Hello!
I just want to give this update about my situation. I hope people on here find this because my situation was a nightmare and I think this can help people who are confused and not sure what to do or if they'll ever be able to tolerate antibiotics again (TL;DR: you will be able to if you can heal your nerves enough).
I made some threads on here a year ago asking for help because I could not tolerate Trimethoprim or Doxycycline due to severe neuropathic pain whenever I took them. When stopping, the nerve pains would mostly go away within days.
I tried Tried Trimethoprim 3 times and I tried Doxycycline 3 times before giving up. Could not make it beyond 2-3 days before having to stop taking the antibiotics. And I had to take these for 2-3 months to have a good chance of clearing the infection. So it was impossible. At the time, I had no idea I had B12 deficiency or that I was going through a silent period of nerve damage from low B12.
I had to live with a UTI for a long time as I was unable to treat it. I even reacted the same ways to certain supplements as well, such as Uva Ursi, and supplements containing a lot of glycerol (this may be due to changes in osmolality). All would cause nerve pains.
Anyway, by late summer 2023, I had to take Trimethoprim due to kidney pains from the infection. By this time my nerves had healed a lot, I was about 80-90% better than December 2022.
At 100 mg, twice a day of Trimethoprim, I had no side effects. But when I increased to 200 mg a twice a day, I noticed increased nerve symptoms.
However, I was able to figure out that by if I took "Life Extension R Lipoic Acid" about 1 hour prior to the antibiotic dose, it I was able to tolerate Trimethoprim very well.
There were minor symptoms still, but very manageable this time. I took 250 mg R Lipioc Acid, 3 times a day, on an empty stomach (in addition to a few other supplements that supported nerve regeneration and health)
I was later able to add a custom phage (phage therapy) that I had developed for me (a virus that infects bacteria), and this finished off the infection, eradicating the bacteria in my prostate.
WHAT IS THE PROBLEM WITH ANTIBIOTICS?
I've done a lot of experimentation and a lot of research on this. It seems to be that antibiotics (through various mechanisms) are able to cause nerve issues due to ion channel changes, redox status changes, energy metabolism changes, etc. In the case of Trimethoprim, B12 deficiency causing a functional folate deficiency, so that is an added risk of taking anti folates such as Trimethoprim.
The issue is that the nerves are simply hyperexcitable or hypersensitive. Just as the cold weather irritates your nerves, these chemicals do also. Eventually, as your nerves heal, you will be able to tolerate these medications a lot better. This was exactly my experience. It was a tolerance issue, not an allergy and not because the antibiotics were depleting my B12 levels so I needed more (though I'm sure it doesn't hurt to take more as it is protective).
Now I have recently discovered that I am able to tolerate antibiotics pefectly fine again, just as I was able to prior to B12 deficiency due to my vegan diet. It is because my nerves have healed to a great extent. I no longer have issues with cold, I don't react badly to antibiotics or supplements anymore either.
Why I was so confused about what was going on initially in 2022 was because I had no idea I had a B12 issue. My levels were in the 300s. But I was going through a silent period where my small fiber nerves were being damaged or lost slowly, and I didn't really have any super obvious pain. There were some other subtle signs that I had missed that year looking back though, like limbs falling asleep easily when leaning on things or sitting on toilet.
It was when I took the antibiotics that it unveiled what was going on. And I already had a hint from when I had a tetanus shot prior to getting sick. After I had a tetanus shot, I noticed burning of my hands and thighs for days. It increased my immune system and triggered my nerves. I also noticed similar effect with colds that year too.
But it's important to recognize that even if you don't have any obvious neuropathic pain, your small nerve fibers can still be in a state where they are easily irritated or hyperexcitable. And this can take months or years to become "normal" again. And they can be triggered with medications, inflammation, cold, etc.
Supplements that I believe have been helpful for me in improving nerve symptoms, improving nerve quality and regeneration (I still take them).
- Benfotiamine - 600 mg a day
- Life Extension R Lipoic Acid - 3 capsules, around 750 mg a day
- Cod Liver Oil (contains DHA) which helps the myelin sheath repair (I stopped being completely vegan for a while).
- Methylcobalamin I took 5000 mcg a day but now down to 2000 mcg (I absorb b12 very well so I only used supplements to heal).
- Methyl Folate 1000 mcg (not taking currently but took most of the year in 2023)
- Acetyl L Carnitine 1000 mg a day (taken in morning because it causes insomnia otherwise) - improve nerve quality and repair
- Magnesium Glycinate
I found these supplements were helpful for me in reducing nerve pain and research does point to benefits in humans for protecting nerves and nerve regeneration. Improved the quality of the regenerated nerves.
CONCLUSION
If you're having issues taking antibiotics, you can try R Lipoic Acid. This was by far the most helpful supplement in reducing nerve pain. And it worked well for me when I had to take Trimethoprim when I had no choice. I took Trimethoprim full dose for over over a month and then low dose for another 4 weeks. No major issues. Which is a huge difference from months prior when I wasn't even able to take it for 2-3 days without almost passing out or vomiting from severe nerve pain!!
In the end though, if you are able to heal your nerves a lot or completely, the nerve related side effects from antibiotics be far more manageable or you just won't get them anymore. That being said, be careful with quinolone antibiotics and flagyl (these can and do cause serious nerve damage). I'm mainly talking about safer antibiotics such as amoxicillin, trimethoprim, tetracyclines, etc.
I hope this helps some people here and gives them hope if they are ever in a similar situation where they are unable to treat an infection due to severe antibiotic side effects.
I thought I was unique in that I couldn't tolerate any antibiotics, but it doesn't seem that uncommon among those with B12 deficiency. Doctors were clueless in understanding what was going on. I had to figure all this out myself. But I got there in the end!