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Bacterial Prostatitis and I'm unable to treat it


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I'm in a bit of a dilemma right now and it's probably going to make my life miserable for a while. I'll explain the situation and if anyone has any thoughts, please let me know

How this started (unfortunate sequence of events)

Some here might remember that I had a tooth infection not long ago and I had to take Amoxicillin for a week. One day after that, I stepped on a rusty nail in the garden and regrettably got a tetanus, polio and diphtheria vaccine (Td/IPV). Two days after I got the vaccine, I started getting a burning sensation in my legs and arms, which would get worse even if a blanket was against my skin. It was signs of peripheral nerve damage, but sort of waxed and waned over a few weeks.

At some point, I started to get symptoms of a UTI but didn't take much notice as it came on quite slowly, mainly starting with urethritis and then progressing to prostatitis-like symptoms. Eventually I started getting low grade fever, night sweats, a lot of inflammation and feeling generally unwell. 

I went to the doctors and got antibiotics

I've taken many antibiotics before, the only one I had a bad reaction to was Ciprofloxacin. Previously, I had experience (a lot!) of taking Trimethoprim and Doxycycline. Both of them I expected to be fine. Never had any side effects with those last two. 

I try Doxycycline

Now, I take my first dose of doxycycline, symptoms near the end of the day are much reduced, low grade fever has gone. I also started getting intense burning in my hands during the night. That spread down my arms over the course of the early hours and I went back to the doctors to explain my reaction.

Fast forward almost 2 weeks and I try again (I had only transiently experienced burning sensations on my skin for few seconds during the evening over these 2 weeks off antibiotics), and I get the same problem! Every time I take Doxycycline, I get intense neuralgia.

I change antibiotics to Trimethoprim.

I had a UTI over 12 years ago and I took Trimethoprim a few times, for weeks at a time and never once had any issues or side effects whatsoever. I started taking Trimethoprim and I get a tingly and intense burning on my arms and my legs, including thighs.  I continue taking on the 2nd day and it gets more intense and then goes away during the night, allowing my to sleep (I thought things were gonna be fine).

I woke up at 4 am with tinnitus louder (might just be a coincidence) and constant unrelenting nerve pain, burning, all down my legs, arms and upper back. It went on for 5 hours before calming down. I then stop taking the Trimethoprim.

How well did the antibiotics work?

The response with Trimethoprim was rapid, within just a few hours I felt healthy again, first time in weeks. All the burning urination, pain, and low grade fever went away. Like an off switch it was that quick. It seemed to be very effective. Doxycycline also got rid of the low grade fever and burning urination.

I have a dilemma...

I am unable to treat the infection with any of the two antibiotics I am able to treat this infection with. I also cannot take Cipro as I had a bad experience with that with bilateral achilles tendonitis, peripheral neuropathy and severe insomnia (lasting months).

Previously, I had taken Doxycycline and Trimethoprim for months, no issues ever. 

What changed?

My theory is that my immune system was overreactive / aggressive to the vaccine shot (when the burning first appeared) and damaged my nerves. They've not had enough time to heal yet as it's only been less than a month? Since I got it done.

I'm thinking that I may be able to take these antibiotics if I wait a few months, perhaps 3-6 months to allow the nerves to heal and become less hypersensitive. But is that long enough? It might be, due to the fact that I don't have chronic nerve pain once the antibiotic is out of my system, it's just transient, lasting seconds here and there.

What are my options?

1. Try a lower dose of the antibiotic but risk antibiotic resistance 

2. Take the antibiotic and put up with the nerve pain and damage and use medication to manage (seems very risky and damaging long term).

3. Deal with a chronic infection, take care of myself the best I can and manage symptoms while I wait for nerves to heal and then treat with the same antibiotics that worked.

4. Go to Italy to get intraprostatic injections  (costly, and I don't have the money right now).

5. Alternative Bacteriophage therapy (seems relatively harmless but expensive and experimental?)

I feel a little hopeless right now but tryin not to be. There isn't any solution and I'm ringing my doctor but not sure they can even help either. Waiting for another call back today to see what they said after I told them about my latest reaction to Trimethoprim.

Being off Trimethoprim for 36 hours, the neuralgia has decreased by about 98%.

A relevant anecdote: Many years ago when I was taking Trimethoprim, I used oral suspension, and my father picked it up from a pharmacy we never usually would go to. It was a different brand of Trimethoprim (this was not long after my nerve damage from Cipro). When it took Trimethoprim, I got all the burning and tingling sensations, however I figured out at that time it was caused by an ingredient called "Methyl p-hydroxybenzoate" - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2012982/

I was able to get the original Trimethoprim I had been taking before (half the dose I'm taking now) and without that ingredient, and then I had no burning at all. I figured that out by myself but it's interesting only because that same ingredient I was able to tolerate after a certain period of time without any issues. So my nerves become sensitive to it as they were messed up from the Cipro.

