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.