Reactions to Antibiotics and unable to treat UTI/Prostatitis

[Whoa182]

Hello all,

I'll try to keep this as short as possible!

Background: Vegan since 2012, vegetarian from 2007. I stopped multivitamin that contained 160 mcg of B12 in July 2021 until late July 2022. Dietary intake 1 mcg b12 /day for a year (swapped out soy milk for another version and it wasn't fortified)

B12 reading was 371 ng/L in Feb 2022. I developed very bad stomach problems from April to August 2022, which I used lots of antacids, I wasn't eating much, and my diet was B12 deficient. I suspect that my B12 levels from Feb to late summer had dropped a lot.

I do not have PA but I would really like your help, please.

I believe I became B12 deficient, which lead to lots of symptoms such as: dizziness, palpitations, gut motility problems (like gastroparesis), joint and muscle pains in morning (as if I had been exercising night before), stiffness at back of legs, cramping, mouth sores, angular cheilitis (both sides of mouth), very cold feet. And then in September, I developed burning sensations and tingling (2 days after tetanus shot!). I thought that was the reason, but now I believe it just unmasked an issue with my nerves. All these symptoms would wax and wax over the year.

Then a few weeks later after vaccine and a course of Amox for dental inection, I developed prostatitis and attempted to treat it with Doxycycline, but every time I would try, I would get intense burning sensations all over my body. It was unbearable! I tried Trimethoprim, and I would get the exact same thing; burning and tingling in my legs and arms (many years ago, I took both of Trim and Doxy without any problem whatsoever. Now I can tolerate them).

The B12 at 160 mcg / day got me to 707 ng/L by December 23rd 2022. However, I did NOT notice any improvements with my nerves at this dose, despite the fact that I am absorbing it well.

It was around the 27th of December that I started 5000 mcg of B12 methylcobalamin, and then since then I have been RAPIDLY getting better. The painful burning is almost entirely gone already, and is only present when under the blankets in bed for example. The tingling has turned into a more pleasant tingling sensation. I am also noticing that when I sit on the toilet or lean against things, my limbs don't tingle nowhere near as much anymore.

From my research, I've discovered a couple things about these two antibiotics that I tried, which might be useful to know for people here:

1. Doxycycline can induce damage in nerves that are exposed and it also can under certain circumstances, disrupt myelin. I am guessing, with a B12 deficiency, this makes sense why I am reacting to Doxy the way I am. I was undertreating and every time I was having severe nerve pain and reactions to antibiotics, it increased demand for more B12 that I did not have.

2. Trimethoprim can induce B12 deficiency. We know that it can interfere with folate and induce folate deficiency very quickly, within days.

Histologic effect of doxycycline sclerotherapy on rat femoral nerve

"Results: The results suggest that topical doxycycline induces tissue reactions which are different from normal saline. These reactions include stimulation of a local giant cell inflammatory reaction and disruption of the myelin sheath."

"Conclusions: Despite the fact that this study does not give physiologic evidence of neurotoxicity, the histologic results suggest that topical doxycycline may cause nerve damage directly or indirectly. We conclude that doxycycline should not be used for sclerotherapy where unprotected nerves are exposed to the agent until further physiologic tests are performed to prove its safety."

pubmed.ncbi.nlm.nih.gov/890...

TRIMETHOPRIM

Also: "Drug induced B12 deficiency –includes Metformin, Trimethoprim, Colchicine, Neomycin, anticonvulsants, long term use of PPI or H2-antagonist drugs. "

nottsapc.nhs.uk/media/1330/...

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My questions:

1. Do you think I should be fine with taking Fosfomycin or a Penicillin antibiotic? I have an appointment with a private urologist on Thursday. I will never take a quinolone, and obviously with my reactions to Doxy and Trim, I'm left with few options. Two potential drugs to treat it include Fosfomycin and Pivmecillinam.

2. Has anyone here had similar kinds of reactions to antibiotics that they used to take with no problem at all? And once you solved the B12 deficiency and repaired your nerves, were you able to take the antibiotc?

3. What would you do in my situation? I have lived with this infection for months and it's made my life miserable. I have low grade fevers all the time. The antibiotics work extremely well, I feel "well" when I take them, aside from the nerve pain. Is it best to wait for more healing before treating the infection?

