Lyme Plus: Coinfection Symptoms

Today we are going to look at combination packs and their symptoms: when you have lyme plus one or more coinfections, what do your symptoms look like? Harking back to my blog from July 19, here's a reminder of the top 15 symptoms for everyone in our survey.

I surveyed about 48 symptoms. People reported having an average of 31 symptoms. Thus, another of our lyme profiles that medical practitioners can be on the look out for is: "there's a heck of a lot going on with this patient."

And of course most of us don't "simply" have lyme. I thought it might be interesting for folks to see these cross-referenced results. Here are the chart of the top 15 symptoms for the co-infections I surveyed about.

 Each co-infection "flavors" the presentation of lyme symptoms in a different way. If you feel like your own profile fits one of these really strongly, it might be worth printing out the little chart and taking it to your doctor when you ask to be tested or evaluated for one of these; however, recognize that this ia a surface treatment of these coinfection, and that most symptoms I surveyed about can show up with just plain old lyme.

A most thorough treatment of co-infections symptoms can be found on the Living Lyme website. If you go to this page, scroll down the right hand side until you see the "Lyme and Co Symptoms Checklist". This well organized chart is invaluable for figuring out just what you--or your patients--might have going on. Thanks to Marsha Marcinko for her fine work putting together the Living Lyme website.

Using the resource list on Livining Lyme can tell you about symptoms that are distinct to one coinfection (such as air hunger being strongly associated with babesia). What my charts can give you a sense of is prominence of symptoms when that coinfection is combined with lyme. Use them togather to get a stronger clinical profile for each illness.


Babesia emphasizes brain fog and lack of concentration and motivation. (Based on responses from 192 patients.)

 

Bartonella bring insomnia and emotional oversensitivity into the top 15. (Based on responses from 212 patients.)

Mycoplasma brings emotional sensitivity and sharp pains into the top 15. (Based on responses from 80 patients.)

The word "malaise" comes to mind when you look at erlichiosis plus lyme: 100% of people with both lack energy, and exhaustion and lack of concentration are close on its heals. It also brings light sensitivity into the top 15 symptoms. (Based on responses from 71 patients.)

Of the results thus far, anaplasmosis strikes me as having the most distinctive pattern. 94.4% of people report difficulty standing or walking, and sound and emotional sensitivity also make the top 15. More interesting, 100% report a whole host of symptoms-- it is like this one is the great enhancer bug.

Really, solidly, horribly bad lyme? Check to see if this little darlin' is making it all worse. (Based on responses from 18 patients.)

In fact, look at the whole symptoms results chart when you add anaplasmosis in. I know this is really hard to read, but the point is, everything is reported a higher percentage of the time. It makes me wonder if the folks among us who are the most sick and seem to have every symptom possible might just have this puppy complicating their situation...

As a concrete comparison, remember that all patients reported 31 symptoms on average. Babesia plus lyme patients reported 34 on average (and any coinfection will up this number); anaplasmosis patients have an average of 39 symptoms. The lowest % for any symptom on both the general survey count and anaplasmosis was seizures. However, while 1/5 of all patients have them, 1/3 of patients with lyme plus anaplasmosis have them.


With rocky mountain spotted fever, we finally see rashes make the top 15 list. It also looks like it hurts more often than plain lyme: 100% report joint pain and 92.3% sharp pains. Light sensitivity also makes this list. A note on the RMSF rashes from later in the survey: 66% of folks with RMSF didn't get any rash when they were first infected, so presumably most of this rash activity has happened later on. (Based on responses from 26 patients.)

Note: with only 2 people in our survey reporting having Colorado tick fever, 5 people reporting tick borne encephilitis and 3 reporting tularemia, I judged them to not be large enough sample sizes to mean anything; I feel like I was already pushing it with a couple of the others, so I'm leaving these out.

Some day, we'll do the version of this survey that 2,000 people respond to. Then we'll really have a lot of charts to play with!

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.

Foggy, Tingly, Twitchy and Numbles

Today we start looking at the symptoms of chronic lyme. First, let's take a brief look at the "classic" lyme symptom, the bullseye rash (technically called an erythma migrans or EM rash).

