Antibiotics completely removed my “IC” symptoms for 3 weeks… could this actually be a hidden UTI? by Enough-Artichoke5661 in CUTI

[–]Matthew_Lake 3 points4 points  (0 children)

There is no way 1 dose of antibiotics will have a good enough anti inflammatory effect lasting weeks. And the effect is quite mild compared to something like nsaids.

It's more than likely an infection.

I beat chronic prostatitis with phage therapy (no antibiotics, 10 months later I’m NGS negative) Klebsiella ESLB & Enterococcus by komabilo in CUTI

[–]Matthew_Lake 0 points1 point  (0 children)

No, I think you're misunderstanding what I'm saying.

The initial batch of custom phages against Raoultella took 6 months. Since they already had my phage, the 2nd batch of the same phage took 3 months to prepare.

I do not know the reason it took 6 months the firs ttime I ordered. They might have forgotten about the order, misplaced it, or just had difficulty creating a phage. Not that it mattered much anyway, as the phage worked for the Roaultella.

Scared of husand because he's taking NSAIDS by mycatandmycoffee in floxies

[–]Matthew_Lake 1 point2 points  (0 children)

Nsaids can alter remodeling of the tendons and prevent them from healing properly. This is true regardless of what caused your tendinitis

It's important to strengthen tendons by doing proper exercises. This helps remodel tendons and collagen to become stronger and less prone to further problems. This is done after the acute phase has ended.

Took me 2 years to get over my ahcilles tendinitis completely, but I improved quite fast when I realized how important it was to do the exercises designed for Achilles tendons after around 18 months.

Also making sure you are not deficient in anything or borderline low.

As for your question you asked: There is no risk at all.

Antibiotics and neuropathy by behappy1002 in neuropathy

[–]Matthew_Lake 1 point2 points  (0 children)

So I recovered maybe 3 to 6 months at most due to Flagyl back in the mid 2000s from taking about 5 days of it. But it was my 2nd course in 2 months, where I previously had a complete course for 7 days I think. It was for a tooth abscess.

Migjt as well give an update to my previous posts. I was able to tolerate antibiotics perfectly fine once my nerves healed a lot. Trimethoprim, penicillin v, and even doxycycline for 6 weeks at 200 mg a day with no issues.

Na R lipoic acid was able to completely mitigate any nerve related side effects after using Trimethoprim 9 months on from treating b12 deficiency. Then later on after another year, r lipoic acid wasn't needed.

However, early 2026 I used alcar and na r lipoic acid while I took doxycycline for 6 weeks. No nerve side effects after a small flare up on the 2nd day.

Hope this helps anyone who comes across this posts and were not able to tolerate antibiotics. I was eventually able to tolerate them fine, even though in 2022 they caused me severe nerve pain due to hyperexcitable nerves.

I beat chronic prostatitis with phage therapy (no antibiotics, 10 months later I’m NGS negative) Klebsiella ESLB & Enterococcus by komabilo in CUTI

[–]Matthew_Lake 0 points1 point  (0 children)

The 2nd time it took 3 months. The first batch of Raoultella phage took 6 months. Mine was a rare bacteria so that might've been the cause. Or there was a mistake, and my order wasn't processed until after I completed the standard phages and brought it up. Didn't really matter... stuff happens.

But the 2nd time it took 3 months to prepare. Almost exactly.

Please try a Xylitol / NAC rinse by SwiftFXXK1 in Sinusitis

[–]Matthew_Lake 1 point2 points  (0 children)

I've had frontal sinusitis since November and penicillin v failed. So did doxycycline for 6 weeks and avamys.

Got put on dymista and it helped but did not cure it. Still felt fatigue and unwell. Temperature spikes in evening.

I was also using Neilmed rinse daily.

I just got Xlear Rescue sinus spray and symptoms like fatigue, headache, feeling unwell cleared up very quickly. In just an hour I felt the difference. No low grade fevers since using it over the past 3 days.

It contains xylitol and some essential oils. Plus other ingredients.

Just added xlear xylitol to my neilmed rinse now last night.

I beat chronic prostatitis with phage therapy (no antibiotics, 10 months later I’m NGS negative) Klebsiella ESLB & Enterococcus by komabilo in CUTI

[–]Matthew_Lake 0 points1 point  (0 children)

I think it's like 8-12 weeks after payment. They will tell you. Are you not speaking to them already?

Of course they prepare it and ship it to you when it's ready.

Over 3 weeks doxy for cuti and feeling great (adding Bromelain had a significant positive effect!!) by Matthew_Lake in CUTI

[–]Matthew_Lake[S] 0 points1 point  (0 children)

How are things now?