It's a very difficult situation but I have to do something. I've even been looking at phage therapy, direct injections into prostate and surgery as a last resort!

Thanks!

[Nackapan]

Personally I would treat the infection now.You've had s good rrdponse from oral high dose b12.

You are on thd Road tk recovery.

Some do have side effects ftom methylcobalabin.

Perhaps use a different form for half of the dose or alternate ??

Incase giving you side effects.

Cyanocobalamin is often tolerated better.

All ends uo bring converted .

I'm not familiar with the antibiotics you use.

All I know is when I had to have two rounds of amoxicillin for z tooth it made me more ill then ususl and j got oral thrush. .A first .??

I persevered so the tooth colkd be extracted.

Others have problems with antibiotics too and upped their dose of b12.

If you've tried othef ways to clear thd infection and it's not worked theres not much choice really apart from trying another antibiotic.

Grim I know .

[Technoid]

I have no knowledge or expertise on antibiotics but I would look for one that does not affect B12 or nerves if you can get it. I would not wait on treating the infection and would continue with the B12 supplementation if its working for you.

Yeah B12 at 160mcg daily is only slightly over the minimum maintenance for B12 for vegans which I believe is around 100mcg single daily dose. With gut issues a positive feedback loop can happen where the gut is damaged so B12 absorption and recirculation goes down, which damages the gut further since damaged cells are not replaced properly etc. At that you point you need megadoses to start getting enough in via passive absorption to turn things around, or injections where things are really bad.

[Whoa182 in reply to Technoid]

Yeah, I think the gut issues probably a big factor in this. For 4-5 months, my stomach was irritated, I had gastritis. My lower stomach bowels were not functioning properly or moving food like it would. Had a lot of gas, bloating, cramping, etc. Being already low in B12, that probably took me down a lot further by late summer or when I had the jab in September.

On my test result, even though the number was 'in range' in Feb 2022, it says that "if any suggestive features are present of B12 deficiency such as peripheral neuropathy, then seek further advice".

I don't really know just how fast B12 can drop if one is deficient in their diet, had chronic stomach issues, had antibiotic use (amoxicillin), had COVID early in that year, and had the tetanus vaccine. I suppose all of this would deplete B12 faster and increase the demand for it.

So if my level was 371 ng/L in Feb, what was it by the time I started getting neuropathy in September? Perhaps in the 200s wouldn't be hard to imagine. But I suppose it's all guesses at this point. At least I am improving a lot with higher dose supplements.

Going to see urologist on Thursday, so I'll see what he has that he can give me. I'll probably try Fosfomycin, as that is only 7-8 doses over 2 weeks combined with NAC, and it has around a 80% cure rate. I suppose that's better than 4-12 week courses of Doxycycline or Trimethoprim.

[MrsTuft]

it was nitrofuratoin that caused my last B12 crash as it decimated B12. You’ll be fine with a wide speck trim antibiotic to clear the infection as it’s the narrow spectrum ones like Nitro and Trimithoprem that deplete B12/B9. Drink plenty of water. Organic sour cranberry. Give up sugar. Look into dmannose. There are antibacterial drugs that aren’t antibiotics too. Doctor can ask for help from urology. Glad your B12 symptoms improving. Mine are too but not there yet and it’s nearly a year.

[Whoa182 in reply to MrsTuft]

Thank you for the suggestions!

My diet is already largely plant-based and has been that way for 20 years. I mainly eat just fruits, vegetables and greens, beans, some wholegrains; oatmeals, and also olive oil, etc. Drink mainly green tea (matcha).

I drink cranberry a few times a day. I've found it helpful at keep away urethritis but doesn't do anything for the prostatitis sadly. And D mannose doesn't work because it's not E coli. Over 10 years ago, had a UTI/prostate infection that was E coli, and D mannose was VERY helpful. Eventually cured it with Doxycycline and a few supplements combined.

My nerve issues were relatively mild I think. Never got to the stage of numbness and the only time nerve issues were unbearable was when I was taking the antibiotics I mentioned in my post. Once I stopped them, things settled down within a few days. I wish I had realized I had a B12 issue prior to taking the antibiotics though, as I think I'd be a lot further in healing my nervous system by now, and I think the damage from the reactions I had to the antibiotics just lengthened my recovery time, ultimately.

