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Negative Lyme results test
I was diagnosed with Fibromyalgia some time ago. Developed a texted book Bulls-eye rash. Results came back as negative! Im so frustrated! Should i question this? I think thats a deffinate yes! Someone help me please!
That's good news indeed!
Until you get there, there's no way to tell for sure whether a particular doc understands Lyme the way we talk about it here on this this site (as a serious but treatable illness), or in the way so-called 'mainstream' medicine (the IDSA and CDC) view Lyme as a relatively minor ailment. (That's a big simplification, but you get the point.) That the PA has a good opinion of the doc is a good start.
Take care, and keep us posted. Fingers crossed for you (X) !
Until you get there, there's no way to tell for sure whether a particular doc understands Lyme the way we talk about it here on this this site (as a serious but treatable illness), or in the way so-called 'mainstream' medicine (the IDSA and CDC) view Lyme as a relatively minor ailment. (That's a big simplification, but you get the point.) That the PA has a good opinion of the doc is a good start.
Take care, and keep us posted. Fingers crossed for you (X) !
Hi went back to the PA (physians assitant) that origanally sent me for my lyme test. She is absolutely awesome! SOMEONE ACTUALLY LISTENED TO ME FOR ONCE! She is setting me up with a Rheumatologist. She said i have been thru to much and i should have been sent to s specialist a year ago. I know this is only a Baby step but I see a small light at the end of the tunnel. Im hoping they can help me. Im trying not to get to excited because i dont wont to be slammed to the ground again. But its a start. Im keeping my chin!
I don't see in your profile where you are located (near what big city in what state). If you like to share that with us, someone here might have some ideas on how to located a Lyme doc nearby.
You can also email to
---- contact [at] ILADS [dot] com ----
and tell them generally where you are located ('near Kansas City') and how far you can travel ('up to 100 miles'). ILADS is the main voluntary group for Lyme specialist MDs, and the organization is well known. They won't ask you for any information about yourself.
Sorry about your doc not 'believing' in Lyme. There is a lot of that out there in the medical community. Like the saying goes, 'Denial ain't just a river in Egypt.' If you find a new doc you want to try, you don't have to tell your current doc you are scouting around. It's still a free country.
You can also email to
---- contact [at] ILADS [dot] com ----
and tell them generally where you are located ('near Kansas City') and how far you can travel ('up to 100 miles'). ILADS is the main voluntary group for Lyme specialist MDs, and the organization is well known. They won't ask you for any information about yourself.
Sorry about your doc not 'believing' in Lyme. There is a lot of that out there in the medical community. Like the saying goes, 'Denial ain't just a river in Egypt.' If you find a new doc you want to try, you don't have to tell your current doc you are scouting around. It's still a free country.
I have not been back to my doctor because he says "there is no such thing as cronic lyme. Have not found another doctor yet. But i am looking.
Have you reported back to your doc how you are feeling after 10 days of doxy? It might be from 'die-off', where the Lyme bacteria release toxins as the medicine kills them. What does your doc say when you report back? I would certainly call the doc's office and leave a detailed message of how you are feeling, and ask for a call back.
Your current doc may be doing the right thing, but if you have any doubt, then a second opinion might be a prudent thing to do -- but first, call the doc's office and report your current symptoms. Let us know what you hear, okay?
Your current doc may be doing the right thing, but if you have any doubt, then a second opinion might be a prudent thing to do -- but first, call the doc's office and report your current symptoms. Let us know what you hear, okay?
I have been on Doxy for 10 days now and i still dont feel well. My ankles are swollen and my legs hurt and are pretty stiff. Is this from the Lyme or is it something else? i also still feel sick all the time. Something new for me is that I feel kind of shakie all over. It is not visible tho. Dont know what to think.
If you google Pennsylvania Lyme, there are some good resources out there. The state Lyme Disease Association has a link on its page for Patient Help. They might be able to help you find a good LLMD.
