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Old 05-07-2015, 02:42 PM #1 (permalink)
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Default wondering about lyme disease

Hi to all: my first time posting. Dx 5/2014 and been through all the neuro exams, EMG's and MRI. I have read so much about Lyme disease in connection with ALS. MY blood was neqative but I really pushed for more extensive lab test: 14 tubes of blood later, sure enough I tested positive on a lyme subgroup. Wonder if IV doxicycline will stop progression. Has anyone else had this experience?
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Old 05-08-2015, 01:03 AM #2 (permalink)
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Default Re: wondering about lyme disease

MH, there was a thread on this recently and others back a ways. There are some questionable labs and clinicians in the Lyme world, some of whom have latched on to the desperation PALS have in seeking another explanation and all of whom are Internet savvy, so your 14 tubes may or may not reflect an actual disease process. However, you are in an area obviously known for Lyme.

IV doxycycline is not a part of any recognized Lyme treatment guidelines, and you don't mention having tried oral meds with fewer risks. If you post more on your course and symptoms, we may be better able to help you determine whether or not Lyme is a serious possibility, but in the ALS Untangled study, the percentage of PALS with positive Lyme tests (and antibodies do not equal current infection) was 3%. You can have both, and that is more likely than a misdiagnosis of ALS, but for your peace of mind should have a second opinion on the ALS, perhaps in Boston, if you haven't already. And if a clinician actually diagnosed you w/ ALS, Boston could furnish a second opinion on that as well.
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Old 05-08-2015, 10:27 AM #3 (permalink)
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Default Re: wondering about lyme disease

>ou can have both, and that is more likely than a misdiagnosis of ALS, but for your peace of mind should have a second opinion on the ALS

Ditto that!
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Old 05-08-2015, 01:20 PM #4 (permalink)
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Default Re: wondering about lyme disease

Sorry, I typed "ALS" for the second disease, instead of Lyme. Anyway, you can garner 2nd opinions on each.
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Old 05-08-2015, 01:39 PM #5 (permalink)
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Default Re: wondering about lyme disease

Thanks for info. Glad I found this forum.
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Old 05-08-2015, 01:42 PM #6 (permalink)
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Default Re: wondering about lyme disease

Thanks for quick response. Helps to share whatever info is available as I don't know anyone with ALS. Finally getting around to finding these sites.
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Old 05-08-2015, 02:27 PM #7 (permalink)
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Default Re: wondering about lyme disease

my husband had the port put in and was on an IV dose along with anti fungals for 10 months. he did not slow down or stop progressing. during that 10 months He went from walking to ordering a wheelchair.

sorry. they really are not the same at all.
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Old 05-08-2015, 04:47 PM #8 (permalink)
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Default Re: wondering about lyme disease

Some Lyme practitioners seem to find Lyme in everyone. And some antibiotics have been shown to accelerate ALS. Please make sure your doctors are top notch. Where did you get the ALS diagnosis? I go to MGH and swear by them
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Old 05-08-2015, 05:50 PM #9 (permalink)
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Default Re: wondering about lyme disease

Hi Nikki, I also go to MGH and feel secure with them. Just reading a lot about everything. Thanks
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Old 05-08-2015, 05:59 PM #10 (permalink)
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Default Re: wondering about lyme disease

Ask your neuro then. They will tell it straight. Any of them. I see Merit Cudkowicz. Who do you see?
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Old 05-09-2015, 10:04 AM #11 (permalink)
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Default Re: wondering about lyme disease

I see Dr. Paganoni. She is very nice. Do you do any of the trials they offer? I don't want to tire myself out too much as I could be going in and out for this and that. Mal
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