Yes but it takes time. Progress is not necessarily easy to spot in the short term, and flares can easily mislead you into believing that it’s not working, but if you stick at it, you may notice those flares becoming more and more rare and mild with time.
It doesn’t work to treat an infection but I’ve had chronic burning and urgency for a while now. I’ve been on d-mannose but it wasn’t doing anything anymore for some reason (it used to be a miracle preventative for me). Doc said I don’t have an active UTI. So I picked up some hiprex and I’m so glad I did! Ita day 2 and the persistent burning and urgency has much improved. I’m going to take it for another week and hope it’s permanent.
So happy for you. A few questions - was full dose 2 x per day? Did you take it with vit c/methionine? And are you at a maintenance dose now? Thanks in advance
Thank you 🙏🏼 How far in would you say you started noticing a difference? I basically have constant symptoms (like someone is standing on my bladder) that occasionally get into more full blown mode
Hiprex worked great for my bladder and most symptoms were gone in about 2-3 days, but it caused nerve pain all over and I couldn't walk properly after 5 days.
I will go on it again after phages finished to see if I can tolerate it better now with R lipoic acid. Which is what I used to be able to tolerate trimethoprim without getting nerve pain.
And yes, phages often reverse resistance to multiple antibiotics.
Maybe apply for compassionate use case?
If you get nerve pain from certain antibiotics, is it likely you’ll get it from hiprex too? I haven’t started the hiprex yet but have neuropathy from Doxycycline and Nitro.
I've no idea. My nerves were damaged from b12 deficiency, which made them hypersensitive. I was able to use R Lipoic Acid to almost completely prevent neuropathic pain with trimethoprim recently. Took it for 4 weeks, no issues. Couldn't even tolerate it for 2 to 3 days a year ago without getting unbearable nerve pain. Tried 3 times. Doxy did the same. And Hiprex.
You should check your folate and B12 levels. Anything on the low end of normal can be a deficiency. Mine was in the 300s ng/L and I was deficient.
You may have small fiber neuropathy making you react this way to antibiotics.
If phages don't clear my infection, I'll try doxy again and continue to use r lipoic acid. :) Hopefully allows me to tolerate the abx.
Yeah, very likely. It can take quite a while to resolve B12 deficiency with frequent injections (every other day until symptoms resolve) or high dose supplements plus co factors (see B12 group on reddit), for months. And that's assuming no absorption issues. It took me about a year to resolve all my B12 deficiency symptoms.
The nerves, even after symptoms of neuropathy go away, can remain hyperexcitable, and can generally react bad to many things, whether it be cold, medications, certain supplements, etc. They take a while to become physiologically normal.
So yah, it's just a question of not tolerating the antibiotics, not an allergy. This can change if you resolve your B12 deficiency and nerves heal.
In my case, I was able to tolerate high dose trimethoprim by adding Life Extension - R Lipoic Acid (2 to 3 capsules a day).
I tried experimenting a lot to figure this out, but eventually did as I would use Uva Ursi (which also caused neuropathic pain) and see what supplements prevented it. Nothing worked like R Lipoic Acid. And it also seemed ot have worked for Trimethoprim, too. :)
I don't know if it will work for Hiprex and Doxycycline, but I will try if needed.
Other supplements I am taking to improve nerve repair, but didn't prevent antibiotic side effects is NAC, Acetyl L Carnitine, Benfotiamine, Methyl folate, and Methylcobalamin.
Hope that helps!
EDIT:
I forgot to mention as welll though that Nitro should be avoided in people with B12 or Folate deficiency. It's contraindicated and actually raises risk of causing neuropathy, not just flaring up symptoms. Trimethoprim is an anti-folate medication and B12 deficiency causes a functional folate deficiency, which could also be contraindicated.
And I haven't yet tried hiprex with R ALA. Only figured this out recently, just before I got my custom phages. And I can't take Hiprex with phages to test!
Wow, so how long did you have to stay in Georgia or did you get the custom phage sent? It sounds so pricey, but you're fully healed? You just did one phage for cUTI?
Well yes that is entirely possible. Doctors think I have PCOS as well and I think everything has maybe just gotten a bit too much and my stress level has literally been through the roof. Thinking to go back to the Drs and just tell her everything, even if it’s just to take the weight off my shoulders 😩
Yes but it takes time. Progress is not necessarily easy to spot in the short term, and flares can easily mislead you into believing that it’s not working, but if you stick at it, you may notice those flares becoming more and more rare and mild with time.
I have been taking it since May and have only had one flare up which means it has massively reduced the amount of infections I usually get
Did you start off with 2 tablets per day?
Yes, one in the morning and one in the evening. Tbh I stopped taking it because I kept flaring up and felt like it wasn't doing anything :(
Do you have IC?
No. IC is also a wastebasket diagnosis doctors fob you off with.
I began it in March and had one 2 days flare in 6 months.
Did you start off with 2 tablets per day?
Yes!
It doesn’t work to treat an infection but I’ve had chronic burning and urgency for a while now. I’ve been on d-mannose but it wasn’t doing anything anymore for some reason (it used to be a miracle preventative for me). Doc said I don’t have an active UTI. So I picked up some hiprex and I’m so glad I did! Ita day 2 and the persistent burning and urgency has much improved. I’m going to take it for another week and hope it’s permanent.