There is a newly passed law in PA creating a task force to increase awareness about Lyme. PA has the greatest total number of reported cases in the country. You might try to contact that new task force to tell them about the remarkable misunderstandings doctors have about the disease. It's not good enough to tell people to tuck pants into their socks. Doctors need more accurate information about how to recognize the disease and to treat it properly (such as "Always treat the rash" and "Antibody tests are usually false negtive in the first month." LLMDs know that many late stage patients test false negative, too, but the CDC refuses to acknowledge this.)
There is a newly passed law in PA creating a task force to increase awareness about Lyme. PA has the greatest total number of reported cases in the country. You might try to contact that new task force to tell them about the remarkable misunderstandings doctors have about the disease. It's not good enough to tell people to tuck pants into their socks. Doctors need more accurate information about how to recognize the disease and to treat it properly (such as "Always treat the rash" and "Antibody tests are usually false negtive in the first month." LLMDs know that many late stage patients test false negative, too, but the CDC refuses to acknowledge this.)
The textbook Lyme rash is ALWAYS definitive for Lyme, and should be treated even without a positive lab test.
Yes, you could have gotten it a while ago. Sometimes rashes appear or reappear later in the disease. I wouldn't say anything about this to your doctor, though, because they're taught that rashes appear only in the beginning. They're taught that late stage patients almost always test positive (it's actually the opposite due to decline in antibodies over time).
Even if you did just get Lyme, antibody tests are frequently false negative in the first month of infection. The rash trumps the tests. Nothing else causes a bulls eye rash.
If you're not well after a month of Doxycyline, then you'll need to get to a good LLMD (affiliated with ILADS) in order to get treated longer. A good LLMD will take you seriously and will treat you until you're well. A local Lyme support group could be really helpful in finding such a doctor.
Yes, you could have gotten it a while ago. Sometimes rashes appear or reappear later in the disease. I wouldn't say anything about this to your doctor, though, because they're taught that rashes appear only in the beginning. They're taught that late stage patients almost always test positive (it's actually the opposite due to decline in antibodies over time).
Even if you did just get Lyme, antibody tests are frequently false negative in the first month of infection. The rash trumps the tests. Nothing else causes a bulls eye rash.
If you're not well after a month of Doxycyline, then you'll need to get to a good LLMD (affiliated with ILADS) in order to get treated longer. A good LLMD will take you seriously and will treat you until you're well. A local Lyme support group could be really helpful in finding such a doctor.
I hear you. I don't disagree with your views about how aggravating the whole 'Lyme denial' approach is. Someday it will be sorted out, but till then, it's a matter of educating yourself and figuring out which docs you want to trust with your health.
At this point in the chaos of Lyme diagnosis and treatment, the best that can be done is to find a doc you trust, and go with it. You can change your mind later on, if you determine that it's not working out, but I don't recall hearing that happen -- that someone would go to an LLMD for treatment and then ditch it and go back to a neurologist or other doc who doesn't 'believe' in Lyme as a serious and treatable illness.
About how long you've had Lyme, you may never know when you were first infected, and as far as I can tell, it really doesn't matter how long you've had it. What counts is what you do from here on out. I never saw a tick on me, or had a bite, or had a rash at all. l just began feeling tired and confused and like I had a cross between the flu and a hangover -- 24/7, day after day. We had been back East tromping around grassy college campuses in the summer, and I probably got infected then, because it was a few weeks later in late summer/early fall when I started feeling under the weather.
Once I finally found my way to a Lyme doc, he asked questions about what symptoms I had and when it all started and so on, and I told him what I've just written here. He was fine with the lack of data, because it's not uncommon in Lyme and its co-infections.
What matters is getting a full diagnosis of what infections you have so that the right meds can be given for the right period of time. Look forward: that's where the future lies. What happened in the past is largely irrelevant, except for any history you can give the doc to help him/her figure out what to test you for and where to go from there.
I know how aggravating it is to be ill and not be able to pin it down -- but if you think about it, it's like getting the flu: you usually don't know who gave it to you, and once you've got it, you just have to deal with it. Same with Lyme. I think there's more of a psychological need to peg the date and place that Lyme infection occurred, just because it gives some reality to a very unreal-seeming disease.
