MacKintosh wrote:Yes - I'm back to wearing high heels and dancing around with no difficulty. Considering I was about to sell my manual-shift car because I could no longer coordinate my movements, I'd say I had 100% improvement on that issue.
agatha wrote:Hi Adam
I don't know my EDS score but I could still walk around without a stick albeit with difficulty. Using stairs I had to use the handrail and take it very slowly and concentrate hard. Other symptoms which have also resolved are slurring speech, difficulties in finger coordination, swallowing difficulties, numbness and tingling in various places.
It's hard to remember but I think it was a few months into the abx that I saw improvement in gait. I had improvements in brain fog and energy after a few weeks. The treatment is muddling in the first few months because you have patches during or after the metronidazole pulses where you feel worse as the bacteria die and generate an inflammatory response and then when your body clears away the junk you notice symptom improvement until the next pulse of metronidazole which kills the next lot of bacteria. It is a rollercoaster but the good patches let me know I was on the right track. Even the bad patches were weirdly encouraging because it was evidence that bacteria were dying - metronidazole on its own shouldn't make you feel that bad. I remember a couple of hours after taking the very first tablet of metronidazole all the areas where I had MS symptoms started 'fizzing' so I knew the meds were doing something to the MS.
CureOrBust wrote:Hopefully the patient would be able to feel the change, but it is considered more scientific to have an independent measure of improvements or deterioration; and hence we have double blind trials that are not self reported.
Anecdote wrote:Cureo, my neurologist refused to look at my improved scans because he didn't order them, likewise the Cambridge MS people because they were only interested in their Campath work. Should I have waited for an appropriate double blind trial? It was nearly nine years ago that he literally ran out of the room, saying "I can't look at this!" I would even now still be waiting for that trial.
Anecdote, I am at a loss, please point out to me where I posted that anyone should wait for double blind trials? (and I am not advocating the extreme opposite either ) You are reading into my posts, things I have simply not said or even implied and especially not practiced! You are talking to someone who is on Lipitor, tried LDN, Prokarin, Aimspro, 3 CCSVI procedures, Prozac (for MS), Tumeric extract, and not to forget ABX's and the list could go on. All of which have yet to have double-blind studies performed on them.Anecdote wrote:Cureo, my neurologist refused to look at my improved scans because he didn't order them, likewise the Cambridge MS people because they were only interested in their Campath work. Should I have waited for an appropriate double blind trial? It was nearly nine years ago that he literally ran out of the room, saying "I can't look at this!" I would even now still be waiting for that trial.
Self reporting is not the only way in all circumstances for monitoring improved swallowing. I know for myself, no average person would notice any problems with my swallowing. However, if I saw someone with the same slight issues I have, I could point out how they take longer or a more purposeful pause to swallow compared to the average Joe, who would do it more seamlessly and naturally. Therefore, I would see it as possible for a trained practicing professional to also notice it.MacKintosh wrote:Well, yes, I realize that, but what is the scientific measure of improved swallowing? It would be self-reported as an improvement, yes?
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