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 "LifeExtensionR 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 took5000 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!
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Thank you. I'm aware of that. I was familiar with the brand I had used for years growing up and we had a lot of it here already since my father takes seven seas cod liver oil. Since money was an issue for me during the illness, I just used that.
I had to develop my own strategy to heal from B12 deficiency and to manage and eventually cure the infection. Doctors really didn't have a clue how to deal with my case because I was unable to use antibiotics. And they didn't even figure out I had B12 issues either, they missed it in early 2022.
I managed the infection with supplements for months as I was healing from the nerves issues. Apolactoferrin + Cysticlean, which worked for about 3 months for the UTI before the bacteria adapted. I used Horetail, Juniper, and Uva Ursi on and off when symptoms were at their worst. Later I figured why I reacted negatively to these supplements, and it was due to the glycerol. Weird I know... but I think it was to do with changes in osmolality from ingesting the glycerol, setting off the nerve pain. I also forgot to mention that I tried Hiprex, which an old antisepctic for urinary infections. I had the same nerve pains as I had with antibiotics even with this medication.
My plan or strategy after I realized I was not able to tolerate antibiotics in December 2022 was to heal my nerves, that was my priority. I figured that I would eventually be able to use them again, and it was simlpy a tolerance issue. One clue I had was an experience from back in 2007 when I got floxed by Cipro. It caused neuropathy, and for a while I was unable to tolerate methyl paraben as it would cause similar nerve symptoms. Eventually I was able to tolerate this ingredient once my nerve shealed by 2008.
So anyway, over the year I would manage the symptoms and then planned try antibiotics again after 6 - 12 months or combine them with phages. I was able to raise funds to get a custom bacteriophage developed for me that specifically targets my bacteria, which was called Raoultella Terrigena. My 2 latest lab reports in a row show that this bacteria has been eliminated!
Honestly, it was a nightmare. Not being able to treat a simple infection lead to a chronic infection lasting a year. I still have some inflammation left over from it and some mild symptoms, but it's getting better. The UTI made me feel so ill, I was mostly in bed for 6 months with constant flu-like symptoms and the UTI symptoms and pain.
I think I'm going to do another round of phages just to make sure it's not hiding deep in the prostate and just not showing up in tets or is hiding in the bladder and not showing up in cultures (it's possible). But I am feeling so much better than last year and not feeling ill anymore.
It was really silly that I let myself become deficient in B12, I should have known better. I figured I was fine since my levles were in the 300s, but I did have weird symptoms for a while. Palpitations, fast heart rate, anxiety, limbs falling asleep, slow gut motility, very cold feet, bouts of dizziness lasting days to weeks, not remembering dreams. And even my memory was becoming terrible and I couldn't remember Korean words I was learning when using Anki. My short term memory was awful. Those are just a few of the symptoms, but there are more.
You are brave and determined! I feel stupid to have overlooked B12 issues as I'm in the complementary health field, but sometimes we don't spot what's under our noses. Glad you sound in a much better situation now and hope you stay well.
I knew that the B12 tests weren't totally reliable as well. I knew that other tests would have been determined if I had a deficiency, such as methylmalonic acid or homocysteine tests. I've literally written articles on this! :/
But it presented itself with weird symptoms that would come and go over time. It was never super obvious. My diet is plant-based, so my folate levels were on the high end of normal and thus probably masked some of the changes or symptoms. It really did creep up on me over a long time. My doctor saying my levels being in the 300s were fine also sort of lead me to believe I was fine as well...
This is very interesting. I have wondered if Trimethoprim had some bearing on my B12/PA situation, and even whether it caused it.
Almost exactly a year ago I was perfectly healthy then within the space of a few days I had a UTI requiring Trimethoprim and was also diagnosed with high blood pressure and prescribed Amlodipine. I had a bad time with the Amlodipine and stopped taking it after 6 weeks but never felt totally right afterwards. I had a second course of Trimethoprim at the same time but didn’t attribute it to my symptoms that I assumed were due to the Amlodipine.