- Break a leg? You get a cast.
- Get a runny nose and a cough? Take some cough medicine and get a box of tissues.
- Got Lyme? Find a good doc, and know that Lyme also affects the emotions and brain function, which confuse the patient on top of feeling lousy.
The foggy brain slowly goes away with treatment, and then one day you'l realize how much like your old self you are feeling. It took me months to get to that point, because I had been so ill, but someone else I know who wasn't so strongly affected by their particular infections didn't have as much ground to cover to get back to feeling normal and not so tired all the time.
Everybody's different. And you also have to *always* take into account that Lyme messes with your endocrine system and therefore your emotions and thought processes. Truly! It will go away and you'll get back to normal, but it takes time. For me, once I was done with the medications, it took me another 6 to 12 months to start to feel like the old me again ... the body has taken a terrible beating in all this, and it takes time to heal fully. So don't beat up on yourself -- more stress you don't need.
I used to even have little conversations with myself sometimes, as tho I were talking to a friend who needed some comfort and acceptance. There is something to the mind/body connection concept, and continuing to be kind to your beat up body can't hurt.
So eat well, sleep well, do some light exercise when you are up to it, like a walk around the block. But take it easy -- your body is relying on you to be kind. So you're not really alone, even when you feel isolated by Lyme: your oldest friend, your body, is quietly waiting for you to get well so you both feel like going out to play again. You'll get there.
At this point in the chaos of Lyme diagnosis and treatment, the best that can be done is to find a doc you trust, and go with it. You can change your mind later on, if you determine that it's not working out, but I don't recall hearing that happen -- that someone would go to an LLMD for treatment and then ditch it and go back to a neurologist or other doc who doesn't 'believe' in Lyme as a serious and treatable illness.
About how long you've had Lyme, you may never know when you were first infected, and as far as I can tell, it really doesn't matter how long you've had it. What counts is what you do from here on out. I never saw a tick on me, or had a bite, or had a rash at all. l just began feeling tired and confused and like I had a cross between the flu and a hangover -- 24/7, day after day. We had been back East tromping around grassy college campuses in the summer, and I probably got infected then, because it was a few weeks later in late summer/early fall when I started feeling under the weather.
Once I finally found my way to a Lyme doc, he asked questions about what symptoms I had and when it all started and so on, and I told him what I've just written here. He was fine with the lack of data, because it's not uncommon in Lyme and its co-infections.
What matters is getting a full diagnosis of what infections you have so that the right meds can be given for the right period of time. Look forward: that's where the future lies. What happened in the past is largely irrelevant, except for any history you can give the doc to help him/her figure out what to test you for and where to go from there.
I know how aggravating it is to be ill and not be able to pin it down -- but if you think about it, it's like getting the flu: you usually don't know who gave it to you, and once you've got it, you just have to deal with it. Same with Lyme. I think there's more of a psychological need to peg the date and place that Lyme infection occurred, just because it gives some reality to a very unreal-seeming disease.
- Break a leg? You get a cast.
- Get a runny nose and a cough? Take some cough medicine and get a box of tissues.
- Got Lyme? Find a good doc, and know that Lyme also affects the emotions and brain function, which confuse the patient on top of feeling lousy.
The foggy brain slowly goes away with treatment, and then one day you'l realize how much like your old self you are feeling. It took me months to get to that point, because I had been so ill, but someone else I know who wasn't so strongly affected by their particular infections didn't have as much ground to cover to get back to feeling normal and not so tired all the time.
Everybody's different. And you also have to *always* take into account that Lyme messes with your endocrine system and therefore your emotions and thought processes. Truly! It will go away and you'll get back to normal, but it takes time. For me, once I was done with the medications, it took me another 6 to 12 months to start to feel like the old me again ... the body has taken a terrible beating in all this, and it takes time to heal fully. So don't beat up on yourself -- more stress you don't need.
I used to even have little conversations with myself sometimes, as tho I were talking to a friend who needed some comfort and acceptance. There is something to the mind/body connection concept, and continuing to be kind to your beat up body can't hurt.
