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..
"If you had just seen your primary care doctor just recently and had lab work, you do have the right to request additional labs (you just had the reg Lyme test) including the Igenix panel, which is usually out of pocket."
A couple of comments:
(1) You can request additional lab work, but the MD is not obligated to order it, and some/many MDs do not see the need for any testing beyond the older ELISA and Western blot tests. It can't hurt to ask, but non-Lyme specialists may decline, and if they order IGeneX testing, the doc may not know what to do then except the largely outdated treatment of a couple of weeks of doxycycline. If that happens, then consider finding a Lyme specialist who think bigger thoughts. Let us know if you want help finding a Lyme doc near you.
(2) IGeneX testing is not necessarily "usually out of pocket". It depends on your insurance company. My insurance paid for the testing just like anything else.
(3) "You should not have to require another visit first w/ your PCP in August." It is up to your doc to recommend a visit if s/he think it should be done, and the doc may have legitimate reasons for seeing you again.
(4) "Your PCP may have to give you order paperwork and you probably need to go to the local hosp lab to draw since the lab spec handling is specific and needs to be shipped to the lab in CA." I would not assume this either. My blood was drawn not at a hospital (and there were several nearby), but at an office/clinic that handles just testing -- less hassle, maybe less expensive. Your doc may be able to recommend one nearby.
(5) "You, as a patient, have a right to request specific labs." You can ask, but the MD is under no obligation to do so. It is an MD's obligation to order only tests etc. that the doc believes is useful or necessary.
(6) "I know I did have to use my credit card at time of drawing. It will take about 3 weeks for results." I didn't have to use my credit card, and the turnaround time on tests varies.
(7) "You should not have to require another visit first w/ your PCP in August." I would leave this to the MD to decide -- there may be good and valid reasons the doc wants to see you sooner.
(8) "Your PCP may have to give you order paperwork and you probably need to go to the local hosp lab to draw since the lab spec handling is specific and needs to be shipped to the lab in CA. You, as a patient, have a right to request specific labs, as this." You can request which lab you want, but the MD is not obligated to do so. MDs who do not fully appreciate Lyme may not use IGeneX labs, which is an issue with the doc, not an issue with the local labs.
================================================
In my experience, finding an MD who is either an ILADS member or is open-minded enough to consider the ILADS diagnosis and treatment guidelines (including using IGeneX testing) is the first and most important step to take in dealing with Lyme. MDs may also be willing to order tests that are not common (such as the IGeneX tests), but they may not know what to do next if the test is positive.
If you live where you have difficulty finding a Lyme specialist, you may be able to persuade your local MD to order the Lyme tests, and if they are positive, then finding a Lyme specialist would be the next step.
A couple of comments:
(1) You can request additional lab work, but the MD is not obligated to order it, and some/many MDs do not see the need for any testing beyond the older ELISA and Western blot tests. It can't hurt to ask, but non-Lyme specialists may decline, and if they order IGeneX testing, the doc may not know what to do then except the largely outdated treatment of a couple of weeks of doxycycline. If that happens, then consider finding a Lyme specialist who think bigger thoughts. Let us know if you want help finding a Lyme doc near you.
(2) IGeneX testing is not necessarily "usually out of pocket". It depends on your insurance company. My insurance paid for the testing just like anything else.
(3) "You should not have to require another visit first w/ your PCP in August." It is up to your doc to recommend a visit if s/he think it should be done, and the doc may have legitimate reasons for seeing you again.
(4) "Your PCP may have to give you order paperwork and you probably need to go to the local hosp lab to draw since the lab spec handling is specific and needs to be shipped to the lab in CA." I would not assume this either. My blood was drawn not at a hospital (and there were several nearby), but at an office/clinic that handles just testing -- less hassle, maybe less expensive. Your doc may be able to recommend one nearby.
(5) "You, as a patient, have a right to request specific labs." You can ask, but the MD is under no obligation to do so. It is an MD's obligation to order only tests etc. that the doc believes is useful or necessary.
(6) "I know I did have to use my credit card at time of drawing. It will take about 3 weeks for results." I didn't have to use my credit card, and the turnaround time on tests varies.