Hope you improve more soon I know nerves can take a long time, up to 30+ months in some cases.

[MrsTuft in reply to Whoa182]

Sorry I missed that you were a man. Zinc? Saw palmetto? One of the wide spectrum antibiotics that would work for that infection? Thank you for your kind wishes. Why don’t have you have a regular B12 injection as you’re vegan?

[Whoa182 in reply to MrsTuft]

I take Zinc Picolinate and I take finasteride (have done for a while). Saw palmetto is also part of my multivitamin.

I live in the UK and the NHS guidelines prevents my GP from prescribing me other antibiotics that could help. The options are only Trimethoprim, Doxycycline, and something like Cipro (I can't take Cipro because it caused me bilateral achilles tendonitis and severe insomnia that took months to recover from in 2007).

I had to raise money to go private and/or do phage therapy. So that's where I'm at right now.

The antibiotic that I am most interested in, but I've never taken it before, is Fosfomycin. That is the shortest course and can be quite effective.

"Twenty-eight patients with clinically- and microbiologically-confirmed CBP who attended a single urological institution between January 2018 and March 2019 were treated with oral administration of 3 g FT once a day for 2 days, followed by a dose of 3 g every 48 h for 2 weeks, in combination with oral administration of NAC 600 mg once a day for 2 weeks."

"Microbiological eradication was documented in 21 (75%) patients at the second follow-up visit"

The other antibiotic I was interested in hearing if anyone tried here was Pivmecillinam (also called Selexid)

It's a shame that I can't tolerate Doxycycline or Trimethoprim. I've made multiple attempts since September. And tried everything I can think of to protect my nerves like NAC, Acetyl L Carnitine, Quercetin, Benfotiamine, etc. Nothing stopped the burning / neuropathy pains when I started taking the antibiotics. The only thing I never thought of was B12, because I had already been getting it in my multi at 160 mcg anyway.

I had been looking everywhere for months for people who react to antibiotics like I do. It seems that people with B12 deficiency in particular have more issues than others who have neuropathy due to other causes.

The antibiotics I tried to take work extremely well. They get rid of my flu-like symptoms, the burning, frequency all get better. I am not in pain when I take the antibiotics. It's just so frustrating to have these side effects. Before 2012, I took Trimethoprim for months without any issues at all! And same for Doxycycline, too.

So, something had changed with my body. It's super bizarre to have the exact same side effect from both antibiotics, right? So there must be something fundamental going wrong in my body. The most likely thing seems to be an issue with B12. I think because B12 is so important for cell metabolism and nerve function, it's important for maintenance and regeneration of myelin, having a deficiency, elevates the toxicity of antibiotics. For one, we know that increased MMA is damaging to nerves and that already puts them under a lot of stress already. And then without the myelin sheath, that allows toxins (including xenobiotics) to damage the axons more easily.

I think it all makes sense now. I had to figure out all of this by myself as my doctors were not much help at all. They could not understand why I was reacting to badly to antibiotics.

[MrsTuft in reply to Whoa182]

hasn’t your doctor referred you to urology?

[Whoa182 in reply to MrsTuft]

It's a 1-2 year wait. I was referred in November. I raised the money from GoFundMe to go privately. The GP said it's possible that it can speed up my NHS referral if I mention it to them (it's basically the same consultants) and have the tests done, and get a diagnoses etc.

1-2 wait would be okay with me if I could actually use the antibiotics to treat the problem and calm things down. But I'm stuck with Ibuprofen, and that can only do so much.

[MrsTuft in reply to Whoa182]

You’re preaching to the choir as I just paid £13k for an operation i couldn’t wait for. The system is broken. I wish you well. Chronic UTI is grim.

[Whoa182 in reply to MrsTuft]

Yeah, as much as I loved the NHS before and felt it was a good thing... Right now, it's broken. It's shocking how bad it's become in recent years - especially since the pandemic. I feel quite abandoned by the system tbh. And it's not like I've abused my body, I tried as hard as I could to remain healthy. Never smoked, don't drink, never done drugs, ate healthy for 20 years and exercised my entire life. Don't I get any points for that? lol

I made a mistake with B12, a dumb mistake. But I had so much going on at the time I just got complacent.