So eat well, sleep well, do some light exercise when you are up to it, like a walk around the block. But take it easy -- your body is relying on you to be kind. So you're not really alone, even when you feel isolated by Lyme: your oldest friend, your body, is quietly waiting for you to get well so you both feel like going out to play again. You'll get there.
I am from Williamsport, Pa. Iam so frustrated with all of the Bull that you have to go thru to even get someone to listen and not think im a pshyco! I know there's thousands of people out there going thru this....I guess Im letting it get to me to much. Could i have had this for a long period of time? I dont remember getting bit. Can they determine how long you have had it? I know there are different stages. Anything you can tell me would be a big help! And thanks for replying. Im feeling alone!
Welcome! We're glad to shares what we've learned --
Fibromyalgia is, to my understanding, a syndrome, meaning a collection of symptoms the docs don't really understand the underlying cause. People who end up being diagnosed with Lyme and other tickborne infections can easily get a 'fibro' diagnosis.
The test results that came back negative may well have been the not-very-accurate standard tests that nonLyme docs tend to use, a two-step test regimen of ELISA and Western blot. If the first one comes back positive, they do the 2d one; if the first one comes back negative, they send you home with a pat on the back.
So YES, a definite YES, that you should question it. Not only could you have Lyme, but also other separate infections that the nasty Lyme ticks often carry as well. Those infections need separate testing and often different meds from Lyme, but your *new* Lyme doc will figure that part out with you.
Your location information is blank, so don't know if you're in a part of the country where it's easy or hard to find a decent Lyme doc. Let us know where you are and we might have some ideas for you, tho you will notice that we do NOT post docs' names in public here, to protect our wonderful Lyme docs from harassment by clueless medical boards populated by docs like the one you just saw. (Sorry, I'm cranky today. Heh.)
You can also go straight to -- contact at ILADS (dot) org --
and tell them generally where you are ('near Omaha, Nebraska') and about how far you can travel for appointments. ILADS is short for International Lyme and Associated Diseases Society, the main voluntary group for docs who understand Lyme. Docs who understand Lyme are often referred to here as LLMDs, short for 'Lyme-literate medical doctors', meaning docs who truly understand Lyme and other tickborne diseases. It's not a degree or a credential, but rather a state of mind and intellect.
Let us know how you do and how we can help. We've all been where you are, one way or another. Welcome! Now let's see about getting you outta Lyme.
Fibromyalgia is, to my understanding, a syndrome, meaning a collection of symptoms the docs don't really understand the underlying cause. People who end up being diagnosed with Lyme and other tickborne infections can easily get a 'fibro' diagnosis.
The test results that came back negative may well have been the not-very-accurate standard tests that nonLyme docs tend to use, a two-step test regimen of ELISA and Western blot. If the first one comes back positive, they do the 2d one; if the first one comes back negative, they send you home with a pat on the back.
So YES, a definite YES, that you should question it. Not only could you have Lyme, but also other separate infections that the nasty Lyme ticks often carry as well. Those infections need separate testing and often different meds from Lyme, but your *new* Lyme doc will figure that part out with you.
Your location information is blank, so don't know if you're in a part of the country where it's easy or hard to find a decent Lyme doc. Let us know where you are and we might have some ideas for you, tho you will notice that we do NOT post docs' names in public here, to protect our wonderful Lyme docs from harassment by clueless medical boards populated by docs like the one you just saw. (Sorry, I'm cranky today. Heh.)
You can also go straight to -- contact at ILADS (dot) org --
and tell them generally where you are ('near Omaha, Nebraska') and about how far you can travel for appointments. ILADS is short for International Lyme and Associated Diseases Society, the main voluntary group for docs who understand Lyme. Docs who understand Lyme are often referred to here as LLMDs, short for 'Lyme-literate medical doctors', meaning docs who truly understand Lyme and other tickborne diseases. It's not a degree or a credential, but rather a state of mind and intellect.
Let us know how you do and how we can help. We've all been where you are, one way or another. Welcome! Now let's see about getting you outta Lyme.
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