Posts made by LucyJ

@Jonk Yep that's actually the book that got me to start taking it given my history with bronchitis and explained a lot of my childhood issues. I should potentially re read it. I feel like I need more of it (armour) but then freak out its too much T4...
Thanks for sending that supp through, I will have a look

@cs3000 Yeah been running on adrenaline since I can remember. Very stressful childhood and excessive exercise and severely underweight. I eat salt to taste but could try measuring it out and making sure I am getting 5g.

I haven't tried methylfoate for 2 years but it was one of the worst histamine gut reactions I got. I was taking bioceutical MTHF. I think I read if you were deficient in other b vitamins then you could have histamine response from folate. I'm better with consuming liver which you've reminded me to do.

I wish I could take tudca on an empty stomach! My upper gi is so sensitive and I feel a lot of adrenaline comes from my stomach and small intestine being irritated. Hence famotidine helping so much. So you take tudca before you eat each day?

@Jonk which multi do you take? I have pretty bad reactions to most supps. I think you replied to me on the old RPF suggesting a b vitamin but yeah everytime I try them I seem to get anxiety.(probably because they irritate my super sensitive upper GI) I'm really trying to find a way to commit to cronometer and meal plan as my goals for this year. So will start with one day and see how I go. Thank you

@cs3000 Thank you. Yes I do think lack of calories and getting enough protein is a big part.

I have this huge resistance to use chronometer, not entirely sure why. I really struggle to stick with it (out of character for me).

I do handle dextrose so I could get some. I stick to fruit juice for most of my carbs as you might have read I really struggle with fibre and starch still.

Truthfully I'm really co-ordinated and I've never had seizures.

I think the antibiotics is the die off releasing histamine that makes me crash. I wake up feeling hungover and woozy.

Surprisingly the armour makes me feel calm but I could try that.

The fatigue isn't normal fatigue (when I crash). Its like I'm hyper running around doing all my tasks and then wham it hits me and I cannot move, I have to fall asleep straight away. Maybe it's my liver.

Another thing is my teeth chatter constantly and I react very badly to clonidine and benadryl with hyped adrenaline surges and I can't sleep after taking them!? I have also decided today that ketotifen makes me worse re asthma/ breathing so I'm stopping it as swear it's increasing histamine (I only started it 1.5 weeks ago)

@cs3000 Just remembered I get hives from sun exposure on my chest so yeh maybe is actual MCAS

@cs3000
So I have a history of eczema and my thumb is often still itchy and scalp but I'm not a hives MCAS. I'm anxiety and hyper and fatigue and crash, poor appetite, reflux, POTS, hypermobility and severe nausea, breathing difficulties. I get skin sensory issues and can't handle wet hair and wetsuit but not hives.

I'm working to try and get more calories in but the poor appetite sucks for this. Even periactin doesn't seem to increase my appetite. I react to most supplements so don't take anything regularly. I have been recommended vitamin d and k2. If I take antibiotics and I don't take famotidine with it, I crash 2 hours post and sleep for 3 hours. If I take famotidine this doesn't happen. So maybe its just severe histamine in my gut and sibo not classic MCAS

Not so much uncoordintation but more shaking so bad it's had to balance and muscles almost collapsing. Often I can get through something but I'm shaking and feel very weak and dizzy after.

Any ideas for increasing appetite and calories welcome!

So pretty sure I have MCAS amongst a few other things maybe linked to RCCX gene. I'm not typical MCAS but crash asleep reactions and cervical instability/hypermobility and mild pots. I have quite bad shakiness and muscle weakness.

Famotidine helps as does cypro and ketotifen but not with the muscle weakness and shaking. They help with reflux and insomnia and anxiety.

Has anyone delt with MCAS and managed to reduce a lot of their symptoms? The cervical issue is mostly only a problem if I exercise. Exercise really sets me off but I so want to move and dance even though I feel like fainting quite often after class.

I take 1 grain of armour a day but do wonder if I should just take t3...

@Corngold thanks for this info. I just had a look, seems hard to get bufferin where I am and a few nasty ingredient but figure I could make my own version with quick eze and small dose aspirin and see if that helps

@sneedful I keep reading this and perhaps I’ve gone too fast but the anxiety I get (physiological ) when my upper gi is irritated has made this hard. Perhaps I should try baby aspirin once a week and see how that goes, thank you

@sneedful @Brunus
Yes I’m one of those super sensitive to a lot of supps types. Celiac and stomach ulcer history. I can’t tolerate collagen peptides but fine and helped by home made ox tail gelatin broth.

Gut super sensitive is probably from still high levels of cortisol and persistent helico. Improving but job stress doesn’t help. Famotidine helps.

Orange juice also irritates my gut.

