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Mold Toxicity manifesting neurologically?

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Posted 10/12/2021 7:57 AM (GMT 0)
Hey all, new to the forum.

A bit about my story: In 2019 I lived in a water damaged building for about a year. While living there I developed symptoms like malaise, feelings of hopelessness, GI issues, weakness, stinging sensations all over body, cramping, among others. I was recovering from long-term side effects from medication at the time so I thought my strange symptoms were due to that, and didn’t really put two and two together and didn’t realize it was actually mold causing many of my issues.

I moved out in June 2020 and my symptoms went away within a month. Continued on with my life with no problems. I had occasional issues like joint pain, anxiety etc. which I now realize were mild symptoms of mold toxicity after living in the apartment.

Fast forward to June 2021, I unknowingly slept on a moldy mattress for a month and a half and it really messed me up- over the course of that time, I started getting muscle twitching on my left side, frequent infections, depression, sore throat etc. and ultimately had a flu-like episode where I had bad shortness of breath, fatigue to the point where I couldn’t climb a set of stairs, strange taste in mouth, severe weakness in my limbs, insane anxiety, depression, panic, vertigo, loss of balance, slurred speech, you name it. I also had a sort of numbing feeling on the left side of my body at first and then on both sides which makes me worry about MS.

Anyway, I’ve been in a clean environment with all new belongings for a bit over a month now, and my symptoms are as follows:

Weakness, especially in legs
Grip strength is brutally bad
Fatigue
Occasional depression
Occasional anxiety
Depersonalization/derealization
Mood swings - anger, irritability, fear, panic
Muscle twitching at times
Occasional numbness in different parts of the body, such as face, hands, feet etc.
Frequent urination- have to urinate within 15 minutes of drinking ANYTHING
Feels like I’m not emptying my bladder completely
Near constant feeling to take a dump (lol) even if I just went
Sore throat, feels like something is stuck in my throat
Blurred vision at times
Vertigo/loss of balance at times
Occasional clawing of my hands/fingers
Joint pain
Mast Cell Activation Syndrome
Occasional tics

I tested my urine for mycotoxins and had indeed elevated levels. Currently taking activated charcoal, NAC and s. boulardii. Plan is to see how I feel on these after 6 weeks and then possibly look into oral/sinus antifungal treatment.

Been a brutal experience honestly. And while I know mold (like Lyme) is a ”great imitator”, I’m worried that this may have triggered MS or other neuro degenerative conditions. I haven’t had the mental or physical energy to get to a neurologist even though I probably should. However from my research MS often progresses slowly, while I’ve gone from completely normal to really messed up within four months.

Does this sound like neurological symptoms of mold toxicity to you guys? I’m just taking it one day at a time to see how/if I improve. I just can’t get the fear of MS/ALS/Parkinson’s out of my head. Wondering if this is just mold toxicity/CIRS manifesting itself as symptoms of those conditions

Post Edited (xxaleksi) : 10/12/2021 2:31:36 AM (GMT-6)

Posted 10/12/2021 12:01 PM (GMT 0)
Doesn’t sound like als or Parkinson’s. The one sided numbess is weird and can happen in ms, but can happen in other things too and I don’t think it’s MS either. Do you have strange feeling across your abdomen like you’re being constricted or hugged? That’s one of the signs.

If you’re really nervous I’d see a neurologist to rule it out for peace of mind. That’s one disease they can usually rule out with an mri pretty easily. I’d also get a nerve conduction study because of that weakness in the legs and grip strength problem. Have you seen a neuro?

All of that being said, it sounds like some mishmash of symptoms due to CIRS/lyme/mold/autoimmine/inflammation. The symptoms are all too vague in all of these diseases to just look at a symptom list and say it’s this or that, but your story makes it sound like it’s mold related

Post Edited (dcd2103) : 10/12/2021 9:17:36 AM (GMT-6)

Posted 10/12/2021 1:00 PM (GMT 0)
xxaleksi- I have and have had some of the symptoms you list! The numbness on one side of face is bell's palsy. I have just recently found out i had MOLD exposure from office for 10 years, after 3 years ago testing positive from Igenix for Lyme and bart and babs and was treated for over 2 years for Lyme and many symptoms resolved but not the slurred speech and balance, that not only continued but worsened. I was then tested in Dec 2020 and positive for severe mold exposure in a daily environment that had air mold spores of over 75,000, however that was 11 months ago, I left the environment never returned. Although some symptoms have improved since taking binders and many other supplements, the slurred speech and balance have still worsened.

