What Is CIRS? A Partial Diagnosis After a Lifetime Of Struggle, A Possible Breakthrough, And A Full Disclosure
But first: How a rooster came into my life
I had no intention of buying a rooster but when I saw the ad on Craigslist, it was a split second decision. It said he had been rejected by the three hens he lived with, “beaten up,” in fact.
So I called and said, “I’ll take him.”
I rummaged around for a box or bin, and drove off, in the rain, to some unheard of part of Connecticut. He was in a small cage on the porch, and his owner explained that he’d bought him in Pennsylvania to breed his hens with—he did this as a hobby, as had his father. “They hated him,” he said, about the three hens. “They attacked him, real bad.”
I gave him the $30 and the rooster was placed in a small wooden crate. When he showed me the three hens who rejected him, they were in a small coop, and apparently they survived New England winters there, with no heat. I think they were frustrated, sad, and stressed. And maybe they didn’t want to bring chicks into this world, so “hating” the rooster was a form of compassionate birth control. Or maybe none of this is true.
I got a heat lamp at Tractor Supply when I came home, I sat and held him under it for a good long while in my arms. He spoke to me, bock bock bock, and I spoke to him.
I gave him water and food, and a perch. He would have to stay in the house until something could be arranged. Lewis looked at him perplexed, but welcoming. I brought him onto my bed while I worked and he sat very patiently.
So what would his name be?
I wanted at first a Biblical name, so I settled on Rufus, which means “red.” But then I changed my mind. He’s from some kind of rooster bloodline in Pennsylvania, so maybe his name should reflect that, I thought.
I named him Pushkin.
I know what you’re thinking: If you get him a wife, will you name her Goncharova?
No! (For obvious reasons.) If he gets a wife she will not be his downfall.
Will I keep him?
At the moment, the idea is for Pushkin to be brought back into good health and good spirits, and then re-homed.
He spent the first night on one foot on the arm of a chair, and to my delight, he did not crow at dawn. I thought all roosters did that.
I let him out in the back yard and he smartly positioned himself between the lilac bushes and the house, (safe from predators) and started pecking in the dirt. I can affirm that Tractor Supply sells feed for chickens that is just awful.
He would not touch it—not even the stuff with dried meal worms in it. He was finding real food for himself, in the dirt. Good boy!
On the first night, as darkness fell, he walked into the house voluntarily, and has done the same thing each subsequent night. I drove to Mass. to buy a used dog crate, which was converted into a nighttime coop for him, with dirt, moss, pine shavings, perches, food and water. He does like to eat seeds, and he does eat the meal worms that are billed as 100% natural. I’m not going to feed him any of our worms, they’re just happy in their bin. Pushkin likes to roam the yard and peck and dig, more confident every day; He burrows his head into the ground, takes dust baths, and chases the birds and squirrels around when they approach their feeding spot.
When darkness falls, at the same moment the front light turns on, he saunters inside. He’s like a clock. He comes home at sundown, on the dot.
He sits with Doug for a while, listening to funny songs from the 1930s, and then eventually he is taken to his nighttime cage.
I’ve noticed that there is a slight anti-Rooster-ism going on, an echo of the anti-male campaigns of recent decades. Many chicken YouTubers excitedly explain that hens do not need roosters to lay eggs.
One YouTuber made a video pleading with people to “give roosters a chance.”
Roosters protect the whole flock. Very normal male behavior.
They warn with unique screams when predators are coming (and the hens listen to them and run for cover) and they are also, like most or perhaps all birds, proper gentlemen. They offer choice pieces of food for the hens, bring it to them, even. They never eat first.
But nobody wants roosters. Everybody wants hens—they want the eggs.
“If I found a home for him, tomorrow, would you want him to stay or go?” I asked Doug, last night. I knew exactly what Doug would answer:
”I’d let him go,” Doug said. “But I would be sad to see him go. He’s my friend.”
My Illness That Really Is An Illness
Changing the subject, sort of.
Something is wrong with me and I need to push past all the prohibitions against saying that, in the “health space.” It’s a very distinctive feeling inside my mind/neurotransmitters—a kind of Bermuda triangle I have always been afraid to admit to. But sick people are the healers. Really sick people are the best healers.
The health field is filled with grift and myth, as well as sound advice. But once your system has truly collapsed, it can take years and years to return to the the land of the living. I am not there yet, but I may be close.
For the record, I eat: no carbs, at all, no sugar, grains, dairy, alcohol, very good structured water—I find no pattern, between my saintly acts of dietary restrictions and a reduction in my symptoms. Except sometimes.
I wake up with swollen eyes, and tears, sometimes. Itching. I stumble, I have very poor balance. I thank God for the day but I feel like a dark, rubbery spirit is standing on my heart. Oh yes, I do rebuke it. I do everything, and then some.
