Lyme Disease / Borrelia advice needed!
January 10, 2008 8:05 AM Subscribe
Lyme Disease / Borrelia adviced needed... I finally got the results back from all the tests I had done right after I posted a question on AskMeFi about which tests I should ask for. Everything came back negative except the ones I already knew about (I'm allergic to pollen and dustmite) and, to my great surprise, the bacteria that causes Lyme Disease (Borrelia).
My doctor admitted not knowing a whole lot about it except when someone comes in with the tell-tale rash or when the symptoms are quite severe and very obviously due to Lyme Disease (musculoskeletal pain or even neurologic symptoms). I have had neither. She called a microbiologist at the local hospital and he advised her not to treat me unless I exhibit clear symptoms. This doesn't really put my mind at ease, I have to say.
I would love some feedback on my present situation from you AskMeFiers. As I wrote in my previous post on this: "I am a 36 year old male with a healthy lifestyle (plenty of exercise, fruit/vegetables, no meat, no smoking or alcohol) but the last three months I have been getting ill or feeling under the weather an awful lot. Nothing major (mostly swollen glands and feeling very tired) but still really frustrating. I like to figure what is going on with me." I have been feeling better the last month but have noticed that I'm having trouble getting back to my previous level of fitness (similar exercise regime but with lesser or slower results). It is tempting to think all of this is because of the Borrelia in my blood but symptoms as vague and relatively mild as these could of course be caused by any number of things.
Any advice as to what I should do and/or expect? I'm already planning to see an expert but I would like to be prepared...
My doctor admitted not knowing a whole lot about it except when someone comes in with the tell-tale rash or when the symptoms are quite severe and very obviously due to Lyme Disease (musculoskeletal pain or even neurologic symptoms). I have had neither. She called a microbiologist at the local hospital and he advised her not to treat me unless I exhibit clear symptoms. This doesn't really put my mind at ease, I have to say.
I would love some feedback on my present situation from you AskMeFiers. As I wrote in my previous post on this: "I am a 36 year old male with a healthy lifestyle (plenty of exercise, fruit/vegetables, no meat, no smoking or alcohol) but the last three months I have been getting ill or feeling under the weather an awful lot. Nothing major (mostly swollen glands and feeling very tired) but still really frustrating. I like to figure what is going on with me." I have been feeling better the last month but have noticed that I'm having trouble getting back to my previous level of fitness (similar exercise regime but with lesser or slower results). It is tempting to think all of this is because of the Borrelia in my blood but symptoms as vague and relatively mild as these could of course be caused by any number of things.
Any advice as to what I should do and/or expect? I'm already planning to see an expert but I would like to be prepared...
Lymes Disease is also known as the great imitator....there are no clear symptoms. If you have the bacteria I would get it treated. The same happens with mold poisoning as well...the symptoms can be very hard to diagnose because they are often specific to the individual.
Also, asking here is good and all, but I would definitely set up an appointment with another doctor for a second opinion.
posted by samsara at 8:19 AM on January 10, 2008
Also, asking here is good and all, but I would definitely set up an appointment with another doctor for a second opinion.
posted by samsara at 8:19 AM on January 10, 2008
I recommend making an appointment with an internal medicine doctor/clinic at a teaching hospital. Also, I think you are understating things. You take the time to post here, you must feel pretty different from normal. When you go to the doctor, make that clear, do not say things like "Nothing major (mostly swollen glands and feeling very tired) but still really frustrating."
Did you try the recommendations in the previous thread? Did you try eliminating wheat from your diet? If that is the cause you should feel better rather quickly (if you are anything like me). Eating wheat gives me the feeling that I have the flu, without all of the symptoms.
Increase the amount you sleep each night.
The only other thing I can think to recommend is to try living somewhere else for a while. Maybe you can find a cheap furnished sublet somewhere close to you for three weeks? It could be mold and just getting away from it could help. But...the mold could also be at work. Do you sit under a vent at work?
Most importantly: Remember what it is like to feel normal. How you feel now will NOT become your new "normal." You will figure out what is wrong with you and get back to normal. Persistence is how I figured out my wheat problems (and no thanks to the doctors, either).
posted by Eringatang at 9:01 AM on January 10, 2008
Did you try the recommendations in the previous thread? Did you try eliminating wheat from your diet? If that is the cause you should feel better rather quickly (if you are anything like me). Eating wheat gives me the feeling that I have the flu, without all of the symptoms.
Increase the amount you sleep each night.
The only other thing I can think to recommend is to try living somewhere else for a while. Maybe you can find a cheap furnished sublet somewhere close to you for three weeks? It could be mold and just getting away from it could help. But...the mold could also be at work. Do you sit under a vent at work?
Most importantly: Remember what it is like to feel normal. How you feel now will NOT become your new "normal." You will figure out what is wrong with you and get back to normal. Persistence is how I figured out my wheat problems (and no thanks to the doctors, either).
posted by Eringatang at 9:01 AM on January 10, 2008
Best answer: It's a complicated question and depends on which particular tests you had. The general recommendation for evaluating people suspected of having Lyme disease is a two-step test that starts with an ELISA which is fairly sensitive but has a lot of false positives, and if that test is positive, testing the same blood sample by Western blot. You don't make clear exactly which of these were done so it's tough to say. If the above approach wasn't taken, you may need to be retested, and if it was taken and both studies were positive, I'd also recommend a second opinion, possibly from an Infectious Disease specialist if necessary.
posted by drpynchon at 9:12 AM on January 10, 2008
posted by drpynchon at 9:12 AM on January 10, 2008
Hey, when you were in SF did you end up going biking on Angel Island? Google "angel island lyme disease"
posted by Eringatang at 9:27 AM on January 10, 2008
posted by Eringatang at 9:27 AM on January 10, 2008
You've already got the right answer (confirm tests, speak with a specialist since it's an uncommon and not-easy disease to treat right), but I'd like to say thanks for posting the follow-up to the original. As a student, I'm pretty happy that the right diagnosis was on my mental short list.
posted by a robot made out of meat at 10:25 AM on January 10, 2008
posted by a robot made out of meat at 10:25 AM on January 10, 2008
Be very careful. I have a relative who was feeling generally not good for quite a while. The initial test for Lyme came back negative, so his doctor ruled it out.