One thing Bailey on this forum just posted about made me start researching another real possibility, connective tissue related damage, possibly craniocervical instability. Before diagnoses for Lyme i was in a rear end car accident in Nov 2017 and had whiplash, a month later lost hearing in my left ear. Went to a chiro who diagnosed and began treatment for it and did not have slurred speech prior until a neck rotation caused it. Although it may not have actually caused it I could have already had connective tissue damage and it worsened from the whiplash and then neck rotation.

What I am now possibly researching is that the slurred speech and balance have been the first neuro symptoms and they have never resolved, progressively worsened and are still progressing. Connective tissue damage relating to craniocervical instability is a real possibility for me and caused by many things that I have an had an is progressive.

Post Edited (sdarrah) : 10/12/2021 7:18:12 AM (GMT-6)

Posted 10/12/2021 1:25 PM (GMT 0)

sdarrah said...
xxaleksi- I have and have had some of the symptoms you list! The numbness on one side of face is bell's palsy. I have just recently found out i had MOLD exposure from office for 10 years, after 3 years ago testing positive from Igenix for Lyme and bart and babs and was treated for over 2 years for Lyme and many symptoms resolved but not the slurred speech and balance, that not only continued but worsened. I was then tested in Dec 2020 and positive for severe mold exposure in a daily environment that had air mold spores of over 75,000, however that was 11 months ago, I left the environment never returned. Although some symptoms have improved since taking binders and many other supplements, the slurred speech and balance have still worsened.

One thing Bailey on this forum just posted about made me start researching another real possibility, connective tissue related damage, possibly craniocervical instability. Before diagnoses for Lyme i was in a rear end car accident in Nov 2017 and had whiplash, a month later lost hearing in my left ear. Went to a chiro who diagnosed and began treatment for it and did not have slurred speech prior until a neck rotation caused it. Although it may not have actually caused it I could have already had connective tissue damage and it worsened from the whiplash and then neck rotation.

What I am now possibly researching is that the slurred speech and balance have been the first neuro symptoms and they have never resolved, progressively worsened and are still progressing. Connective tissue damage relating to craniocervical instability is a real possibility for me and caused by many things that I have an had an is progressive.

Have you looked into prolotherapy for this? The place in Florida, Caring Medical I think, is where everyone goes for this issue
Posted 10/12/2021 1:53 PM (GMT 0)
DCD2103 -I have just barely heard this and though its a possibility I have to find out more before going down another possible rabbit hole and get false hope.
Posted 10/12/2021 3:09 PM (GMT 0)
I have mold illness and have experienced most of the symptoms you described at some time during my illness. I wouldn’t worry about MS, but you can get tested if it will ease your mind.

Which mycotoxins did you test positive for?

Can you do sauna? Coffee enemas? I have heard those are really good for mold.

Are you taking antifungals? If you don’t get any relief by the 6 month mark, I would recommend antifungals.

Are you doing anything for the MCAS? Zyrtec is helping me some. I also did well with AllerDHQ.
Posted 10/13/2021 1:25 AM (GMT 0)
Hello I am going through similar, took cholestyramine that is why it is worse now I think, much worse I'm afraid. Took a big dose (3g-4g?) not supposed to do that in a likely moldy place (very humid in the South) where mold is likely to reproduce more.

I am relying on dosing with CBD (I vaporize the herb) to quell symptoms, it effectly blocks the cytokines cascade/storm. It helps.

I took a Benadryl 25mg last night to sleep, it was okay, had nightmares though, and wouldn't recommend as I woke up confused. Hope you find some relief.
Posted 10/13/2021 1:39 AM (GMT 0)
Bb,

You in the South, too? I’m in SE GA. Where are you?
Posted 10/13/2021 5:27 AM (GMT 0)

WalkingbyFaith said...
I have mold illness and have experienced most of the symptoms you described at some time during my illness. I wouldn’t worry about MS, but you can get tested if it will ease your mind.