Every moment of every day is a battle to feel “ok.” To think straight.
An example. My phone just rang. It was Enterprise wondering if I wanted the van. I didn’t remember that I had reserved one. I apologized profusely.
Let’s call it Syndrome X.
I’ve been working on it for at least 15 years and I have made progress. I beg beg beg everybody not to feel or think I need help with this. What I need is to tell you about it, since I have, I believe, relief in sight. Advice only throws me off course. I was advised 4 years ago not to take medicine that may have solved this then: Colestyramine.
So, at the risk of over-exposing, truth is I have been battling some kind of complex multi-factorial illness for many years, and tried every remedy treatment diet change detox etc under the sun, traveled to many states, fallen for countless energetic and homeopathic and detox based cures.
I never got to the Promised Land.
I just spent all money I ever came across, like a desperate gambler. I was diagnosed with, by turns: Major depression, C-PTSD, toxic overload, mineral imbalance, possibly mercury, CFS, Lyme disease, and I did all the things people do to transcend those things. Including all the anti-parasitics—yes.
(Except Rebecca will say I never chelated properly, and she may have a point. I insist that chelating properly (Cutler protocol) requires the support of a partner.)
In PTSD treatment the assumption is the damage was done in childhood. I had about 16 infusions of ketamine over a period of a few years, until it simply was not helping anymore. But I loved being under a dis-associative anesthetic for 45 minutes. That felt like relief. I was told my dendritic cells were little stubs, and ketamine could grow them to normal size. This is not untrue but it didn’t get me to the Promised Land. Back when I started I was incapacitated by whatever we may call it: Syndrome X. Everything was impossible, and confusing, disorienting.
It was my mind, not my body or my joints.
Lyme and one secondary infection similar to Lyme were diagnosed in 2020. I struck out on antibiotics (as I always do) but made some headway with methylene blue and red light therapy.
An assessment I got last spring revealed that I had no pituitary function, so I got tinctures for that. I stopped taking them due to the very thing that Syndrome X causes: Implosion of structures partly built, disintegration of intention and direction.
Always, always, always.
I think I may at last have an accurate diagnosis, what’s known as a “root cause.”
Last week I took and failed a vision test for CIRS. CIRS stands for Chronic Inflammatory Response Syndrome, and it comes from long term exposure to a water damaged building or home. If you fail the vision test—you have CIRS.
It used to rain into the living room and bedroom in my NYC apartment where I lived 25 years. No health practitioner asked about this, all these years, ever. I had the place tested and it came up very high for mold, and the building only took one superficial step to remediate and I gave up. I was responsible as caretaker for my father and stepmother so moving out of NYC was not an option. And Syndrome X makes it impossible to follow through with intended actions that could improve your situation. You can only take small actions, minute to minute, like a turtle.
Over the years…It was always the endless endless tinkering with detoxification, chelation, fasting, diet change, homeopathy, and so forth. (Twice I had intensely traumatic experiences with homeopaths and one of those two cost me over $4,000 and in the end he blamed me when I got so much worse I had to go to ER.)
See why I am so angry with “alternative medicine?”
One spends every penny on the next thing and the next thing, as despair grows. Something was wrong with my brain, my neurotransmitters, but it felt like “nobody believed me,” or understood me. So I got placed in diagnosis boxes I didn’t belong in. I had those things too (Lyme, C-PTSD. ADD, mercury) but nobody in all the years mentioned the CIRS vision test. As I was taking it, online, tears welled up. When it asked which way the lines in the box went, I couldn’t even see any lines. It’s not blindness, it’s CIRS. It’s like sabotage in your brain function and connected to your eyes, and frontal lobe (instructions.)
I’ll explain more another time.
One person on YouTube who speaks to this with incredible knowledge and compassion is Judy Cho—her channel is “Nutrition with Judy” on YouTube. I listen to her day and night.
Is there a path out? Yes, and I knew of it 4 years ago, but blew it off. I believe that mold is sentient, and gives you thoughts that will keep it alive. OR, you run into some besservisser who says, “oh, don’t take colestyramine. It’s toxic.”
I wish I didn’t let myself be so influenced by people.
I’m counting the hours until 4 pm today when I see a Ritchie Shoemaker approved MD on Zoom, because the symptoms are always seeming to get worse, no matter what I do. I eat no carbs, no sugar, no grains, no alcohol, I take ice baths, and so forth. CIRS doesn’t care. It’s a matter of mold toxins that entered the brain from years and years of exposure. Your mind is, for lack of a better word, profoundly fragmented, confused, non-linear. You can’t make plans, you can’t remember, you can’t be on an arc of life, going from point a to be to c. Small situations are incapacitating and overwhelming. You have come to distrust and even hate yourself, because you have no idea what your brain is going to do next. It’s really sad.
