ok so you stop abx treatment .... and then what ? what is the treatment for ALS ?
If there were a treatment for that, i'd understand your decision to stop. Like for MS, you can treat MS now with some very strong drugs like ocrelizumab.
Fine, but ALS ? You cannot treat it with anything and the prognosis is very grim. So the real question is, do you have a choice ? If you have positive lyme blood tests and symptoms (and it seems you do) the only treatment that you can take is the lyme one, as far as i know and i am not a dr, but still, ALS does not really have a treatment.
I have motor neuron damage too and i am still here 4 years after my diagnosis, and it's probably only because i take my lyme meds ... i have some muscle atrophy of course but i can run , jump, exercise etc.... i'd say if this were "normal ALS", in 4 years i'd be either in bed on ventilator or at least unable to walk. If not dead.
This is from the NIH page: "Most people with ALS die from respiratory failure, usually within 3 to 5 years from when the symptoms first appear. However, about
10 percent of people with ALS survive for 10 or more years."
So i am already 4+ years into it and RECOVERING. I mean i am MUCH better than 4 years ago. This is unheard of in ALS. Recovering ?!
So what am i sick of ?
But this is known, lyme can present with motor neuron damage, please read the abstract of this paper/www.ncbi.nlm.nih.gov/pubmed/19670562
it's a weird disease and it mimics MS, ALS, Alzheimers and many others ...
Please think of the options you have if u stop treatment. Is there a cure for ALS ? Is there at least a treatment for ALS that works? I understand most treatments only make the symptoms easier to take but do not delay the progress at all and the end is quite the same...
Maybe what u need is a change of lyme treatment, or LLMD, better/stronger meds. Some patients only respond to stronger medications like dapsone / vancomycin etc... mino + rifampin is a really strong combo and it is adequate treatment for lyme and will surely at least slow the progress of it, but it is not in the new category of treatments that are now used on the sickest and the unresponsive people.
so my point is u still have a lot of bullets to try before giving up ...