The Maddening Search for a Diagnosis: Part II

We often hear horror stories about how people have gone from doctor to doctor with a mysterious illness. Usually the story goes that no one can help, tests don't reveal anything, the person grows increasingly frustrated and that frustration itself becomes a factor in how good they feel. Sometimes an (inaccurate) diagnosis comes, and then it is a crap shoot how effective the treatment is. And then, eventually, the person finally gets the right diagnosis... and then the real struggles begin, often started on top of years of prior frustrations and a growing sense of hopelessness.

How common is this story anyway? Today we'll look at survey questions #3, 4 and 29, and get some reality on this story.

Frankly, I was skeptical about this--OK, maybe a couple people have done this, but large numbers? Could it really be so bad? Today I'm writing with apologies for being a doubter on my fingertips. It turns out this story is true in a ridiculously high number of cases.

In question #29, I asked: How many medical practitioners did you see before you got what you believe to be an accurate diagnosis?

The basic faith that people have in their doctors includes an assumption that they'll get our diagnosis right fairly quickly and then know what to do about it. Yet only 7.8% of us in this survey got diagnosed with our first practitioner. If you want to cut them some slack and recognize that not all doctors are great at all things (and what human is?) then perhaps you'd expect that we'd be sent to a specialist or two who will then figure it out, or we'd switch doctors and the next one would see it for what it is. And yet only an additional 20.8% got the answer with doctors 2-4. That's less than 29% within what this writer would consider to be a reasonable number of professionals doing good work.

This is not good.

And it gets worse. Here's the full data from question #29:

Nearly 20% of the respondents are in that last category; it took at least 17 medical professionals to correctly diagnose lyme. That's 1 in 5 of us. There really is only so much we can blame on bad testing, or lack of expertise in a certain area. (See my last blog for more outrage about this sort of thing.)

Questions 3 and 4 also describe the incredible time lag respondents experienced between getting the infection and having it properly diagnosed. When asked how long they've had lyme, and for how long it has been diagnosed, here's the numbers:

Laying the charts on top of each other, you can see how the curves run in opposite directions: clearly diagnosis is lagging very far behind in our timelines. The peak for how long we've had it is in the 10-20 year range, and yet the largest number of diagnoses have happened just in the last year.

Here it is in numbers for folks who do better absorbing information that way:

Number of years we've......      had it for....            been diagnosed for...

less than a year                           0.8%                         32.2%
1-2 years                                    7.0%                         19.8%
2-5 years                                   17.3%                        28.2%
5-10 years                                 21.9%                        11.4%
10-20 years                               29.4%                          5.6%
over 20 years                            20.4%                          2.8%

So while almost half of us have been infected for more than a decade, only 8.4% of us got diagnosed more than a decade ago. Now of course, there are going to be people out there who got diagnosed more quickly than what this is representing and aren't here because they've gotten well and moved on with their lives. (Or simply given up. Or died.) So it is hard to say how representative of the general lyme population we are. Yet, look at the more recent years: less than 8% say they've contracted it very recently (meaning in the last 2 years) and more than 50% have been diagnosed recently. This tells me the time lag is a real thing.

What this adds up to is that a lot of us carry these bugs in our systems for long enough that the lack of good, efficient diagnosis must be blamed for why a big chunk of us have gone chronic and are so desperately ill instead of having lyme be a quick blip of mundane sickness in our lives.

What we need are five things:

1) More accurate testing. Even the best tests are frequently wrong.
2) Doctors to stop taking the CDC positive guidelines as diagnostic guidelines.
3) The mainstream medical community to get over their stubborness and accept that lyme can indeed turn chronic and look for it.
4) Broad acceptance of clinical (symptom-based) diagnosis as legitimate for both treatment and insurance coverage purposes.
5) Lyme testing (or assessment) should be a standard annual test, like a pap smear for women.*

We'll talk more about diagnosis methods in the next blog. In the meantime, this is an excellent overview of chronic lyme diagnosis by Dr. Marty Ross.


Transparency

I have had lyme for about 15 years, but only got diagnosed just under 2 years ago. I was diagnosed on the third try with licensed medical folk... though there's a story about that. 

I was actually diagnosed a few months earlier than that by a shaman who had never met me and did it on the phone. She told me I had "undiagnosed lyme disease in my system" and recommended a year of colloidal silver. I sort of took her seriously, and got the silver and started taking it, but it was expensive and I flaked; truth was, I wasn't sure how seriously to take it. 2 months later, a pair of midwives in my life insisted I get another lyme test through Igenex and we finally had the positive I needed to get on the healing journey. I kick myself a little for not taking the shaman more seriously... but of course it was only a couple months and after 15 years probably didn't really matter too much. 

Still, it makes me wish we had a much more broad acceptance of a really wide range a practitioners to take care of us. Because she cut to the chase, no blood work needed. (And hey-- the diagnostic score was, up to that point, Shaman: 1, Doctors: -2... makes ya wonder...) And yet, even I (who pride myself on being open minded about such things, and had her recommended by a friend I trust) only half-heartedly took in the possibility that she might be right on. I try to tell myself that it was because I knew colloidal silver wasn't the answer for me (though I do use it for some things); but the truth is, I was being a pig ignorant white person and blowing off her significant native wisdom. Not charming.

Would that I lived in a culture where we could take that seriously.

+++++++

* I use pap smears as an example for this because they are such a routine thing, and yet the number of new cases of cervical cancer, which pap smears are meant to catch (12,400 per year) is significantly lower than the number of new lyme cases every year.  I'm not knocking pap smears, I'm saying lyme deserves this same kind of treatment.