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Brain lesions from CIRS

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Posted 11/24/2021 1:48 PM (GMT -5)
Hi all,

I’ve been having mold toxicity/CIRS issues for over a year now. Unfortunately didn’t realize it was mold causing my issues until this past July, but like I said I’ve had mold issues for at least a year or more.

I did a mycotoxin urine test and sure enough i had high trichothecene and gliotoxin levels, as well as minor elevations in ochratoxin and aflatoxin.

I’ve been treating with binders for two months.

I had a brain MRI done due to my MS-like symptoms, and it showed two demyelinating lesions. I haven’t had a spinal MRI or a spinal tap done.

My MS-like symptoms include left side weakness, weakness in my legs/arms in general and slight bladder issues. I also have the other CIRS symptoms like anxiety, depression, light sensitivity, memory is shot, coughing, throat issues, DP/DR etc. Also MCAS.

This freaked me out obviously, but after doing some research I found out that Dr. Shoemaker in his book Mold Warriors states that some 45% of his mold patients have demyelinating lesions due to anti-myelin antibodies, and that this often (not always) normalizes with CIRS treatment.

Mold exposure definitely makes all of my ”MS” symptoms much worse, so there’s definitely a link there.

Has anyone had similar experiences? And how optimistic should I be about recovery, or should I try to accept that this could be permanent?

Thanks!

Post Edited (xxaleksi) : 11/24/2021 12:57:29 PM GMT

Posted 11/24/2021 2:00 PM (GMT -5)
From Mold Warriors:

” I was seeing lots of mold patients like Carol Anderson and a couple of her fellow victims from the Ritz-Carlton who had markedly abnormal MRI scans, high levels of antibodies to myelin basic protein (aMBP), and elevated MMP9. None had multiple sclerosis (MS), but their MRI scans had scars identical to those of MS patients. These findings were a sign that mold illness could kill nerves in the brain. There even were a few patients who the experts agreed had MS, who improved with biotoxin treatment, Actos and CSM. Actos knocked down the MMP9, TNF, PAI-1 and leptin; CSM knocked out the mold toxins and the MS symptoms cleared. But the scars, the plaques in their brains, called “unidentified bright objects (UBOs),” stayed.”
Posted 11/24/2021 3:54 PM (GMT -5)
“ My MS-like symptoms include left side weakness, weakness in my legs/arms in general and slight bladder issues. I also have the other CIRS symptoms like anxiety, depression, light sensitivity, memory is shot, coughing, throat issues, DP/DR etc. Also MCAS.“

Reading your symptoms - upper side weakness, anxiety, depression, memory issues, coughing, throat issues - I had all those - and all are gone or very much improved (except the short term memory)

I treated Babesia, Bartonella and Lyme.
Posted 11/24/2021 4:49 PM (GMT -5)
i dont know if Bart can cause visible lesions on an MRI - i suspect it can

it can certainly cause symptoms that mimic MS by small vessel disease restricting blood flow to the various areas of the brain and causing dysfunction in any part of it.

sore throats, muscle weakness, exercise intolerance, poor executive function, poor memory, light sensitivity, DP/DR etc. Also MCAS. are all typical bart symptoms.

there is a lot of overlap of symptoms with CIRS - so i would defo have that on your differential diagnosis list

esp if your mold urine tests results were only moderately raised ( 99% of those tested seem to have some level of raised mold toxins and we dont have any way of knowing which people its actually making ill )
Posted 11/24/2021 4:55 PM (GMT -5)
Just adding my MRI results here for reference.
I had an MRI and have Lyme and very likely Bart and possibly Babesia.
I didn't show any lesions. However, like Garzie said, I do think it's possible.
It did show a benign tumor but I don't know if it's related to these infections.
But who knows at this point.
Posted 11/25/2021 7:44 PM (GMT -5)
I had a Neuroquant MRI. There was nothing said about lesions. I did have an enlarged lateral ventricle, and something else. My Neuroquant score was 2 for mold and 1 for Lyme. CIRS was considered a 4 or higher.

Are you taking CSM or other binders?

Trichothecenes is really bad. Where were you being exposed? What about contamination of your possessions that were in that environment?

Have your symptoms improved any?

No. I would not give up. I would continue detoxing long term with various binders and doing sauna, if possible. Lion’s mane can help heal nerves. You can take it long term. Buhner also recommends Chinese senega root for that. I think Elk Mountain Herbs may have it. For lion’s mane, Buhner only recommended Beneficial Botanicals.

