I am 25/m. I started taking B12, Folate, and P5P many months ago. It made me feel a lot better. I also tested highly positive for KPU and started treating for that with pills that contain high doses of zinc with a blend of B6 and a bunch of other stuff. This addition took my chest pain away that I had for over 2 years, and it took away much of the remaining anxiety I had as well. I am still on benzodiazepines (Klonopin and Ativan), but I am now tapering because my body doesn't feel the need for them anymore.
B12 has been huge for me. For whatever reason, I only need small amounts every few days to every week (it depends on how I feel). When I say small I mean about 5,000 mcg. This is small considering I used to have to inject 25 mg or take 5 tablets for the same effect daily.
However, there is one major problem. A problem I have described here many times in the past. When I take B12 (hydroxy, adenosyl, or methyl) I can't pee and retain fluid. I believe my liver gets congested as well as the percussion becomes very dull until I take Alpha Lipoic Acid. Liver scans resembled chronic liver disease. Strangely, all forms seem to work (even adenosyl alone). If I am need B12, I get extremely anxious, neuro symptoms, inability to think, and so on. I have had doctors tell me that if B12 causes these symptoms, don't take it, but that's not possible unless they were to give me an alternative. It's like letting yourself become poisoned and very ill when you have the antidote in front of you. I couldn't do that. It would be torture.
Specialists are clueless (urologist, nephrologist, liver specialist). I've been to so many lately and I am getting increasingly frustrated. I have had high levels of arsenic on top of bacterial infections and I am wondering if I could have some type of porphyria (perhaps AIP?). I can't find a doctor that knows much about these conditions and when I mention it, it seems like they don't know what I am talking about, don't think I could be right, or don't know how to test for it.
The funny thing is, when urine retention is present, I feel better. I feel almost normal. When I pee in this state, urine is very dark, very concentrated, and usually foamy. The foam does not go away if you let it sit. It is not protein. Most recent urinalysis through LabCorp said I had dark urine, foamy urine, cloudy urine, and sediment/crystals. When the B12 wears off and the urine retention goes away, I start peeing what I accumulated, and I feel absolutely horrid. However the urine looks normal. For a while I felt I was the only one in the world that had such a side effect, but I recently find out that water retention is a side effect in about 0.4% of people who take B12 (usually those with chronic neuro-immune diseases).
While this symptom isn't painful, it is not normal. It has gotten worse, and I am unsure why. I take a lot of liver support and liver enzymes are ok last I checked and kidney function is good. However, I am depressed because I don't know how to address this issue and I can't find a doctor that really wants to look hard. I've only recently been able to feel depression as before combining B12/Folate treatment with KPU treatment, I was neurologically incapable of completely leaving an anxious state for years even with medications. I am not sure how to describe it, but I was incapable of feeling true depression.
If I can fix this issue, I will be able to take my KPU and B supplements and move on with my life. That's how close I think I am to being recovered or at least functionally recovered.
I am taking some fall courses starting next week as I am trying to move forward with life now. Just wondering if anyone has any ideas on what the hell the weirdness could be.
B12 has been huge for me. For whatever reason, I only need small amounts every few days to every week (it depends on how I feel). When I say small I mean about 5,000 mcg. This is small considering I used to have to inject 25 mg or take 5 tablets for the same effect daily.
However, there is one major problem. A problem I have described here many times in the past. When I take B12 (hydroxy, adenosyl, or methyl) I can't pee and retain fluid. I believe my liver gets congested as well as the percussion becomes very dull until I take Alpha Lipoic Acid. Liver scans resembled chronic liver disease. Strangely, all forms seem to work (even adenosyl alone). If I am need B12, I get extremely anxious, neuro symptoms, inability to think, and so on. I have had doctors tell me that if B12 causes these symptoms, don't take it, but that's not possible unless they were to give me an alternative. It's like letting yourself become poisoned and very ill when you have the antidote in front of you. I couldn't do that. It would be torture.
Specialists are clueless (urologist, nephrologist, liver specialist). I've been to so many lately and I am getting increasingly frustrated. I have had high levels of arsenic on top of bacterial infections and I am wondering if I could have some type of porphyria (perhaps AIP?). I can't find a doctor that knows much about these conditions and when I mention it, it seems like they don't know what I am talking about, don't think I could be right, or don't know how to test for it.
The funny thing is, when urine retention is present, I feel better. I feel almost normal. When I pee in this state, urine is very dark, very concentrated, and usually foamy. The foam does not go away if you let it sit. It is not protein. Most recent urinalysis through LabCorp said I had dark urine, foamy urine, cloudy urine, and sediment/crystals. When the B12 wears off and the urine retention goes away, I start peeing what I accumulated, and I feel absolutely horrid. However the urine looks normal. For a while I felt I was the only one in the world that had such a side effect, but I recently find out that water retention is a side effect in about 0.4% of people who take B12 (usually those with chronic neuro-immune diseases).
While this symptom isn't painful, it is not normal. It has gotten worse, and I am unsure why. I take a lot of liver support and liver enzymes are ok last I checked and kidney function is good. However, I am depressed because I don't know how to address this issue and I can't find a doctor that really wants to look hard. I've only recently been able to feel depression as before combining B12/Folate treatment with KPU treatment, I was neurologically incapable of completely leaving an anxious state for years even with medications. I am not sure how to describe it, but I was incapable of feeling true depression.
If I can fix this issue, I will be able to take my KPU and B supplements and move on with my life. That's how close I think I am to being recovered or at least functionally recovered.
I am taking some fall courses starting next week as I am trying to move forward with life now. Just wondering if anyone has any ideas on what the hell the weirdness could be.