Yes is a complicated problem. I fear the next few months or year is going to painful and bad 😞

Any ideas on what the strategy would be here if you were in my place?

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My doctor agreed with me that the reason this probably happened is because the chronic dental abscess I had for years made my immune system hyperactive/aggressive. And then taking the Amoxicillin for dental infection, destroying the good bacteria and taking the vaccine right after, allowed for an infection to take hold. And my immune system caused the damage to my peripheral nervous system. 

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Sorry to hear you are dealing with this, wishing you the best. I'm sure your docs will give you good advice but perhaps it would help to try some of the natural remedies? I have no idea, but there are many suggestions out there if you Google it (skip the "sponsored" links). 

 

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Thanks Gordo.

The most annoying symptom right now is a constant low grade fever, it makes me feel terrible. And the night sweats as well. I've gone from being cold all the time to being very warm.

Hopefully my immune system can get it under some control and rid of this fever while I search for some solutions.

Gonna test for what bacteria it is on Monday and then take it from there.

The option now could be an antibiotic called Fosfomycin. Has anyone ever taken this antibiotic before?

Right now I need to do all I can to get my peripheral nerves to heal faster so that I could potentially use Doxy and Trim again in the future. Doctor I saw yesterday agreed with me that because my nerves were damaged by my immune system and vaccine, they are less able to tolerate the antibiotics that I used to be able to take with no problems. This makes logical sense to me, as it was a bit odd that I responded with the exact same side effect to both.

A few things I'm doing right now

I'm currently taking Jarrow Yeast Beta Glucan, Vitamin D3, 5000 IU, Bio Quercetin from Life Extension. I'm taking higher doses as omega 3 DHA and EPA. This apparently helps with cancer patients undergoing chemo to withstand or better tolerate toxic chemo drugs wrt PN.

I've increased protein intake a lot as perhaps mine was a bit too low on a vegan diet. Also increased calorie intake a bit to give my body the energy it needs. I'm losing weight because of the fever.

I'm gonna start doing some mild exercise again and hopefully help with nerve regeneration in my limbs. Move the arms and legs and do some mild resistance exercises.

Anyone have suggestions to try to fight the infection and/or help with nerve regeneration?

 

 

Edited by Matt
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I'm gonna try Amoxicillin. It doesn't reach the prostate that well, but there is some evidence that things like Quercetin, EGC and EGCG can lower the minimum inhibitory concentration of B-lactam antibiotics by anything from 64 to 100 fold against some bacteria. I'll add bromelain and beta glucan too. Maybe this might be enough to at least buy me a few months with fewer systemic symptoms, even if it can't eradicate the infection. 

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Hi Matt,  sorry to hear about your condition.

The following article  discusses various antibiotic and other treatments  and has a section on fosfomycin.

Pharmacological Interventions for Bacterial Prostatitis (April, 2020)

* * * * *

The Revival of Fosfomycin

Considering that the evolving changes in resistance rates for fluoroquinolones have a serious impact on treatment, alternative antibiotic therapies are urgently needed. Studies have demonstrated fosfomycin has a strong killing effect in vitro against antimicrobial-resistant E. coli (including ESBL-producing, AmpC-producing, and MDR isolates). This new discovery inspires the treatment of refractory bacterial prostatitis (Michalopoulos et al., 2011; Gardiner et al., 2014; Falagas and Rafailidis, 2015).

Fosfomycin, an old drug used before for therapy of females uncomplicated cystitis and transrectal prostate biopsy prophylaxis, has been recently rediscovered as a treatment for MDR infections with an effective rate >90% in lowering UTIs (Pullukcu et al., 2007; Senol et al., 2010). In addition, fosfomycin-susceptibility rate of ESBL-producing E. coli, ESBL-producing K. pneumoniae, and E. faecalis reported lately by a systemic review was 95%, 83.8%, and 96.8%, respectively (Fan et al., 2018). Clinically, a case report of the successful administration of oral fosfomycin on patients with CBP [chronic bacterial prostatitis] who were infected by a complicated vancomycin-resistant Enterococci demonstrated that fosfomycin is available (Shrestha et al., 2000).

