r/CIRS

Image 1 — Can anybody tell me if im on the right track ... High shbg years of trying to figure out root cause.
Image 2 — Can anybody tell me if im on the right track ... High shbg years of trying to figure out root cause.
▲ 2 r/CIRS+1 crossposts

Can anybody tell me if im on the right track ... High shbg years of trying to figure out root cause.

SYMPTOM OVERVIEW

My primary symptoms are:
•  complete absence of morning erections and ED
• Very low libido and motivation
• Severely disrupted sleep — repeated entry into REM then bouncing back out , constant waking 2-5am unable to return to sleep
• Chronic fatigue and afternoon energy crashes
• Brain fog, poor concentration, difficulty with executive function and task initiation
• Low mood and motivation — markedly worse than my baseline before age 25

I want to be clear that before approximately age 25 I had none of these symptoms. I was functioning normally across all domains — and then one night I started feeling terrible and never came back.

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TIMELINE

2019-2020 — Age 24-25
First onset of symptoms. Noticed declining libido, loss of sleep and morning erections, and reduced motivation and needing for caffeine . Also noted SHBG was elevated at approximately 70 nmol/L on first testing. This was the first abnormal laboratory finding.

2020-2022 — Age 25-27
Symptoms progressively worsened. Multiple doctor visits. Standard hormonal workup performed — testosterone was high-normal to elevated throughout, SHBG persistently elevated 70-90 nmol/L, standard inflammatory markers largely normal on conventional testing. Sleep disruption worsening. Cognitive symptoms becoming more noticeable.

Interventions tried during this period:
• Danazol — similar temporary SHBG suppression with immediate rebound. No sustained benefit.
• High carbohydrate dietary intervention 400g daily — minimal SHBG response, SHBG climbed further over time.
• Multiple specialist consultations including urology, endocrinology, and primary care — no clear diagnosis established.

2022-2023 — Age 27-28
Further workup. Penile Doppler ultrasound performed — normal. Sleep study performed — no sleep apnea identified but notable finding of repeatedly entering REM sleep and boucing back out. Hormone levels continued to show high total testosterone with persistently elevated SHBG. Standard inflammatory markers continued to appear largely normal on conventional panels.

NO STD, NO hepatitis.   

Mercury identified as elevated on comprehensive nutritional testing. Dental amalgam removal performed using SMART protocol with charcoal binders. Followed by 4-5 rounds of IV DMPS chelation plus oral DMPS plus sauna and binders for mercury detoxification.

2023-2024 — Age 28-29
Continued decline despite interventions. Vitamin D crashed from 68 ng/mL in April 2024 to 31 ng/mL by October 2025 despite presumed intake — suggesting ongoing consumption or absorption failure. IGF-1 declining from 214 ng/mL in 2022 toward 169 ng/mL. Free T3 declining from 4.1 pg/mL in 2023 toward 3.0 pg/mL. SHBG climbed to 88.8 nmol/L then 108 nmol/L.

2024-2025 — Age 29-30
Extensive functional medicine workup completed.

Key findings:

Labcorp October 2025:
• Total Testosterone: 1,739 ng/dL — significantly above range 264-916 (would fluctuate between 700-800-1000-1500 for no reason)
• SHBG: 108 nmol/L — severely elevated, range 16.5-55.9( has always climied up and came down and then back up  but has never gone under 75)
• Free Testosterone: 191.1 pg/mL — above range despite high SHBG (but felt no different despite having more free T)
• LDL: 147 mg/dL — elevated
• Free T3: 3.0 pg/mL — declining trend
• IGF-1: 169 ng/mL — declining from 214 in 2022
• Vitamin D: 31.3 ng/mL — significantly reduced from 68 ng/mL prior year
• HbA1c: 4.8% — excellent
• Fasting insulin: 6.3 uIU/mL — excellent
• Liver enzymes: ALT 24, AST 21, GGT 11 — all normal

Genova ION Panel March 2025:
• Whole blood mercury: 7.71 ug/L — HIGH above reference 4.35
• Omega-3 Index: 3.4% — critically low
• HVA (homovanillic acid — dopamine metabolite): 0.7 mmol/mol creatinine — LOW, range 1.2-5.3, confirming severely reduced dopamine turnover
• Mitochondrial impairment pattern across multiple markers
• Tryptophan lower range with elevated quinolinate — confirming tryptophan shunting toward inflammatory kynurenine pathway away from serotonin and melatonin
• Essential fatty acid insufficiency
• Alpha-hydroxybutyrate elevated — oxidative stress marker