Which mycotoxins did you test positive for?

Can you do sauna? Coffee enemas? I have heard those are really good for mold.

Are you taking antifungals? If you don’t get any relief by the 6 month mark, I would recommend antifungals.

Are you doing anything for the MCAS? Zyrtec is helping me some. I also did well with AllerDHQ.


WBF,

Thanks for the support! The uncertainty is just awful. While I know mold can cause MS-like symptoms, and my symptoms appeared during heavy mold exposure, the doubt always creeps in my mind like ”what if it’s not mold mimicking MS, but actual MS?” which just worsens the anxiety. However, like I said, I don’t think MS would cause the intense anxiety, depression and nausea that I had at my worst. That seems to be more caused by the mold. Think I’ll definitely see a neuro in the near future though, just for peace of mind.

I tested severely elevated for trichothecenes, high in gliotoxin as well as minor elevations in ochratoxin and aflatoxin.

I’ve done a few coffee enemas before, two years ago. Saunas I still do a few times a week.

Thanks for the suggestion on antifungals. I’m going to see how I respond to binders alone and then give the antifungals a try if I feel like I’m not making enough progress. Not sure if I’ve colonized or not.

I’m not doing anything for MCAS at the moment. Great to hear those have helped you and I’ll keep those in mind!

I’m just a bit pissed at myself - I spent six months treating what I thought were remaining lingering side effects of medication (finasteride). Now it’s looking more and more like it was the underlying mold toxicity causing many of my issues the whole time. Probably had this for over a year now to some extent.
Posted 10/13/2021 5:34 AM (GMT 0)

dcd2103 said...
Doesn’t sound like als or Parkinson’s. The one sided numbess is weird and can happen in ms, but can happen in other things too and I don’t think it’s MS either. Do you have strange feeling across your abdomen like you’re being constricted or hugged? That’s one of the signs.

If you’re really nervous I’d see a neurologist to rule it out for peace of mind. That’s one disease they can usually rule out with an mri pretty easily. I’d also get a nerve conduction study because of that weakness in the legs and grip strength problem. Have you seen a neuro?

All of that being said, it sounds like some mishmash of symptoms due to CIRS/lyme/mold/autoimmine/inflammation. The symptoms are all too vague in all of these diseases to just look at a symptom list and say it’s this or that, but your story makes it sound like it’s mold related


Thanks for the reply!

No, I haven’t had that squeezing feeling you speak of. Nor have I had the Lhermitte’s sign which is also common in MS.

I haven’t seen a neuro yet. When I first got poisoned, I was in a weird drugged like state and wasn’t ”with it” enough to realize that perhaps I should go see one, so I didn’t. I think I’ll see one soon.
Posted 10/13/2021 12:15 PM (GMT 0)
xxaleksi,

I had high gliotoxin and zearalenone and lower ochratoxin (I think). I did not have the trichothecenes, thank God. High trichothecenes plus high gliotoxin - be thankful you’re alive. I sound like a broken record on here about mold, but it’s because I know and understand how devastating it can be and how much it mimics symptoms from Lyme/co.

Do you happen to know which mold the mattress had? If I read that right, you recovered quickly after moving, but did not recover after sleeping on the moldy mattress.

I initially said if you didn’t find relief by the 6 month mark to look at antifungals. I don’t know if I would wait 6 months. Use your judgement. Whatever you do, just make sure you test with an ERMI to make sure you don’t have current hidden exposure.

I’m also thinking about that mattress. I assume the mattress was removed from the premises, but every time someone laid on it, spores were released into the air. Are you still living in the place where the mattress was? If so, the whole place may need to be air and surface cleaned and the HVAC ducts cleaned.
Posted 10/13/2021 12:24 PM (GMT 0)
I don’t think I mentioned this in my other posts here, but TUDCA helped me a lot. It’s one of the precious few things that has ever significantly helped my symptoms for any period of time, particularly mold and chemical sensitivities and widespread numbness.