Fosfomycin belongs to a broad-spectrum antimicrobial class with bactericidal activity against gram-negative and gram-positive bacteria and is not relevant to any clinically approved antibiotics on the structure (Sastry and Doi, 2016). The unique bactericidal action of fosfomycin involves obstructing the synthesis of bacterial cell wall by inhibiting pyruvyl transferase, a cytoplasmic enzyme that catalyzes the first step of peptidoglycan biosynthesis (Cunha et al., 2015; Fan et al., 2018). A study involving a rat model has shown the effects of reduction of bacterial reproduction, inhibition of inflammation (with significant lower IL-6, IL-8, anti-TNF-α, and PSA levels in the prostate tissue), and improvement of prostatic tissue injury in the treatment of bacterial prostatitis using fosfomycin (Fan et al., 2018). The serum half-life (t1/2) of fosfomycin is 5.7 h, bioavailability is approximately 37%, and excretion rate through the kidneys is 60%.

Fosfomycin with a large volume of distribution (Vd of ~2 L/kg) indicates extensive tissue/cellular penetration (Cunha et al., 2015). The concentration of fosfomycin can achieve therapeutic concentration (prostate levels >4 µg/g) in infected prostate and is higher than in healthy tissue (Gardiner et al., 2014; Karaiskos et al., 2019). The pharmacological properties of fosfomycin (including the high lipid solubility, small molecular size, and low protein binding) are conducive to the penetration of the parenchyma of the lipid-rich prostate (Lipsky et al., 2010; Cunha et al., 2015; Zhanel et al., 2016).

Based on the present studies, fosfomycin can effectively prevent the relapse of UTIs in patients with prior history of urinary colonization and infections caused by complicated pathogens, such as ESBL-producing E. coli and MDR bacteria (Almeida et al., 2019). In addition, fosfomycin also has a significant effect on biofilm-producing bacteria, including E. coli (Corvec et al., 2013).

To determine the safety of the treatment with fosfomycin, a prospective observational study was conducted in 44 men with CBP; results showed that oral fosfomycin was well tolerated with minor side effects, even when the treatment was prolonged for 90 days (Karaiskos et al., 2019). Moreover, the study indicated that the only adverse effect was diarrhea in 18% of the participants (8 of 44). However, this effect subsided when dose intervals and/or modificatory dietary were lengthened during the course of fosfomycin administration (Karaiskos et al., 2019).

Oral fosfomycin, as an alternative therapeutic option in the case of bacterial resistance to classic antibiotic or poor tolerability to the first-line agent, is recommended at least 6 weeks up to 12 weeks (Karaiskos et al., 2019). The present evidence supports the idea that the most effective dose interval is 48 h. An oral fosfomycin dosage of 3g.q24h for the first week followed by 3g.q48h for the remaining duration appears to have the highest clinical cure rates that also minimizes gastrointestinal adverse effects (Zhanel et al., 2018). High-dose fosfomycin (> 3 g per dose) has not demonstrated enhanced clinical efficacy compared with 3 g doses of treatment (Cunha et al., 2015). Appropriate adjustment of fosfomycin dosage or frequency when adverse gastrointestinal effects occur would easily solve the problem. The presence of prostate stones and biofilm-producing bacteria contributes to the persistence of infection and easily leads to recurrence following antimicrobial therapy. Thus, the prolongation of treatment duration to a median period of 12 weeks with single oral dose of 3 g of fosfomycin has been suggested to apply without significant adverse event to the aforementioned cases (Zhao et al., 2012; Bartoletti et al., 2014).

In addition, the prostatic calcifications are suggested to be removed by transurethral resection of the prostate (Cunha et al., 2015). Rhodes et al. suggested that 3 g of oral fosfomycin should be administered 1–4 h prior to prostate biopsy to prevent postoperative infection (Rhodes et al., 2015). A case of persistent ESBL-positive E. coli CBP refractory to antibiotic therapy showed that the combination with doxycycline and fosfomycin might have synergistic effect, in which the antibacterial activity of one antibiotic enhances the intracellular transport and/or antimicrobial activity of the other. Thus, the ability of prostate penetration and/or penetrating into his infected prostate calcifications/biofilm increased (Cunha et al., 2015).

 

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I think I may have to go for Fosfomycin because I hate feeling like this 😞

Every day is the same... feeling warm, elevated temperature, fatigue, brain fog. 

Pain is a lot better (at least for now), but low grade fever remains. Before I do anything though, I'm going to get the tooth pulled on the 2nd November, just in case that is what's causing the low grade fever... But I doubt it.

Has anyone taken this antibiotic before?

And thank you, Sibiriak.

