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Equivocal results- Symptoms?
I became very fatigued and weak several weeks ago. I was having difficulty standing or walking for any lengthe of period more than a couple of minutes. I was often suffering from presyncope. These symptoms alone stopped me from driving and going out in public without having someone with me, incase I were to actually faint (it happens suddenly and my legs become weak).
The presyncope has happend on and off since May, but nothing as frequent as what it has been.
Over these past four days, I've had a range of bizarre and unexplainable symptoms that come and go. One day, I had a headache that lasted a full day ranging from mild to severe and was gone the following day.
What has been consistent is pain, but it's traveling pain and different types of pain. My muscles ache (like they are being tightly squeezed) and they feel like they are burning simultaneously. It's usually in my forearms, upper left arm, or my shoulder, shoulder blades, or in the middle of my back up to my neck. Even just pressing a finger on any of these areas produces pain. I've also been experiencing intense pain in my right knuckle joints and they swell a bit. I would gather it's something like arthritis. I occasionally get knee pain as well.
I'm relatively young- at my age, there is no reason I'd have symptoms like these and there is no history in my family of anything like this.
I have seen my healthcare provider twice in recent weeks due to some of these symptoms. On my second visit, I asked to be tested for Lyme disease. It's rampant in my area.
The results came back a few days ago with being "equivocal."
My provider wants me to go back in three weeks to be tested again.
I have experienced heart palpitations and have been having frequent panic attacks these past few weeks and this is not like me, but EKG's and other lab work is coming back fine.
I don't want to stress about this for another three weeks- I feel in rough shape. I do nothing but rest and try not to exert myself.
I don't remember getting bit, but i had been hiking in the woods often and I've been hyper sensitive to everything- a lot of things irritate my skin.
Does this sound like this could be Lyme ?
The presyncope has happend on and off since May, but nothing as frequent as what it has been.
Over these past four days, I've had a range of bizarre and unexplainable symptoms that come and go. One day, I had a headache that lasted a full day ranging from mild to severe and was gone the following day.
What has been consistent is pain, but it's traveling pain and different types of pain. My muscles ache (like they are being tightly squeezed) and they feel like they are burning simultaneously. It's usually in my forearms, upper left arm, or my shoulder, shoulder blades, or in the middle of my back up to my neck. Even just pressing a finger on any of these areas produces pain. I've also been experiencing intense pain in my right knuckle joints and they swell a bit. I would gather it's something like arthritis. I occasionally get knee pain as well.
I'm relatively young- at my age, there is no reason I'd have symptoms like these and there is no history in my family of anything like this.
I have seen my healthcare provider twice in recent weeks due to some of these symptoms. On my second visit, I asked to be tested for Lyme disease. It's rampant in my area.
The results came back a few days ago with being "equivocal."
My provider wants me to go back in three weeks to be tested again.
I have experienced heart palpitations and have been having frequent panic attacks these past few weeks and this is not like me, but EKG's and other lab work is coming back fine.
I don't want to stress about this for another three weeks- I feel in rough shape. I do nothing but rest and try not to exert myself.
I don't remember getting bit, but i had been hiking in the woods often and I've been hyper sensitive to everything- a lot of things irritate my skin.
Does this sound like this could be Lyme ?
If you search online for
ILADS referral email
you will get a link that leads you to that part of the ILADS website. Tell them approx. where you are ('near Boston' or whatever) and about how far you can drive, or whatever else they ask that's pertinent. They have changed the 'referral page' structure recently and I'm not familiar with it, but it still exists, just in a different form from before.
If you don't like the first Lyme doc you see, get another name and try again. I don't think there is a personality screening test done on the docs, so you might get one from outer space, if you know what I mean. Lyme treatment often extended for months (mine was close to a year, given that I had Lyme and one additional co-infection brought by the 'Lyme' tick), so it's somebody you'll want to be comfortable with and reasonably easy to get to ... tho people used to *fly* in to see my doc.
On the flip side, once established with the doc, appointments may be only once a month, hence the ability to fly or drive a ways. I like close-by docs myself, in case of needing to see the doc for some reason along the way.
Given where you are, you're probably sitting a short drive from a Lyme doc right now. :) My motto about Lyme treatment: "Whatever it takes." Go for it! Let us know how you do, okay?
ILADS referral email
you will get a link that leads you to that part of the ILADS website. Tell them approx. where you are ('near Boston' or whatever) and about how far you can drive, or whatever else they ask that's pertinent. They have changed the 'referral page' structure recently and I'm not familiar with it, but it still exists, just in a different form from before.
If you don't like the first Lyme doc you see, get another name and try again. I don't think there is a personality screening test done on the docs, so you might get one from outer space, if you know what I mean. Lyme treatment often extended for months (mine was close to a year, given that I had Lyme and one additional co-infection brought by the 'Lyme' tick), so it's somebody you'll want to be comfortable with and reasonably easy to get to ... tho people used to *fly* in to see my doc.
On the flip side, once established with the doc, appointments may be only once a month, hence the ability to fly or drive a ways. I like close-by docs myself, in case of needing to see the doc for some reason along the way.
Given where you are, you're probably sitting a short drive from a Lyme doc right now. :) My motto about Lyme treatment: "Whatever it takes." Go for it! Let us know how you do, okay?
Thank you. I made this profile quickly. I live in an upper state on the East Coast.
I am not familiar with any Lyme doctors in my area, but would gather that there would be a few. Lyme in my state is becoming more common. I'm above Connecticut.
I'll definitely google and see what comes up. Thank you for the reply and the information.
I am not familiar with any Lyme doctors in my area, but would gather that there would be a few. Lyme in my state is becoming more common. I'm above Connecticut.
I'll definitely google and see what comes up. Thank you for the reply and the information.
