Redub's Progress Log

[Redub]

Saw urologist. It was mostly a useless visit. He hasn't seen an infection of b. cereus and has only seen it in case reports which means it's very rare. He isn't sure if it's causing problems or not or where the infection actually is. In any case, at the end of this bout of abx i'll be doing another microgendx test for both urine and semen.

Still working on other treatment modalities since we don't know if the infection is causing issues.

Admin comment: Note the remarks about "infection" and MicroGen Dx (and similar labs) here

[Redub]

General update.

Symptoms have been hovering between 3-6/10 so things have actually gotten slightly worse over the past few weeks. Frequency/urgency are the big ones but some traditional pain has come back as well. It's often a pain in the pubic bone area and sort of weird clenching/something stuck between my legs feeling in the perineum.

Current Protocol:
*Stretch daily
*Paradoxical Relaxation daily
*Self trigger points(internal/external)
*Heat therapy daily
*No caffeine
*No spicy foods
*No carbonated beverages
*Levaquin

Here is what I am going to look into next:
*Chiropractor
*Acupuncture
*Cryotherapy

My wife is an LMT that works at a chiro so I know I'll get the best treatment the person can give. I'm not sold in cryo but it's only like 35 bucks a session and am willing to try almost anything. I'll probably go back to a PT for a few more sessions if these don't pan out. My help from PT sort of flat lined and was so expensive I pulled the plug since I can do most of the stuff myself anyway.

After my ABX are done I'm getting more tests done to see what's going on. I have a had two people, one a lifelong nurse, recommend going to the Mayo clinic in Jacksonville, FL (about 3 hours away). The idea being that regular doctors/urologists are good at treating run of the mill horses. They aren't good at treating zebras and I happen to be a zebra. The Mayo clinic is better at treating zebras.

[webslave]

Cryotherapy will be interesting. I know some CPPSers have had positive results from dry saunas, and that cold is generally associated with symptoms exacerbation, but actually cryotherapy (which affects inflammation) could be different.

[Redub]

I saw my wife's chiro (meaning her boss) yesterday. She suspect the problem might be related to scar tissue from a surgery I had in 2018. It was supposed to be a minor surgery (removing a sebaceous cyst from my mid/lower back). I think the surgeon botched sewing me back up. Even my primary wanted me to contact him because it looked like the wound opened up but when I saw him he said it was fine. Typically for this surgery scarring is minimal but I got a decently sized purple indent on my back. Luckily I am dude so scars are kind of cool. In any case, scars can be a hotbed of issues for fascia and adhesions. I forget the full explanation but I think it was that the slight restriction could cause minor changes in things like gait and movement patterns which add up over time. I could be wrong.

I'm not sure I believe this is the root cause but no one else had done any better so why not give it a shot? Copay is cheap for chiro, I get 20 sessions a year and my wife does most of the treatment since it's her office. My wife did note that after myofascia release and stim/heat the swelling around the scar was down (I didn't know there was swelling). I guess time will tell if it helps with CPPS. Worst case it's fixing a minor, unrelated issue.

[Redub]

I had my first cryo session Friday. My symptoms were low that day and more or less stayed low so inconclusive. I have 4 more sessions left since I bought a groupon for about 20 dollar a session.

I went for a 20 mile bike ride Sunday with my wife and that caused a big flare up yesterday. I applied heat 3 times and used TENS. Today I am 80% better. I am not riding a bike again for a few months. I'm hoping to improve my condition to all to 'fixed' status by then as well as lose weight which will make the pressure from the saddle less of an issue.

1 chiro and 2 cryo appts this week. Once my cryo is done I am going to see a PT again but this time ask if there is a way to check for muscle imbalances that might be causing issues. When I was superfit and training for an ultra-marathon(just finished triathlon season) I started getting shinsplints by my knee and the root caused ended up being very weak glutes(dead ass syndrome). Strengthening the glutes fixed it. It might be a worthwhile avenue to explore.

I thought I was done with MicroGenDX but they are doing a study on healthy bladder bacteria and I was asked to participate. Basically just means a free test so why not?

Mostly sitting at a 1-4/10 lately.

[webslave]

Good progress

[Redub]

So last week all my appts had to be cancelled due to coronavirus stuff. I am not infected but we had some people in my office come back from Europe without a quarantine and then my wife started getting sick (presumably sinus infection but doc wouldn't test since she didn't have a fever and was young-ish). She works at the chiro office I go to so they had her stay at home and cancelled my appts which is 100% understandable. I started chiro again Monday and have another appt today. I will call about cryo appts but the county they are located in is under a stay at home thing so whether the office is open or not remains to be seen.

Also, the PT I went to the most is closed until April 15th. The PT I was going to try out that is closer shut down permanently. I have contacted a few other PT offices to see about treatment. I am going to see if they can actually give me some sort of potential diagnosis or probably causes rather then just focus on fixing it (though obviously I want that as well). It doesn't seem unreasonable for them to be able to point out that 'this and this is tight. This is dysfunctional, this is weak' etc.