 

Fosfomycin trometamol and N-acetyl-L-cysteine as combined oral therapy of difficult-to-treat chronic bacterial prostatitis: Results of a pilot study

"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. "

"Significant changes on questionnaires were recorded between baseline and follow-up visits. Fifteen of 19 patients (78.9%) with ESBL strains were cured. No significant side effects were reported. FT in combination with NAC is a promising alternative therapy in difficult-to-treat CBP patients."

https://pubmed.ncbi.nlm.nih.gov/32156620/

 

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I had some UT episodes back in the younger age, recalling tons of literature read in the past on it I can point out these things:

- protein increase is a good strategy as well as some gentle excersising (stretching, yoga, etc - to improve circulation) and energy capacity boost

- in addition I would say 300% RDI for all energy-related vits - B1,2,3,5,6(+no Mg deficit) will be needed, the multivit was prescribed to me by doctors both times I addressed my cases

- there are UT-trlated things that will NOT be addressed by any of known antibacs, thus previous 2 points are even more important, the immune system should switch back from CR (malnourished?) "deorchestrated" way of work to more expected at this age of being capable to tackle let's say "the unexpected lifeform in an unexpected amounts in an unexpected place"

- the idea of UT (even w/o chlamidias) antibacs treating is to do a heavy-lifting in all senses - kill what is killable and as a by-product - fill the flow with the debries that will warn the immune system to get it into the job but the final clear state is not achivable w/o the proper immune response

- the whole cycle is 4-6 weeks, no quick results are possible if I remember the things right

Maybe it could make sense if possible and if some money on analyses are ok to do a kind of cytometric test for different immune cells activities as well as complement activation. Maybe this will reveal some anomalies. When I used to have 1700-1800 kcals per day my tests were looking weird, so low calories are definitely inferring with the complicated messaging that orchestrate the immune system, but there is a limitation - assessing not only the quantities and distributions but activities of the immune cells could require different analises and in the case of UT (at least at the beginning of the story) is an overkill, I would say - it makes sense to inform the doctor about long term relatively extreme CR regimen practiced and let him/her decide if it makes sense to investigate the immune system activities more.

 

Br,

Igor

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Thank you, IgorF.

So here is what I'm currently doing....

Supplements:

N acetyl cysteine (NAC) - 600 mg

Acetyl L-Carnitine - 2000 mg

Taurine - 1500 mg 

Now Foods - Adam Multi (3 caps)

Allicin Max - 4 caps

Healthy Origins 30 billion CFU probiotic

Jarrow - saccaromyces cereviae extract - Beta Glucan (500 mg) 

Zinc Picolinate 50 mg every other day

D mannose (to prevent E coli infection)

Cranberry juice - 2 glasses a day (seems to completely eliminate any bladder or urethra symptoms)

Life Extension Bio Quercetin Phytosome -  2 capsules

Bromelain - 500 mg twice a day

Magnesium Glycinate

Finasteride 1 mg

 

I was recommended ALCAR by someone on FB and it appears to have almost completely eliminated my tinnitus that I've had since 2006!!

Pain is still minimal from infection but night sweats and low grade fever remains.

Anything I'm missing wrt to supplements and/or medications?

 

 

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Energy B-vits (+mayby lipoic acid) and also energy itself. Maybe I am wrong but the thing that happened is something like this:

- the unspecific immunity is doing its job, it is fast, reliable but has limited capacities in finishing on its own

- the by-products of the unspecific immunity (inflammation triggers, messaging molecules) are reaching the brain (so the common unpleasant effects  are observed - it is brain who regulates core body temperature) and also are expected to wake up the specific immunity mechanisms

- for the later to work properly there are things required - energy and protein, so they will be able to synthesize their weaponry, do the cells multiplication (when those with the best-fit receptors will face the alien molecules and switch their mode of operation) and produce something that controls the feedback-loop that will shutdown/decrese the activities of unspecific things (e.g. "keep-calm, we are controling it") ; and the problem is with this last step - UT is not easily reachable by the immune cells, so it is hard to say what is wrong - too few cell "contacts", to low activity of the cells, to few energy supplies for the already activated cells, too low intercellar signaling, etc. etc. If it is not a tough enemy like those that has separate analyses to be detected it is expected that normally working immune system will tackle the things in the background.

Intuitively there should be perhaps 2000-2200kkal/day for not serious illness and low activity lifestyle available, both the cells themselves and the brain should change their energy perception from starvation to plentifullness and based on this the immune cells will be doing their job faster.

Also there are pro and contra arguments against immune-stimulating natural remedies (e.g. echinacea and so on) and their effectiveness I think they should not make any harm if tried.

My prescription that worked was:

2 lines of antibacs, probiotics to lower the unwanted effect of them (expensive dry jogurt, no idea if price makes a difference) multivits and prostate massages (controversial thing from the effectiveness studies, no idea if it is not widely obsolete novadays but instead of it anything that increases the circulation in the pelvis - from sex to hula hoop is useful)

Br,

Igor

 

edited to add:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2475648/

some quantitative energy assesment, since the brain switched by the inflammatory molecules keeps the core body temp higher then the energy required to do the actual cellular fighting will be stacked over it, thus my assumption about 2000-2200kkal could be even underestimate, if average body temp will be 37+C then it would be better to run on 2200-2500, at least for the first 2 weeks of managing the situation

 

 

Edited by IgorF
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Pain is about 90% better right now.  Low grade fever has been absent most of yesterday and this morning. Didn't get night sweats last night for the first time in weeks.