I can make sense of animals and plants and nothing else. When people talk I don’t understand them, mostly. When I detect insincerity, I become inconsolable. Miserable. My ears are hyper-developed because I can’t “see” the objects in the world and how they relate to one another.
Human speech requires de-coding. What is said vs. what is meant.
The syndrome expresses itself through impaired or broken relationships to objects—that’s just one aspect. It can feel like being dead inside a living body. Lately, the walking in circles resumed. I walked from room to room, trying to remember what I was looking for.
I stopped calling people because I can’t find my way to the surface of this brain fog. It’s such a struggle, to talk, at all. I have lost friends, except those that accept what I am saying: CIRS is real. Please don’t think I don’t love you because I forgot your birthday. I remember almost nothing, nor is anything forgotten due to meaning or lack of meaning. It all gets erased. You get pushed into a foggy inner landscape, pleading with your mind to connect thought with action, in loops that can repeat.
There are aberrations in human minds that don’t fit any of the labels, but we are on our own, as far as the world having any compassion.
A vaccine activist, a man, wrote me in all caps: “ARE YOU ALWAYS THIS MUCH OF AN AS**OLE?” He’d sent me digital files, books, documents, and I’d completely forgotten. One of my greatest dreads is anybody sending me anything. My brain erases “things.” A friend sent me a lovely Christmas gift and I “forgot,” I had received it. Until he asked about it. I’m terrified of gifts, and plans, and things I have to remember. Who can accept that somebody not diagnosed with Alzheimer’s is this spaced out and disassociated?
A CIRS practitioner, that’s who. Maybe this will become my life’s mission, to be a “translator” for CIRS people.
(CIRS doctor’s office just called. I didn’t send in my paperwork. Totally forgot.)
I think my brain has been inflamed since I was 4. Never ever did I understand school instructions, at the 9 schools I went to, always changing schools mid-semester, always terrified. What kind of eraser and what kind of pen and which book, was I supposed to have? It didn’t matter if they told me, I did not understand. I couldn’t take tests. I froze and started crying. They thought maybe I was smart and could skip a grade but I scored a zero because my neurotransmitters malfunctioned.
Decades later I found a document that showed my childhood apartment had asbestos and stachybotris. That explained a lot.
CIRS is like a dozen small pairs of scissors cutting off neurotransmitters that are trying to send the right bits of information to the right sphere of the brain at the right instant.
Eventually, you just retreat, from life, people, activities—it’s all insurmountable. And people who don’t have this believe that people like us are aloof, irresponsible, chronically late, bad with money, and worst of all, selfish. We are way way beyond what the earthling call “brain fog.” But we conceal it, by force of will, so the “forgetting” sins come across like personality defects.
Every single idea people have about people who struggle with time, for example, is wrong. It’s a frontal lobe issue, not a self-absorbtion issue.
In Spain, for three glorious months, I was not “late-shamed” even once. I was in heaven. In fact, I was above average punctual, within my new extended family! But I noticed nobody ever used the word “late” and nobody used it as a metric of human decency, as we do in the Calvinist/Anglican USA.
My daughter in law, before the wedding last summer in Spain, as we were planning, said: “People will be late.”
“For the ceremony?” I said.
This turned up in me was not disapproval, but rather, elation.
I love this place, I thought. I can be safe here. They’re just not interested in making people feel bad about themselves.
I wanted to stay forever.
More about CIRS and the Hidden Torments
Some of the symptoms of CIRS include:
Poor balance, disorientation, anxiety, foggy vision, confusion, apathy, emotional numbness, itchy eyes, swelling around eyes, (almost all the time) nasal congestion, stabbing pains in eyeballs, pressure in head, despondency, fatigue, low energy, poor digestion, insomnia, nightmares, fear of people, fear of shame, chronic shame, low self esteem, melancholia, OCD, poor word retrieval, inner disconnect.
The fear of people part I have noticed comes from not understanding what people mean. My inner ear can detect insincerity when people are merely being polite and this can lead to a crash.
Tom Cowan once said to me when I asked him what to do about “Lyme disease:”
”Never say the word again. Never say “I have Lyme disease.”
I didn’t, after that.
I wonder if he would let me say “CIRS,” though. Until such a time when I am ready to say: “I did the protocol and I am healed.” Then I won’t say CIRS.
“Microorganisms” do cause illness, but not in a strong host. Primarily in people who experienced the mortification of being assailed as small children. I now think mold caused all of it. If only we had grown up in Utah, not a moldy turn of the century building in Manhattan. If only if only.
To find a high likelihood of no mold one has to migrate to Montana, Utah, Colorado, Arizona or New Mexico. And sit there dead alone. That’s the part that scares me.