I have kept up with self work such as daily stretching, heat, TENS and occasional internal trigger points. Aside from the urgency I can certainly feel things are tight in the perineum area and often the base of the wang.

Overall things are mildly worse.

[Redub]

Weekly update again. I did see a new PT last week. The coronavirus thing sucks but it has made it easy to see some specialists. They usually have a 4-6 week wait list but I got in the next day. Today I went in for my second appt and they told me that my appt was actually the next day (my bad) but they had cancellations so they could see me anyway. I was feeling a little better after the first PT appt but things went do about a 5/10 a few days afterwards. She gave me 3 breathing exercises.

I am still seeing a chiro and no real breakthroughs there but we are going to switch up treatment next week.

I am doing cryotherapy and can say it didn't help. I'm not mad at since so many other things haven't worked. I would consider trying it again for an acute sports related injury.

My free microgendx urine thing came back. The initial PCR was low bacteria count with nothing found. The advanced test came back as negative which more or less means 'we couldn't test your sample'. So useless but I didn't pay for it so that's fine.

Things the same as last week. Not in a terrible place but quality of life is still less than desirable.

[Redub]

Weekly update. Also did the admin bold my cryotherapy thing? [Admin: yes, it's an important data point]

Things are still in a worse spot then they were in say February but still livable. The urgency got bad on a few occasions that it was actually pain inside the penis that, luckily, was short lived.

I saw a different PT this time who focused on external work including hipflexors and ab stuff and have a list of stretches and 1 exercise to do multiple times a day.

I also added meditation/paradoxical relaxation as a daily high priority item.

[Redub]

So it's actually been two weeks. Things were more or less moderately annoying until last week where things got much better. Enough so that I could forget about it for the most part. I did a chiro appt yesterday and I also think I absent mindedly got dehydrated so thinks went south yesterday afternoon but only back to moderately annoying. My PT is noticing big improvements in tightness(meaning less tight).

Anywho, no big changes but we did inch closer to better for a bit at least.

I should probably make or find a coffee alternative thread but my PT had me treat this herbal tea called Teeccino and it tastes a lot like coffee but has no caffeine and is acid free. I stopped drinking coffee months ago but to me it tastes like weak coffee and I have become addicted to it. It fills that niche where you want something warm and flavorful to drink.

[Redub]

Another week down, no real changes. Some days 2/10 sometimes 5/10. I am working on getting on appt at the urology place at the Mayo Clinic in Jacksonville, FL which is about 2.5 hours from me. I've had enough pelvic PT sessions with no changes that I am not convinced they are going to provide any additional help. I'll keep going until my 12 sessions are over in any case.

The reason why I decided to look into the mayo clinic is because the urologist was pretty bad and there don't seem to be any urologists in my area with good reviews. I've had two separate nurses(that weren't working at the time) suggest checking out the Mayo Clinic where they tend to provide better care and better able to handle cases that aren't quite so cookie cutter. As one put it, your urologist is used to treating horses. You are a zebra so you need to go some place they can treat zebras. I'm obviously not a snow-flake as evidence that this forum exists but it does seem like my previous urologist only wanted to treat routine things you can diagnose in 3 minutes or schedule an expensive surgery for.

[danielcloud]

My free microgendx urine thing came back. The initial PCR was low bacteria count with nothing found. The advanced test came back as negative which more or less means 'we couldn't test your sample'. So useless but I didn't pay for it

So it can be concluded "no infection" . Only CPPS .

[Redub]

So it can be concluded "no infection" . Only CPPS .

Eh, I think negative means there was just a problem with the sample. If they didn't find anything the paperwork would have looked different.

But I yeah, I'm not on the endless search for an infection anymore.

[Redub]

Update:
Symptoms are still up and down. Sunday I was almost convinced it was 100% gone until I laid down to sleep. I guess it was mild enough that simple life activities covered up any urge.

I had my telemedicine with the Mayo Clinic. The urologist was straight forward and after reviewing everything i've done he more or less was honest that he isn't sure he can do much. He felt the pelvic PT was the best option for now and will most likely fade away over time... Otherwise it will get worse in which case it would become apparent if there was something else going on. He also offered to double my old dose of oxybutinin. I took him up on it but I am not sure if I will pursue it but it seemed like a good idea to have that in my back pocket. So, no real progress here but with my old urologist being such garbage I at least have enough confidence to leave that 100% behind.

My pelvic PT stopped doing internal work for the past few weeks so I started doing it on my own once a week. I can't really find any problem areas after a couple sessions so either I can't them or they just don't exist since they have all been treated.

I'm just going to double down on what I have been doing which is stretching, self-trigger points/foam rolling and meditation.

[webslave]

Follow the IC diet as well:
viewtopic.php?f=13&t=8733

And don't be like those people who say they are following the diet, then when you chat to them you find out they are actually drinking multiple cups of coffee daily, or breaking the rules in some other way.