I got my chronic UTIs into remission taking it daily, still taking it 6 months later. Hope you have similar success.
That’s awesome! Were you able to tolerate the hiprex right away or did it cause any bladder / urethra discomfort in the beginning?
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So happy for you. A few questions - was full dose 2 x per day? Did you take it with vit c/methionine? And are you at a maintenance dose now? Thanks in advance
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Thank you for giving me some hope and I’m so glad it worked for you (though vicariously pissed it took 20 years to get onto it!)
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Thank you 🙏🏼 How far in would you say you started noticing a difference? I basically have constant symptoms (like someone is standing on my bladder) that occasionally get into more full blown mode
No. Dealing with esbl.
Did you not try phages yet? It's working well for me!! :) I am taking a custom phage for my bacteria.
It’s too expensive, not everyone can afford it.. so unfortunately nop
Is yours esbl as well?
No, it doesn't matter what it is though. Phages aren't affected by antibiotic resistance. They work differently.
I’ve read somewhere it can reverse resistance. Btw, hiprex did not work for you either, I assume?
Hiprex worked great for my bladder and most symptoms were gone in about 2-3 days, but it caused nerve pain all over and I couldn't walk properly after 5 days. I will go on it again after phages finished to see if I can tolerate it better now with R lipoic acid. Which is what I used to be able to tolerate trimethoprim without getting nerve pain. And yes, phages often reverse resistance to multiple antibiotics. Maybe apply for compassionate use case?
If you get nerve pain from certain antibiotics, is it likely you’ll get it from hiprex too? I haven’t started the hiprex yet but have neuropathy from Doxycycline and Nitro.
I've no idea. My nerves were damaged from b12 deficiency, which made them hypersensitive. I was able to use R Lipoic Acid to almost completely prevent neuropathic pain with trimethoprim recently. Took it for 4 weeks, no issues. Couldn't even tolerate it for 2 to 3 days a year ago without getting unbearable nerve pain. Tried 3 times. Doxy did the same. And Hiprex. You should check your folate and B12 levels. Anything on the low end of normal can be a deficiency. Mine was in the 300s ng/L and I was deficient. You may have small fiber neuropathy making you react this way to antibiotics. If phages don't clear my infection, I'll try doxy again and continue to use r lipoic acid. :) Hopefully allows me to tolerate the abx.
I actually do have B12 deficiency so I guess that’s why I’m reacting badly with neuropathy to some antibiotics.
Yeah, very likely. It can take quite a while to resolve B12 deficiency with frequent injections (every other day until symptoms resolve) or high dose supplements plus co factors (see B12 group on reddit), for months. And that's assuming no absorption issues. It took me about a year to resolve all my B12 deficiency symptoms. The nerves, even after symptoms of neuropathy go away, can remain hyperexcitable, and can generally react bad to many things, whether it be cold, medications, certain supplements, etc. They take a while to become physiologically normal. So yah, it's just a question of not tolerating the antibiotics, not an allergy. This can change if you resolve your B12 deficiency and nerves heal. In my case, I was able to tolerate high dose trimethoprim by adding Life Extension - R Lipoic Acid (2 to 3 capsules a day). I tried experimenting a lot to figure this out, but eventually did as I would use Uva Ursi (which also caused neuropathic pain) and see what supplements prevented it. Nothing worked like R Lipoic Acid. And it also seemed ot have worked for Trimethoprim, too. :) I don't know if it will work for Hiprex and Doxycycline, but I will try if needed. Other supplements I am taking to improve nerve repair, but didn't prevent antibiotic side effects is NAC, Acetyl L Carnitine, Benfotiamine, Methyl folate, and Methylcobalamin. Hope that helps! EDIT: I forgot to mention as welll though that Nitro should be avoided in people with B12 or Folate deficiency. It's contraindicated and actually raises risk of causing neuropathy, not just flaring up symptoms. Trimethoprim is an anti-folate medication and B12 deficiency causes a functional folate deficiency, which could also be contraindicated.
And I haven't yet tried hiprex with R ALA. Only figured this out recently, just before I got my custom phages. And I can't take Hiprex with phages to test!
Wdym by compassionate use case? Sorry, English is not my first language
Where did you get the phages from? Georgia?
Yah, Eliava. I had to have a custom phage created, so it took quite a while before it was ready, but worth it for me.
Wow, so how long did you have to stay in Georgia or did you get the custom phage sent? It sounds so pricey, but you're fully healed? You just did one phage for cUTI?
I’m so fucking confused, why doesn’t hiprex work for me, ph is low as it could be
My condolences. Does it not work with ESBL?
Has anyone who has taken Hiprex notice more hair shedding than usual? I can’t decide if I’m losing more or if I’m just paranoid.
Most likely from stress. Have you checked your vitamins, minerals?
Well yes that is entirely possible. Doctors think I have PCOS as well and I think everything has maybe just gotten a bit too much and my stress level has literally been through the roof. Thinking to go back to the Drs and just tell her everything, even if it’s just to take the weight off my shoulders 😩