It'd be a little miracle if I actually beat this without antibiotics. Not sure I should get my hopes up too much yet though...

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Matt what calories are you consuming while trying to fight this?
having been on such low calories (1600) prior to this illness, do you not have an aversion to increasing your calories.
I do, it seems like both a blessing and a curse that I'm so strict. Easier to maintain but hard to break which at times you might have to go through like in your current circumstances. So was wondering how you are dealing with the mental block of altering your perfect diet for longevity?

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4 hours ago, pwonline said:

Matt what calories are you consuming while trying to fight this?
having been on such low calories (1600) prior to this illness, do you not have an aversion to increasing your calories.
I do, it seems like both a blessing and a curse that I'm so strict. Easier to maintain but hard to break which at times you might have to go through like in your current circumstances. So was wondering how you are dealing with the mental block of altering your perfect diet for longevity?

Right now I'm not too concerned about calories. I've increased them to about 1900-2000 while I'm fighting this. 

Appetite is getting better. Temperature is more consistent now but still getting those temperature spikes which are annoying and drains me. I got one last night for an hour or two and then thankfully it calmed down as I was getting ready to sleep.

My sleep is a lot better in the pat few days. Not waking up at 4 am anymore feeling super warm and unable to get back to sleep. I hope this continues as it'll help me both mentally deal with this and better for my immune system.

I feel scared that there is nothing I can do about this. 😞 Why on earth am I reacted to Doxycycline and Trimethoprim the way I am? I've taken them loads before and never once had an issue.

I was offered pivmecillinam today, which is active against gram negative bacteria.  I can't swallow pills, so I'm have to learn how to do that lol. I was declined Fosfomycin by my own doctor! Even though the 'out of hours' doctor on the weekend was going to prescribe it to me over 10 days ago. My doctor said he was uncomfortable in prescribing it and it's never prescribed for the issue. This is not true, it is prescribed for complicated cases of prostatitis or intolerance to other antibiotics. So to try Fosfomycin, I may have to see a urologist not my GP.

I'm gonna remove the tooth tomorrow and hope that helps calm my immune system down a bit. It definitely can't be helping the situation.

I had an interesting comment recently from someone on my facebook the other day and she suggested that the reactions to both Doxycycline and Trimethoprim could be related to a die off reaction of some kind or LPS, which is stimulating the neurons and causing the burning neuralgia. Maybe it's related to gut bacteria.  I know of herx reaction with Lyme, but with a high bacterial load, perhaps my nerves are hypersensitive (especially since my reaction to the tetanus vaccine).

My other options if I can't take antibiotics orally are:

Phage Therapy (experimental, expensive, and I can't afford it right now).

Prostatic injections - Generally have a high success rate, and can be done through the perineum but the only one who does it this way is a doctor in Italy. I don't have the money for this right now and this might be one of the last options.

Of course, the last and final option is surgery. 

I hope it won't come to that. My feeling is that once my nerves heal and things settle down, I will be able to take the antibiotics. This is my hope. I really, really hope I am right about this. Because it makes no logical sense why I am getting the same reaction to both different types of antibiotics. Even so, many people who have nerve problems take them fine.  So is it some kind of die off reaction or is it related to some immune system complex developed with the vaccine or even the tooth infection?


I am still feeling better right now and have limited pain and the fever is much better. I am thankful for that, but I still get moments when I feel really sad. I'm trying to stay optimistic but I am scared for the future and how I can deal with this problem. Maybe I Should not feel this way, I've not exhausted all options yet. 

But I keep saying to myself: why me? 😞  Why is this happening. It's like Murphy's law.

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Hello, this is probably unrelated, but I wonder how long you have been supplementing with the carnitine, cysteine, and taurine. I have the impression that if you supplement with individual amino acids, it is recommended for short time periods, like a few weeks at a time.  If you are concerned that you aren't getting enough of these from food sources, have you checked out for example myfooddata.com to use their "recipe calculator" tool to track your intake of all nutrients for a day? I will use it occasionally to see what I may be short on. I add up what I've eaten as if it were one "recipe" and see what the totals come to. Fun to play with for "what if . . . " too. (As in, "what if all I ate all day was 1800 calories of potatoes?")

If I were to supplement with one or a few amino acids regularly, I think I would feel more comfortable with much lower doses, to keep them closer to what a diet might supply and more in balance with the other amino acids. Having said that, I do have a favorite supplement that seems to help me personally, with my individual physiology, and that is betaine anhydrous, about 1/4 tsp in the morning. For me it helps with keeping my mood up.