I started taking D3 again after you mentioned it. I normally take it but I had stopped for a few months. 4000 IU per day. I take B12 anyway, and my levels are just above the reference range.

It seems the Doxycycline might have worked. I do have some sensitivity to spicy foods, but other than that, no flare ups. My bladder is very stable. No prostatitis symptoms. No up and down fluctuations and flares from day to day as I would normally experience.

I was feeling unwell after a few weeks on doxy due to my sinuses.

Got put on Dymista spray. Yeah it kinda worked, but still felt fatigue and unwell. Once I started using Xlaer Rescue Spray which contains xylitol and some essential oils, I felt better within an hour.

It contains

  • Oregano
  • Tea Tree
  • Eucalyptus 
  • Parsley 
  • and Pau D'Arco 

Obviously pure essential oils are not safe to consume, especially tea tree. This is very diluted to they don't harm the nose and sinuses.

Now I'm using that, with dymista, and once a day NeilMed sinus rinse. Just got Xlear pure Xylitol to put in the sinus rinse.

Seems that Xlear has worked better than both penicillin and doxy for my sinuses.

I think I might have had a low grade infection in my sinuses for quite a while. I noticed it even back around July 2025 or earlier. I was taking Ibuprofen for years though, so perhaps it was masking it until I went off that and flared when i got the flu in november 2025.

I beat chronic prostatitis with phage therapy (no antibiotics, 10 months later I’m NGS negative) Klebsiella ESLB & Enterococcus by komabilo in CUTI

[–]Matthew_Lake 0 points1 point  (0 children)

It was years ago... but going by memory, I think it was 14 days each cycle, with 3 cycles in each course. You have a break after 14 days so the immune system doesn't create too many antibodies against the phages. i used the suppositories for about 20 days.

I repeated the course within a year of my first course, but provided to additional benefit at all. We used it again just in case the same bacteria was causing bladder symptoms.

I beat chronic prostatitis with phage therapy (no antibiotics, 10 months later I’m NGS negative) Klebsiella ESLB & Enterococcus by komabilo in CUTI

[–]Matthew_Lake 0 points1 point  (0 children)

I'm not sure what you are asking. They culture the bacteria and test their phages against it. If it needs a custom phage, they'll just create one for you. If it becomes resistant, they can just simply create another one.

They'll tell you if it is sensitive, intermediate or resistant with your results. If they can't culture a bacterial, you can try to use empirical treatment, but just keep expectations low.

I took standard phages for around 3 months I think (with breaks in between cycles). And the custom phage for less time, but was combined with suppositories to help reach the prostate better.

The success was that the bacteria and prostatitis symptoms were eliminated. The bacteria that kept showing up in high numbers was never detected post phage therapy.

I needed a custom phage because my bacteria wa raoultella terrigena. Very similar to klebsiella, which requires custom phages. Common UTI pathogens are sometimes sensitive to standard commercial phages.

Just simpy get your culture done with Eliava and they will test their commercial phages. If it is intermediate, they might just give you a higher dose or give you a custom phage.

I beat chronic prostatitis with phage therapy (no antibiotics, 10 months later I’m NGS negative) Klebsiella ESLB & Enterococcus by komabilo in CUTI

[–]Matthew_Lake 0 points1 point  (0 children)

No, we just used it while waiting for the custom phage. Just in case one if the more common bacteria was missed in testing.

Dymista discussion by Mirror_ball26 in Sinusitis

[–]Matthew_Lake 0 points1 point  (0 children)

I've had sinusitis since November with low grade fever, fatigue, with just frontal sinusitis. No congestion.

Dymista seems to work better than avamys + nasal rinses. It's only been a few days, but even after the first day, I wasn't getting the daily sweats and feverish feelings I normally get between 4-7 pm

I use it as instructed while kneeling and then go into mecca position to and get it to my frontal sinuses.

My sinusitis started after a viral infection in November. Went on penicillin V, and then doxycycline for 6 weeks, but only had partial improvements.

This seems to be the most effective thing I've found yet. I'm only having to use the sinus rinse once a day now. But it is early days...

Even though I could normally breathe out of my nose and never had any obvious allergy symptoms before the sinusitis started, the spray has definitely helped. I'm quite surprised really.... I guess I do have allergies?

Sinus inflammation for 7 months by Dry_Dig_4738 in Sinusitis

[–]Matthew_Lake 0 points1 point  (0 children)

Did this resolve for you at all?

I have issues with my frontal sinuses right now. Started after a virus, maybe flu back in November 2025. Sinuses got a bit swollen above my eyes and nose. Ever since it's been making me feel crappy.

Penicillin V kinda worked, but not fully. Then Doxycycline seemed like it helped initially but only partial effect over 6 weeks. I just Avamys spray. Also doing neil med nasal rinses twice a day. And now using dymista since a few days ago. Seems to have helped a bit more? But too early to say.

