The Maddening Search for a Diagnosis: Part I

What do doctors make of us when we see them? We could have any number of symptoms, in various combinations and it can look like a lot of different diseases, especially if one only spends 7 minutes with their patients--the average current time allotted to actual contact with a patient. Lyme's growing reputation as the "great imitator" is well-deserved: it is easy to misdiagnose in this current fast-food style medical world. The lack of good tests (which we'll talk more about in a future blog) means that even if doctors think about lyme, there might still be a problem nailing it down. So I have some sympathy with the hard job in front of doctors, especially ones who have been fed various lines about what lyme is and isn't.

And yet, as one respondee said, the sense patients all too often get isn't that lyme wasn't on our doctors' radar, but rather that, "The lyme diagnosis was avoided at all costs."

(As far back as 2006, even Reader's Digest was willing to put lyme on their top ten list of missed diseases. It's nice to know that even a magazine my grandfather insisted on getting my teenage son an annual subscription to can call it like it is. But I digress.)

It makes some sense to me that we'd get diagnoses like arthritis, lupus, multiple sclerosis and Lou Gherig's disease (aka ALS). Many of our symptoms match those pretty closely. What makes a lot less sense to me is how we manage to get so many of what gets considered a "garbage pail diagnosis" as our top three winners in our misdiagnosis lottery. These diagnoses are ones that are often seen as a last resort when they have eliminated everything else... and yet clearly lyme isn't being competently "eliminated".


What we were told instead of lyme

And here are those winners for your viewing displeasure:

Add to these more common misdiagnoses this dizzying array of "other" responses, listed at the end of the blog (I'll be amazed if any of you actually read this whole list, but suffice it to say, there's a gong load of ways you can get misdiagnosed).

So, what IS actually going on?

There is growing speculation that fibro and CFS (as well as ALS/Lou Gehrig's Disease, Alzheimer's and MS, some of the other misdiagnoses of our survey population) might caused by lyme and other critters. One of the most critical studies that ought to be done on a large scale is to get to the bottom of that. Some doctors are now starting to treat fibro and CFS patients with antibiotics, and this also points to the critter theory for their causes. Now, I'm not ready to say, that all cases in these categories are misdiagnosed lyme. I think there are other nasty debilitating bugs in the world and we don't have a corner on that market, and I'm also not yet convinced that all cases have a pathogen cause. Clearly, though, some are. If there is any truth at all to that speculation, the sooner we figure it out, the better off millions of patients might be.

Either way 42.3% and 44.8% are not insignificant numbers. Surely a hell of a lot of cases of fibro and CFS are exactly that. Most discouraging is the 51.3% of lyme cases in this survey pool who were essentially told they had a psychological problem, all the while a deadly bug was allowed to flourish in their system. This is reprehensible.

And how is it that only 15.3% of us were correctly diagnosed the first time? This is a very bad track record for a medical system that prides itself on being world class. And get this: more people (59) had a definitive bullseye rash than got diagnosed on the first try (55). (I'll give you the full data from the question that included bullseyes in a later blog.) The only possible disease you might confuse a bullseye rash with is ringworm, but no one in this survey mentioned that as a misdiagnosis, and those are both obvious things to suspect... lyme more so if a tick bite was remembered. And what percentage of folks with the bullseye remember a bite around that time: 72.5% (which is significantly higher than the average positive response to that question on this survey; again, more on the early days of our lyme life later.)

If people can't get diagnosed properly with a tick bite and bullseye... arghh!

Were people really told they had something different than lyme with that rash? Fibro and chronic fatigue are generally not accompanied by bullseye rashes and (while I believe the mind can do amazing things) it seems unlikely that there is a rash (pardon my pun) of people spontaneously manifesting a rash of this sort just for giggles.

Imagine for a moment that we had these kinds of misdiagnosis rates with, say, cancer. Can you imagine the public outcry? (Cry with me folks, this is awful.) If 51% of cancer patients had first been told that their illness was all in their heads, people would be thinking of this as major violation of trust with the medical community; some of us might go so far as to consider that sort of thing a human rights violation. (Can you tell I'm angry about this question?)