Mitome Mitochondrial Function Test May 2025:
• Complex I: 34% of normal — severely impaired
• Complex II: 80% of normal — relatively preserved
• Complex II+III: 32% of normal — severely impaired
• Complex IV: 29% of normal — severely impaired
• Citrate Synthase: 279% — massively elevated compensatory mitochondrial mass expansion
• Pattern consistent with mycotoxin poisoning of electron transport chain

Vibrant Total Tox Burden Panel:
• Chaetoglosin A: 35.72 ng/g — above 95th percentile, confirming Chaetomium mycotoxin body burden
• Mercury: 4.08 ug/g — above reference 1.61 even after chelation
• Phthalates MEHHP: 45.53 and MEOHP: 48.00 — both above 95th percentile

Mold Inflammatory Markers March 2026 (same panel and reference ranges for both measurements):
• TGF-beta1: 8,563 pg/mL — range 344-2,380. Nearly 4x upper limit.
• MMP-9: 562 ng/mL — range 0-332. Significantly elevated.
• MSH: less than 8 pg/mL — range 35-81. Essentially undetectable.

Visual Contrast Sensitivity Test February 2026:
• POSITIVE. Biotoxin score 42%. 11 of 13 CIRS symptom clusters positive.
• Greater than 95% probability CIRS diagnosis.
• Mold-related illness and post-COVID syndrome flagged as causes.

2025-2026 — Age 30-31
Treatment initiated based on confirmed CIRS diagnosis.

Cholestyramine binder protocol initiated April 2026 — 4 times daily with fat-containing meals as primary CIRS mycotoxin clearance treatment.

Mold Inflammatory Markers June 2026 — updated on same panel:
• TGF-beta1: 6,209 pg/mL — down from 8,563, 27.5% reduction confirming cholestyramine working
• MMP-9: 752 ng/mL — up from 562, rising despite TGF-beta1 falling. Primary current concern.
• MSH: less than 8 pg/mL — unchanged. Still essentially undetectable after 6 months of treatment.

MyMycoLab Mycotoxin IgG and IgE Antibody Panel June 2026: will include.

Now I've been on treatment for this and have been doing binders since May and if it was causing my symptoms I should have felt some relief at this point ? But I haven't felt much at all so I am not sure if I'm chasing the right thing that  contributes to my symptoms at this point.

CURRENT TREATMENT PROTOCOL

Binders:
• Cholestyramine 4g four times daily with meals — primary CIRS binder

Antifungal and Anti-inflammatory:
• Itraconazole 100mg twice daily with fat-containing meals

Nasal - Beg spray

Probiotics:
• MegaSpore Biotic once daily

Sleep:
• Low Dose Naltrexone — currently 1mg nightly, titrating toward 4.5mg
• Quviviq (daridorexant) 25mg nightly
• Magnesium Glycinate 400mg at bedtime
• Liquid melatonin 0.5-1mg sublingual at bedtime

Mitochondrial Support:
• CoQ10 Ubiquinol 400mg daily

Nutrient Repletion:
• Vitamin D3 10,000 IU with K2 200mcg daily
• Omega-3 Fish Oil 4g EPA/DHA daily
• NAC 600mg twice daily
• Phosphatidylcholine 900mg twice daily

Lifestyle:
• sauna 2 sessions weekly
• Resistance training 3 times weekly moderate intensity

Home HERTSMI-2 test -9

u/Own_Ad_3795 — 1 day ago
▲ 1 r/CIRS

Advice Needed

Hi Everyone,

I have been taking CSM for about a little over a month along with other supplements. Here is the full list: Famotidine, Milk Thistle, SPM Active, NAC, and Levocetirizine dihydrochloride. I also do a mutli vitamin.

Things were feeling better. I felt 80% like myself, but I was away one weekend and forgot to take my meds/supplements and powder for two days and now I feel like crap again and it's been ongoing even with me taking my meds. Any advice on what I can do to get back to feeling better?

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u/lovehershee — 1 day ago
▲ 2 r/CIRS

Need a Roommate

Hey, I am looking for someone who is renting out a room in their residence and has already completed all the necessary mold and toxins testing on the places. Does anyone know someone who needs a roommate and/or any reliable websites I can search? Appreciate any info.

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u/Correct-Shoe-2950 — 1 day ago
▲ 2 r/CIRS

Share your worst symptoms/try to put neurological symptoms in words

Hey yall. I find that most of my symptoms make me feel like I'm literally dying. My neuro symptoms are so scary. Yet, to outsiders/friends/family, I look fine and healthy and can walk. I have had someone say to me "a lot of people live in pain!" Yet I find this so demeaning, as CIRS symptoms are inhumane and literally indescribable. They make me wanna gauge my eyes out with a knife most days. They're not normal "pains" that you can just push through. Can you all please explain how you feel with CIRS??? What do your symptoms feel like? On your worst days. Just so I can show my people how bad this is for reference <3

Sending you all so much love 💙

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u/moldycallie — 22 hours ago
▲ 4 r/CIRS

Breathing problems???