I was using TUDCA Plus from Microbe Formulas. They recently changed the formula and it now has less TUDCA and a different name. The company told me their professional line, called CellCore, kept the original formula. I believe the CellCore product is called TUDCA Advanced. The CellCore products have to be obtained through a practitioner. Ask your doc about it.

It’s expensive but worked better for me than common brands. I have also used Nutricost, but did not find that to work as well. It also tastes bad, while the expensive brand did not. Go figure. Still, Nutricost brand or others are worth trying if you can’t afford the other.
Posted 10/13/2021 2:15 PM (GMT 0)
WBF I am not sure how I get the new Cellcore Tudca advanced, I didnt realize they changed the ingredients and just recently got the new Tudca Complete. Just want to know for when I need to order again. Do I need a prescription now?
Posted 10/13/2021 2:23 PM (GMT 0)

WalkingbyFaith said...
xxaleksi,

I had high gliotoxin and zearalenone and lower ochratoxin (I think). I did not have the trichothecenes, thank God. High trichothecenes plus high gliotoxin - be thankful you’re alive. I sound like a broken record on here about mold, but it’s because I know and understand how devastating it can be and how much it mimics symptoms from Lyme/co.

Do you happen to know which mold the mattress had? If I read that right, you recovered quickly after moving, but did not recover after sleeping on the moldy mattress.

I initially said if you didn’t find relief by the 6 month mark to look at antifungals. I don’t know if I would wait 6 months. Use your judgement. Whatever you do, just make sure you test with an ERMI to make sure you don’t have current hidden exposure.

I’m also thinking about that mattress. I assume the mattress was removed from the premises, but every time someone laid on it, spores were released into the air. Are you still living in the place where the mattress was? If so, the whole place may need to be air and surface cleaned and the HVAC ducts cleaned.


Hey,

Yeah, I’m definitely thankful to be alive - at my worst I legitimately felt like I was dying, nausea all day, stomach cramps, anxiety, couldn’t walk straight, it was horrible. And yeah trichothecene is apparently the worst mycotoxin out there.

Yes, after I originally moved from the moldy apartment, I recovered within a month or so. Although looking back, I definitely had some mild symptoms of mold toxicity even back then, mainly anxiety and joint pain which I didn’t have before my first mold exposure. Just wasn’t aware back then that mold symptoms could continue after moving out or that ”mold toxicity” was even a thing. And no, I’m not sure what mold was on the mattress.

I got rid of the mattress after I realized it was causing my issues. The shortness of breath and palpitations mostly went away after getting rid of the mattress, but my other symptoms kept getting worse so I eventually moved to a new apartment with all new belongings.

Thanks for the suggestions. It’s been awful but I have hope. At least I can run again. Two months ago I could barely get out of bed. Hopefully I’ll be able to get back in the gym soon. What’s crazy is that I’m only 21 and worked out 5 times a week and ran twice a week just four months ago!! Mold can definitely mess you up.
Posted 10/13/2021 4:47 PM (GMT 0)

WalkingByFaith said...
Bb,

You in the South, too? I’m in SE GA. Where are you?

South Florida, lots of hurricane, flood damage, and swampy, I don't see how there wouldn't be lots of mold too...
Posted 10/14/2021 8:58 PM (GMT 0)
WBF - You had posted this:

I was using TUDCA Plus from Microbe Formulas. They recently changed the formula and it now has less TUDCA and a different name. The company told me their professional line, called CellCore, kept the original formula. I believe the CellCore product is called TUDCA Advanced. The CellCore products have to be obtained through a practitioner. Ask your doc about it.

Just an FYI You can order it at https://www.digestivewarrior.com/
Posted 10/15/2021 2:00 AM (GMT 0)

sdarrah said...
WBF I am not sure how I get the new Cellcore Tudca advanced, I didnt realize they changed the ingredients and just recently got the new Tudca Complete. Just want to know for when I need to order again. Do I need a prescription now?

It’s not a Rx. The CellCore line is only sold to practitioners, not directly to the patients. Your practitioner probably already has an account or can get one, so just ask your practitioner.
Posted 8/14/2022 4:17 AM (GMT 0)
Look into using biocidin. It has helped me a lot! I take it and binders
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