Sunmountain's Log

[tara]

post 103636 The dropper is ungraduated. Does anyone know how much 1ml is from the dropper?

I don't know. But if you know the volume you want to take, and you have a similar sized measuring spoon, you could callibrate by fillling the spoon with water, sucking it up with water, and seeing how much of the dropper it fills. Or how many dropper-fulls.
I mix my B-vts with water, but I make it easy for myself by adding half a litre of water, and taking 30ml morning and night for 8 days. I've had some fairly low doses, like 1/64 tsp split into 16 doses (ie 1/256 tsp =~0.02ml).

 

[sunmountain]

Thanks, Tara! I found a measuring spoon that had come with the Carafate. So I measured out 1ml. I don't know that the LDN made any difference so far.

I would like to know more about your B-vitamin mix. What all do you put in it, and what doses? And, how do you mask the foul taste?

I must thank Giraffe again for the footstool. It really makes a difference in evac! An added bonus is no-wipe! Such a simple solution. I hope others on the forum also try it and benefit from it. I am telling all my family members about it!

I've been battling insomnia again since a few weeks, or whenever it was I had to stop drinking fresh OJ. Today I will reintroduce dates in my diet and hope that might help some. Maybe the LDn will kick in at some point too. I don't think it caused me any sleeplessness last night that wasn't there already. In fact, perhaps slightly deeper sleep...remains to be seen.

The Gi wants me to do this and that tests, but I'm going to hold off to give the LDN a chance.

I wonder if cascara is ulcer-friendly.

 

[Giraffe]

post 103689 I must thank Giraffe again for the footstool. It really makes a difference in evac! An added bonus is no-wipe! Such a simple solution. I hope others on the forum also try it and benefit from it. I am telling all my family members about it!

I am happy that someone listened to me.

I have tried it because a friend mentioned it. It feels so right!

 

[FredSonoma]

post 102166 AC to the rescue. The extreme bloating after prevpak was endotoxin. AC got rid of it, just a tablespoon two times. The nurse had nothing better to say than "ginger tea" for the nausea. AC took care of the nausea too, as the endotoxin was probably overloading the liver.

Yesterday for the first time since the gastroparesis started maybe 1.5 years ago, I was able to eat a full meal (large plate of food!) without bloating up or feeling full after a few bites. I was so surprised and kept eating, and finished the plate, and didn't bloat! Wow! Hallelujah!

Motility is improved, but still inconsistent, which means stomach bloating comes and goes, though much less. I'm keeping to half cynoplus a day, divided. My response to cascara seems to have changed, ie., I don't seem to respond much to it. If I'm constipated, cascara doesn't do much. I went up to 3 capsules (never had to take more than one), and it did nothing or not much on constipation days. But thyroid does help with constipation, and I can almost feel the food moving down. I just don't know if I should increase it any further right now. I'm still visiting my sister in Seattle, and when I return, I'll check pulse and temp and try to make a determination from there.

It may be that I need some motility agent for a while. I read somewhere that LDN or low dose erythromycin can help peristalsis. Does anyone have experience with these for motility?

Also, uphill walking leaves me out of breath very quickly, though I can walk flat ground for an hour. Is this just about retraining my muscles, or something else?

Adding: Many of the food senstivities seem to be resolving as well. I can eat more fodmaps without bloating.

Sorry if this is a dumb question - what is AC?

 

[bluewren]

AC=Activated Charcoal

 

[tara]

post 103707

post 103689 I must thank Giraffe again for the footstool. It really makes a difference in evac! An added bonus is no-wipe! Such a simple solution. I hope others on the forum also try it and benefit from it. I am telling all my family members about it!

I am happy that someone listened to me.

I have tried it because a friend mentioned it. It feels so right!

I keep meaning to try this too - have the kids' old footstool available - thanks for the reminder.

post 103689 I would like to know more about your B-vitamin mix. What all do you put in it, and what doses? And, how do you mask the foul taste?

I've varied the doses a bit from week to week.
I measure up 8 days worth of the powders into a glass bottle. (8 days is so much easier to work out than 7. :) )
Add 500 ml clean water. Store in fridge. (It has to be dark; I don't know if cold is important or not.)
Each morning and evening, shake bottle and measure out 30ml. Add to a bit of OJ or AJ. Drink.
I can't remember all the doses off top of my head, but approx per day IIRC:
B1: 120 - 180 mg (might try more at some stage)
B2: 100- 400mg (Probably most people don't need this much - I was trying 400 mg as a specific anti-migraine remedy, with no obvious improvement, but have backed off to less now)
B3 - niacinamide: 200mg
B5: can't remember - somewhere between 1/2 and full recommendation on purebulk packet
B6: 5-10mg
B7 - biotin: 1-2mg
B12: 0.25 - 2mg
I added them in gradually. Don't know if I need all of them. Or if anyone else does.
If anyone wants to suggest improvements to this, I'm interested.

 

[Giraffe]

post 103131 Today I added back Niacinamide and P5P. Does anyone know if these are ulcer friendly or not? Unfortunately, my stomach does not give signals if something is hurting the lining...as I found out with the H. Pylori.