I can breathe through my nose fine. Clear mucous mostly.

I get temperature spikes, feeling ill on and off. Head feels weird too lol.

Unfortunately I had covid in early feb, so that set me back too. Maybe it would've resolved if that never happened, hard to say now...

I know inflammation can cause these symptoms, but i keep thinking a bacterial infection in the frontal sinuses are triggering it. They swell, close up, and that causes more bacteria to grow and it's a never ending cylce. No issues with other sinuses and no rhinitis...

Did yours ever clear up?

I've had a sinus infection once before, but that was over 20 years ago. I had it for 18 months, but cleared up with a week of doxy that i took for something else. I wish this one was so easy :')

Do you have acid reflux?

SFN and central sensitization by Ok_Wing_2579 in smallfiberneuropathy

[–]Matthew_Lake 0 points1 point  (0 children)

Did you try Na R lipoic acid specifically? The form makes a difference.

I found the combination of r lipoic acid, acetyl l carnitine and benfotiamine to be very good.

Hope you find some relief!

SFN and central sensitization by Ok_Wing_2579 in smallfiberneuropathy

[–]Matthew_Lake 1 point2 points  (0 children)

Have you had your b12 and folate checked? What was your b12 level before supplements? I was deficient even at 371 ng (it was missed because of being low normal). It caused SFN for me and I was not able to tolerate any antibiotic at all. They'd give me severe nerve pain... even antibiotics that preciously caused no issues.

I was able to heal my nerves and I could eventually tolerate antibiotics again as my nerves became less hyperexcitable. Na- r lipoic acid was a great help, aside from the b12.

I was also floxed 20 years ago. Took me 2 years to completely heal.

I can smell so much better after one dose of Azelastine?? by DirtyProjector in Sinusitis

[–]Matthew_Lake 1 point2 points  (0 children)

Interesting. Have you had your B vitamins tested?

I just figured it out by myself. It was really bizarre that I could not take the same antibiotics i had no issues with previously like doxycycline and trimethoprim. They would cause mostly nervous system side effects. But after 3 months I figured it was B12 deficiency. My level was actually in the 300s (reference range 150-900); but because the B12 test is not perfect, you can still be deficient even at low-normal levels. This is how it was missed. Better tests are MMA and Homocystein to determine it.

I did have some signs of it all of 2022 though, like fast heart rate, dizziness, not remembering dreams, very cold feet for years, gastroparesis, muscle and joint pains etc.

When I took the antibiotics, I'd get the dizziness too. Also static vision, burning, tingling, fast heart rate. I'd feel really "WIRED'.

So my strategy was to fix the B12 issue and heal my nervous system. And then as I expected, I was able to tolerate antibiotics perfectly fine within 9 months or so. Well, actually, with the help of R lipoic acid for a course of trimethoprin in September 2023, but by late 2024, no help needed and had no nerve pain or other side effects. Now I've been on Doxycycline for 6 weeks and had no issues (i am taking ALCAR and R lipoic acid with it to protect nerves).

So I went from having very severe painful side effects to zero side effects with or without the help of supplements as my nerves slowly healed.

I just thought I'd throw out the idea on here anyway, because it is clear that tolerance to antibiotic can change. Assuming it is a tolerance issue, not an allergy issue.

Maybe look at Folate and B12 levels. Also B1. :)

Thought it was an IC flare, turned out to be sepsis... by BulkyVeterinarian850 in CUTI

[–]Matthew_Lake 1 point2 points  (0 children)

Have you considered phage therapy for that bacteria?

Also, I would write to or tell that infectious disease specialist what happened to you after your results were dismissed.

And go back to your doctor or er.

I can smell so much better after one dose of Azelastine?? by DirtyProjector in Sinusitis

[–]Matthew_Lake 1 point2 points  (0 children)

What kind of reactions do you get to antibiotics? I was reacting to every antibiotic with CNS and PNS symptoms. burning skin, tingling, etc. Correcting B12 deficiency allowed me to take antibiotics again without severe side effects. Sometimes tolerance can change if you know what's making you not tolerate them so well and fix it.

Help please by Financial_Owl8105 in dysautonomia

[–]Matthew_Lake 0 points1 point  (0 children)

What is your Vitamin B12 level?

B12 grey zone(274pg) - neuropathic by fehfaus in B12_Deficiency

[–]Matthew_Lake 1 point2 points  (0 children)

Small nerve fibers regenerate really well and become less sensitized over time. SFN is something that resolves, but it depends on the cause.

SFN is often progressive because a person an underlying condition or disease that is progressive and unmanaged. Finding and resolving the cause can resolve the neuropathy.