A few weeks later my dentist prescribed Amoxicillin for a tooth infection, an antibiotic I have had in the past, and it seemed to cause some nerve problems so I stopped taking it. He tried another antibiotic and that an adverse effect on my tinnitus, something I have had for about 10 years.
This raised my suspicions that I had suddenly become intolerant of commonly prescribed antibiotics but at the time had not been diagnosed with B12 deficiency and then PA. That diagnosis was in late October. And I’m now on a B12 injection regime but still suffering with many symptoms, mostly neurological.
Looking back, I have struggled to understand how I went from being well with none of the symptoms that are now being attributed to B12/PA, to where I am today. It was as if it happened overnight. But if the causal link is a common medicine such as Trimethoprim, or possibly Amlodipine, it raises a lot of questions.
I did some brief investigations and could find links between B12 deficiency and Trimethoprim, including one from Nottingham NHS that lists Trimethoprim among other drugs that can cause B12 deficiency. I have found nothing conclusive regarding Amlodipine, although that drug has some serious side effects.
I haven't taken those drugs or any other prescribed medicine since last May. The strongest thing I’ve taken since then is Paracetamol. But I’m now coming to the conclusion that my current and lasting condition was drug induced.
If true, and considering how many people are prescribed those common drugs, could it be the reason why there seems to be such a high and ever increasing number with B12 deficiency?
It would be interesting to hear from others who somewhat suddenly found themselves B12 deficient with no previous symptoms and can link the start to medication.
I've written some other resposnes on here with more context but I think the medications can not just induce deficiencies, like Trimethoprim for example, but can simply unmask vulnerabilities we already have.
I had a Td/IPV shot (3 vaccines in 1) around August 2022. I noticed burning of my skin after 2 days and it persisted on and off. Having the blankets on me would make me feel like my skin was heating up and burning. Very weird... And I attributed it to the vaccine. This is the first thing that completely threw me off course and to what the actual issue was. My nerves were already hypersensitive and damaged at this point. What I was experiencing was the elevated immune system response in my body to the vaccine, triggering my nerves. It's often the same around here when people get viral infections, it sets off their neuropathy temporarily.
It simply unmasked an issue that was already present from a B12 deficiency.
Secondly, when I tried Doxycycline in September 2023 for the UTI, I developed the same burning sensations again. I then switched to Trimethoprim, and that also caused the exact same side effect. It would mostly go away once stopping the antibiotic.
Now these were antibiotics I had tried lots of times years ago without issues. But now they were causing issues? They unmasked damage that was already present.
You can have hyperexcitable, irritable or damaged nerves without clear an obvious symptoms. There is called the silent period before the nerve pain and symptoms start without triggers. This is basically what I experienced.
Trust me, a lot of people are mising this connection. I've come across numerous people in UTI forums that cannot take antibiotics and have the same issue. We discovered they had B12 deficiency.
I’m still going to explore whether some medicines, such as Trimethoprim, might be the cause of B12 depletion but in no way overlooking the fact that they can have bad side effects for those already deficient. I’m trying to keep an open mind and all options open.
I’m not sure if you’ve seen this before but the last page is interesting.
Yes, I've seen that before. To be honest, I've looked and not found any research to show that Trimethoprim causes a B12 deficiency by reducing levels; but I've found that even short courses of Trimethoprim can have significant effect on folate levels as it's an anti-folate medication.
But it makes sense that it would exacerbate a B12 deficiency as they have a close relationship. B12 deficiency itself causes a methyl trap, and induces a functional folate deficiency. So it's obvious why Trimethoprim would predispose one to neurological side effects.
It seems that these kind of reactions to Trimethoprim are not unique to B12 deficiency either by the way, but seem to be more general for small fiber neuropathy of any cause. This is what I've gathered from talking to a lot of people over the past year.