See Haidut's thread Vitamin B6 (P5P) functions as a PPI.

https://en.wikipedia.org/wiki/Proton-pump_inhibitor

 

[sunmountain]

I'm up to 2mg of LDN. No difference so far. Maybe deeper sleep, but still wake up once a night and can't get back to sleep. The insomnia was there before LDN.

Saw a liver specialist who wants ultrasound with shock to test for fibrosis. Liver enzymes elevated.

The GI wants to do capsule study and gastric emptying. I won't do gastric emptying. Capsule has RF and might not pass. Hard to say how damaging assuming it does pass. And how do they know if and when it passes? More questions for nurse.

Still fiddling with thyroid dosing. Quarter cynoplus was not enough. Back to quarter x 2 daily. I had dropped to quarter after Prevpak because of what seemed like rt3 symptoms, but those must have been something else.

Temps and pulse all over the place. Yesterday at liver doc, temp was 97 at 2pm, and pulse 94. I feel warm most of the time, so don't understand. Morning readings are off due to insomnia.

Weight must have dropped a bit more; down to 130 now. Fitting into some older clothes.

I bought a set of 3 step stools. One for work. One for car. One extra. If you think I'm going overboard, you haven't tried it yet. I'll have to think of an explanation for why I'm going into the bathroom at work stool in hand.

Thanks for another timely link to Haidut, Giraffe! P5P is among those I take. Anyways, I'm wondering how long it takes the stomach lining to heal. I've been taking slippery elm and glycine daily. Another question for nurse.

Talking about acid reminds me to log that my "low sugar" issues seem to have vanished. I can go longer without food and feel hungry mostly around mealtimes. So it must have been the acid that caused feelings of low sugar.

Changing the diet yet again is stressful, so I've been eating out for dinner quite a bit lately. Fed up with changing diet in short order. FODMAPS, then no acid, now no more fodmaps. No fresh OJ is the biggest killer. Whine.

Tara, that's a great mix of B's. I'll want to experiment with that...once I sort out the diet.

Oh, and the liver doc said I looked "slim." The context was that he was telling me not to eat too much to keep liver healthy!

Die, Archaea, die!

 

[tara]

post 104104 I'll have to think of an explanation for why I'm going into the bathroom at work stool in hand.

post 104104 Talking about acid reminds me to log that my "low sugar" issues seem to have vanished. I can go longer without food and feel hungry mostly around mealtimes. So it must have been the acid that caused feelings of low sugar.

Great. Or maybe you are storing glycogen better by now?

post 104104 No fresh OJ is the biggest killer. Whine.

Hope that is just a temporary thing, and you can go back to enjoying it again eventually.

post 104104 Die, Archaea, die!

Yeah!

 

[Giraffe]

post 104104 I'll have to think of an explanation for why I'm going into the bathroom at work stool in hand.

I would say this was the doctor's prescription.

 

[sunmountain]

Yesterday I took stool into bathroom at work for the first time. Luckily no one was around.

I'm up to 3/4 cynoplus daily, divided 3 times a day. BUT my morning reading today after I slept all night (rare nowadays due to insomnia) was 96.9 and pulse 72. That is unbelievable because 3/4 is a lot of cynoplus compared to what I took before. I can only suppose that the sibo is suppressing my metabolism a lot.

Unless LDN is contributing to low temps. But I can't imagine that Dr. Peat would recommend LDN if it lowered temps.

So I'm taking 3/4 cyno and 3 cascara pills daily in order to get 2 decent poops a day. Occasionally even with that, I get only 1 poop a day. It almost feels as if the Archaea keep adjusting upward their methane production to the increased dosage of thyroid and cascara and anything else.

In which case, it would seem that improving peristalsis alone will not defeat the Archaea, but they have to be killed.

Also, I re-read up on cascara, and it basically affects only the colon. Which means the transit time in the SI is not known. And that the Archaea have paralyzed the colon in addition to perhaps the SI.

Last evening, I went for massage, and was very tender to pressure. I wonder if that is because of the LDN?

This morning, I am very tired. Almost impossible to get out of bed.

Meanwhile the tests for immunity to Hep A and B have returned, showing reactive to HAV and negative to HBV. Does this mean the liver specialist will recommend vaccines for A or B?

I'm up to about 2.25mg LDN.

 

[sunmountain]

And my hair is falling out again. It's very confusing because I know by now that fatigue + hair falling usually means low thyroid and time to up dose (since temps/pulse always low). But I just upped dose to 3/4, so why is it still falling out?

 

[sunmountain]

The GI's nurse just got back and said I should consult a nutritionist regarding healing of stomach lining. I'm not going to a nutritionist...I already have one...Dr. Ray Peat!

On the net, I've read estimates like 2-3 months for healing of uncomplicated peptic ulcers. The liver specialist said that stomach lining renews every 3 days or so. Anyone know about timeline for healing ulcers?

thanks

 

[sunmountain]

I found one study that found 70+% recovery in 3 weeks and around 82% recovery in 6 weeks.

