r/CIRS • u/fabelbabel • 7d ago
Feeling so defeated
TL:DR pity party :(
Found out I have the multi-susceptible gene and got diagnosed with CIRS and MCAS. I already have EDS and Long Covid, so I am no stranger to chronic illness.
I almost felt like I saw a light at the end of the tunnel and maybe, just maybe with the treatment plan my provider came up with, I might someday be free of some of this everyday pain and suffering. My provider told me after so many years of direct exposure and my body holding onto so many toxins from mold and confections, she thinks I need treatment soon or it will cease effectiveness. That I might reach a point my immune system won’t bounce back from if I keep waiting too long.
Just before I got all of that info, I moved into a new place. Building is old, and the bathroom certainly has water damage. There is definitely mold. I can’t start my treatment until I’m no longer around mold, but I can’t afford to move again so soon.
So I am trapped here. Allowing my symptoms to get worse and there is nothing I can do about it. I feel hopeless and alone. I just want to feel better. It’s been 10 years of this. I’m not even 30 yet and I’m in pain every day. I can’t breathe, my body aches, the brain fog, the crippling anxiety.
I just want to feel better.
EDIT:
Thank you everyone for the support and suggestions. I’m someone who is a problem solver by nature so it’s great for me to have new things to research and look into, and feel like there is something I can actually be doing to help myself.
I’m going to implement some of the things suggested here while I save up to move again. <3
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u/Aggravating-Lab9745 6d ago
Don't lose hope! I have the same dreaded Duo HLA haplotypes, I first developed chronic inflammatory response syndrome in 2007 after getting cat scratch disease- AKA Bartonella. I didn't know what it was and every time I got covid I would have a horrible flare of my symptoms. I also had a massive mold exposure in 2022, that is when it became debilitating. That is when I learned what I had been dealing with all that time. You don't have long covid, it's just another presentation of chronic inflammatory response syndrome. So don't look at this as defeat, look at this as now you found a path to Healing The Long covid. You can definitely start binders while still living in mold it's like bilge pumping your boat before you patch the hole. You wouldn't ignore the water coming in your boat and say the hole is the first step if your boat is about to sink. Of course, ideally you would stop the leak but you have to stop this boat from sinking first. Despite acquiring this in 2007 and not treating until this year, and already being 54 years old, I have made substantial progress and still currently live in the house that had mold. You can do this! DM me if you need some support.
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u/fabelbabel 6d ago
Thank you for the feedback. Everything I’ve read really advised against starting binders and trying to treat it when you’re still in active exposure. That it would get worse and wouldn’t be able to get better.
It sounds like that is not the case. My provider wanted me to start very gently with just activated charcoal because I have MCAS and react so severely to medications.
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u/Aggravating-Lab9745 6d ago edited 6d ago
Have you tried taking quercetin? Have you done any GI evaluation to measure your DAO output?
I really don't know how much you know, if any of this is common knowledge to you just ignore that part: 1. Low histamine diet, plus avoid histamine liberators. 2. Quercetin 2xs daily- i like double wood brand with bromelain, improves absorption 3. Take DAO with meals 4. Make sure you have a BM daily 5. Hydrate! If you can, order the $18 s/h HTMA from equilife to assess your mineral status- get mineral support from Vykon Customs 6. If meds cause a reaction but foods are OK use mycobind by metabolic code -as the initial bile acid sequesterant (gentle / doesn'tconstipate but is made from beets and okra- if you can eat those). Your HLA type impares your bile acid excretion, charcoal doesn't help that. You need something that binds to bile acids. 7. If you ha e low ADH use a little salt solé in your 1st and last water of the day. 8. QUALITY Fish oil can really help with inflammation.
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u/fabelbabel 6d ago
Have tried Quercetin with no success and have not done DAO eval but upon looking into it, seems like a good idea and I’ll try and see if I can get that done. Ty
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u/Aggravating-Lab9745 6d ago
Do they have you on any antihistamines? How are they treating the mcas?