By the time a different test came back positive more than a year later, he had suffered permanent neurological damage as well as damage to his liver. He'll never get back to "normal." Don't let this go. This is one situation where a prophylactic course of antibiotics really might do more good than harm. Make sure you consult a Lyme specialist.
posted by clarkstonian at 11:06 AM on January 10, 2008
By the time a different test came back positive more than a year later, he had suffered permanent neurological damage as well as damage to his liver. He'll never get back to "normal." Don't let this go. This is one situation where a prophylactic course of antibiotics really might do more good than harm. Make sure you consult a Lyme specialist.
posted by clarkstonian at 11:06 AM on January 10, 2008
I had Lyme disease about five years ago, and never got the telltale rash.
Also: along with all of the other deceptive and exasperating symptoms, people with Lyme can go through phases of feeling better. Don't assume you can rule anything out that way.
posted by gnomeloaf at 11:13 AM on January 10, 2008
Also: along with all of the other deceptive and exasperating symptoms, people with Lyme can go through phases of feeling better. Don't assume you can rule anything out that way.
posted by gnomeloaf at 11:13 AM on January 10, 2008
I had Lyme disease for 6 years and finally last February I was introduced to a doctor who began a new treatment regimen for it. During the treatment the first thing my doctor prescribed was Levoquin. Typically this is used to treat sinusitis but he had found over the years that in Lyme patients it brings out an onset of the symptoms and so he uses it as a sort of "gauge" to determine how severe you are affected. After a 3 month treatment session with several powerful antibiotics (which required a medical leave of absence from my job) the Levoquin was re administered and no longer brought out the Lyme symptoms. So far so good, it's been a year with no complaints for me.
Initially I had an obvious case of Lyme which was treated but then for five years I had no apparent symptoms. A general run-down feeling and fatigue are not uncommon though and with Lyme you will tend to get very sick compared to others when you get something trivial like a 3 day head cold.
The truth is that when it comes to Lyme, there really are no "experts". My family physician, like most doctors, doesn't believe it to be treatable after any considerable length of time and she didn't aggressively treat it. My current doctor is active in pushing the field to identifying the many types and developing effective treatments which are finally making the Titer tests much more accurate. The chances of overcoming the disease are more of a reality now than ever before.
He is confident, as am I, that it is curable with the proper treatment. In your (OP) case, get two or three opinions and rounds of tests because otherwise you risk living with it like I did and it will affect your lifestyle whether you realize it is an issue or not.
posted by jtoth at 11:23 AM on January 10, 2008
Initially I had an obvious case of Lyme which was treated but then for five years I had no apparent symptoms. A general run-down feeling and fatigue are not uncommon though and with Lyme you will tend to get very sick compared to others when you get something trivial like a 3 day head cold.
The truth is that when it comes to Lyme, there really are no "experts". My family physician, like most doctors, doesn't believe it to be treatable after any considerable length of time and she didn't aggressively treat it. My current doctor is active in pushing the field to identifying the many types and developing effective treatments which are finally making the Titer tests much more accurate. The chances of overcoming the disease are more of a reality now than ever before.
He is confident, as am I, that it is curable with the proper treatment. In your (OP) case, get two or three opinions and rounds of tests because otherwise you risk living with it like I did and it will affect your lifestyle whether you realize it is an issue or not.
posted by jtoth at 11:23 AM on January 10, 2008
If you hit a dead end with regards to Lyme disease, you should be aware of some of the current theories regarding Chronic Fatigue Syndrome (and/or Fibromyalgia). As I understand it, they're arguing that (1) a micro-organism invades, (2) the immune system attacks it, and (3) the immune response spirals out of control, refusing to shut down and sucking up more and more energy.
If you're interested in pursuing this line of inquiry, let me know and I'll get you some references and so forth.
posted by Clay201 at 12:15 PM on January 10, 2008
If you're interested in pursuing this line of inquiry, let me know and I'll get you some references and so forth.
posted by Clay201 at 12:15 PM on January 10, 2008
Unfortunately, Lyme Disease often involves an autoimmune reaction (one of the bacterial proteins looks like a human protein) so the symptoms often persist even after the bacteria are cleared. This makes treatment difficult if it's past the point where antibiotics would help.
posted by fermezporte at 3:26 PM on January 10, 2008
posted by fermezporte at 3:26 PM on January 10, 2008
Simple answer: AFAIK, there isn't such a thing as asymptomatic Lyme disease. At least that's what we are being taught. One shouldn't even test for Lyme, if the patient has no symptoms of Lyme. Don't believe all the hype you read on the "Internets"; any moron can put up a web site and become a Lyme "expert" overnight.
Disclaimer: I am not a doctor (yet). Go see an Infectious Disease specialist.
posted by Ervin at 10:55 PM on January 10, 2008
Disclaimer: I am not a doctor (yet). Go see an Infectious Disease specialist.
posted by Ervin at 10:55 PM on January 10, 2008
The false positive rate on the Lyme titer is very high. I will go so far as to say that in my opinion it is the worst test available in all of medicine. I would never perform it on any patient for any reason.
posted by ikkyu2 at 11:18 PM on January 10, 2008
posted by ikkyu2 at 11:18 PM on January 10, 2008
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posted by phil at 8:18 AM on January 10, 2008