Clearly, Trimethoprim is contraindicated in those with folate and B12 deficiency though. But obviously if you need to take it at some point in the future, just take methyl folate.
Trimithoprem lowers folate and Nitrofurantoin lowers B12. If you’re already low then it’s not going to help! At my worst I couldn’t tolerate them either. I do believe that other supplements can support recovery. I’d also add vitamin E.
Yes, I explained that in my post and I am aware of these contraindications. B12 deficiency causes a functional folate deficiency and thus taking anti-folates like Trimethoprim may exacerbate the problem. And Nitro (which I never took) is contraindicated with B12 deficiency.
However, that clearly wasn't the whole story behind the reaction. Yes, it was probably part of it, but not the only reason. I tried Trimethoprim 3 times from September 2022 to December 2022 with severe neuropathic pain. I had to stop within 2-3 days each time.
I started treating B12 deficiency on 23rd December 2022.
It wasn't until around August 2023 that I had no choice but to use Trimethoprim again. Now remember, I had been taking very high dose B12 and methyl folate for 8 months by now and my levels perfectly fine and high. And most of my B12 deficiency symptoms by this time were gone except for mild small fiber neuropathy symptoms, but largely asymptomatic without triggers.
This time, when I took Trimethoprim again (full dose), I didn't experience numbness, limbs falling asleep and waking me up, tingling, severe burning all over my skin. The only side effect was a little burning of the skin around my body on and off with a severity of about 3 or 4 at its peak instead of a 9 out of 10. It was a lot more tolerable. And then taking R Lipoic Acid alongside the Trimethoprim brought that down to about a 1 or 2 and it was on and off. So I was able to tolerate the antibiotic for over a month at full dose without issue. The lower dose did not cause any side effects.
Medications I tried to use to treat infection (all caused severe nerve pain):
- Trimethoprim
- Doxycycline
- Hiprex
Supplements I used to manage UTI symptoms that were somewhat effective (Uva caused severe nerve pain, the other two moderate nerve pain):
- NaturAlma Uva Ursi (contains glycerol)
- NaturAlma Horsetail (contains glycerol)
- NaturAlma Juniper (contains glycerol)
I write about my experiences here in an blog post from July 2023. The nerve pain would settle down within a day or two after stopping any of these. And if the nerve pain was very bad, I'd go back to baseline within a week or just over.
I'll note that there were many supplements that did NOT cause side effects.
All of those listed above in this post caused the exact same side effect - burning all over my body / skin and tingling in my limbs. So it was bizarre and difficult to understand what was going on.
So anyway, as of today, I can take all of those supplements, hiprex, and trimethoprim without any issues. No nerve pains. I've not tried Doxycycline yet but I assume I would be fine. I have taken Doxycycline for months prior to B12 deficiency without issues.
The lingering issues of the damaged nervous system reacting badly to antibiotics AFTER correcting B12 and Folate levels is more about hyperexcitable / irritable nerves than still having inadequate levels of these vitamins if you have suffered nerve damage. However, taking those antibiotics while not currently suffering nerve damage but do have low levels, may predispose one to developing neuropathy and more severely.
And yes, I already take vitamin E and everything else in a multi. Those supplements I listed there are just more specific to nerves. Thanks!
There is clearly a general thing going on here with nerves being hypersensitive to many triggers, be it systemic inflammation, cold, heat, antibiotics, and various ingredients in supplements or medications. From my research, small nerve fibers can take months to years to become physiologically "normal" again even if one gets to a point of being asymptomatic without triggers.
I’ve experienced similar but I’d have said that Trimithoprem lowers B9 and Nitrofuratoin lowers B12 - if you’re low, or have PA, or still have healing to do, it’s going to cause issues. And of course there’s stand alone folate deficiency too. There are other options - a wide spectrum antibiotic like Cefalexin would have treated the UTI without the nutrient lowering effects. And there are other options to prevent UTI’s like local oestrogen for women, sour cranberry, dmannose, etc. Similarly, looking at other nutrients that heal damaged nerves is helpful. The main thing is that we found a way through it. My feet would go completely numb for weeks after Nitro - my doctors were clueless - in the end they put it down as an allergy but of course it was a known side effect clearly documented in the drug paperwork. Educating ourselves is the only way forward.