(7) "You should not have to require another visit first w/ your PCP in August." I would leave this to the MD to decide -- there may be good and valid reasons the doc wants to see you sooner.
(8) "Your PCP may have to give you order paperwork and you probably need to go to the local hosp lab to draw since the lab spec handling is specific and needs to be shipped to the lab in CA. You, as a patient, have a right to request specific labs, as this." You can request which lab you want, but the MD is not obligated to do so. MDs who do not fully appreciate Lyme may not use IGeneX labs, which is an issue with the doc, not an issue with the local labs.
================================================
In my experience, finding an MD who is either an ILADS member or is open-minded enough to consider the ILADS diagnosis and treatment guidelines (including using IGeneX testing) is the first and most important step to take in dealing with Lyme. MDs may also be willing to order tests that are not common (such as the IGeneX tests), but they may not know what to do next if the test is positive.
If you live where you have difficulty finding a Lyme specialist, you may be able to persuade your local MD to order the Lyme tests, and if they are positive, then finding a Lyme specialist would be the next step.
wow! i really wish you had been around 30-40 years ago----of course no internet then but---i can wish. I am so impressed by the knowledge and the sharing i see in this group. You are amazing! Thanks for the inspiration. And compassion. And the time you spend doing this. I see it as karma-yoga. And your karma accounts must be over-flowing.
Earth
Earth
If you had just seen your primary care doctor just recently and had lab work, you do have the right to request additional labs (you just had the reg Lyme test) including the Igenix panel, which is usually out of pocket. You should not have to require another visit first w/ your PCP in August. Your PCP may have to give you order paperwork and you probably need to go to the local hosp lab to draw since the lab spec handling is specific and needs to be shipped to the lab in CA. You, as a patient, have a right to request specific labs, as this. I know I did have to use my credit card at time of drawing. It will take about 3 weeks for results.
I hear you. I would do what you are doing. We'll be here -- keep us posted, and take care --
No, It's just that I can't get another appointment with my doc sooner than mid august. All docs in my area are like that, backed up out the door.
Neurology is simply to cover neurology at this point.I really want the test for lyme in any case, it seems the most probable cause, rather than having a weird atypical case of some other neurological problem. I think, the chances of lyme are much higher, and the test is simple and easy.
I will ask the neuro, but I don't expect anything.
I pick up my results from records tomorrow. On the first lyme test. I'll write them here when I get a chance.
Neurology is simply to cover neurology at this point.I really want the test for lyme in any case, it seems the most probable cause, rather than having a weird atypical case of some other neurological problem. I think, the chances of lyme are much higher, and the test is simple and easy.
I will ask the neuro, but I don't expect anything.
I pick up my results from records tomorrow. On the first lyme test. I'll write them here when I get a chance.
It's good that you are pressing ahead -- please don't wait any longer than necessary. The longer the Lyme bacteria are unchallenged, the harder it can be to get rid of them. Neurologists as a group are not known to understand or appreciate the seriousness of Lyme, but you may find an exception.
Are you anticipating that the neurologist will test through IGeneX? As a rule of thumb, neurologists often are in the camp with infectious disease docs, who often do not use IGeneX testing, but instead use the older (and, to my understanding, less reliable [but still useful]) Western blot and ELISA test.
After you see the neurologist, I would suggest you get full copies of ALL test results (to which you are entitled by law, as I understand it) and take them home to read .. and, if you like, to share the results with us. We would be glad to share with you our thoughts, but know that no one here is an MD, so it's just our opinions.
In any event: all good wishes to you!
Are you anticipating that the neurologist will test through IGeneX? As a rule of thumb, neurologists often are in the camp with infectious disease docs, who often do not use IGeneX testing, but instead use the older (and, to my understanding, less reliable [but still useful]) Western blot and ELISA test.
After you see the neurologist, I would suggest you get full copies of ALL test results (to which you are entitled by law, as I understand it) and take them home to read .. and, if you like, to share the results with us. We would be glad to share with you our thoughts, but know that no one here is an MD, so it's just our opinions.
In any event: all good wishes to you!
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