Quote from Rachel on July 25, 2019, 4:45 am

Quote from dan on July 24, 2019, 8:15 pm

Maybe try benfotiamine (fat-soluble B1); it's what Dr. Izabella Wentz recommends.

Thanks Dan, I am taking that form.  I do find it easier on my gut than the HCl form.

 

Quote from lil chick on July 25, 2019, 5:54 am

Wow I didn't know that people could react so badly to giving blood!  It makes me wonder about blood pressure.  The other day, I was thinking about how (vitamin A induced) kidney issues are maybe fiddling with our blood pressure.  And that possibly some people have too much water in their blood, and some have too little (because the kidney is a bit off).  I can totally see how a person in this situation maybe shouldn't give blood.

I lost a lot of blood once, however, not so much that my doc thought I needed a transfusion or anything.  I spent the next couple of weeks in my jammies, just literally felt like I couldn't function.

I would expect this to get better, but not in weeks or months but more like in years.

Quote from lil chick on July 25, 2019, 6:00 am

One more thing comes to mind.  What is the pill that gives you gut pain LIKE?  Have you ever tried grinding it to a powder (or opening the capsule) and taking it in powder form?  Perhaps it is getting caught in a pocket in your gut.

Quote from Rachel on July 25, 2019, 9:19 am

@lil-chick

Hi,

"Wow I didn't know that people could react so badly to giving blood!"  I think my consultant just messed up.  I was only about 8 stone at the time and the blood transfusion service won't accept blood donations from people weighing less than 7st 12 and that is with a  healthy person and not someone with multiple chronic heath conditions.  So I was near the threshold for taking a full unit in the first place.  Add to that the fact that I have pretty severe CFS and the studies that show that CFS sufferers typically have low blood volume.  Some up  to 50 % less than normal.  If he had read my notes properly he would have seen that I have  low blood pressure (likely due to low blood volume) and POTS which is also often due to low blood volume.   For most people a unit of blood is 7 - 9% of their blood volume.  I used some online calculators and worked out that a unit of blood for me was at least 15% of my blood volume.

"What is the pill that gives you gut pain LIKE? Have you ever tried grinding it to a powder (or opening the capsule) and taking it in powder form? Perhaps it is getting caught in a pocket in your gut."

Thanks for the suggestions but I don't think its that.  I react to all sorts of supplements and foods.  I've tried opening capsules, using the tiniest pinch of powder etc but most things just irritate my gut.  I get the purest forms I can find without fillers and binders etc as much as possible but mostly they still cause pain.  There is no discernible pattern.  I've looked at salicitates, amines, histamines etc all the usual things but there is no real pattern.  I don't get the usual type of symptoms either - no hives, skin issues, sinus problems, mouth ulcers etc

I just get gut pain and sometimes bloating.  It feels as if the food and supplements etc are grazing my gut like if you skin your knee.  That's the best description I can come up with.  I must be getting some inflammation because it causes my bladder to hold less urine.  I think it is from pressure on my bladder from gut inflammation.  After reading Grants work I have come to suspect that glands in my gut are not producing the mucus they should.  Like the sebum glands not functioning in the skin of people with eczema.  My skin is fine, it seems to me that my weak link is my gut and I basically have eczema of the gut.  I searched a bit on sjogren's forums and found people there describing a similar thing.  Your intestine's should secrete a mucus that protects the surface of the gut and I don't think mine is doing this.

On a more positive note, for the last week my stool consistency has improved a little so I am hoping this is a sign that my gut is starting to heal.  It's too soon to know for sure, but I'm keeping my fingers crossed.

 

Quote from Ian McCoondog on September 20, 2019, 1:08 pm

I've noticed since starting zero VA last year that the only thing not improving (and is intact worsening) is arthritis-like pain in my thumbs. My latest theory is that it is related to iron deposits: worst flare-up was when handling strong magnets, still acts up when I handle strong magnets, and my food-borne iron intake went way up when I started zero-VA. 

I've started donating blood after a 30 year hiatus (due to a beef with Canada's blood agency) for purely selfish reasons - to get a partial phlebotomy. I've also been having tannin-containing beverages with meals & taking calcium with meals. I'd like to imagine all this is helping, but it's way too early to tell.

Quote from puddleduck on September 28, 2019, 4:46 am

Hello @rachel,

I’m sorry you’ve been dealing with such awful syndromes. How have you been feeling these past couple of months? I hope that your gut has gotten some relief. I partially healed my CFS symptoms through a high-caloric junk food diet, but am now hoping that low-VA will improve things further. So far, my digestion has improved tremendously, so fingers crossed it has for you as well. 🤞

Quote from Rachel on September 30, 2019, 3:04 am

Quote from puddleduck on September 28, 2019, 4:46 am

Hello @rachel,

I’m sorry you’ve been dealing with such awful syndromes. How have you been feeling these past couple of months? I hope that your gut has gotten some relief. I partially healed my CFS symptoms through a high-caloric junk food diet, but am now hoping that low-VA will improve things further. So far, my digestion has improved tremendously, so fingers crossed it has for you as well.

It's been slow going but I've seen some small improvements.  The fatigue is slowly improving but still within my normal pattern of slow improvements and relapses.  I've not broken new ground here yet. 
I tried eating more calories and widening my foods a couple of years ago but by then my gut was too messed up to tolerate any junk foods so other than adding dairy, potatoes and oats back into my diet I wasn't really able to change what I was eating.  

My digestion is still bad but my stools have changed a bit.  I am no longer passing dried up pellets which is nice.  My BM's are now softer and I am less constipated.  This is the main change to date and happened at 5 - 6 months.  This is what brings me hope that slowly my body is starting to heal.

I started to log my experiences and posted them in Aug I think.  There's a lot to catch up on when you've been away for a while I know.  This month has been difficult.  My energy has dropped a bit.  I think I've had a stronger detox and I've felt it.  Emotionally it has been hard.  My anxiety has gone up and I'm finding things quite a struggle.
Thanks for asking after me.  I hope you are doing well and progressing.

Quote from puddleduck on October 9, 2019, 12:30 pm

I can relate to most of your experiences on the diet so far @rachel ! Sometimes I think it’s helping the fatigue, but it can be quite hard to measure with the ups and downs. 

Yeah, the change in bowel movements is the thing that makes me hope my body is “detoxing” or whatever, as well. I’ve found if I feel especially bloated and nauseous that the activated charcoal in the morning does help a bit.

The periods of increased anxiety and fatigue are pretty rough. I feel for you there. It’s not easy to have those emotional swings happen, and then the energy decrease along with it can make it all feel overwhelming.

Fingers crossed we’re on the right track, eh? 🙂 

Quote from Rachel on October 10, 2019, 1:36 am

Thanks @puddleduck