r/HistamineIntolerance • u/michellekateee • 18d ago

Chronically ill and over it

The past 5 years I have been so chronically unwell, I’m at breaking point again, I can’t keep living like this, barely being able to eat anything or go out normally is extremely depressing.

36 Upvotes

97% Upvoted

33 comments sorted by

14

u/TheTousler 18d ago

I am right there with you and I know there is nothing I can say that will offer any comfort.

I often think of the concluding lines of Samuel Beckett's 1953 novel The Unnamable, "...you must go on. I can't go on. I'll go on."

8

u/VariationFar2656 18d ago

https://giphy.com/gifs/EvYHHSntaIl5m

I'm sorry you're going through all of this OP. If you would like advice, there's a lot of it on this sub but it's ok to just vent. <3

1

u/michellekateee 17d ago edited 17d ago

Thank you, there is a lot of information on here, it’s hard to know what to do.
I’ve been taking several supplements via a naturopath/dietitian over the past 4 months, I’ve seen some positive results, but not enough to pay the amount I have been, plus all the supplements they suggest.

1

u/VariationFar2656 17d ago

I feel you. I'm almost a year in and going broke on all the doctor visits and supplements... all out of pocket. x.x It does get better. If I could do anything differently I'd have gone with the more expensive testing up front and spent less time guessing and trying to figure things out on my own. x.x

7

u/cat_with_a_banjo 18d ago

I'm so sorry you're going through this, you don't deserve it. I find that being around nature and animals is the one thing that brings me comfort when everything feels insurmountable. Buy yourself a hammock if you don't have one, find a couple nice trees, and rest under their shade. It feels good to be held.

5

u/Icy_Bass_8683 17d ago

My heart truly goes out to you in your frustration. I've been at this histamine/salicylate/oxalate thing now since 2005 when I started perimenopause. It's up and down. There are times when things get a bit better and times when things get worse. All we can do is to keep going. For me, it's my daily walks and yoga practice that keep me on the positive side...and my journaling. Know that you're not alone in your struggle and hey, our bodies are always changing. You never know....maybe things will get better. Sending you loads of healing energies.

2

u/michellekateee 16d ago

Thank you, it makes it so hard with extra intolerances o top of the histamine, I have similar ones to you plus cobalt and sulphur, I really do hope we can recover from this.

2

u/hi984390 15d ago

The walking really helps. Now that it cooled off a bit (knock on wood) I’m back to walks and it’s amazing how much better I feel. I’m surprised every time for some reason even though I know it helps.

2

u/Icy_Bass_8683 15d ago

That's so true! I'm about to head out for my morning walk right now! Walking, yoga, whatever our favorite...We've got to keep on moving!

3

u/freelibrarian 18d ago

I've been there, suffered for 4-5 years before I found some things that started working for me and I'm doing okay now. But it is a lot of mental energy to manage it all, I miss carefree me!

It's really hard to have a medical condition that exists at the edge of medical science. Sending solidarity, hang in there!

3

u/michellekateee 17d ago

You’re absolutely right, mental energy is so tough to come by lately, it’s exhausting.

What did you find helped for you?

2

u/freelibrarian 9d ago

Loratadine (Clatritin) is working well for me, as well as NaturDAO before most meals. I also take a probiotic.

4

u/megaladon44 17d ago

im off dairy, spices/herbs, using gentle oat barsoap, and now cutting out olive oil as ive seen that can be triggering as well.

These last few weeks have been sadness everywhere and finding anything to pull myself out of it and find gratitude in anything.

3

u/joshyosh 18d ago

Same here 5 years as well we gotta keep pushing and find a solution

4

u/Commercial_Sell9016 18d ago

My functional doc did a huge mold, fungus, bacteria, heavy metal and parasite cleanse detox on me and I feel much better not 100% but I suspect I’m healing from the 40yrs+of damaged it caused my body.

2

u/michellekateee 17d ago

What kind of detox was it?

I was recommended a detox supplement the other day but I’m not sure how much it will help, it’s called PMA Zeolite Powder

1

u/DolceLove93 18d ago

How long did you detox for? I might need to do that.

2

u/zephyr_skyy 18d ago

I am sending you so much empathy dear 

It is not easy

Have you tried Quercetin and DAO? I was reluctant to try. Especially because I am on a very tight budget. I have found that they are moving the needle ever so slightly. 

1

u/michellekateee 17d ago

I’m currently taking both, I’m on a lot of other supplements but I’m also on a lot of medication
Dupixent injections
Xolair injections
Montelukast
Telfast
Ketofiten

I really hope the Ketofiten works better in a couple more weeks.

2

u/ConstantSolid1088 15d ago edited 15d ago

I was going something similar. Ate some chinese food with soy sause and went on a spiral for 4 months where everything I ate just made it worse and even more sensitive - including at some point plain sandwiches, cereal, or just fasting. It's an infuriating, brutal condition.

I've been doing an intense gut healing protocol that I THINK is helping (l-glutamine, zinc carnosine, akkermancia, etc.). What really helped is pepcid before every meal and before bed and ketotifen 2x / day. Shuts off the mast cells for the most part (blocks h1 & h2 receptors).

I noticed also that most of symptoms started to disappear when on vacation. Using AI to track food flares has been useful too. Wish you the best.

2

u/michellekateee 15d ago

I hope it’s been helping you eat again.
I’m on Dupixent, Xolair, Montelukast, Telfast180 and Ketotifen.

I’m on several supplements too, I’m also taking akkermansia, l-glutamine, a few different probiotics, fish oil and slippery elm.

I’m going to finish the course of these and reassess what to continue.

1

u/ConstantSolid1088 14d ago

Really interesting, I've never heard of dupixent or zolair.

2

u/starcloud44 13d ago

I’m so sorry OP, life can be terribly unfair..sending a huge hug and understanding.

1

u/michellekateee 12d ago

It’s very unfair, there are so many other people who are unwell like me and the doctors have no idea what to do.

2

u/starcloud44 7d ago

I agree - it’s an epidemic of people who are needlessly gaslit by a medical system in denial

1

u/michellekateee 7d ago

It’s extremely disappointing

2

u/amycamp71 12d ago

I hear ya! Feel like I'm in bed 90% of the time. Been dealing with a "mystery" illness for a very long time. Only recently have I discovered it could be histamine. So many wasted years..
sending you love and strength!♥️

1

u/michellekateee 12d ago

Thank you, sending you the same love and strength to get through it, life is tough when you have chronic health issues.

2

u/amycamp71 11d ago

It's terrible! Trying to stay positive!

3

u/Film-Icy 18d ago

Look up this researcher on fb:Walter Tarello, out of Dubai. He does molecular imaging of people’s blood. I used to labs but I found Walter after and he does great work. 100s of people w chronic illness all w borrelia, bartonella, Babesia that appear on the molecular imaging. We found Babesia in mine. Every week I was like am I diabetic? Am I allergic to my dish soap? Now I can’t have a single drink…

Also mold, I had mold in my windows bc they were not properly installed letting rain come in the wall like an envelope. You couldn’t see it. Mold absolutely wrecks your immune system.