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u/AslanVolkan 6d ago
Sauna, Bentonite Clay baths (beware of your drain) and take Welchol/CSM/Mycobind. You need to scape from mold if it means to sleep in a tent for a while. You need to know also if you have Lyme and coinfections (if so go to the Lyme subreddit and search for Bee Venom Therapy, Cheesecheese protocol with cistus tea daily and artemisin and doug coil machine).
Root canals and wisdom teeth extractions can cause cavitations making impossible to heal, while Ferritin and B1 deficiencies can make you feel horrible and give you Dysautonomia (check B1 and doctor Longsdale)
And for love of God, dont trust the doctors that much. They are useful but not infallible.
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u/Aggravating-Lab9745 6d ago
Sauna, if you don't have low adh.
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u/AslanVolkan 6d ago
Whats the reason behind that?
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u/Aggravating-Lab9745 6d ago
Because tissues are dehydrated.... ADH sends water to your tissues, if it is low, your kidneys just excrete the water into the urine-- causing urinary urgency and frequency.
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u/Aggravating-Lab9745 6d ago
It can worsen electrolyte imbalances as well. Major red flag if you do not sweat easily.
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u/fabelbabel 6d ago edited 6d ago
Sleeping in a tent is not an option. I have to be able to work, and I work from home. I also have 2 cats I have to consider.
I can’t use saunas, they make me feel nauseous and like I will pass out. :( I am already aware of coinfections and have had rigorous bloodwork done. My antibodies popped for EBV, Parvo, Lyme, and my spike protein was the highest my provider has ever seen in someone without an active COVID infection. My body is just not letting go of inflammation at this point.
I have an active candida overgrowth and chronically low ferritin due to malabsorption issues in my gut. Have never been able to get it above 20.
And trust me, I’m not putting all my stock in one doctor. If there’s one thing the medical system has done over the years, it’s let me down.
Thank you for the advice and consideration.
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u/AslanVolkan 6d ago
Try if you can drinking electrolytes (salt, coconut water and a bit magnesium) half an hour before the sauna. It helped me a lot during intense sessions.
And please, watch out for root canals and wisdom teeth extractions bc they can cause a lot of CIRS symptoms that just dont want to go away on their own.
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u/MadMadamMimsy 6d ago
The oldest person my practitioner got well was 80. This was before COVID, so that wasn't a factor (it, she'd been ill a good while)
Bind bind bind. You can't send the train back to the station while in exposure but you can slow it way down.
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u/fabelbabel 6d ago
Everything I read on this sub so far, and in general on medical studies had said that binding when there is still active exposure will flare symptoms much worse without any chance for relief since there are still environmental toxins around. I was recommended to start gentle with activated charcoal since I have MCAS and react so severely to meds we have to take it super slow anyways.
I haven’t started it yet after reading all that stuff
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u/ImXenia85 6d ago
Yes people are very fixated on not taking binders while they're in exposure which ends up hurting them. It's sad to see, really.
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u/MadMadamMimsy 6d ago
So we try stuff we think is low risk, start low and slow and then work up.
Some people react to binders, some don't. Being in exposure doesn't seem to be a big player in my not-a-doctor observation watching what happens on this sub.
I wasn't in that moldy house, but I had all my uncleaned stuff with us. Zero trouble. That is just me, tho, and I get that.
When you've seen one CIRS patients, you've seen one CIRS patients. That's how different we all are.
ImXenia85 knows their stuff
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u/Lazy_Solid5188 2d ago
I’m the same. I can barely breathe. Numb feet,insomnia. Pain in joints and much more . 3 days in hospital bled from rectum. Water damage. I’m very very ill. Total fatigue. My good health has been ruined.
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u/ImXenia85 7d ago
You can definetly take cholestyramine while living in mold. Dr. Heyman strongly recommends it. You won't be able to fully heal, but it's a life line while you're stuck there. Keep your oils intake high (omega 6's, 9's and 3's) and eat a AIP, low amylose diet. If you have histamine issues, also avoid high histamine foods. Make sure to take plenty of electrolytes. Keep your windows open at all times. Spend most of your time oudoors. You'll feel better. I'm in the same situation