CIRS makes it impossible to think in a way that leads to good decisions—you can only think short term and even when you’re having an irrational impulse, you can’t stop yourself. Eventually the melancholia engulfs you.
Once when they tested my brain—4 years ago— and it all lit up red on top and the lobes were “down,” as in totally dead— not sending information to other parts of the brain my practitioner shook her head looking at my brain chart.
“You can’t do anything,” she exclaimed.
“That is exactly how I experience it.”
“You can’t write,” she said.
“Actually, for some reason, that I can do,” I said. But I left her office devastated, with packets of things I was supposed to take, but precisely because they were things, I bunged them into drawers and forgot I had them. One of them was chlorystyamine.
It took us several sessions before I learned how to find, purchase ticket for, and catch the correct bus to her office in NJ. She understood why and was kind and patient.
I can’t begin to tell you the devastations of travel, over the years, the extreme shame of all the trains, buses, and even flights, missed. Always I would break down sobbing, and even became acutely suicidal at times, in years past. That’s how bad this can be.
People hate you when you’re late, never mind when you miss a bus or train. Better never to make any plans.
Disassociating from virtually all objects—not understanding where to put things. Like the opposite of Martha Stewart or Marie Kon.
And “splitting,” which is when thoughts fail to stay intact. One thought is suddenly a flare of 10. What was I talking about? Oh yes! Now I remember…
The very fabric of a life breaks down.
Hoarders have a broken relationship to objects. (I’m not a hoarder. But I’m very bad with objects.) They have “trauma,” this we know. But they need to test them all for CIRS. Otherwise they will only fill up the house again when the cleaning angels have departed.
Do I need to get a PhD in orthomolecular, environmental psychiatry to decode what this is?
What was I looking for, on Craiglist, when suddenly I drove off to buy a rooster?
That’s what I mean by “splitting.”
I would like to become a spokesperson for this not at all understood spectrum- syndrome called CIRS, which affects and blights all your relationships, and everything you really ought to do, every day. I can defend such people, and help them out of this hell, if they will only stop spending money on misdiagnoses and “detoxes.”
You can see, (clinically,) you can, but you can’t register or remember or make meaning out of it all. Objects, bills, clocks. Emails.
People are cross with you, or downright furious, much of the time, and eventually, you may even lose your family. As I have. (But not forever.)
You need constant reminders that are external, like post it notes, because inside, it’s dense fog, covering perception and meaning. Nor do you remember something because it is “important.”
It was about two weeks ago, I saw that I had placed a pair if shoes in the bathtub. That really freaked me out.
I remember thinking: “Pick something up and put it away, where it belongs, even one thing.”
And then Håkan, a friend in Sweden, wrote and said that my letters to him seemed a little “osammanhängande” which was my rock bottom wake up call. That word means “not hanging together.”
I wanted to stay in denial but it was no longer possible.
Thoughts occur from no particular context, not emerging as a continuum of other thoughts. Some would call it ADD, and some would call it C-PTSD, some would call it depression. But that’s because until recently, nobody understood CIRS.
Well, now you know.
I’ve been concealing a “syndrome” that has grown worse with time.
At 4 pm today, I will at last be in contact with a Shoemaker trained CIRS specialist.
I’ll keep you posted.
Who knows if somebody else out there has this, and may be glad to see they’re not alone.
If I can crack this, I want to become a certified CIRS coach. 3 hours left now until my medical appointment. Blood will be drawn, and this whole thing will have a measurable reality, at last.
Pushkin is crowing outside in the sun. I’m going to go sit out there with him. But first, as I have written on my hand in a black Sharpie, “FORMS FOR DR. MITCHELL.”
I couldn’t even continue to read till the end because I just wanted to say I’ve been down this road. My whole family was sick with CIRS one child w Lyme was particularly effected by the mold. I too had a consultation w Dr. Shoemaker. Put him on speaker and have a scribe with you. He is terrifyingly intelligent and with brain fog, it’s hard to comprehend everything he says.
I’m happy to speak directly to you as a fellow sufferer. It was the hardest part of my life and happy to say we are healed. Forever changed and vigilant but much much healthier. Please let me know if I can help or support you in any way. The Lord’s blessing to you dear Celia for health and healing.
Me, too, Celia. But I am now nearly 100% healed. In my case, the traditional, establishment lab stool samples "missed" finding, gasp, 6 parasites, 2 worms + eggs, and candida - ALL living "on top" of the mold. Once my naturopath killed them off first (6 months) we then proceeded to kill the mold from below my neck (90 days). Done. We are now in the final weeks of treating my eyes, sinuses and brain. We are using Natacyn eye drops (much cheaper from Canada) and BEG compounded nasal spray. My vision and brain fog are now finally on the mend. Hugs and prayers to you, Celia, on this most difficult journey!