I hope you keep feeling better, and more hopeful.

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I just started to supplement ALCAR and NAC very recently after I was developing worse nerve pain since I took the antibiotics Doxycycline and Trimethoprim. Although the nerve issues first showed up 2 days after I got the Td/IPV vaccine. Last time I had any issues with my peripheral nervous system being damaged was after Cipro in October 2007.

I'm taking the supplements as they may help regenerate peripheral nerves and hopefully help me be able to tolerate the antibiotics that I need to take. 

I've significantly increased overall protein intake as well, and have started to include eggs in my diet every day for the time being.

I use CRON O METER to look at nutrients. 

Thank you..
 

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I had to pay privately to get the dental extraction in the end. My NHS dentist were just messing me around again and wanted me to wait 6 weeks more... again.

I told them about all the issues I had going on right now but they still wouldn't understand the need for me to get this done ASAP. They even refused to send the x ray to a private dentist (would have helped me save money). 😕  

So anyway, I spoke to a private dentist after coming home extremely disappointed yet again... And literally within 1 hour he saw me and spent over an hour with me for an assessment / consultation. Then booked me in less than 20 hours later (yesterday) for the extraction and spend another 90 minutes with me discussing all the options after the removal and whether or not we should try to save the tooth.. 

In the end we decided to remove it. I think I have a new dentist now.

That's my little rant over lol.

Interesting observation since having tooth removed.

My palpitations have disappeared.

My heart rate is back down to around 50 bpm, down from 70-80 as it has been for a  long time now.

My temperature might be a bit lower now, but it's hard to say yet because the spikes in temperature come on randomly and last minutes to hours.

 

I'm glad to have at least one problem solved. If I would have removed the tooth a long time ago by paying privately, the UTI may have also been avoided as I would not have needed the antibiotics, probably lowering my resistance to the UTI (as it happened right after...)

Edited by Matt
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I tried taking Trimethoprim again, got to 4 days on half the dose 1 x 200 mg. Felt pretty healthy, but the nerve pain got worse and worse. Yesterday was my last dose, scared to take another because my foot yesterday was tingling but tingling in a painful way and felt like it was losing sensation. It was around my ankle and on top of my foot. Oddly enough, I wasn't getting the neuropathy anywhere else that day.

It's so weird, I don't get it. 

So here is the plan... https://www.crvitality.com/2022/11/my-recent-health-struggle-i-really-need-your-support/

If anyone can help out, even a little, I'd really appreciate that so much. I'll share it with friends and family and hopefully can go for the phage therapy soon (I provided some links on it). I'm in contact with the institute at the moment about what I need done before doing the treatment.

I've not made any GoFundMe pages or anything yet as I need to figure out the costs and what I need to try to get. But in my state, I simply cannot even work enough hours to get the money. I can't sit down for more than a few minutes without pain. I can't even lie down on my back without getting pain some days.

The only relief I get is when I am taking antibiotics, but the antibiotics are hurting me as well and I simply cannot do a 12 weeks course of these antibiotics at full dose without being in a lot of pain from neuropathy.

I feel screwed right now, and I'm trying not to panic, but try to stay focused and fix the problem. I can't wait for the NHS, the waiting lists are massive. 

Of course I will document everything, pictures, receipts, all of it.

Edited by Matt
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22 hours ago, Dean Pomerleau said:

Matt, 

I'm really sorry to hear about your continuing health difficulties. I can pitch in some when you get your GoFundMe or equivalent set up. Hang in there. 

--Dean 

Thank you, Dean.

An update. I just finished off the bottle of Bio Quercetin from Life Extension and bought Jarrow Quercetin (500 mg) instead. It seems that Quercetin at 1000 mg / day is stopping the low grade fever. I guess it must be blocking the production of IL-1, IL-6, etc. I hope this continues because the low grade fever and chills make me feel terrible.

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Hi Matt,

First off, I am so sorry to hear about the health problems you are navigating. I went through something very similar just over a decade ago and I'll do my best to try and remember the details. Unfortunately, where I live we have electronic record keeping now available for all of our health related matters, but it does not extend back to that point in time (I'm based in Canada). So it will be based off of my memory and I will do the best to recall the details. 

For the course of probably close to two years, I was navigating intermittent bouts of urethritis, UTI's (which are of course normally quite uncommon in men), and prostatitis. I worked my way through probably 5-7 different antibiotics, including combinations of antibiotics, and for several durations that were as long as 12 weeks. I should note that during that time I was following a healthful mildly CR'd lifestyle. My BMI was just under 20, I was exercising a great deal including 5-7 hours per week of moderate to vigorous endurance training, while eating an extraordinarily clean 100% whole food plant-exclusive vegan diet that including a great diversity of foods. The antibiotics were never all that effective and I did experience major disruption to my gut microbiome as a result. It is not an exaggeration to say that it took a few years for my gut to return to normal, though this did eventually happen. 

