Misdiagnosed Despite a CDC-Positive Test: My Lyme Disease Story

Since Lyme awareness month is about to end, I thought I would tell a story about what can happen when there’s no Lyme awareness.

In 2009, I hobbled into the office of an Infectious Diseases Society of America (IDSA) doctor who was a famous fibromyalgia and ME specialist. I had severe back pain (8 on a scale of 1-10), joint pain, brain fog, and fatigue. I say “hobble” because I was using a cane. I had mysterious knee arthritis that didn’t show up on an MRI (a classic Lyme symptom, but I didn’t know it). As for the fatigue, I had been hypothyroid for years, but this was a whole new level of tiredness—life-draining, bone-crushing. The doctor ran a bunch of tests, one of which was a Lyme-disease Western blot from Labcorp. Labcorp does not do any specialized work with tick-borne diseases. It’s generic—the McDonald’s of labs.

I remember what she said before she diagnosed me with fibromyalgia and possible ME:

The “few little positives” were IgM bands 39 and 41, which made the the test positive for IgM (new infection) according to the restrictive CDC guidelines (bands measure antibodies to parts of the Lyme bacteria). This doctor didn’t care. She didn’t even give me the one month of antibiotics IDSA doctors think is enough to cure Lyme. Perhaps she thought it was a false positive because I didn’t have exactly five IgG (past infection) bands. Lyme testing is notoriously inaccurate, and many IDSA doctors use a flawed test that was designed for survey and not diagnostic purposes. The test is also missing two key diagnostic markers that were removed because of a failed Lyme vaccine.

I never questioned her diagnosis because:

1) I trusted her. She was well-respected, had great reviews, and seemed to care, and I was brain-fogged and in agony. If this highly recommended doctor decided to rule something out, that was one less thing to worry about. (I did have the sense to keep the test, and that helped me later.)

2) I was physically unable to do my own Internet research because I have repetitive strain injury (carpal tunnel, cubital tunnel, radial tunnel, and tendonitis). At that time, I didn’t really know how to use voice-recognition software on the Internet—I only knew how to use it for word processing. My boyfriend had to help me look things up.

3) I didn’t know anything about Lyme disease, other than you were supposed to have a weird rash that looked like a bullseye. None of the doctors I saw seemed to know anything either. This lack of awareness is a gigantic problem considering that I live in New York, one of the most Lyme-endemic states in the U.S.

4) The fibromyalgia diagnosis made sense because my mother has it. I seemed to have inherited her other unfortunate health genes (she also has Hashimoto’s thyroiditis—thanks, Mom!).

5) The biggie: Many of what I now know are Lyme symptoms could also be explained by other health problems I had, and there was so much symptom overlap I didn’t know what was what.

Lyme attacks where your body is weakest. It magnifies painful conditions, making them more debilitating. In my case, the Lyme both created new conditions and worsened issues I had before.

Between 2009 and 2012, I was hit with a medical shitstorm.

1) My Spine — In 2009, an MRI showed three herniated disks. Because of some really bad medical advice, I thought the answer was back surgery. I must have visited at least eight back surgeons, and I couldn’t figure out why all but one were hemming and hawing about doing surgery.

Later, my neurologist told me that the herniations were small, and he couldn’t figure out why they were causing so much pain.

I saw a post on a spine forum in which a guy wrote that he had planned to go to Germany for a new, high-tech surgical procedure, but then found out he had Lyme disease. When he started treatment, his pain level decreased so much that he was able to cancel the surgery. Unfortunately, the post had an arrogant, off-putting tone, so I ignored it. Everyone else did too—they continued posting about failed surgeries and doctors as if he hadn’t even been there.

The back doctors shipped me off to various pain-management specialists. One of them gave me an epidural steroid injection, which made everything ten times worse. I went from having bad pain to being mostly bedbound and barely able to walk a block. I fired my then-physical therapist because she screamed at me for “not trying.” No one, especially the doctor who had administered the epidural steroid injection, could figure out what had gone wrong. She suggested doing another injection in a different area of my back, but there was no way I was going to go through that again. Finally she suggested I see a psychiatrist, which is what many doctors do with chronic pain patients when they can’t be bothered to figure out what’s really going on.

I later found out that steroids, even injected steroids, can worsen Lyme symptoms because they suppress the immune system. Suddenly the whole ordeal made sense.