I don't think it would make any difference... I've spoken to plenty of people who had small fiber neuropathy who also react the exact same way to amoxicillin, cefalexin, gentamcin, trimethoprim, doxycycline, hiprex, etc. It's a general sensitivity due to hyperexcitable nerves.
The "deficiency" of B12 and functional folate deficiency was already corrected during my use of antibiotics (levels were well within normal ranges. My folate was around 20 at the upper range of normal and B12 was 707 ng/L).
And on my last use of Trimethoprim my B12 was close to 2000 ng/L after 7-8 months of high dose B12. Folate on the high end of normal still as well. But nerves were still sensitive, but much less so as they had months to heal.
Nerve damage = sensitive nerves to various triggers, environmental or chemical. As I said, it wasn't just antibiotics, it was numerous supplements too and things that have no effect on B12 or folate.
Of course, you are right that taking Trimethoprim while haivng a deficiency would predispose one to developing or worsening damange and the neuropathy, but that is a seperate issue than making already irritated / damaged nerves more irritated and excited.
These reactions I'm talking about are mostly pseudoexacerbations of existing nerve damage through irritation of nerves through various mechanisms.
Ah but we know it's not about the numbers - it's about the time it takes to heal. We're talking at cross purposes - I'm not talking about general sensitivity to antibiotics - I'm talking about difficulty tolerating the narrow spectrum antibiotics that are proven to lower B12 and folate, that I'd previously (and since) tolerated. It was the top Urogynae at the John Radcliffe hospital in Oxford that said the wider spectrum antibiotics like Cefalexin would be okay and sure enough they were.
OMG I had the racing heart and impending doom reaction to Nitrofurantoin prescribed for a UTI a couple of years ago, before any low B12 diagnosis. So hideous I said I could never have it again despite taking it 10 or so years ago with no problems. It was exactly same as the reaction to dose 5 of my loading dose... of course the GP probably wrote 'crazy hypochondriac' on my notes, but now that makes so much sense. More amazing learning from this forum 🙏 Thankyou.
Thank you for your well thought out research. It is such a help. I too am unable to take antibiotics even amoxicillin without a flare of my condition. I cannot tolerate alcohol at all. I was one of those people that my B12 was showing 600 in blood, but just pooling and not getting into cells. I now self inject and keep folate up. I have still not been able to bring my enlarged red blood cells down. Which would normally mean I am quite hypoxic at cell level.
They diagnosed me with ME/CFS the fatigue is bad. It is not tiredness it is no energy in my electrical battery system, my mitochondria. I think an ME/CFS is a catch all diagnosis. If they had really looked at my blood tests properly years ago, they would have seen they were undertreating me on thyroid medication and my blood tests showing macrotosis (spelling). I still have bad ataxia. It is like trying to walk on a rolling boat. Also my feet, toes and fingertips tips are still numb.
I do have all the supplements you have suggested and I will up the anti on them. Sometimes I get so fed up with taking so many supplements. The one thing I would suggest is the Seven Seas cod liver oil is not good. It has been bought out by big pharma. They heat it to such a degree that there is no useable DHA in there. I use Rosita's cod liver oil which comes in a dark glass bottle and has to be kept in fridge.
Once again thank you for all your well thought out research. It is most helpful.
No problem! I'm trying to just get this out there because I think this issue is not well understood and no one I spoke to, whether it be scientist, doctor, or anything (I'm well connected) had any clue about what was going on with me and why I could not tolerate anything to treat my infection.
But it is a lot more common than I realized in people with B12 deficiency, and in general, those with small fiber neuropathy. I've come across so many people now in different groups and forums.
