Andrew UK
Forum Replies Created
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I could be wrong but I thought that the mechanism that Ibubilast ( I imported it from Japan) works on is a down regulation of certain forms of the immune system. Some supplements may also help such as Curcumin, quercetin and some of the mushrooms such as baicalin and lions mane. As ever caution as I have read somewhere that too much baicalin can be toxic and Lions mane may promote/up regulate SOD1 which may be of dubious benefit to a SOD1 mutant such as myself
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I have had my diagnosis visit last October. I asked if there would be any any further monitoring or tests and was told no. I think that I have had one telephone follow up which was just a check in. I have had more input from the University as I think they are scoping me out for trials but as yet I have not joined any. (I was offered a place on the TUDCA trial but thought that as I taking it anyway there was no point). I do get visits with the Physio and Occupational Health. These are check ins to support me in my decline. Overall, I get the impression that the system has already assigned me to the bin and rationalises that any time spent doing testing is a waste of time unless I am fodder for an RCT. I feel that a great deal of information that could be generated from qualitative trials on individuals is being lost.
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I am beginning to rattle with the volume of supplements!
If I had to choose then I would say that Liposomal Glutathione and Ibulast have when I have stopped taking them shown an observable/ anecdotal acceleration in progression. This may be coincidence but why take the chance. I only take 10mg (1 tab) of ibulast not the 60-100 in the trails. I have found that not all liposomal Glutathione is the same. A perceived decline occurred when I changed brand. I currently use Youth and Earth (I have no affiliation). I also take TUDCA, Mg, Zn, butryate, NAC and Curcumin.
I am considering pharma GABA and Lions mane extract.
I try to introduce one product at a time over a period of weeks to see if there any effects adverse or otherwise. Anecdotally, I think reservatrol had an adverse effect.
As ALS appears heterogeneous everybody should take an individualised cautious approach.
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I turned down the opportunity to participate in the TUDCA trial here in the UK for the very same reasons you outlined. I import the TUDCA from the US as it appears to be a better grade and value. I imported Ibubilast directly from Japan. I only take a low dose 10mg as a background medication because unlike the other trials I can take it in conjunction with other supplements/meds. Anecdotally, I would say that when I stopped taking the 10mg of Ibubilast deterioration felt like it speeded up. I can’t say the same for TUDCA but take it anyway at 500mg per day. I have also felt that liposomal Gluthatione (not all brands seem to be the same) has also helped. I would also like to point out that oxidative stress is a much talked about factor that may be implicated in ALS. However, if you overload the system with anti oxidants then you may be exposing yourself to reductive stress instead. I have found that I have probably made things worse at differnt points by taking too many anti oxidants and I am now at a point where I think I am going to get the balance right. The self experiment continues. It seems such a shame that I have to do this on my own without any support from the medical profession. I have asked for specific help and they do nothing once you have been diagnosed other than see you every six months to document your decline. I can’t help but feel angry if I think about it.
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I was speaking to Sheffield Uni this week and it was muted that an open access arrangement may be started next year prioritising more rapidly progressing patients. I will be having another conversation in Jan 2022 so will know more then
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I was speaking to Sheffield Uni this week and it was muted that an open access arrangement may be started next year prioritising more rapidly progressing patients. I will be having another conversation in Jan 2022 so will know more then