Aa
Could this be Lyme???
I am 21, female. I have had strange symptoms start several moths ago, early December. I am wondering about Lyme.
I have for months been experiencing different parts of my body to have bad symptoms for 3 weeks or so at a time, sometimes at the same time. During an 'episode' they will be much worse. I will get numbness, tingling, burning, feeling of being stung by thousands of bees, and sensation of vibrating in legs. Also weakness. I am a gymnast, and it is ruining my practice. My balance is off, sometimes I become dizzy. I drop things a lot, hard to type (thank god for spell check) its like my hands are discooridinated, and impossible to write.
What throws it off is that I am a gymnast and present well, but not from a gymnastics perspective, in gym I am failing.
Problems seem to get worse or be brought on by heat. I am very intolerant to heat, working out and getting hot causes problems, so does high ambient temperature. I can not sleep at night already because no AC and I end up with the weird symptoms keeping me awake. I am most comfortable at about 55F for sleeping temps. here now it is 78 and its a killer!!! No problems with even most extreme cold though.
I have had MRI of brain and C spine with and without contrast, came back insignificant. Had one EMG but too late to catch symptoms, never get the emg for about 2 months. B12 is perfect, and so was thyroid.
Saw a neurologist today, after 6 month wait, but he said he is stumped because I don't have any lesions or abnormalities. He said I don't fit any physical or psychological diagnosis and his advice was "Just try to ignore it I guess." I was not impressed, especially after waiting 6 months and the guy to never even crack open my file.
To me it is very serious, it is ruining my gymnastics practice and aspiring career as an aerialist.
Boy, long post, tried to include detail without making it confusing.
What ever it may be. I am hoping to get some advice here on what to do, where to go? Any tests I should ask for?
Any feedback is appreciated, and thank you for reading my long article here..
I have for months been experiencing different parts of my body to have bad symptoms for 3 weeks or so at a time, sometimes at the same time. During an 'episode' they will be much worse. I will get numbness, tingling, burning, feeling of being stung by thousands of bees, and sensation of vibrating in legs. Also weakness. I am a gymnast, and it is ruining my practice. My balance is off, sometimes I become dizzy. I drop things a lot, hard to type (thank god for spell check) its like my hands are discooridinated, and impossible to write.
What throws it off is that I am a gymnast and present well, but not from a gymnastics perspective, in gym I am failing.
Problems seem to get worse or be brought on by heat. I am very intolerant to heat, working out and getting hot causes problems, so does high ambient temperature. I can not sleep at night already because no AC and I end up with the weird symptoms keeping me awake. I am most comfortable at about 55F for sleeping temps. here now it is 78 and its a killer!!! No problems with even most extreme cold though.
I have had MRI of brain and C spine with and without contrast, came back insignificant. Had one EMG but too late to catch symptoms, never get the emg for about 2 months. B12 is perfect, and so was thyroid.
Saw a neurologist today, after 6 month wait, but he said he is stumped because I don't have any lesions or abnormalities. He said I don't fit any physical or psychological diagnosis and his advice was "Just try to ignore it I guess." I was not impressed, especially after waiting 6 months and the guy to never even crack open my file.
To me it is very serious, it is ruining my gymnastics practice and aspiring career as an aerialist.
Boy, long post, tried to include detail without making it confusing.
What ever it may be. I am hoping to get some advice here on what to do, where to go? Any tests I should ask for?
Any feedback is appreciated, and thank you for reading my long article here..
I was reading through the whole thread up above to refresh my memory, and for the first time saw your post -- how very kind of you! It's a good group, and it pulled me through misery when I was ill. Thank you again -- we look forward to any thoughts and experiences of your own that you might be willing to share, but not required. :) Thanks again --
Sorry to hear you are experiencing the usual difficulty in getting diagnosed and treated for possible Lyme - an illness as serious as any other major illness (it can be lethal). For what little it is worth, I will add my input in response to your initial post about your concerns that your symptoms might be due to Lyme disease.
You said that you experience bad symptoms in certain parts of your body for "three weeks or so at a time in different parts of my body". While fatigue, as well as pain for some Lymies, seem ever-present in Lyme, usually other symptoms - such as numbness or visual blurring - are of shorter duration than 3 weeks in Lyme. Our symptoms can be identical to those of MS - but the MS symptoms persist longer than ours do. It would be normal in MS to have specific symptoms (that come and go) lasting for 3 weeks - but it is my understanding that this would be unusual in Lyme (except for fatigue and pain). So numbness lasting 3 weeks would be more suggestive of MS than of Lyme.
One thing that could be tried - since Lyme diagnosis is so elusive - is to just go ahead and treat for Lyme with Lyme-appropriate antibiotics and see what happens. If your symptoms improve on antibiotics, then you will know you are dealing with infection - likely Lyme. I remember when I took my first strong dose of Lyme antibiotic: I thought I was "home free" - since all of the sudden I was energized - with no fatigue, and no weakness, and was feeling normal again. I thought it was an "easy cure." Alas, the bugs figured things out and my symptoms came back - never fully going away - yet I was far better than I had been.