Anyway, I just found a group on FB called Vitamin B12 wake up group... and wow. There are SO MANY people who have similar reactions to me with antibiotics, making their neuropathy worth. Even saw comments saying that they fine once they were taking the B12 injections and taking the same antibiotic at the same time.

It seems there is a connection. Honestly, this has been such a weird and bizarre experience for me. Doctors could not figure it out at all, I had to figure this out by myself. But there does indeed seem to be a connection between B12 deficiency and elevated risk of side effects, particularly of the nervous system / neuropathies.

And thank you, you too.

[Technoid in reply to Whoa182]

Whoa182,

You might know of these already so apologies if this is old news to you but there are some great complementary multi's out there now for vegan diets that cover all the main nutrients that are more difficult to obtain on vegan or fully plant-based diets.

Complement :

lovecomplement.com/products...

Eimele Essential 8:

eimele.com/products/simon

Sunday Natural Veganlife Essentials

sunday.de/en/veganlife-basi...

In terms of comparison, Eimele has Calcium and Iron where Complement has only Magnesium and Sunday Natural has a lot more Calcium (400mg). Eimele and Sunday Natural have slightly less Vitamin D and Eimele uses Cyanocobalamin B12 while Complement has a Methylcobalamin/Adenosylcobalamin 50/50 mix. Sunday Natural has less B12 than the others but in a three natural form formulation(hydroxo/methyl/adenosyl), but no Omega-3 EPA/DHA unlike the other two. So pluses and minuses and one may suit your individual nutritional needs better than another.

Here also are three other good options that are closer to a normal multi in terms of what they provide:

vegan-vitality.co.uk/produc...

vegetology.com/supplements/...

sunday.de/en/multivitamin-e...

[Whoa182 in reply to Technoid]

Thank you, I'll take a look at them. I was using a multi for years and supplementing B12 every now and then to boost levels up. Unfortunately, for whatever reason, I stopped the B12 in 2019, and then stopped taking a multi in July 2021 to late July 2022. And with my diet only giving me 1 mcg / b12 a day (I swapped out a fortified soy milk for a non-fortified one, doh), and all that probably lead me to becoming deficient (along with the stomach issues).

I was taking Now Foods Multivitamin for Men (vegetarian capsules).

[Technoid in reply to Whoa182]

This one right?

nowfoods.com/products/suppl...

It's pretty good but the advantage of the vegan focused multi's is you also usually get less of what you don't need (vitamin C, Folate), and usually some Omega 3 EPA/DHA which should reduce the extra stuff you need to buy. I 'm also not crazy on the trend for thousands of times the RDA of B vitamins and this one has B6 at 25mg. Thats on the safety borderline and although it shouldnt cause issues I personally don't like those kind of massive doses long-term and usually look for RDA level supplements which have more evidence for long-term safety.

Examples of RDA or ~ RDA level B supplements:

health4all.co.uk/product/b-...

sunday.de/en/b-complex-buck...

Yeah, an annoying thing about health food stores is I found they often don't stock fortified plant milks. This is a big oversight imo. If soya milk is not calcium-fortified its not a comparable one-to-one substitution for dairy milk and you'd need to take more care then about other Calcium sources - leafy greens, calcium-set tofu, etc to meet requirements. Getting slightly substandard amounts of Calcium wont show up in the blood because the body pulls it from bone but after some decades you start to see the risk of osteoporosis, fractures etc - not something anyone wants...

I use Cronometer to see an average day's intake and supplement based on that. Its a little bit of bother but you dont need to do it every day, just enter a typical days data and you can roughly see where you're at and if you're falling a lot short. It will save you both in terms of not buying supplements you dont need and understanding where you need to boost anything thats regularly falling short.

[ACritical]

Winclove Probiotics B.V. make specific probiotic to take alongside antibiotics. It’s called Winbiotic Pro-UT. This worked a treat after having reoccurring infections over a year of taking antibiotics without this . I also increased my Hydroxocobalamin injections for awhile. So take the prescribed antibiotics together with the probiotics! Let us know if it worked for you as well.

[25092]

I have no medical background. I have pernicious anemia/B12 deficiency and was experiencing a UTI again and again. I started taking Garden of life women's probiotics 50 billion and it stopped the uti's. I pray they work for you also. Have a peaceful day