At times, as you are undoubtedly well aware, the symptoms were awful. When I go back and google the common symptoms of urethritis, UTI's, and prostatitis, I had virtually all of them for significant periods of time. And they sure did impair my quality of life. I tried all of the natural remedies and they did not seem to make much of a difference either. Sometimes flare ups would be short and intense, while others would be a long slow burn.  What cured it? Nothing really. It actually just eventually subsided all on its own. Why this happened is a mystery to me, but I sure am grateful it happened. 

Since then I've enjoyed about a decade of robust health with only trivial health problems and have had absolutely zero problems related to this. Interestingly, the antibiotics did make me unable to tolerate oxalic acid for a very long period of time. Even today I cannot consume the quantity of high oxalate foods that I once did, but I can still certainly eat generous quantities (at least by most peoples standards). 

I actually had a CT scan of all of the anatomy connected to urethritis/prostatitis, as well as a cystoscopy after a urologist attempted to help me with all of these issues. Nothing was revealed by either and I got a measurable dose of radiation and a very unpleasant procedure to boot. Though at the time I was willing to do just about anything. I am not sure what to say other than good luck!

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16 hours ago, RG77 said:

Hi Matt, have you looked into Andreas Kalcker and CDS? Also research on Brighteon channel, plus look at www.theuniversalantidote.com - I hope this information may help in your research and health...

No, never heard of it. I'll check it out, thanks.

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11 hours ago, drewab said:

Hi Matt,

First off, I am so sorry to hear about the health problems you are navigating. I went through something very similar just over a decade ago and I'll do my best to try and remember the details. Unfortunately, where I live we have electronic record keeping now available for all of our health related matters, but it does not extend back to that point in time (I'm based in Canada). So it will be based off of my memory and I will do the best to recall the details. 

For the course of probably close to two years, I was navigating intermittent bouts of urethritis, UTI's (which are of course normally quite uncommon in men), and prostatitis. I worked my way through probably 5-7 different antibiotics, including combinations of antibiotics, and for several durations that were as long as 12 weeks. I should note that during that time I was following a healthful mildly CR'd lifestyle. My BMI was just under 20, I was exercising a great deal including 5-7 hours per week of moderate to vigorous endurance training, while eating an extraordinarily clean 100% whole food plant-exclusive vegan diet that including a great diversity of foods. The antibiotics were never all that effective and I did experience major disruption to my gut microbiome as a result. It is not an exaggeration to say that it took a few years for my gut to return to normal, though this did eventually happen. 

At times, as you are undoubtedly well aware, the symptoms were awful. When I go back and google the common symptoms of urethritis, UTI's, and prostatitis, I had virtually all of them for significant periods of time. And they sure did impair my quality of life. I tried all of the natural remedies and they did not seem to make much of a difference either. Sometimes flare ups would be short and intense, while others would be a long slow burn.  What cured it? Nothing really. It actually just eventually subsided all on its own. Why this happened is a mystery to me, but I sure am grateful it happened. 

Since then I've enjoyed about a decade of robust health with only trivial health problems and have had absolutely zero problems related to this. Interestingly, the antibiotics did make me unable to tolerate oxalic acid for a very long period of time. Even today I cannot consume the quantity of high oxalate foods that I once did, but I can still certainly eat generous quantities (at least by most peoples standards). 

I actually had a CT scan of all of the anatomy connected to urethritis/prostatitis, as well as a cystoscopy after a urologist attempted to help me with all of these issues. Nothing was revealed by either and I got a measurable dose of radiation and a very unpleasant procedure to boot. Though at the time I was willing to do just about anything. I am not sure what to say other than good luck!

Thank you for sharing your experience with this. I'm glad that it got better for you.

I also had a long period of time many years ago, over 10 years ago in fact, where I had prostatitis-like or chronic pelvic pain syndrome. It lasted years and during flare ups I would use Trimethoprim. It wasn't until I used Doxycycline that I finally managed to cure it. However, there were still symptoms left over which I later realized were due to chronic muscle tension, not an infection.

One of my mistakes a few weeks ago was thinking that I had some muscle tension issues and was treating it as such. Therefore, I delayed going to the doctor and getting an antibiotic. If I had gone to get one, perhaps even just a few doses of Trimethoprim would have wiped this out before it even got to the prostate.

In some cases, even bacterial infections can be overcome by the immune system. There are actually studies showing that when men were treated for prostatitis, their initial infection was eradicated, but then new bacteria colonized the prostate. However, within 6 months, these bacteria were killed by the immune system and it resolved spontaneously. In mice or rats, prostatitis due to bacteria can sometimes resolve spontaneously, but it's anywhere between 10-50% depending on the strain used.

