Over the next couple months, I'm looking forward to completing the first round of Lyme Voices survey blogging, and am brewing plans for future work. Thanks for hanging in there and being part of the adventure with me.
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Now, where were we...
...ah, yes. We've arrived at the part of the survey that deals with the early days of our infections. It seems that most of us had no idea what we were in for in those early days. Some of us don't even know when we got infected, since there were no dramatic early symptoms... no rash, or flu-like illness, or arthritis, the kinds of things we are told to expect.
Here's what the survey said. 58.5% of us don't remember getting bitten by a tick, and only 20.7% had a classic bullseye rash.
Of course, this is a survey of folks with chronic lyme. It seems far more likely that lyme will get caught and treated in the early days if there is a big fat bullseye to clue us in to what we are dealing with. While it is disturbing that almost 21% of us had a bullseye and still ended up with the chronic form, I'm thinking this isn't so much because bullseyes don't show up in 79% of all cases but that you are much more likely to end up with a chronic illness if you aren't "lucky" enough to get this no-brainer symptom.
For the 41.5% of us who remember a tick bite around the time we first got sick, it seems quite likely that that was how we got lyme. But what about the rest? I asked folks to speculate on how they think they got it (knowing that it is probably impossible to say for sure where you got it unless the tick is found and tested and your blood cultures the same strain that they found in the tick.)
And here's what survey respondents said:
I find it interesting that only about 3/4 of us feel sure we got this from a tick bite, as the story that "people get lyme from ticks. period" is still so prominent.
The lyme spirochyte has been found in all bodily fluids (lending credence to the idea that it is both sexually transmittable, and transmittable through breast milk) and apparently can be transmitted by various insects, not just ticks. There have also been babies born with lyme already in their systems.
And of course, lyme is in our blood. The Red Cross won't accept blood from people with lyme. Here's what their guidelines say:
"Accept persons with Lyme disease if they were treated, the disease resolved and at least 1 year has passed. Those with CHRONIC Lyme disease are not eligible to donate blood."
Whether or not we think it is wise to accept blood from people once treated that have been "resolved" for only a year, it is good to note that they take lyme seriously enough to include it in their proscribed conditions list. And it does raise the possibility that some of our mystery cases may have come from the nation's blood banks. (Now that opens a whole can of scary thought worms, doesn't it?)
In my mind, all of this provides plenty of reasons for doctors to not eliminate lyme from the possible diagnoses they consider simply because you don't live in an area where lyme is common.
Even granting for a moment that there is something sensible about the idea that lyme "isn't" in some places (when even the CDC charts show it clearly in every state in the continental US) I don't think you can really eliminate lyme as a possibility without taking into account if the person has:
- ever had a blood transfusion,
- might have gotten it in the womb or from nursing
- ever lived in or visited a place where lyme is common
- ever had sex with someone who ever lived or visited a place where lyme is common
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So how did we end up having the chronic form of this disease? This next question may shed some light on it. The answer looks pretty clear form this: most of us simply weren't treated in the early stages. Only about 25% of us got some kind of treatment when our symptoms first emerged, and I'd be very surprised if many of us got more than a couple weeks of antibiotics at that time.
I find this second category to be particularly interesting. Almost 1/3 of us got sick very gradually. This thing just sneaks up on so many of us, and then we look back from the vantage point of having a diagnosis that makes sense, and you can see the patterns... but five (or ten or however many) years earlier, we probably would have said that nothing major was amiss.
I'm imagining (because this is the case for me) that some of us who got antibiotics right away then had a period of being relatively symptom free, and then the symptoms re-emerged very gradually. I spent about 5 years not realizing I was getting progressively more sick before I really tuned in to something major being "off".
And in my case, the time delay between the initial bite and infection (in 1997) plus the message that I might have "lingering symptoms that don't mean you have an ongoing infection" made it harder for me to connect the dots when symptoms started to come back out in 2005.
So a chunk of people who did have treatment initially could probably also have answered in one of those top two categories for our re-emerging illnesses.
The bottom line as I see it here is that if we are going to prevent chronic lyme, it isn't so much about tucking our socks into our pants when we go outside; it is more about the medical profession learning to pick up on subtler cues and recognize patterns over time, and perhaps the general public having their awareness raised to think about lyme when things start to feel off.
We need different medical training, and more awareness about those early signs. If this doesn't happen, then many, many more people are going to be condemned to the slow slide into chronic illness.
Another great blog! I couldn't agree more with doctors needing to be better educated about early onset symptoms. Could have saved us all from either being misdiagnosed, or going undiagnosed for such long periods of time. They say the "key" is to catch it early and respond quickly.
ReplyDeleteWhen will the medical community catch up and realize this is an epidemic?
Thank you Maikwe!
Kath <3
You make several very important points -- and I'm not seeing these raised enough in the mainstream media. Sexual transmission, mother-to-fetus and infection via breast milk and blood transfusion are mostly validated scientifically (via blood isn't - yet). Considering the infection rate in just the US, we could be seeing a high % of younger people with congenital Lyme (and Babesiosis and probably others).
ReplyDeleteAnyone who is pregnant and suspects she has Lyme (or other TBD) might benefit from watching Dr. Jones' presentation at the 2011 ILADS conference - you can purchase the video at their website. He works exclusively with pregnant women and children.
At 2011 ILADS Conference, Dr. Jones said that infected fathers might be able to infect the fetus with the sperm at the time of conception! Semen has been found to contain spirochetes. So has tears. I've wondered if my tears fell in someone's open cut if that could infect.
Someone else who spoke at the 2011 conference (forget who) talked about a study done with mice. All were female. Some had been infected with Lyme and others were known to be free of infection. These mice were put into a cage together (?don't know how long) and then all were tested for Lyme. Some of the previously uninfected mice had become infected. The speaker said this suggests that saliva might transmit Lyme as the only behavior seen in those mice suggestive of transmission was shared food, water and perhaps grooming.
What this said to me was that gay sex among women might transmit Lyme. (thanks for all your work, Ma'ikwe! ~chispa)
Wow, Chispa! That mouse study is pretty interesting. The saliva thing is so scary!! That means even kissing might be able to transmit it, or sharing a water bottle or glass with someone, or a bite of food off someone else's fork.
ReplyDeleteUgh. Yes, Kath, indeed, when will this be recognized for the epidemic it is.