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LD without rash or joint pain?
3 yrs ago I had ticks on me but didn't think anything of it. I developed Bells Palsy about a month later. Since then I am developing a lot if new symptoms that sound like LD. I never had the bullseye rash and I only notice joint pain in one of my fingers where I had an injury yrs ago. Is this possible? I'm reading that joint pain is most common. My worst symptoms are facial pain, twitching, headaches and anxiety/panic.
I lived in San Antonio when I first got really sick and there were no LLMD back then. I am glad to hear it has changed.
I had similar symptoms as you. Jaw Pain, Strange Headaches, anxiety especially at night, and crazy muscle twitching among other things. I tested positive for Babesia and Anaplasma. Good luck with finding a good doc. I found a good one here in Texas and I am so grateful, it has made this journey less of a nightmare.
I never had a rash and compared to others, very little joint pain. Those of us with Neuro Lyme have more Neuro related problems like weakness in arms and legs, brain lesion, electric shock like pains.
To find a Lyme specialist who thinks up-to-date thoughts on the topic, you might email to
contact [at] ILADS [dot] org
and tell them generally where you live ("in the Lexington KY area") and how far you can easily travel for appointments, and they can send you names of MDs who have special interest and training in Lyme disease.
'ILADS' is short for International Lyme and Associated Diseases Society, a voluntary group for MDs all over the world (incl. many the US) who understand Lyme better than other docs who are going by somewhat outdated views. It's all politics, which in the medical world is a nasty combination with a infection like Lyme. ILADS has a website that might be of interest, but it's mainly aimed at MDs, so don't feel at sea if it's too technical.
Oddly enough, MDs in the infectious disease (ID) and neurology areas are often the most close-minded of all MDs, following now-outdated diagnostic and treatment standards, at least compared to the approach an ILADS member doc is likely to take. You'd think ID docs and neuros would be most on top of the situation, but generally speaking they often are not.
I got Lyme about 8-9 years ago on a trip back East, and it took 20 docs for one to finally even *test* me for Lyme. The test came back positive (!), but the doc told me I "couldn't possibly have Lyme" because I "didn't look sick enough" -- and I was plenty sick. That's the kind of stupidity to watch out for in a doc.
You will see the term LLMD, which is not a degree or a title, but patient slang for 'Lyme-literate medical doctor', meaning a doc who thinks more progressive thoughts about Lyme and takes it very seriously. Non-LLMD docs have been taught that Lyme is not a big deal, and no matter how sick you are, a couple weeks of doxycycline will cure you -- but the problem is, it might not. 'Doxy' can work in the first weeks after infection with Lyme, but many of us (including me) never saw the tiny tick or had the 'bullseye' shaped rash that some with Lyme will get soon after the bite.
Also, the tests that nonLLMDs run are different from those nonLLMDs use, and are more accurate because of the way the tests are structured. I won't go into the details here, but that's the outline.
NonLLMD docs believe they are doing the right thing, because the now outdated diagnostic and treatment standards for Lyme are still in effect in much of the medical community. In one way, Lyme patients are dealt with the same way the early AIDS patients were: I remember watching TV years ago when the white-coated doc from the Centers of Disease Control (CDC) in Washington DC went on TV to quell the rising panic over AIDS, and he flatly said that if you were not (1) gay or (2) Haitian, then you *could not* get AIDS. Well, that's just illogical, not to mention wrong.
Eventually the docs got things right about AIDS, but Lyme is still being mischaracterized by many infectious disease and rheumatology docs, among others. The firmly believe that a couple of weeks of doxy will take care of you ... but it's not necessarily true, unless your bite is very recent. Problem is, many of us (incl. me) never saw the tick or the rash, so it was several months before I was sick enough to work my way through 20 docs to one who finally ran the test, but then didn't know what to do with it.
So, all these are the reasons to find a Lyme specialist. I know it all sounds wacky, but that's just where Lyme is at the moment: an orphan ailment that really can be cured with the right diagnosis and right meds. No one here is medically trained that I know of, but we've all been where you are, if you indeed have Lyme.