Regarding Lyme lab tests (even those from IGenix): A negative result does not mean you do not have Lyme: It essentially only means you had a lab test done. You could still have Lyme. Keep that in mind. I have been disappointed greatly in Igenix - which is not the lab it once was.
You said that you experience bad symptoms in certain parts of your body for "three weeks or so at a time in different parts of my body". While fatigue, as well as pain for some Lymies, seem ever-present in Lyme, usually other symptoms - such as numbness or visual blurring - are of shorter duration than 3 weeks in Lyme. Our symptoms can be identical to those of MS - but the MS symptoms persist longer than ours do. It would be normal in MS to have specific symptoms (that come and go) lasting for 3 weeks - but it is my understanding that this would be unusual in Lyme (except for fatigue and pain). So numbness lasting 3 weeks would be more suggestive of MS than of Lyme.
One thing that could be tried - since Lyme diagnosis is so elusive - is to just go ahead and treat for Lyme with Lyme-appropriate antibiotics and see what happens. If your symptoms improve on antibiotics, then you will know you are dealing with infection - likely Lyme. I remember when I took my first strong dose of Lyme antibiotic: I thought I was "home free" - since all of the sudden I was energized - with no fatigue, and no weakness, and was feeling normal again. I thought it was an "easy cure." Alas, the bugs figured things out and my symptoms came back - never fully going away - yet I was far better than I had been.
Regarding Lyme lab tests (even those from IGenix): A negative result does not mean you do not have Lyme: It essentially only means you had a lab test done. You could still have Lyme. Keep that in mind. I have been disappointed greatly in Igenix - which is not the lab it once was.
Oh, and his name and Lyme practice are available under google. It states so on his site. No idea what that means if the others are all so squirreled away, maybe he only treats by CDC standards... Guess I'll find out when I call.
Wish me luck!
Wish me luck!
Right right right. I understand. I was able to dig up 2 more, left messages they haven't called back. The first one was only POP so I may need to go to Lyme Tap if the other two are the same. I'm going to call back one of them right now because I think they were on lunch when I called earlier.
The doc I found who'd name was posted isn't in the listings, but he is in practice for lyme. I'll call him too.
The doc I found who'd name was posted isn't in the listings, but he is in practice for lyme. I'll call him too.
While it may seem like the Lyme groups are few and far away in your state, remember that in many states, it can be risky for a Lyme doc to be identified as such. The docs high up in the hierarchy in such states have the power to damage a Lyme doc's ability to practice medicine and even revoke the doc's license to practice medicine.
(There are basically two kinds of states: one where the law says the doc can practice in whatever fashion the doc sees fit, and if something goes wrong, it's between the doc and the patient and the patient's lawyer and a possible lawsuit for malpractice -- that's called 'freedom of conscience'. The other kind of state is where the medical board decides how docs should diagnose and treat patients, and the medical board rules.
There may appear to be only one Lyme doc in your state, but I'm guessing without looking it up that your state is one of the places where the state medical board can haul the doc up on charges for treating Lyme patients aggressively and then take the doc's license away. Docs in those states keep a VERY low profile, and we honor that by not posting their names here.
It would not be doable for us to post here on this website two lists -- which states are 'freedom of conscience' and which states are not -- and then try to explain to each person who posts here which states are restrictive and which are not, so that we can protect the names of docs in stricter states while talking freely about docs in other states. That's why we ask that NO doc's names be posted here in public.
So yes, there are Lyme groups in many many places, and there are MDs who treat in accordance with ILADS views in those places -- and just because you don't see the docs' names plastered all over this website does not mean there are no Lyme docs in your state. If people go blabbing docs' names everywhere, soon there will be some states with NO Lyme docs, because we will have tattled on the docs, and the medical boards in the restrictive states will have used our roadmap to shut down the Lyme docs in their states.
(There are basically two kinds of states: one where the law says the doc can practice in whatever fashion the doc sees fit, and if something goes wrong, it's between the doc and the patient and the patient's lawyer and a possible lawsuit for malpractice -- that's called 'freedom of conscience'. The other kind of state is where the medical board decides how docs should diagnose and treat patients, and the medical board rules.
There may appear to be only one Lyme doc in your state, but I'm guessing without looking it up that your state is one of the places where the state medical board can haul the doc up on charges for treating Lyme patients aggressively and then take the doc's license away. Docs in those states keep a VERY low profile, and we honor that by not posting their names here.
It would not be doable for us to post here on this website two lists -- which states are 'freedom of conscience' and which states are not -- and then try to explain to each person who posts here which states are restrictive and which are not, so that we can protect the names of docs in stricter states while talking freely about docs in other states. That's why we ask that NO doc's names be posted here in public.
So yes, there are Lyme groups in many many places, and there are MDs who treat in accordance with ILADS views in those places -- and just because you don't see the docs' names plastered all over this website does not mean there are no Lyme docs in your state. If people go blabbing docs' names everywhere, soon there will be some states with NO Lyme docs, because we will have tattled on the docs, and the medical boards in the restrictive states will have used our roadmap to shut down the Lyme docs in their states.
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