Male perimenopause? and other random thoughts

Last blog, we started to look at the results from the symptoms questions. Before moving on, I want to highlight three things that caught my interest. Here's my three:

1. perimenopausal-like symptoms, 
2. weight regulation and the thyroid, and
3. thought on the media, sparked by the (relatively) low incidence on seizures

1. MCIDS can imitate perimenopause. I say "imitate" with some confidence (as opposed to thinking of this as prematurely inducing) because this happens even in men, who shouldn't have a need for menopause in their lives.

The five symptoms here that might look like perimenopause are hot flashes, night sweats, weight gain, emotional oversensitivity and loss of sex drive. In fact, if you were a doctor and a woman came to you with these five symptoms, that would look like a "no brainer" diagnosis, wouldn't it? But here's how those same symptoms look for men and women:

Now given that the bulk of our respondents are in the age range of 40-60, it makes sense that a lot of the women in our survey group are also going through perimenopause, and therefore that the numbers are higher for women. But were seeing this same profile in a lot of the guys, and I'm pretty sure that isn't what is up for them.

Thus, a second profile (in addition to the last blog's "flu plus neuro" profile) that doctors can be on the lookout for is either women they are tempted to call "early menopause" patients (which was one of my diagnoses; I was labelled perimenopausal at 37) or men whose charts cause their doctors to do a double take on the "patient sex" question.


2. Weight regulation. We have 50.3% of the lyme population reporting weight gain and/or an inability to lose weight, and 36.5% reporting the opposite problem: weight loss and/or inability to lose weight. Both can be problematic (physically and emotionally) though the excessive weight loss end of the spectrum is probably more immediately dangerous. This kind of thing just leads to more diagnostic confusion, as the patient can present either way.

One thing this points to is that our thyroids are probably involved in a lot of cases, as the thyroid plays a strong role in weight regulation. The thyroid is just one organ in a complex system of hormone regulators in our bodies, and it is the one that controls metabolism (how fast you burn through calories).

My doctor talks about the hormone system in our body as working on a hierarchy of needs. The top of that hierarchy is survival, and everything else can be shut down or ignored in service to survival. Our sex drives can be early sacrifices to this; see above chart. (Don't you hate that? Sheesh. This disease is no fun at all.)

When survival is at stake, you can also expect that the regulation of emotions for the sake of polite society will also become less of a priority. Thus, in addition to the emotional oversensitivity numbers above, 53% of us suffer from the more serious emotional symptom of "lyme rage".

Thus, many of us with lyme act "hormonal" ( to use the phrase that for ages has been tossed at women when men are irritated with us having emotions and expressing them.... hmmm... so one interesting thing about lyme is that it is the great leveler on that old score!) Lyme rage knows no gender lines.


3. We need to be media literate. The crux of media literacy is being aware of the messages we are being fed, and being able to have a sane and healthy response to them, cutting through the biases to get to the heart of things. It also means using doing our own messaging in a way that is both in integrity and effective.

I realized as I started to see the symptoms numbers roll in that I was expecting to see more seizures. And that was weird. As I thought about it, though, I realized that I had been starting to pay attention to media coverage of chronic lyme, and that the most prominent recent media coverage had a lot of seizures in them (I'm thinking of Under Our Skin, and the Dr. Phil Show as the most stark examples of this.)

I'd bought into the image that most patients have seizures... I hadn't been a very savvy consumer of media images. I think it is important for us to be media savvy. What this means is three things: 1) Yes, do get the dramatic stories out there because they get people's attention. Both of these are examples of good media from that perspective. But place the more common examples side by side as well.

2) Have good boundaries ourselves as lyme patients with not getting drawn into the fear those stories generate. The truth is, most of us probably more closely fit the profile of Dana Walsh (the woman who works for U2 in Under Our Skin) than that of  Mandy Hughes (the woman whose picture graces the movie poster).

In other words, don't scare the crap out of ourselves thinking we are all going to have seizures from lyme or our treatment. 19% of people do, and that's horrifying; but that also means 81% don't. We don't need extra fear driving our anxiety levels up; the media is very, very good at fear.

So personally media savvy means you are able to watch things like Under Our Skin and understand that media will be drawn to (and play up) the most dramatic cases it can find.  You can celebrate the way it is helping get the word out and impact people emotionally without having to take it on in your own emotional body. Look at it this way: you are already convinced this is serious; Under Our Skin is for people who aren't.

Which leads me to 3): we have to tell a wide range of lyme stories. Watching some of the media coverage, you'd think that you have to be bed ridden and paralyzed in order to have lyme. Most undiagnosed lyme sufferers won't resonate with those images and therefore won't see themselves in it enough to go get checked out.

There is danger to our community in focusing too much attention on one end of the spectrum (which the media will gravitate toward) of experiences with this. We need to make sure we are serving the currently undiagnosed population in what we do with the media, and I actually think they are the most important audience we have.

So all those interviews that folks have been doing, telling your own personal stories... keep doing them! The more varied our stories are that are being told, the more likely people will start to understand the essential truth of lyme: it is a sneaky little bastard that manifests in many, many ways... and it might just be your mystery illness.

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.