Welcome to MedHelp Lyme -- we're glad to share with you what we each have learned through our own dances with dear old Lyme.
Your profile doesn't say what part of what country you are in (US? Canada? elsewhere?), and that can make a big difference in how you approach finding a doc for what is ailing you.
It's good that your doc was willing to do the Lyme test, but it sounds like s/he may not be very familiar with it -- which is understandable, since there is much confusion in the medical world about Lyme and how to diagnose and treat it.
You say, "The results came back a few days ago with being 'equivocal' " and that your doc "wants me to go back in three weeks to be tested again." I'm not medically trained, but having gone through Lyme and a bunch of clueless docs (some of them quite well meaning, as yours sounds to be), I have learned that many MDs who mean well are simply not experienced enough to deal with Lyme; instead they are learning as they go, and because there is much confusion in the medical world about Lyme, those well-meaning docs are getting contradictory information from their reading and learning, so they delay and read and study more, trying to do the right things -- or they jump in and do the wrong things.
Your doc didn't get much guidance from the 'equivocal' test result, but in my experience as a Lyme patient, an experienced Lyme doc will not just wait to see what happens next. If there is a strong suspicion of Lyme (as with your symptoms and the "maybe yes/maybe no"), then an experienced Lyme doc would not wait around to see what bad thing happens next.
In the Lyme world, so I understand, any test result that is something other than absolutely, clearly negative should be read as a weak positive result. If there were nothing for the tests to react to, the test result would be simply negative: No Lyme Here. But when the test result is 'maybe yes/maybe no', the result should be read as POSITIVE. Otherwise there would be a big fat zero on the test.
I am guessing that this reaction from your doc may be because the doc is simply not experienced in dealing with Lyme. In this situation, I would find an experienced Lyme MD without delay. Your current doc means well, but is groping along trying to figure out the crazy world of Lyme.
The worst that a Lyme MD will tell you is that you do not have Lyme at all -- and what a wonderful thing that would be to hear! But if you do have Lyme, then the sooner you get a full diagnosis and treatment, the better.
The heart palpitations and panic attacks can, from what I have read previously, be symptoms of Lyme. If they are symptoms of something else, then that's good --- but you have to go to a good Lyme doc to get an accurate view on that point.
I'll stop now, because I keep saying the same thing over and over -- please do see a Lyme specialist as soon as possible. The worst you will find out is that you do *not* have Lyme. If you do not get to a wise Lyme doc as soon as possible, things could continue to get worse and be hard to treat.
I never saw a tick or a red mark or anything like that on me -- it's the kind of symptom that is useful for diagnosis IF the symptoms shows up. If the symptom does NOT show up, that does not mean you do not have Lyme.
Do you have ideas on how to find a Lyme specialist near you? If you need help doing so, please let us know and we can try to give you some ideas how to find one.
You ask: "Does this sound like this could be Lyme?" It could be ... but only an experienced Lyme doctor can say for certain. Please don't wait!
Your profile doesn't say what part of what country you are in (US? Canada? elsewhere?), and that can make a big difference in how you approach finding a doc for what is ailing you.
It's good that your doc was willing to do the Lyme test, but it sounds like s/he may not be very familiar with it -- which is understandable, since there is much confusion in the medical world about Lyme and how to diagnose and treat it.
You say, "The results came back a few days ago with being 'equivocal' " and that your doc "wants me to go back in three weeks to be tested again." I'm not medically trained, but having gone through Lyme and a bunch of clueless docs (some of them quite well meaning, as yours sounds to be), I have learned that many MDs who mean well are simply not experienced enough to deal with Lyme; instead they are learning as they go, and because there is much confusion in the medical world about Lyme, those well-meaning docs are getting contradictory information from their reading and learning, so they delay and read and study more, trying to do the right things -- or they jump in and do the wrong things.
Your doc didn't get much guidance from the 'equivocal' test result, but in my experience as a Lyme patient, an experienced Lyme doc will not just wait to see what happens next. If there is a strong suspicion of Lyme (as with your symptoms and the "maybe yes/maybe no"), then an experienced Lyme doc would not wait around to see what bad thing happens next.
In the Lyme world, so I understand, any test result that is something other than absolutely, clearly negative should be read as a weak positive result. If there were nothing for the tests to react to, the test result would be simply negative: No Lyme Here. But when the test result is 'maybe yes/maybe no', the result should be read as POSITIVE. Otherwise there would be a big fat zero on the test.
I am guessing that this reaction from your doc may be because the doc is simply not experienced in dealing with Lyme. In this situation, I would find an experienced Lyme MD without delay. Your current doc means well, but is groping along trying to figure out the crazy world of Lyme.
The worst that a Lyme MD will tell you is that you do not have Lyme at all -- and what a wonderful thing that would be to hear! But if you do have Lyme, then the sooner you get a full diagnosis and treatment, the better.
The heart palpitations and panic attacks can, from what I have read previously, be symptoms of Lyme. If they are symptoms of something else, then that's good --- but you have to go to a good Lyme doc to get an accurate view on that point.
I'll stop now, because I keep saying the same thing over and over -- please do see a Lyme specialist as soon as possible. The worst you will find out is that you do *not* have Lyme. If you do not get to a wise Lyme doc as soon as possible, things could continue to get worse and be hard to treat.
I never saw a tick or a red mark or anything like that on me -- it's the kind of symptom that is useful for diagnosis IF the symptoms shows up. If the symptom does NOT show up, that does not mean you do not have Lyme.
Do you have ideas on how to find a Lyme specialist near you? If you need help doing so, please let us know and we can try to give you some ideas how to find one.
You ask: "Does this sound like this could be Lyme?" It could be ... but only an experienced Lyme doctor can say for certain. Please don't wait!
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