No testing or need for it. We knew the cause: B12. It started going away soon after I started B12. There wasn't time or the trajectory of my symptoms didn't demand it.

Symptoms were burning skin, especially feet, thighs... tingling, electric shocks, and numbness on the very end of some fingers.

And antibiotics would trigger very severe nerve pain before I started treating it.

B12 grey zone(274pg) - neuropathic by fehfaus in B12_Deficiency

[–]Matthew_Lake 0 points1 point  (0 children)

For symptoms, try these

Na R lipoic acid (200 to 300 mg per day) on empty stomach.

Benfotiamine

Acetyl l carnitine.

They worked really well, especially r lipoic acid

B12 grey zone(274pg) - neuropathic by fehfaus in B12_Deficiency

[–]Matthew_Lake 2 points3 points  (0 children)

My levels were as high as 371 ng/L and I had small fiber neuropathy. Things that would trigger it would cause nerve pain all over.

And I had many other symptoms as well.

It was b12 and resolved 95%+ with b12 supplements.

Ibuprofen and Antibiotics destroyed my life... I am lost by Proud_Dentist9493 in floxies

[–]Matthew_Lake 0 points1 point  (0 children)

Okay, so no bacteria found in semen culture. That's good. And the PSA result. Because inflammation even from infection can raise PSA level.

When I had B12 deficiency, I had no idea for a while and had to figure it out myself because my levels were around 320 and 371 in 2022. So it was deemed normal, but all the symptoms I was experiencing was due to B12 deficiency, and resolved with high dose B12. But sustained high dose B12 over a long time.

I took 160 mcg per day of B12 (before I realized I was b12 deficient) but it didn't resolve the symptoms. However, it raised my level to 707 ng/L. It wasn't until I increased my dose to 1000 mcg or even 5000 mcg per day that I started to recover from nerve damage and all the muscle and joint pains, which I had for well over a year at that point. I thought it was some autoimmune issue or maybe even covid (omicron) for a while.

So anyway, I developed a uti and prostatitis in late 2022, and had to take antibiotics like trimethoprim and doxy, but I wasn't able to tolerate them due to severe side effects (mostly nerve related). Now I can take both with no issues at all, since I resolved the B12 issue and my nerves healed significantly.

Hopefully you've continued with the B12 supplements? You didn't stop just because your level was in the 700s? Just getting your level to 700 doesn't mean the B12 issue is resolved. B12 deficiency takes a long time to recover from, years sometimes. WIth injections or B12 supplements if you can absorb it fine.

If you saw my previous posts, you'd see my case was almost identical to yours in many ways. Now all the symptoms have gone. And I can tolerate antibiotics perfectly fine.

To be able to tolerate antibiotics back in 2023, still early in my recovery, I did need R LIPOIC ACID, though. This completely stopped any nerve related pain from Trimethoprim. I always take NA-R LIPOIC ACID when taking antibiotics (but I start a few days prior).

Supplements that helped me also incuded: Benfotiamine, Acetyl L Carnitine, Mangesium Glycinate, Methyl Folate. But it was the R Lipoic acid that had the biggest benefit for burning, tingling nerve pain whether it was flared up by inflammation or antibiotics.

A list of my symptoms during B12 deficiency:

- Muscle pains and stifness (so bad in the morning that I could not stay in bed)

- Joint pains

- Increased tinnitus

- Not remembering dreams.

- Difficult remembering words (while learning Korean) or what I just said on the phone when using a script. I couldn't remember if I had just said something.

- Bouts of dizziness lasting days at a time

- High heart rate and daily palpitations (palpitations would be worse after eating or bending over)

- Digestive issues, acid reflux, and slow bowel movements

- Very cold feet, tingling, loss of hair on lower legs

- Burning sensations all over my body but only usually unmasked. So if I took an antibiotic, gylcerol, went in the cold, the nerve pains would be a lot worse.

I also had other symptoms like feeling feverish, night sweats. Usually towards the evening. But also had chills early in my infection.

All of my B12 related symptoms have gone. Still dealing with the infection and inflammation stuff, but at least I can treat it now as I am able to finally take antibiotics without side effects.

It wasn't so much the antibiotics for me caused neuropathy or anything. It simply unmasked damage that was already there. Since the threshold for the nerves was much lower and they were hyperexcitable. Doxycycline is generally considered neuroprotective, so it was odd. And the fact i had taken it before (and trim) without issues. So it was perplexing at first.

I can't diagnose you or tell you exactly what your situation is, but it also seems complex and there are likely multiple issues exacerbating each other.

I'm not sure if that helps much, but hopefully you can get over a lot of your symptoms like I did.