I can semi handle one aspirin if I take it with bicarb and broth (and yep fully dissolved) for one day but still notice my gut is irritated slightly and could not do a second day .

Hence looking for other ways to get the benefits of aspirin!

I can’t yet tolerate aspirin orally due to stomach irritation. Has anyone used it topically or even rectally? If so, what’s the best way to do so.

I want to use it for pain management currently.

@sneedful I don't think I can get that in Australia anyway unfortunately but the calcium carbonate seems to still be working thank fully!

I don't yet tolerate the fibre in the carrot salad - major increase in anxiety and agitation every time I eat it and lol no I have not tried painting naked people

@cs3000 Thank you.

Okay so yesterday I tried quick eze (800mg of calcium carbonate, a bit of magnesium and probably some nasty fillers) but the pain and excess cortisol subsided within 20 minutes and I slept deeply for the first time in 5 days. I think I need to give a calcium carbonate supplement a proper go. I just have to figure out how to dose it and time it. Funny that even lactose free dairy gives me a cortisol reaction but calcium carbonate helps. I figure my gut is sooo sensitive the whey in milk sets it off as did powdered egg shells. Fingers crossed all I need is some calcium carbonate and I can expand my diet more to get healing on a deeper level

I have realised that so much of my issue with cortisol is when my stomach is irritated. For example I drank orange juice recently and had stomach ulcer pain then I was having cortisol surges every time I would eat and so much trouble sleeping. The cortisol makes me feel absolutely awful.

I have tried cypro and famotidine and they don't always help. Minocycline sometimes helps but then also increases inflammation a day later. p5p makes it worse. L-theanine helps a little.

Toxaprevent sachets help a bit (I figure the calcium carbonate perhaps)

Basically when my stomach is this inflamed I am reacting and having a cortisol response to everything.

I do home made ox tail gelatin everyday - usually 2 cups. I am trying to eat 2000 calories a day - hard when the pain and reflux is so intense. No starch , no fibre

I am wondering if it's worth trying bromocriptine to break this cycle (I read a study on it helping stomach ulcers) or if anyone has any ideas of what else might help?

@SummerPeach I think my issue is cortisol. Things that up regulate my glutamate and cause head agitation and tension = slow my gut. Now that's calmed down my gut is better but I will try the enzymes as I am prone to constipation (currently K2 seems to be causing some issues), thank you

@mostlylurking
I’ve done a bit of digging and I think I’ve got a glutamate issue. That the thiamine is causing agitation and insomnia because it’s up regulating my glutamate receptor. It’s really uncomfortable and the thought of taking any more makes me feel sick so I’m not sure I should keep taking it

@mostlylurking thank you. The TTFD made me feel weird and I think caused the insomnia.

I have Intra muscular thiamine injections here I think but I feel like thiamine makes me feel a bit agitated as does too much cascara.

It’s weird that the bloating and discomfort have stopped from the diet but so has the motility. I also had bad jaw pain last night which is my gut usually so I don’t know what’s going on.

I think I’ll try slowly increase the thiamine hcl. I have the no-shot sublingual one so I thought it would have done more. I’ve read you recommend having it on an empty stomach so I’ll try that

I’ve removed fibre and starch from my diet which really helps a lot of things. Following dr Sydney v haas type diet for celiac (cooked bananas, curds, ground meat, gelatin, fruit juice) but I’m struggling really badly with gastro paresis.

I tried taking thiamine yesterday but then struggled to fall asleep and had a restless night. And it only slightly helped (200mg hcl and 100mg Thiamax)

My appetite is now really poor. Cascara doesn’t seem to be budging much but I’m only taking a small amount.

I take 1/2 grain armour am and pm but worry I’m not getting enough calories in now that it’s causing a slight stress response

Would the next step be trying antibiotics? I crash hard from all die off so would have to be worth it. I have most antibiotics at my disposal - considering minocylcine because I have gastritis too and erythromycin hasn’t helped heaps in the past…

Does anyone have any other ideas?

So I've figured out that went I cannot tolerate things sometimes it's that it's lowering my blood sugar and increasing adrenaline (progest-e and carrot salad do this).

Is this because my liver is not working great? Even when I try and eat enough sugar whilst taking one drop of progest-e, I wake in the night with blood sugar issues. I think starch also does this in me.

Does anyone know any way to help this? I am trying to eat every 2 hours but it seems I can't keep up when I add progest-e in. (When I don't take it I sleep okay)

Looks like chromogenic bacteria with calculus build up. Dental clean should remove it but might need to change the oral flora to stop it building up again

@BioEclectic
I will try red potatoes and cook them for longer but I think I just need to ease up on starch as it really seems to coincide with increased cellulite along with the histamine things so I think it's my body telling me it's not the time!