Many PALS have Lyme

Diagnosed with ALS and Lyme

On ALS forums, it is almost common knowledge that "Everyone tests positive for Lyme" when the tests are sensitive enough, such as with the IGeneX test, that also includes bands 31 and 34, which are most specific for Borrelia and are excluded by other Lyme tests manufacturers. The below two ALS patients on als.net had positive Lyme tests:

RL Schafferr: "All Lyme tests come back positive..mine did..And I had 3 from reputable labs."

GusGargoyle: "I went 7 years with my Lyme before getting treatment and this is the bulbar kind."

Posters "Bubba" and "Debbie", "PatMurray12" are also Lyme-positive on that forum, as well as many others. On other ALS forums we see the same situation: [1]

Degenhardt: "In 2003-2004 I had Lyme disease. I have heard from another person whose brother died of ALS that he had Lyme prior to ALS. I do not have Lyme now. I do have a new diagnosis of ALS".

..and this one: [2]

davikingdawn: "I had to be tested three times, before the lyme was found, it is very tricky to find. They finally found it on the Western Blot test."

..and a friend of this one: [3]

IluvNY: "Hi all, a friend was diagnosed with ALS a few weeks ago. He shared his report with me from the neurologist and after researching and seeing the info regarding ALS and Lyme disease, it caught my attention that it states in the neurologist's report that he tested positive for Lyme IgG."

..and someone's nurse's friend's husband (very troubling..): [4]

limegreemphysicist: "Also, one of my doctors was caught up in a sticky situation in which my nurse's friend's husband was diagnosed with Lyme's disease, then ALS, only to be re-diagnosed with Lymes. By the time they got back on the right track with Lyme's he was already too far gone and is not being treated for Lymes and is bedridden."

This person has "Lyme and ALS": [5]

Phil M: "I thought for sure I had Lymes when I started having symptoms. I had Lyme symptoms for years, and in the summer of 07, I got bit by 2 ticks, and the bite sites for both of them swelled up and turned red. Shortly after I had a really high fever that only lasted about 24 hours. Anyway, about 2 weeks later my speech started slurring. My doc did a Lyme treatment, but only the 10 day Doxy. Long story short. I ended up seeing a neuro. He said Lyme or no Lyme, you still have ALS"

This woman was treated for Lyme in her teens, is still Lyme-positive and now has ALS: [6]

elemkay80: "OK, I spoke with my first neurologist today and got interesting news. My Lyme test is positive, but he said not to get my hopes, that he expected it would be (?). I had a confirmed Lyme tick bite when I was about 10 or 11yo (I'm almost 28 now) when I was at summer camp. Had the bulls eye rash on my arm and everything. I was put on antibiotics and that was the end of that. Never thought about it again, other than keeping in my head that it had happened. The rash went away and I never had a known symptom. So now I'm being diagnosed with ALS 17 years later?"

patricia1 answers to this: "I had a tick bit 15 years before ALS and was treated for lymes as well :-\ I told my neuro and she said that since it was treated it was not related to the ALS. So I feel like you do. Confused!"

ALS patients who test positive for Lyme generally accept it as a coincidence or at best theorize that having been exposed to the bacterium may have predisposed them somehow towards ALS. "If ALS would be Lyme disease, the various antibiotics trials for ALS would have shown some success", they say - totally ignoring the fact that those trials used doses and treatment periods that have been reported by Dr. David Martz to be wholly inadequate in clearing up his Lyme-ALS.

Others say that since they never were bitten by a tick, they can't possibly have Lyme - even though 70% of diagnosed, CDC-reported Lyme patients do not remember a tick bite. It may very well be that Lyme can be transmitted by additional means. In 2009, a Florida lab found mosquitoes carrying the Lyme spirochete. Fleas are carriers as well. Lida Mattmann found Borrelia spirochetes in tears. Borrelia has been found in perspiration, the placenta, blood and semen. Borrelia bacteria have even been found in dust from Africa.

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