Feel much better on methylation and pyroluria treatment, but still weird symptoms

[kday]

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.

 

[slayadragon]

I'm glad to hear you're doing increasingly well, Kyle.

Weren't you planning to go on a vacation to the Bahamas or something? Have you done that? Did you still have this symptom of urine retention and needing the B12 while there?

After I started to take large amounts of B12 (10 mg shots) and Metafolin (I'm doing Deplin now), my liver got really messed up. I guess that shouldn't have been a surprise. Most people with CFS don't have liver problems, but that's because their toxic load just stays in the system rather than moving out.

Have you ever experimented with cholestyramine? Most CFS patients can't take it, but I suspect that you're at the point now where you might be able to benefit from it.

If this is a biotoxin, you may have more success if you are removing as much of it as you can through the intestines. It's possible glutathione-methylation will remove it on its own, but the system may have to work a lot harder that way and you may get a lot more reabsorption (meaning that it's not very efficient).

Best, Lisa

 

[kday]

I'm glad to hear you're doing increasingly well, Kyle.

Weren't you planning to go on a vacation to the Bahamas or something? Have you done that? Did you still have this symptom of urine retention and needing the B12 while there?

After I started to take large amounts of B12 (10 mg shots) and Metafolin (I'm doing Deplin now), my liver got really messed up. I guess that shouldn't have been a surprise. Most people with CFS don't have liver problems, but that's because their toxic load just stays in the system rather than moving out.

Have you ever experimented with cholestyramine? Most CFS patients can't take it, but I suspect that you're at the point now where you might be able to benefit from it.

If this is a biotoxin, you may have more success if you are removing as much of it as you can through the intestines. It's possible glutathione-methylation will remove it on its own, but the system may have to work a lot harder that way and you may get a lot more reabsorption (meaning that it's not very efficient).

Best, Lisa

I wanted to try cholestyramine, but I couldn't get my doctor to prescribe it last appointment. I'm wondering if I can bypass doctors altogether and get it another way. Know how to find that stuff without a doctor? It's been on my list. Most things that give other people bad reactions I feel immediately better on. KPU treatment is one. Besides a metal taste in my mouth for a while, I only felt better and better with each dose. I read stories where people struggle on it for 6 months or more. I wasn't expecting immediate improvement.

Yes, I went to the Bermuda (not Bahamas). I felt great. I did many miles of walking and hiking a day, climbing walls, swimming in the ocean, bodysurfing etc.

I felt good the majority of the time, but I still had this symptom (in fact, it was more intense while I was there). Like I said, this symptom doesn't hurt or anything and actually correlates to feeling better. I used public transit the entire trip and sweated there like never before and I think that helped me a great deal to this day.

No post exertional or fatigue problems. I don't really get fatigued anymore as I am wide awake 14 hours a day. The only time I felt really bothered is when we were in this unairconditioned building that was probably well over 100 degrees inside (and lots of humidity) on top of a hill; but I was ok after having a drink and cooling off.

However, this weird symptom is what is either what is holding me back or making me better. Perhaps both, I don't know.

 

[slayadragon]

Reading your first post again, what do you mean by "urine retention"? Edema? How severe is it? Why do you consider it to be such a problem?

 

[kday]

Reading your first post again, what do you mean by "urine retention"? Edema? How severe is it? Why do you consider it to be such a problem?

I guess edema is the proper word. It is pretty severe, but at times when the B12 is wearing off I'll excrete more fluid. Not in ankles, just belly. But I have also been keeping it down with natural diuretics (i.e. Dandelion leaf/root) and occasionally a pharmaceutical one. I feel that I have a lot of water weight still.

I guess it's important to note that diuretics work, but sometimes they don't. Yea, that doesn't make any sense, does it?

edit: Reading the definition of edema, it doesn't quite fit I don't think. More like ascites than edema. And it definitely is not severe if I compare it to the pictures on image search and wikipedia. Perhaps moderate is the right word.

 

[slayadragon]

When I was taking even a little CSM in a so-so place, I got a lot of edema like that. It was "pitting edema," with my clothes making really dramatic marks that didn't go away for a long time.

At this point, I occasionally started to go out to the wilderness and sleep in a tent. Then my body would release all the extra fluid spontaneously. I would lose a whole clothing size and more than a half a shoe size, overnight. Generally I had to get up in the middle of the night several times to pee -- not fun when I was in the mountains and it was 30 degrees outside!

Then I would go back to civilization, and the water would start retaining again.

Other people doing avoidance in different places and noticing their responses have reported the same thing. Unfortunately, I never figured it out. My guess is that it's related to vasopressin (ADH). There's a drug that Shoemaker sometimes uses, desmopressin, that is supposed to treat this component of the illness. If I remember correctly, his patients have told me that they've just been prescribed that drug for a couple of days, and that it reset things for them. I can't recall what the symptoms that they had prior to the drug were, but they seemed to think it was a good thing (actually almost the only thing that Shoemaker gave them that helped, except csm).

So maybe you should read about that. Do you have "Surviving Mold"?

Let me know if you find out anything.

 

[slayadragon]

BTW, do you get static shocks? That's a result of vasopressin being messed up, I think. I always take them as a sign of exposure, but it may be people can get them to go away by fixing the hormones.

 

[therron]

Hi kday
I too have had the "belly edema". Yes, it's really weird that it is so strictly localized. I'm not having that symptom now, so I thought about what I have changed in my protocol, and the only thing I can think of is that I added molybdenum for some sulfite sensitivity issues. I don't know if it was the molybdenum that helped, or if the symptom just passed, but I thought I would pass along this information.