I don't think everyone will figure this out and they'll assume they can never take these antibiotics or anything ever again. It's clearly not true, as my experience shows. It's a tolerance issue, not an allergy. It's just our nerves are too vulnerable to tolerate certain things until they heal enough.
I didn't personally have numbness if I stopped taking antibiotics, but did start developing it while trying to use them. And then it would go away when stopping. That was early on before I knew I had an issue with B12.
I also had chronic fatigue but I think most of it was to do with having a chronic infection as that would generally go away if I tried the antibiotics.
Most of my blood work seemed kinda normal, except my RDW% was going higher and that can be a sign.
I had a B12 test in the middle of December 2022, and at this time I was taking 160 mcg a day of B12 that was in a multivitmain for a while, maybe since the late summer. This got my levels from 300s (tested in March 2022) to 707 ng/L by December 2022.
It was only when I started taking the high doses of 1000 mcg, 5000 mcg, or even more some days, that I had MAJOR improvements in all the weird symptoms I had been having that year.
Of course, I wasn't truly aware that it was a B12 deficiency until I started really improving on high dose B12. The doctor would have said 707 ng/L was normal and I'd have been on my way not knowing it was a B12 issue... And the reason for my increased levels was due to supplements, but that did not mean the issue was resolved. B12 deficiency requires long term treatment and maintaining high levels of an extended period of time. And it was only when I massively increased dose to beyond 1000 mcg that the major improvements happened.... even though 160 mcg got my levels to 707 ng/L (I clearly absorb B12 fine).
Alcohol is another trigger for sure. Very common actually. And I'm not surprised that Amoxicillin caused issues as it has effects on ion channels and GABA. If you can get to a point where your nerves are healed, you'll probably be fine. But certainly, R Lipoic Acid taken 1 hour prior to antibiotic dose was helpful to me while my nerves were mostly but not completely healed.
There are some antibiotics though that you really do want to be careful of, like the ones i mentioned: quinolones, flagyl, for example. Those do have neurological side effects and can be permenant.
It didn't seem that the supplements or antibiotics caused a true worsening of the neuropathy for me, but simply an exacerbation of symptoms. I did a lot of experimentation to figure out how to block these side effects during the year. I was mostly unsuccesful until R Lipoic Acid and until my nerves healed.
It is good that you can take high dose B12 and it is usable. The 300 blood test was so low. I could not do that, I would only absorb a small part of it, even with sublingual's. I have always been running a low grade infection of gosh knows what. My glands in neck were always up. Before Christmas last year my glands swelled to the size of 2 half hard boiled eggs stuck on each side of my neck. Even the glands in the back of my neck came up. I was so poorly with the pain that I could not even swallow water. I was so dehydrated I had to be hospitalised and put on IV's. I was diagnosed with re-activated Epstein Barr, tonsilitis and strep B. Also my gallbladder started to play up and I had an ultra sound, 2 - 6 mm stones but so much sludge. I was on 4 lots of antibiotics, I knew not to take the other ones. So I opted for Amoxicillin, Amoxicillin Clavellate, and 2 lots of penicillin's. That is when I took a big tumble.
I was in the hospital 10 days, no B12 in that time and any of my other supplements. I could not eat the food it would start my gallbladder pains off. I was so use to eating real organic wholefoods, no gluten and no seed oils. Hospital food is poison. I went downhill again pretty fast after this.
It has since left me with a big meat aversion too I was never a big meat eater. So gosh knows what has happened there.
I am going to follow you, if that is ok. I follow a couple of people on here that are really researching the in's and out's of it all. The NHS will not do this, unfortunately
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I was never a big meat eater. So gosh knows what has happened there.
Nerve pain? - in heal and ball of foot - Desperate
Implications of elevated HoloTC (active B12) and HoloTC > 20% of serum B12?
PLEASE HELP WITH SUSPECTED B12 FUNCTIONAL DEFICIENCY