TUDCA was helpful for me for mold and chemical sensitivities and numbness. It’s good for MCAS, too.
Posted 11/26/2021 4:03 PM (GMT -5)

WalkingbyFaith said...
I had a Neuroquant MRI. There was nothing said about lesions. I did have an enlarged lateral ventricle, and something else. My Neuroquant score was 2 for mold and 1 for Lyme. CIRS was considered a 4 or higher.

Are you taking CSM or other binders?

Trichothecenes is really bad. Where were you being exposed? What about contamination of your possessions that were in that environment?

Have your symptoms improved any?

No. I would not give up. I would continue detoxing long term with various binders and doing sauna, if possible. Lion’s mane can help heal nerves. You can take it long term. Buhner also recommends Chinese senega root for that. I think Elk Mountain Herbs may have it. For lion’s mane, Buhner only recommended Beneficial Botanicals.

TUDCA was helpful for me for mold and chemical sensitivities and numbness. It’s good for MCAS, too.


Hey, thanks for the advice. That’s interesting about the NeuroQuant. According to Dr. Shoemaker, about 45% of mold patients he sees have brain lesions similar to MS due to anti myelin antibodies, and that they ”sometimes” go away after successful mold treatment. Let’s hope they go away for me too.

I’m currently taking activated charcoal, bentonite, NAC and S. Boulardii. Also high dose fish oil to lower MMP9, and resveratrol + carnitine to lower TGF-B1.

I was exposed to the trichothecenes in my old apartment. I definitely had symptoms back then but I had other health issues going on at the time so didn’t put two and two together unfortunately. I took my belongings to my new apartment as I was ignorant to the dangers of mold exposure.

Then this past summer I unknowingly slept on a moldy mattress for a month and a half, and that’s when my symptoms really went crazy. Basically went from relatively active with minor fatigue issues to bedridden in a month. I then discovered the link between my health issues and mold, got rid of everything I couldn’t clean and moved to a new apartment.

My symptoms have definitely improved, but it tends to fluctuate. I have a lot more energy now (although still much less than what I had pre-mold) and can work out again. And my anxiety/depression aren’t as bad. But I still have MS-like symptoms from the demyelination. I’m hoping they’ll eventually get better too as Dr. Shoemaker said he’s had many treatment successes in people with brain lesions caused by mold.

Thanks for the suggestion on Lion’s Mane. Just got me some today and started taking it.

Hope you’re doing well!
Posted 11/26/2021 8:29 PM (GMT -5)
I have no idea if I have demyelination or not. I can say that for me, personally, TUDCA helped my mold and chemical sensitivities way more than glutathione, NAC, or the multitude of different binders I used over the years. I never got to do sauna, but I have heard from doctors and fellow patients alike that sauna can be very helpful.

Of all the things I have done over the years, the following have been the most helpful symptom-wise:

- decontamination (washing my face and head or showering if I am having mold symptoms)
- identifying triggers (contaminated items or places) and removing them or removing myself from the location
-TUDCA (2-6 capsules a day)
- antifungals - herbals and Rx Nystatin and Fluconazole
- anti-parasitics (Ivermectin and especially Alinia)

Do you periodically repeat CIRS labs to see if treatment is working to normalize your lab markers?

Even during the times my lab markers returned to normal, my symptoms were horrible. I didn’t really get much relief from symptoms until I started TUDCA. It was a game changer for me. Unfortunately, I didn’t start TUDCA until 3.5 years after starting mold treatment. I suffered a lot during those years. I still suffer. TUDCA doesn’t help as much now as it did in the beginning. If I take something effective on my gut pathogens, like Alinia, I feel better and make a little progress. I am a tough case.

What symptoms do you have like MS? At my moldiest, I had balance problems, couldn’t walk a straight line heel to toe without falling over (still can’t), ran into door frames, hit my head on the car door and kitchen cabinet doors, banged glasses down on the table, swayed when standing still, nearly fell off curbs, and at times walked like a drunk. All that’s mostly gone except walking heel to toe, and if I close my eyes while bending over I nearly fall over.

Post Edited (WalkingbyFaith) : 11/26/2021 6:36:33 PM (GMT-7)

Posted 11/26/2021 8:42 PM (GMT -5)
In regards to demyelination, I have never been evaluated for that, but i used to be concerned about that because I had really bad chemical sensitivities for a long time. I was concerned that myelin had been destroyed. Nevertheless, I finally started getting relief from those horrible symptoms first with Rx antifungals and then TUDCA and now antiparasitics.
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