Another inexplicable symptom was hypersensitivity to vibrations. Even very slight vibrations, such as those from riding in an elevator, sent shocks zinging up my spine. If I was sitting on the sofa and my boyfriend walked across the wooden floor, I felt it. I stopped being able to take the subway, which in New York City meant it was almost impossible to get anywhere. I had to take taxis and use a ridiculous, giant cushion because I could feel every bump in the road. I eventually started paying someone to give me rides to the doctor so I could leave the stupid cushion in the car.

The only explanation I got for this disabling problem was:

Errr … inflammation … no, REALLY?

Later, I read that Lyme can cause weird neurological symptoms.

2) My Arm — Speaking of weird neurological symptoms, in 2010 my right arm went numb from fingertips to elbow. I thought it was the RSI, but my hand doctor had never seen anything like it. Acupuncture cleared a bit of the numbness, but I still couldn’t feel my thumb.

I ended up getting carpal and cubital tunnel surgery, which helped, but didn’t resolve the problem.

Later, I read that peripheral neuropathy is a Lyme symptom. (But it’s also a fibromyalgia symptom, an RSI symptom, a hypothyroidism symptom, and a symptom of bulging disks in the neck.)

3) Pelvic Pain — In 2010, I started to have severe pelvic pain, and I noticed that my overall pain got worse before and during my period (two more Lyme symptoms). Still, I had a history of endometriosis, so I was used to this.

But the new pain was much worse than before, and it felt like the endometriosis had progressed, maybe even to Stage IV. I ended up having endometriosis surgery—my fourth (the meds never worked for me). Afterwards, my doctor told me he hadn’t noticed many new adhesions and growths, and he was stumped as to why my pain had become so much more horrible.

4) Mono (Epstein-Barr virus) — Also in 2010, I developed mononucleosis! (Are you sensing that 2010 was just not my year?) But I had never gotten mono at the normal time—like in college. Still, my Epstein-Barr virus “new-infection-or-reactivation” titers were off the charts. It took two-and-a-half years for the those antibodies to go down.

In chronic Lyme, previously dormant viral infections can be activated because the immune system is suppressed.

5) Worsening Joint Pain — Between 2009 and 2012, I must have seen half the rheumatologists in New York City. All of them thought I had something in addition to fibromyalgia, but none of them knew what. I was tested so many times for lupus, rheumatoid arthritis, and Sjogren’s syndrome it was almost a joke. No one suggested Lyme, although joint pain is a well-known Lyme symptom. One endocrinologist even tested me for acromegaly, or adult-onset gigantism, which can cause a lot of joint pain. (OK, I’m not a giant, but I had an abnormally high level of a hormone called Insulin Growth Factor 1, and in acromegaly you see the abnormal levels of the hormone before the person starts, err, growing.) I was negative, and later it turned out that my IGF-1 level became normal when I cut out all dairy. (Something to think about.)

Anyway, after testing me for all sorts of rare diseases, the last rheumatologist told me this:

Oh great, I thought, I’m sure there will be tons of medical research devoted to—what to call it—”Just-for-Me Autoimmune Disease”?

6) Brain Fog — Brain fog is a Hashimoto’s thyroiditis symptom, a fibro symptom, AND a Lyme symptom. I am REALLY foggy.

7) Skin Diseases, Allergies, and Chemical Sensitivities — Also in 2010 (!), I developed rosacea, seborrheic dermatitis, allergic contact dermatitis, and chronic urticaria (hives). I had itching, burning, rashes, and a bright red, swollen face. I tested allergic to several chemicals and two metals. I had even more strange neurological symptoms, such as a feeling of ants crawling on one side of my face.

Because of the allergies, I had to change all my skincare and haircare products, stop wearing makeup, wear only cotton, and analyze the ingredients of every product that came near me. I went from “but you don’t look sick” to “holy shit, what happened to your face” in two months. I also developed food allergies, including cow’s milk, bananas, soy, and avocados. And I started to become sensitive to weird things like newspapers.

Sometime in 2011, I joined a telephone support group for people with various chronic illnesses. I met a lot of people in the group with multiple chemical sensitivities (MCS). I realized I was developing something that was similar to what they had, because suddenly I couldn’t tolerate newsprint, perfume and other scented products, and old books. But I didn’t remember an initial chemical poisoning as they did (one friend worked in an office where she was exposed to renovation chemicals, another was poisoned by carbon monoxide from antiquated gas heaters, and yet another by pesticide exposure). And I didn’t have the same kind of aftereffects as my friends in the group. Certain smells were intolerable, but I didn’t get sicker later.