Anyone else have a lot of breathing problems from Cirs? I’ve heard lots of long covid patients have it and my spike protein levels are at 1411 but from my understanding Cirs can cause the exact same symptoms as long covid because both are dysautonomia and inflammation… thoughts???

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▲ 3 r/CIRS

Has anyone ever tried taking peptides? Comments about it?

My gut is extremely messed up and I have undetectable MSH and Tgfb1 higher then 5000. I have abdominal pain and cramps all day long as well as itching and food intolerance. My functional doctor has recommended taking KPV and BPC peptides. Does anyone have any experience with peptides? Do they help? They’re expensive and I’m trying to understand if they can be effective for my condition.

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u/Hot-Insurance6272 — 2 days ago
▲ 2 r/CIRS+1 crossposts

Pls help me for my 6 yo sister ! I need advice pls !!

My little sister has been having flare-ups of joint pain in her legs for a few months; I kept thinking it would pass... But this morning, she said her "lungs" hurt—she was touching the area in the middle of her belly, right below her ribcage.

She went out to the park, and when she came back, she was holding that area and in terrible pain; she rated the pain a 20/10.

She said she almost threw up, and she pointed to the horizontal area right below her heart—spanning the whole width—as well as the top of her sternum. I checked, and her heart rate was 95 bpm when she got back.

She's only 6 years old; I don't know what to do and I'm really stressed. My mom says we don't need help. Could this be caused by the mold too? I'm lost and have brain fog—please give me some advice.

Does that have nothing to do with the mold?

Im ill since 1 year with 30+ symptoms

Should I take her to the ER anyway?

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u/No-Independent-599 — 2 days ago
▲ 2 r/CIRS

Starting to worry that its CFS

I’ve been out of mold and on binders for 3 months. I feel worse. The fatigue is unbearable. I’m really worried I have cfs. My genie is pretty much normal.

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u/yllekarle — 3 days ago
▲ 8 r/CIRS

Moldco rejected me!

I just filled out there online questionnaire and was so excited to get continuing care, as my NP I work with changed practices. And they said I wasn't a fit. I think it's because I entered too many other conditions. Has this happened to anyone else? Is there any recourse? Thank you!

reddit.com
u/snarkyopolis — 3 days ago
▲ 0 r/CIRS

Flukes in stool

Been passing these… many white ones with a black tip.

Sesame seed looking ones too.

Parasite test (Hoffman) negative

Anyone treated for flukes?

u/Boring_Guard_3882 — 3 days ago
▲ 5 r/CIRS

what do i do now

so when you’ve moved multiple times, lost everything, your fiance is fed up, you don’t even get to see your kids anymore, you don’t have a house and you have a dead end job and CIRS and nothing left to give.

what do you do?

like how do you actually even move forward or do you just accept the reality of disability, homelessness, the loss of your family and death?

reddit.com
u/No-Sign2456 — 4 days ago
▲ 14 r/CIRS

If so much of CIRS is bacterial driven, why is strengthening the gut not seen as a big priority?

With more and more research coming out that CIRS is just as much bacterial colonization (skin/nares) issue as it is a mold & fungal issue, why is balancing the microbiome not seen as a crucial step for recovery?

The gut-skin axis and gut-nasal axis are proven phenomenon and I think it would do us all good to add in heavy microbiome replenishment support on top of other recommendations.

So much of the shoemaker protocol seems to just straight bomb the microbiome of gut, skin and nose.

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u/Big-Dreams-Gangster — 5 days ago
▲ 1 r/CIRS

MCAS and xoliar

Does anyone have severe MCAS? I’m talking anaphylaxis daily. Have you tried xoliar at all? Antihistamines are not helping much anymore. I’m only on very little tube feeds with constant reactions and severe malnutrition. I can’t afford to move and I can’t really detox since I can hardly have a bowel movement every two weeks so please don’t suggest that.

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u/illiacmae — 4 days ago
▲ 5 r/CIRS

Binder Adjustment Period

Can people please share their adjustment success stories to CSM/Welchol? I am six days in on just one tablet of colesevelam a day and am feeling pretty inflamed (flushed, muscle aches, headaches). Do you eventually adjust and stop having side effects? I keep hearing how great it will make me feel but so far I just feel worse! Thanks for any encouragement or advice!

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u/Livelaughlove1829 — 5 days ago
▲ 3 r/CIRS

Doctor finally listened now on cromolyn

I have been getting sick daily for weeks and finally got my immunologist to listen and we are now trying cromolyn yay only thing is I have to take it with milk

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u/submissivebrat20 — 4 days ago