Let us know how we can help. Take care!
contact [at] ILADS [dot] org
and tell them generally where you live ("in the Lexington KY area") and how far you can easily travel for appointments, and they can send you names of MDs who have special interest and training in Lyme disease.
'ILADS' is short for International Lyme and Associated Diseases Society, a voluntary group for MDs all over the world (incl. many the US) who understand Lyme better than other docs who are going by somewhat outdated views. It's all politics, which in the medical world is a nasty combination with a infection like Lyme. ILADS has a website that might be of interest, but it's mainly aimed at MDs, so don't feel at sea if it's too technical.
Oddly enough, MDs in the infectious disease (ID) and neurology areas are often the most close-minded of all MDs, following now-outdated diagnostic and treatment standards, at least compared to the approach an ILADS member doc is likely to take. You'd think ID docs and neuros would be most on top of the situation, but generally speaking they often are not.
I got Lyme about 8-9 years ago on a trip back East, and it took 20 docs for one to finally even *test* me for Lyme. The test came back positive (!), but the doc told me I "couldn't possibly have Lyme" because I "didn't look sick enough" -- and I was plenty sick. That's the kind of stupidity to watch out for in a doc.
You will see the term LLMD, which is not a degree or a title, but patient slang for 'Lyme-literate medical doctor', meaning a doc who thinks more progressive thoughts about Lyme and takes it very seriously. Non-LLMD docs have been taught that Lyme is not a big deal, and no matter how sick you are, a couple weeks of doxycycline will cure you -- but the problem is, it might not. 'Doxy' can work in the first weeks after infection with Lyme, but many of us (including me) never saw the tiny tick or had the 'bullseye' shaped rash that some with Lyme will get soon after the bite.
Also, the tests that nonLLMDs run are different from those nonLLMDs use, and are more accurate because of the way the tests are structured. I won't go into the details here, but that's the outline.
NonLLMD docs believe they are doing the right thing, because the now outdated diagnostic and treatment standards for Lyme are still in effect in much of the medical community. In one way, Lyme patients are dealt with the same way the early AIDS patients were: I remember watching TV years ago when the white-coated doc from the Centers of Disease Control (CDC) in Washington DC went on TV to quell the rising panic over AIDS, and he flatly said that if you were not (1) gay or (2) Haitian, then you *could not* get AIDS. Well, that's just illogical, not to mention wrong.
Eventually the docs got things right about AIDS, but Lyme is still being mischaracterized by many infectious disease and rheumatology docs, among others. The firmly believe that a couple of weeks of doxy will take care of you ... but it's not necessarily true, unless your bite is very recent. Problem is, many of us (incl. me) never saw the tick or the rash, so it was several months before I was sick enough to work my way through 20 docs to one who finally ran the test, but then didn't know what to do with it.
So, all these are the reasons to find a Lyme specialist. I know it all sounds wacky, but that's just where Lyme is at the moment: an orphan ailment that really can be cured with the right diagnosis and right meds. No one here is medically trained that I know of, but we've all been where you are, if you indeed have Lyme.
Let us know how we can help. Take care!
I agree with bdonahue's comments -- finding a Lyme specialist is exactly what I would do. There are many MDs who *think* they are Lyme specialists, but unknowingly follow what are now (in my reading and in my opinion) outdated diagnostic and treatment approaches.
If you would like help finding an up-to-date Lyme specialist near you, please let us know and we can give you some clues. There is a bit of a war going on in the medical world over Lyme, so finding the right doc is critical.
Take care and let us know how we can help!
If you would like help finding an up-to-date Lyme specialist near you, please let us know and we can give you some clues. There is a bit of a war going on in the medical world over Lyme, so finding the right doc is critical.
Take care and let us know how we can help!
As you will read on these forums everybody's symptoms are different. The ones you mention, bells palsy, anxiety/panic, and twitching are all common with lyme and co infections. May I suggest finding a lyme literate Dr and get tested. You don't want to ignore this because it can effect every part of your body. Best of luck.
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