Yup. New chemical sensitivities and allergies are another Lyme symptom! Oh, wait, they’re also a fibro and ME symptom! And skin problems can be caused by thyroid disease! But wait, maybe I was developing MCS?

I did meet one woman in the support group who had Lyme disease, and she thought I might have it. I disagreed. She used a wheelchair and had to have IV antibiotics twice a day, and that frightened me. I didn’t yet know that Lyme manifests differently in everyone. (And now she’s out of the wheelchair, finished with the IVs, and I’m just starting my Lyme treatment.)

Later on, another friend from the support group got Lyme disease. Once she started doing the typical new-patient-Internet-research blitz, she told me that she really, REALLY thought I had it. By this time it was early 2013, and I was seeing an integrative doctor and had made a lot of progress. This doctor had changed my diet, convincing me to remove sugar, gluten, all dairy including goat milk, and soy. I was eating very low-carb. She had me take a ton of supplements like Co-Q10, zinc, magnesium, and vitamin D. She found me a holistic physical therapy center, and I had started seeing an osteopath, an acupuncturist, and a massage therapist. I was also drinking a lot of green tea, which is not great for the thyroid (too much fluoride) but is good for Lyme. In effect, I was doing a lot of things that helped Lyme symptoms without realizing it: changing my diet, doing light exercise, drinking green tea, adding supplements, getting acupuncture, and using non-toxic, fragrance-free cleaning and personal-care products. I was doing so much for my health already that I didn’t want to think about anything new.

Still, my friend kept bugging me. Finally she got me to ask the integrative doctor for a Lyme test. It came back negative (sometimes tests are negative as the disease progresses, because the immune system is no longer able to make antibodies). But I had a very low CD 57 count. The CD 57 is a subset of the “natural killer cells” of the immune system, and Lyme suppresses its activity. A low CD-57 count is only associated with Lyme.

For some reason, the integrative physician disregarded the low CD 57. She told me that I was not “the Lyme type.” (Do ticks have a type?). Now, this doctor was not unenlightened—she had written a book about vitamins and minerals, and she regularly gave glutathione IVs. Yet even she wasn’t Lyme-literate.

My friend finally said, “Didn’t you have some sort of weird Lyme test that was iffy?” I didn’t remember telling her that. Still, I dug out the test. I had forgotten that it was positive for a new infection … when I had gotten it, I didn’t really understand what that meant. I hadn’t looked—just taken the doctor’s word and filed the test away.

I marched in to the integrative doctor, who looked very surprised, and she recommended an LLMD. When he ran the IGeneX test (one of the few relatively decent tests out there), I was positive for the same bands as in 2009, plus I now had several brand new “indeterminate” bands. (Indeterminate did not mean “negative,” as I thought. The lab report said it meant “may be of clinical significance,” and recommended retesting at a later date.)

After a few months of antibiotics, the weird sensitivity to vibrations was much better, and I was able to ride the subway again. My inflammation markers on blood tests improved too. I use a small pillow on the train, but it’s inflatable and very light. You can’t imagine how happy I was the first day I walked into a subway station. Then I remembered what the subway is actually like.

At least it’s cheaper than taxis.

But I have “graduated” from physical therapy (PT) to once-weekly “rehab Pilates,” which, OK, is not a super-strenuous workout, but is a bit more challenging than straight-up PT. I also have a home exercise program that targets my weakest areas. (Of course, my back decided to go out while I was writing this post, but nowadays my pain flares are nothing like what they were, and acupuncture and massage help a lot.)

If you have been diagnosed with fibromyalgia or ME and have gotten the standard “we have no idea what caused this” from doctors, the best way to rule out Lyme as a possible cause is to see an LLMD (Lyme-literate medical doctor), LLNP (Lyme-literate nurse practitioner), or a Lyme-literate naturopath. (Also, check out me this helpful article.) The Lyme tests given by most doctors are not sensitive enough and miss a lot of cases. Some other tests, including the IGeneX Test and the blood cultures from Advanced Laboratories, are better. If you’re on disability, Medicare will pay for the IGeneX test, which is otherwise prohibitively expensive.

The other potential name for this blog was “Another Day, Another Doctor” because that’s what I have been doing since 2009. Bouncing from doctor to doctor, trying to figure out what was wrong, feeling wretched, angry, and exhausted.

I’m wouldn’t say I’m exactly cheerful now, but at least I have some more clarity.