Has anyone here survived an ALS diagnosis? I know about Dr M in CO, I go to his clinic. I'm not getting any better. I'm getting worse.
I've tried every antibiotic, even for the FL1953 bug but I'm still not getting stronger.
I fell down the stairs a few weeks ago, it was so scary. I'm ok tho.
I'm starting to lose hope. All the ALS chatrooms say don't waste your money treating lyme for ALS, you're going to die anyway.
Posted by lymenotlite (Member # 33166) on :
Maybe you can get some input from this site.
Posted by lymenotlite (Member # 33166) on :
We need to know whether you have lyme. Have you been tested for lyme? There is a recent test that is apparently very accurate unlike the others. Have you been in treatment for lyme? I assume you know that ALS can be lyme. Some think it is always or almost always lyme.
I'm very interested in this illness because I know a woman whose son has it. I've been keeping my eyes open on this and other forums for any helpful comments.
Posted by SForsgren (Member # 7686) on :
I know of someone that may have some information that may be helpful for you 2young2diemom. Please email me privately. Thanks
Posted by TF (Member # 14183) on :
I looked through the posted link at earthclinic.com. Some interesting alternative ways of halting or slowing down ALS. I found this interesting about Aspirin:
quote: Alcohol gels only kill bacteria, but not viruses. Viruses are weakened or killed in hydrogen peroxide, clove oil, vinegar, and peracetic acid. Aspirin liquifies these viruses, especially their lipid envelopes, it is this aspirin, I believed, that stopped the Spanish flu viruses. It's also what cured my measles when I got it at a young age, but the proper use is in powder form. It works best when taken together with vitamin C, which some drug stores sometimes don't carry, but aspirin nearly every drug stores does
Posted by coffee71 (Member # 17467) on :
Do not ever give up, no matter how symptoms are crushing you physically and emotionally- that is my experience.
I have gone trough every possible neuro symptoms and the worst was during the combo of 4 abx at the same time - and it took 2.5 years to see some improvements. During that time I could not believe my LLMD that all those symptoms can be caused by Lyme&Co. I just told myself that I had no other option but to stick to Lyme diagnosis because seeking a treatment for other diagnosis did not give me any hope.
Posted by lymenotlite (Member # 33166) on :
quote:Originally posted by SForsgren: I know of someone that may have some information that may be helpful for you 2young2diemom. Please email me privately. Thanks
Posted by lyme-o (Member # 35115) on :
I know this is an old post but I was trying to send a PM to SForsgren
Posted by seibertneurolyme (Member # 6416) on :
lyme-o,
Scott does not do pm's on this site. Go to his website -- betterhealthguy.com and email him there.
Bea Seibert
Posted by lyme-o (Member # 35115) on :
thanks so muc seibertneurolyme
Posted by lpkayak (Member # 5230) on :
in my search for help when lipitor made my legs so weak i couldnt walk i came across info relating mitochondrial problems to als on place said you dont get an als dx until the problem is so bad it is irreversable...i have many sx and they are improved with coq10 which means they could very well be mito in origin
there are supplement protocols out there that seem to hold it off...that is what i do. i havent figured out how to get to a mito doc...but it seems until you are really bad they will say you have notheing wrong...i could probably find the protocol -i know i have posted on here...pm me if you want it
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by lyme-o: I know this is an old post but I was trying to send a PM to SForsgren
- If that doesn't work, they say he's on Facebook.
Posted by Razzle (Member # 30398) on :
The mito protocol is large doses of L-Carnitine and Co-Q10, plus zinc and other supplements depending on specific issues/deficiencies.
Statins CAUSE co-Q10 depletion, leading to liver, kidney, heart, and other organ problems, muscle destruction, etc. I will NEVER take a statin. I'd rather have the cholesterol than the horror that drug class can cause people!!