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Peripheral neuropathy recurrence after stopping ethambutol
MAC & Bronchiectasis | Last Active: May 8 10:52am | Replies (42)Comment receiving replies
Has anyone looked at vitamin levels or tried B12 supplements? If so, did it help?
Humans are stupidly complex. The rather intense course of antibiotics prescribed for NTM tend to cause poorer absorption of nutrients including B vitamins, which can increase the risk of neuropathy. So not only do we have to contend with ethambutol, we also have to deal with poorer nutrient absorption and (ahem, for many of us) advanced age.
I don't blame doctors for not figuring it all out. Everyone is different and it's HARD to know what to do. All we can ask is that they do their best and listen to us. And what WE have to do is to educate ourselves, both through peer-reviewed literature and patient-reported outcomes like in this forum. Thank you to everyone here for that!
Replies to "Has anyone looked at vitamin levels or tried B12 supplements? If so, did it help? Humans..."
@tw508 I’ve tried them all to no effect. When you look into vitamin absorption it’s very complex with genetics playing a part. The fact we were all fine before antibiotics suggest they block absorption somehow probably via gut . My gut was destroyed by the treatment. Foamy urine / diarrhoea / bile flow problems. Lost 10kg in weight still can’t gain back. They know antibiotics destroy gut biome and lining but do nothing to prevent or protect it from treatment. Looking after the gut is probably the most important part of fighting this MAC because that’s where most of your immune system is. Yet it was never even mentioned during my treatment I just presumed doctors knew everything and I would be safe- Wrong.
I genuinely wonder what these so called “doctors “ actually know about human biology
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@tw508 I know in sending me to a neurologist to try to disprove ethambutol caused this he sent me for an MRI results still pending and told me to take riboflavin he said B1 supps but that is not riboflavin but thiamine. B2 is riboflavin together with magnesium. He said it would help with migraines but not sure if he was thinking it might help the neuropathy as well. No mention of any other B vitamins.