My set point body temperature is still higher than it should be but it has come down from what it was a few weeks ago. I'm sure that the Quercetin is helping keep my temperature a little lower. Quercetin also seems to have helped the neuropathy hugely. One thing I had forgotten was that I took 1000 MG of Quercetin alongside Doxycycline years ago. I wonder if that helped prevent some of the side effects. Quercetin can apparently help with chemotherapy-induced neuropathy and diabetic neuropathy. Also, Quercetin seems to be helpful in autoimmunity issues, which I may also have right now, as per my experience with the vaccine and development of neuralgia after it.

One of my main struggles right now is insomnia. I keep waking up around 3-4 am every night after going to bed around 9 PM. This isn't enough sleep for me. My temperature is slightly higher, but not to the point that it should be waking me up I don't think. So I'm wondering if it's the Acetyl L Carnitine that's affecting my sleep, as it's known to cause insomnia. I feel totally alert when I wake up but feel that I didn't sleep enough or properly during the day.

So I'll be cutting out the ALCAR for a bit to see if my sleep normalizes and the reintroduce it slowly at lower doses and early in the day.

I've had a cystoscopy done in 2009, it didn't show anything that would indicate why I get these UTI's. Not structural abnormalities. It's either incredibly bad luck, momentary lapses in hygiene, or some immune system related issue but only with regards to bacteria in the urinary tract. I have a history of UTI's. Two when I was a young boy, an enterococcus kidney infection in college, around 19-years-old or so. Prostatitis or CPPS from late 2005 to 2012 (but looking back, I am almost certain that most of that time was simply muscle tension, as the symptoms I have now feel way worse and more like an infection than that ever did).

Anyway, I probably will not opt for CT scan, but I will likely get an ultrasound done and test for bacteria in semen and prostate fluid. This is required anyway if I am to go ahead with phage therapy. And if that doesn't work, prostate antibiotic injections. 

The thing with my experience and antibiotics in this case is that I respond extremely well. They get rid of all the pain, the low grade fever, everything. I feel actually healthy again when I am taking them. But obviously taking them for just 2-4 days isn't going to resolve the problem. 

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  • 2 weeks later...

Hello, I am very glad to hear that you were able to get some improvement from getting your dental work done and increasing the quercetin. It sounds like those were both really wise choices. I hope you can continue to get better, and soon! I wish I had some suggestions to offer. The only two things I have heard of lately that may or may not help with neuropathy or nerve health are both things that the body can become acclimated to and therefore may lead to a kind of dependency. I know an elderly woman who has recently gotten neuropathy just in her feet. She has been taking alpha-lipoic acid. She isn't sure if it is helping or not. There are a couple of reasons to be cautious with it, though. For one, the synthesized ala has both r-ala and s-ala, but the only form found in nature is r-ala, and a few people speculate that the s-ala can actually get in the way of the r-ala. A brand i've seen in the states that has only r-ala is 'doctor's best', but the other problem with r-ala is that after a short time, like a couple of weeks I think, your own liver can adjust to the supplementation by dialing down your own ala production. I don't know whether this could become permanent. Personally I usually approach supplements with a great deal of caution. I know another woman who took ala for years and doesn't take it anymore. It may be unrelated, but the insomnia she has always had has only gotten worse in the last few years. This probably has something to do with menopause, a tendency to try every type of diet (paleo, keto, etc), and genes, but i'd not rule out overenthusiastic use of supplements, either. So if someone wanted to try ala, I wouldn't take a whole pill, but just the smallest amount that could be tapped out of the capsule, so that a capsule would last about a week. I'd say it's one to be more cautious with.

One i use myself but I've decided to be more cautious and measured with is soy lecithin. Oddly enough, my mom used to buy it to put in her homemade bread, because it improves the dough's texture or something. I used to sneak a spoonful of it because it is full of fats and I loved the rich, fatty taste. A couple of years ago I began to crave it, but I read in an old high school anatomy textbook that we don't need to supplement with it, so I tried to resist the idea. Then, I gave in and bought some (granules from a local healthfood store, less messy than the liquid). I was using a lot (too much) of it for a while, mixed in other foods. Recently I've been reading about choline and inositol (both in soy lecithin) and some of their health benefits. But my understanding of what i'v read is that too much choline can cause a very serious dependency problem, so I am making sure I keep at or below the newly established (before there was none) RDI for choline. I haven't researched it very well, but i think that choline has something to do with building/maintaining myelin sheaths. I can see that you do a better job with research than I do, so I know you can suss it out for yourself.

So that's my two cents. I hope you continue to find your way back to health!

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