Last night I ate dinner out with a friend. I ordered cheese quesadilla, and it was crispy fried when it came. So I had just one wedge of it and left the rest. Then last night I took 3mg of LDN. Sometime during the night I woke up and felt a pain immediately under my right breast in the joint and toward the sternum.

This morning, the pain is still there. I read up on LDN and liver, and there is conflicting info. Some say it protects the liver; others say if there is existing liver disease, to take it only once every 2-3 days.

I'm wondering what this pain might be symptomatic of. It's right under the breast.

Adding: I've also experienced more thirst lately, and less desire for salt.

 

[sunmountain]

So. The pain was GERD. It was close to the breastbone, which is where the esophagus is, right?

Now why did GERD come back, when it had resolved completely after prevpak? It didn't matter what I ate, the GERD didn't come back. So it was not dependent on what I ate.

I suspect the LDN. After all, it is stimulating things, right? It stimulates the immune system; it stimulates peristalsis. So if it is stimulating digestion, why wouldn't it stimulate acid?

I recall that the last few days AFTER starting LDN, I was waking up feeling acidy, and also at other times. I couldn't believe it, so I ignored it.

Thinking aloud here. Could be wrong.

Maybe I upped the dose too quickly. I was at 3mg two nights ago. Last night I skipped it, and don't plan to take it tonight.

Today has been interesting. Only one cascara this morning, but three full poops. A bit more energy today.

I think I'm going to lay of LDN till I'm sure the GERD is resolved. Then I'll start back up at 1.5mg and see what happens.

 

[sunmountain]

Stopped the LDN after the last post, and the GERD resolved. Maybe 3mg was too much too soon. May go back on a lower dose of say 1.5 after a while.

In the last two days, I've developed a pain a couple of inches in from my LEFT armpit, above breast. I can't feel any lumps or anything and don't think it's a breast issue. I can't figure out what triggers the pain; it's not constant.

What could be causing this pain?

 

[sunmountain]

Gastroparesis and GERD are back. (Chest pain has not come back after staying around a few days.) Did stool test for H. Pylori on Thursday; waiting for results. But it seems likely it did not die after Prevpak, though reduced enough to alleviate some symptoms.

The GERD started (or became noticeable) after the EGD.

If positive for HP, then the next frontline treatment is Flagyl 1g + Tetracycline 2g + Bismuth + PPI for 14 days. It's called Quad therapy.

I've read the posts on Flagyl. Two things come to mind. Those who had bad experiences with it took it for very long -- months. If I take it, it would be 14 days. Second, it would be taken with Tetracycline, which may or may not mitigate some of its effects?

While waiting for test results, I decided to try MB. I ordered Kordon, which is 1mg = 1 drop. The dose mentioned by Haidut for killing bugs is 30mg. I got a graduated dropper, and took 1 mL of MB in two empty capsules. I think that is about 20 drops. I will take another 10 drops around 2pm, finishing up the dose. An hour after MB, I will sit under lights.

My main concern with MB right now is IF eyes turn blue. That would be very stressful at work, so I'm hoping not, or not much.

 

[sunmountain]

No blue eyes!!!!

Only pale blue pee.

Tomorrow I'm going to take the 30mg all at once in the morning empty stomach an hour or so before breakfast. Then I'm sitting under lights at work (yes I hung up my chicken lights there!) until I feel hot.

I feel good right now. Warm. And much better fatigue-wise. All the old symptoms had returned: gastroparesis, GERD, and especially FATIGUE.

I remember Haidut (bless him) had posted another study showing MB one month for fatty liver. I have fatty liver, so will definitely take it for a month now or later. If I feel better in GI, then I'll continue it after a few days.

I want to pick up a PPI from the store, though. They use PPI in front line therapies because it draws out the H. evil Pylori from the stomach lining. I'll probably use the same PPI that was in prevpak, I think prevacid. But OTC it's available in a different dosage than in prevpak. Hope that works.

 

[sunmountain]

Stool antigen for H. Pylori came back negative.

Wow. Hope the test is reliable.

So now it's me and the archaea??

Next step, schedule breath test for sibo.

Hope the MB works against archaea. Today was day 2. I took 30mg around 8am on an empty stomach. Was fine all day until about 2 or 3pm when I developed a strong headache, which is still around. Will try to divide the dose tomorrow, which means taking the apparatus (bottle, dropper, empty capsules, holder for dropper) to work...

Although the headache could also be due to too much red light? I was under them nearly all day even after I was feeling too warm.

In other labs, CRP actually went down from June 0.7 to 0.5 which is still the upper range. Other labs mostly in range. ESR high end of range.

Adding: muscle stiffness better after MB but still there. I thought it was due to ammonia by HP. If it's sibo, can methane cause muscle stiffness? The symptoms are so similar: gastroparesis and more recently, GERD. Can sibo cause stomach issues also? Or maybe there's some other bug in the stomach? Too many questions.

 

[onioneyedox]

About MB headaches see this https://raypeatforum.com/forum/viewtopi ... =85&t=6736

If you are using infra red emitting lamps don't stay too close, they can induce heat stress/damage. When you start to sweat under them move the further away. (Heard from David Asprey's podcast, but makes sense to me)