The only good news in all of this is that some treatment for fibro and CFS actually do help with lyme as well (which makes sense if a chunk of those cases actually ARE lyme.) In my case, my old diagnosis was fibro. I was put on high doses of vitamin D and an herbal formula that has some overlap with lyme herbs (among other things) and committed to doing the same art therapy processes I do now, and I was slowly improving. Not as much as when I started on doxy ten months later, but improving none-the-less.

The two things we most need medical professional for are getting a good diagnosis (since we can't order our own lab work) and prescribing the drugs we can't get over the counter. While I very much appreciate my LLDO, I also know that I could figure a lot of the treatment out myself and with peer support. But these two pieces are critical. We need to be able to trust them in these areas; and from what I found here, many of them are falling down on the job.


A different perspective

OK, I've vented and shared and given you the numbers. Perhaps you'd like a different take on it. Try this lovely blog.

++++++

What showed up as "other" responses: erythromelalgia, raynaud's syndrome, depression (lots of those), syphilis, rocky mountain spotted fever (which is at least tick borne and treated similarly), CIDP, vasculitis, mmn, a virus, gout, Non-24 hour circadian rhythm disorder, west nile virus, Hughes syndrome, Sjogrens Disease, autoimmune hepatitis, celiac disease, anxiety (many of these) panic attacks, anxiety (many of these), heavy metal toxicity, chlamydia, ME, Sports related injury (a few of these... makes me think, "really?!?") sarcoidosis, lichen planus, melkerssons rosenthal syndrome, chronic regional pain syndrome (multiple of these) depleted of vit. B12 and vit. D, innerstitial sytistus, migranes (lots of these), thyroid conditions, carpel tunnel, candida, female alopesia, PCOS (several of these) IBS, metabolic disorder, low hormones, disfunctional pitituary hormone, multiple chemical sensitivity (environmental illness; I'm actually surprised there was only on of these), tremors, vertigo, ADHD, chronic strep throat, chronic tension headache, chronic ear infection (OK, I know I'm one of those "obsessed with holistic medicine" people, but don't you think, on these last 3 someone should have been asking WHY they had all this stuff chronically?), high ANA count, Marfan's disease, urinary tract infection, transverse myelitis, Epstein Barre (aka Mono... multiple of these), vestibular neuritis, ocular convergence disorder, neurally mediated hypotension, autoimmune disorder, irritable bowl syndrome (lots of these) Hashimoto's thyroiditis, gastroparesis, adrenal fatigue (several) TMJ, Menieres disease, mastocytosis, eczema, early perimenopause (multiples of this one), narcolepsy, GERD, post-viral fatigue syndrome (multiples of this one), degenerative neurological disease, blood clots, seizures, restless leg syndrome, hypermobility syndrome (aka joint laxity), hypothyroidism, cystic fibrosis, sinusitis, bipolar, TIA,  insomnia, schizophrenia, endocrine failures, supraventricular tacchycardia, mid-life issues (gotta love that one-- what? The person bought a new sports car and took up with a 19 year old?), an unexplained heart condition, asthma, bursitis, rosacea, prolapsed mitral valve, food allergies, spastic colon, CMV, mixed connective tissue disease, chiari malformation, epilepsy, hydrocephalus, regional sympathetic dystrophy, primary lateral sclerosis, ovarian cysts, gallstones, insulin resistance, Plantar fasciitis, seasonal allergies, mineral imbalance, overexertion, Addison's disease, Ehlers Danlos Syndrome, andrenal hyperplasia, psuedo tumor celbri (spelling?), mega colon, carpel tunnel, peripheral neuropathy, mild, left sixth cranial nerve palsy, orthostatic hypotension, amplified pain syndrome, Lumbar disc prolapse, and transverse myeliti.

I hope that is the longest paragraph you'll ever see from me. And I'm appalled that it is so long. (I'll also be very impressed if anyone not working in the medical profession knows what all these things are. I sure don't. Actually, I'd be impressed with anyone IN the profession who can correctly identify them all.)