Here's the CDC's lyme symptoms* chart, from confirmed cases, 2001-2010:

So the CDC says 70% of people get this particular rash. My survey results came back with less than 60% of people having rashes of any kind, and only 15-20% were EM rashes.  The Canadian Lyme Disease Foundation website says that EM rashes occur in less than 9% of cases. When I see such big differences in results like this, it makes me curious. I want to know why the numbers look so different. (This is a basic consensus principle: when you disagree, try to understand the underlying reasons, and talk at that level, rather than just butting heads about whose numbers are "right".)

So here's the best thought I've come up with so far on this one: The CDC only counts cases that fit certain testing profiles (and their strict criteria is much more narrow than my criteria for participating in this survey... self-reporting, which is as open as it gets) and we know that lyme comes in many strains. I wonder if the tests that are out there are most effective at detecting strains that do indeed show the EM rash in a larger percentage of the time? We know that strains vary in how they present: the European strains of lyme (called more properly "borrelia" in Europe) present somewhat differently than the American strains.

Of necessity, the tests were developed based on strains that could be studied most easily in the labs, and if the EM rash was showing up regularly, these probably were the cases being diagnosed early on and therefore got the most study attention. My hypothesis is that the closer to those strains studied originally, the more likely they are to show on these tests, and meet the CDC's criteria. I am guessing that EM rashes are more common with these strains than they are in the general lyme spirochyte population. Thus, I think it may well be the case that 70% of people with CDC positives get the rash while only 9-20% of all patients get it.

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Allright! Back to our survey. Here's the results from our question about what symptoms people have.

I realize this chart is VERY hard to read, but it was the best I could do with the couple pieces of technology I have at my disposal (and can competently use). If someone would like to make a better one, please do so!

Here's a blow up of the top 15 answers:

Looking at these top 15, you can see how lyme can be tough to diagnose, and why it is referred to as the "Great Imitator". Many of these top symptoms are vague, could be caused by all sorts of things and do, indeed, sound like you have the flu. If we can't rely on that EM rash to give us a clue, you can see how the level of initial misdiagnosis happens.

However, not all of the symptoms here are in the normal range for a flu. The most distinctive very common symptoms in this survey are the neurological ones. Let's call them the lyme quadruplets: Foggy, Tingly, Twitchy and Numbles. Foggy (brain fog) strikes almost 92% of us; Tingly (those weird sensations like your hand is falling asleep or an electrical current is coursing through your leg) hits almost 85% of us; Twitchy (jerking, spasms or little subtle jumps of random muscles) hit almost 80% of us; and Numbles (when your face, leg or just about anything else just spontaneously checks out on you) shows up in 79% of cases.

Need I mention that these are all weird, unpleasant and scary? And they are not associated with any flu I've ever had.

I'd say that if a patient presents with flulike symptoms plus one or more of our four neuro pals, lyme ought to be one of the first things suspected. Run a (good) test, try an experimental round of doxy and see what happens.

And... we can also see that there are no universal symptoms. Rashes (of any kind) don't even appear in the top 15 symptoms. 4% of cases don't notice a diminishment in energy, which is the closest thing to a universal experience lyme patients have. 8% of us can still think clearly, and that same number don't have body aches. Even the symptom named affectionately for the disease-- "lyme rage"-- only shows up in 53% of us. What this means is that a medical practitioner who gets too attached to a certain symptom being "the" lyme indicator will inevitably miss some cases if they aren't looking at the whole picture.

Another way to see lyme from a medical practitioner standpoint would be this: if the symptoms don't fit easily together, it could be lyme. You might have half a flu, a neurological symptom or two and night sweats. Does that make sense? Rely on this basic old wisdom: the simplest explanation is often the right one; instead of seeking out three explanations (flu plus brain tumor plus perimenopause) at least consider that it might be just one: lyme can be the medical equivalent of one stop shopping for all your ill health symptoms.


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* OK, can I just say how irritating it is to see medical professionals and organizations co-mingling actual symptoms (like the EM rash) with diagnoses (like encephalitis and arthritis). And what does "cardiac" mean exactly? There are probably so many things lumped into most of the categories, that it is hard to know how to make use of their chart. Grrr...