick for as long and would cost them less.
      Ah well, no point bringing logic into the conversation. Like that ever solved anything!

  2. 3 regina December 12, 2010 at 7:51 pm

    So well-written and so sad. I identify! Best wishes to you!

  3. 5 Kim December 15, 2010 at 12:39 am

    Sharon,

    I had such a hard time reading this. My story is so similar to yours in so many ways, and hearing about all you’ve been through made me want to cry.

    I had the rash on the back of my scalp too. I’m nearly positive I was exposed to a tick in a movie theater of all places (I remember feeling a bug bite there during a movie), and that it was the tick that sent my other Lyme symptoms over the edge. In some ways it was a God send because it was what made me believe it could be Lyme in the first place… and then I started realizing that I was bitten by ticks all the time as a kid and that Lyme could very easily be the cause of my other symptoms. I have terrible chemical sensitivities too. They’re not as bad for me in public now that I’m doing so much better, but I still keep a 100% chemical free house and I plan on doing so for the rest of my life. And I’m not going to lie… I still avoid people/places where I know I’ll run into too many chemicals.

    Is your doctor doing any nutritional work with vitamins or supplements? Or anything with herbs? I did notice a big change in my reaction to my treatment once my LLMD added those things in.

  4. 6 Sharon Wachsler December 15, 2010 at 2:59 am

    Hi Kim,

    Thank you for commenting!

    I’m very sorry you relate so painfully! And that you also have chemical sensitivities. My MCS has been slowly getting better over the years, too, since I moved to the country.

    Ha! I moved out of the city because it was killing me, due to my MCS, and then I ended up in Tick Central and got multiple tick-borne diseases!

    I know what you mean about the tick bite being a Godsend. I feel so fortunate that I found that tick! The chances were so good that I wouldn’t! If I hadn’t, I probably never would have been diagnosed. I shudder to think of it.

    I think I posted on your blog that your story reminds me a lot of someone I know — grew up in the country, developed various issues around the same age, has developed more health issues that seem common for very long-term TBDs — but has never been evaluated for Lyme. It scares me.

    I’ve been on all sorts of supplements, vitamins, and herbs since 1996, for MCS and CFIDS. When I got Lyme, I tried a humongous number of new things. I have recently cut back, but it’s still a massive quantity. Sometimes I wonder if it’s worth it. There are only a couple I know for sure help me. (Buffered vitamin C helps me clear MCS symptoms; it’s my “go to” supplement.)

  5. 7 Kim December 15, 2010 at 12:23 pm

    Hi Sharon,

    My own blog wouldn’t let me continue our comment thread, so I just replied to you in a new comment. :) And so glad we can keep up the conversation here.

    That does really concern me that your friend has so many symptoms and hasn’t been tested. I think it’s really easy to think “this is just the way it is” and not know 1) even how much pain you’re in, and 2) that there can be an explanation and treatment even if doctors have failed at it before. I know in my case I was resigned to a lot of it before I got the rash on my scalp and neuro problems. And later when I saw physical therapists they told me I’d grown so accustomed to pain I had no idea how much I was actually in. Now that I’m feeling better, I can finally see how right they were.

    I agree with you on the Vitamin C. I love it! A big dose of B vitamins helps me too with my nervous system symptoms and my energy. I’ve tapered off from taking as many as I used to, but I still love my daily vitamin, my C, my B, and my omega fatty acids and milk thistle. In my case those are the ones that keep me going.

    Hope to talk more soon!

  6. 8 sweetnika February 20, 2011 at 10:39 pm

    (((hugs)))) I understand the total frustration.. great post!
    from your pals over at “fivelymiesandababy” :)
    Your site is super, very informative, and … encouraging! :)
    nice to “meet” you!

    • 9 Sharon Wachsler February 21, 2011 at 1:01 am

      Thank you so much. I’m glad you found it encouraging! I’m trying doxycycline now for the first time — we’ve been very cautious because tetracycline gives me high fevers. So far, it’s going OK. If I do OK with it orally, we might add it to my IV.

      Thanks for the work you’re doing, too, to raise awareness about Lyme. It certainly requires an ongoing effort.

      I have a recent post, too, where I do a sort of PICC line crash course: ;-)

      http://aftergadget.wordpress.com/2011/02/10/an-alert-pup/

      Take care of y’all.

  7. 10 Skellie October 16, 2011 at 10:15 am

    Gosh… I’m just an Australian woman looking for a bit of info on how to do a thoughrough tick-search.. but I stumbled upon your blog and then spent hours reading through your posts..
    So inspiring and informative!
    Thank you for all the great posts, I loved reading them!

    • 11 Sharon Wachsler October 16, 2011 at 11:39 pm

      Hi Skellie,

      Thank you so much! And welcome! I’m glad you’ve enjoyed what you’ve read and found it helpful. In case you didn’t find what you were looking for, I have a page that lists all the posts specifically about Lyme and ticks, etc. On the home page, on the menu on the right, there is a page called something like, “Did you get here by searching ‘Ticks’?” Click on that. I have one post specific to tick-checking dogs, one more recent one for how to tick check oneself or other humans, and I have one specifically for tips for wheelchair users.

      I need to amend the dog-checking and human-checking ones because Barnum had a slightly engorged deer tick nymph on his snout last night — which is the hardest type of tick to remove, because it is very small, but also soft and squishy — and stressful, because Lyme is most commonly passed by nymphs. I tried the Tick Key for the first time and it was a complete failure. I ended up having to use my fingers and got the whole tick, but I think I squished its stomach contents into the wound, which is really not ideal. Sigh.

  8. 12 Mary Kniskern May 29, 2012 at 6:56 pm

    Thank you for the reminder to check my SDiT every evening. I too have wrestled with persistent Lyme, and now, ten years (and seven+ months of antibiotics) later, still wonder if strange new symptoms are somehow related to that “adventure.” Hang in there!

    • 13 Sharon Wachsler June 3, 2012 at 10:05 pm

      I have learned that almost anything can be a symptom of Lyme or other tick-borne diseases. I’m on year four of intensive treatment. I hope one day this scourge will suck less of my life from me.


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