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Re: My case - looking for advice and help
Posted: Sat Mar 12, 2022 10:27 am
by webslave
Junk product, no science, placebo.
Re: My case - looking for advice and help
Posted: Wed Mar 16, 2022 1:55 am
by StefanS
What about the magnesium taurate? There are articles about the role of magnesium in attenuating contractions and neuroinflamation etc. BPS/IC - pretty well established. The taurate will not give bowel problems. The rest of the ingredients may as well be placebo.
Re: My case - looking for advice and help
Posted: Wed Mar 16, 2022 4:06 am
by webslave
You can get much cheaper forms of magnesium
Re: My case - looking for advice and help
Posted: Thu Apr 21, 2022 11:22 pm
by StefanS
Hi Mark (webslave), do you give one-on-one paid or unpaid consultations regarding a particular case? Zoom or telephone? Thanks.
Re: My case - looking for advice and help
Posted: Thu Apr 21, 2022 11:31 pm
by webslave
Re: My case - looking for advice and help
Posted: Wed Jun 08, 2022 12:43 am
by StefanS
Not happy with
Uribel. I used it 3 evenings in a row and yesterday night had to wake up every 2 hrs to pee.
So, I am doing some research on my condition as advised by Dr. Moldwin. He told me we can check whether it is the bladder lining that's sensitized or the nerves (according to me that would include pelvic floor) leading to the bladder. I was given uribel and phenazopyridine to use if I have a flareup and check whether it is helping, which would mean bladder lining component. I can take also my Atarax. His RN told me on the phone that I can also try the valium suppositories I have from a year ago. Especially if I cut them in two and use only 5mg, according to her I can do it long term. They do not have patients in their long experience which have become addicted by long-term use of 5mg valium as suppository. If valium helps - this would mean PF component. So I do not know how exactly I will be doing this in the next 2 months but I did not like uribel - messed up my digestion and did not help within 3 days. I will try the phenazopyridine or I will go to the valium/Atarax part.
My daily pattern is weird. In the morning I am okay. Urgency starts in the afternoon and continues in the evening. On good days that's all. On bad days it can go through the night.
Re: My case - looking for advice and help
Posted: Thu Mar 23, 2023 4:21 am
by StefanS
So here is my progress report from the last 10 months: the symptoms were fluctuating. Same as last year - the symptoms were much better during the 2-month stay in Europe. Also, since June 2022 I had some problems with a neck pain, caused by two bulging/herniated cervical disks. It is an old problem of mine but it has been dormant for at least 5 or more years. Interestingly sometimes during periods of neck pain I couldn't feel any problem with the bladder.
I started taking Myrbetriq 3 months ago and lived almost symptoms-free until last week. Now I am having few flareups.
During the last month I had meetings with a new, very good urologist, recommended by Dr. Moldwin and a pain medicine doctor (physiatrist) - both from Johns Hopkins. Interestingly both of them think that in my case it could be irritable peripheral nervous system. The urologist even thinks that the Myrberiq could have equal amounts bladder-relaxing or placebo effect. Additionally, the physiatrist thinks that my both problems - bladder and neck can have something in common all connected with the bulging cervical disks.
We will try some trigger-point injections in the cervical region. The most conservative for the neck for now. Later I may try (or not) epidural injection. In may have effect on the bladder problem too. I will write here once I go through this.
Re: My case - looking for advice and help
Posted: Thu Mar 23, 2023 4:26 am
by StefanS
On another note - I found this Liposomal Curcumin product by a very high-quality company called Manna.
https://manna.com/products/liposomal-curcumin
However I am wary about one of the inactive ingredients: Natural orange oil (less then 0.5 mg per serving).
Does anybody know whether such amount of orange oil taken daily can irritate the bladder?
Re: My case - looking for advice and help
Posted: Thu Jun 20, 2024 2:45 pm
by StefanS
I did not have major complains in the past 14 months. Flare ups here and there but probably I either got accustomed or maybe taking in the last 8 months 2. 5mg cialis daily as prescribed by my urologist really helps. It is vasodilator and in small amounts it may help plus have many other benefits
Yesterday night though, and today I have big flareup. I think it is connected to a single event of eating a lot of macadamia but not sure. One thing is sure - always when I have flare up and measure the pH of my urine, the bigger the bother the higher the pH. Yes, higher = more alkaline. Today I have almost pH 8. Two years ago my functional doctor was trying to make sense of it and we asked also urologists but nobody could say anything about it. It is kind of counterintuitive but we are not just simple machines - metabolism is complicated.
Another thing I understood the last year was that I have impaired glucose tolerance and depending on diet am pre-diabetic. I try to control the carbs instead of taking metformin and at one point took berberine but surprisingly it bothered my bladder! Sometimes I think my bladder is bothered by exactly the opposite as other people: e. g. bothered by berberine, high pH of urine or calmed down by German, Czech beer or without effect from wine or tomatoes or chocolate. Not sure why. Only coffee and some nuts have the expected bothersome effect.
Admin comment: food intolerances are very variable. Everyone is different. You may have a nut allergy or intolerance.