Good thread here.
I'm six months into this journey and am also skeptical about the Lyme stuff... but with a twist. My ELISA screening was negative, and I'm getting immunoblot [Western Blot] shortly. If both these tests come up negative, that's as far as my Neuro will go with this.
The other reference test, for Borrelia Burdgorferi, by those other two labs - Bowen Research & Igenex - looms out there, but the mainstream med community doesn't accept their results. My Neuro already said he won't request this test for me and "wouldn't even request it for a family member, Tom."
But my lingering questions are these...
What about the concept of "Chronic Lyme?" Seems there's a debate about the very existence of longer term form of classic Lyme that could lay dormant for years... dubbed "chronic lyme." Is there any credence to this?
To me, the als community's hopefull fascination with this seems to be two fold 1) is if such a condition - chronic lyme - is possible, and does exist, could it alone be what has manifested itself in certain people who've been clinically diagnosed with ALS?, and 2) or alternatively, could it be possible to have both chronic lyme and als, and if so, could that AND should that warrant new long term treatments with Ceftriaxone and other lyme drugs already thought to be potentially helpful for ALS anyway.
So, while I doubt a Negative with ELISA, Negative with Western Blot, but Possitive with Bowen or Igenex means the person doesn't have ALS, I'm also not convinced the evidence of Borrelia Burdgorferi they turn up is bogus... and even more importantly, with Ceftriaxone and other Lyme treatments actually believed to be "potentially" helpful for ALS by the mainstream ... unrelated to Lyme... you can't blame pals for looking to these alt Lyme tests, or the existence of chronic lyme, as a potential avenue of access to the "potentially" helpful treatments.
Tom
I'm six months into this journey and am also skeptical about the Lyme stuff... but with a twist. My ELISA screening was negative, and I'm getting immunoblot [Western Blot] shortly. If both these tests come up negative, that's as far as my Neuro will go with this.
The other reference test, for Borrelia Burdgorferi, by those other two labs - Bowen Research & Igenex - looms out there, but the mainstream med community doesn't accept their results. My Neuro already said he won't request this test for me and "wouldn't even request it for a family member, Tom."
But my lingering questions are these...
What about the concept of "Chronic Lyme?" Seems there's a debate about the very existence of longer term form of classic Lyme that could lay dormant for years... dubbed "chronic lyme." Is there any credence to this?
To me, the als community's hopefull fascination with this seems to be two fold 1) is if such a condition - chronic lyme - is possible, and does exist, could it alone be what has manifested itself in certain people who've been clinically diagnosed with ALS?, and 2) or alternatively, could it be possible to have both chronic lyme and als, and if so, could that AND should that warrant new long term treatments with Ceftriaxone and other lyme drugs already thought to be potentially helpful for ALS anyway.
So, while I doubt a Negative with ELISA, Negative with Western Blot, but Possitive with Bowen or Igenex means the person doesn't have ALS, I'm also not convinced the evidence of Borrelia Burdgorferi they turn up is bogus... and even more importantly, with Ceftriaxone and other Lyme treatments actually believed to be "potentially" helpful for ALS by the mainstream ... unrelated to Lyme... you can't blame pals for looking to these alt Lyme tests, or the existence of chronic lyme, as a potential avenue of access to the "potentially" helpful treatments.
Tom
