Desperately looking for answers. Any help would be appreciated.

Thinking more about this if I were you I would seriously consider getting some OSR even without any more mercury testing. OSR chelates not only mercury but multiple other heavy metals and its also a powerful antioxidant which is able to penetrate the blood brain barrier.

Antioxidants that cross the BBB are very rare, so even if its not heavy metals you are dealing with its very possible OSR will benefit you. Its also the only true heavy metal chelator that crosses the BBB.

Consider it.

Irminix / NBMI / Emeramide / OSR

That is the closed Facebook group, I would join and get info on how to get hold of it.
Start out small, 3 - 5 mg (has to be mixed with fat/oil) and work your way up.

WalkingbyFaith said...
You said you had a small amount of trichothecene in 2014 but you were all negative in 2018. Did I get that right?

Any idea where you picked up the trichothecene? I believe that is from Stachybotrus, the mold that seems to be reputed as the most toxic and devastating.

Yes you have that correct. Not too sure where I picked it up from though. I played hockey my whole life so maybe from moldy equipment or a basement I frequented or something. I’m not too sure where it usually grows.

Brab8878 said...

Lapis_29 said...
Thinking more about this if I were you I would seriously consider getting some OSR even without any more mercury testing. OSR chelates not only mercury but multiple other heavy metals and its also a powerful antioxidant which is able to penetrate the blood brain barrier.

Antioxidants that cross the BBB are very rare, so even if its not heavy metals you are dealing with its very possible OSR will benefit you. Its also the only true heavy metal chelator that crosses the BBB.

Consider it.

Irminix / NBMI / Emeramide / OSR

That is the closed Facebook group, I would join and get info on how to get hold of it.
Start out small, 3 - 5 mg (has to be mixed with fat/oil) and work your way up.

Very interesting. Never heard of these. Will definitely look into. Thank you very much.

=========================

just to be clear - Irminix / NBMI / Emeramide / OSR - all refer to the same chemical. Its just different names for the same thing. Its a chelator that Boyd Haley developed and used to treat mercury poisoned gold miners in south america, and it worked great. Its now in the final phase for FDA approval but you can obtain it from certain sources now.

https://articles.mercola.com/sites/articles/archive/2019/03/10/treating-mercury-toxicity-with-emeramide.aspx

magoo2 said...
Ive done a hundreds things and two have helped the most-by far.
Find a biological dds with a cavitat scanner and get scans and clean out anything bad.
Find a doc who aggressively treats parasites-with meds! lots of meds

Great to know. Thanks. I’ll look into that.

acarined said...
Your post-exertional symptoms are more like CFS/ME.

Are you saying CFS/ME instead of lyme and co's?

Those are also symptoms of Lyme and co's. (often misdiagnosis)

....and something is causing the CFS/ME - which could be Lyme and co's....

something else to consider is getting an MRI of your brain specifically to look for iron levels. These will not show up on normal iron tests, you need an MRI.

Iron deposits in the brain are associated with the type of brain malfunctions you report here. there are iron chelators available also.

Just a few thoughts after reading these threads:

It sounds like autoimmune encephalitis which is a redundant term for what many types of infections of the body, nerves, brain cause... to name a few that overlap, are co-morbid (in medical parlance) or outright pretty much identical symptoms sometimes: CFS, Fibromyalgia, Neuroborreliosis, Borreliosis, Myalgic Encephalitis, Mycoplasma Pneumonia, Mycoplasma Fermentans, Toxoplasmosis...

ok well anyway you get the picture, I have a hypothesis that many of these symptomolgies are rooted in infectious diseases of one or another, or many....

WalkingByFaith's article suggestion is worth reading here:

https://www.survivingmold.com/community/mary-ackerley-the-brain-on-fire-the-role-of-toxic-mold-in-triggering-psychiatric-symptoms

I have similar symptoms as you, but also physical ones, the mental stamina, I take many exotic supplements to generate a few hours of mental energy and clarity (the nootropic oxiracetam and centrophenoxine which is a neuromodulator and choline source respectively, that work synergistically, and Taurine, and L-Theanine that I take with caffeine, but caffeine seems to make this "burning" feeling worse in my head after it wears off.)

I would also recommend trying Cholestyramine as that has/had been a game-changer. Also Taurine might clear out some things in your head, it helps me anyway.

So just to talk about 2 or 3 of your symptoms that are very familiar to me, and probably most on this board are:

1.low tolerance of frustration, yep I definitely have this, unlike I used to be
2. low tolerance for any stress, even very low stress, some also call this (you call it "irritability") others may call it emotional lability, or prone to hysterics (a medically-sexist term for women experiencing this), crying, or anger (I curse like a sailor often, didn't used to )

so these symptoms are on the long list of presentations for lyme n cos, tbd's, tbi's whatever you want to call it...you being very athletic might be keeping your body in decent shape, but this bug complex is wily and usually goes for the brain, nerves, myelin, eyes, scar tissue anyway, anaerobic tissue...

and last thought, yeah that black mold residue result could be troublesome, again Cholestyramine, try it, it may help (Sandoz) it's easy to get a prescription for, it is a broad-acting detoxer

Okay good luck to you, my supplements are wearing off lol

There is hope, it is manageable, tri-athletes have recovered and competed again.

borrelioburgdorferii said...
Just a few thoughts after reading these threads:

It sounds like autoimmune encephalitis which is a redundant term for what many types of infections of the body, nerves, brain cause... to name a few that overlap, are co-morbid (in medical parlance) or outright pretty much identical symptoms sometimes: CFS, Fibromyalgia, Neuroborreliosis, Borreliosis, Myalgic Encephalitis, Mycoplasma Pneumonia, Mycoplasma Fermentans, Toxoplasmosis...

ok well anyway you get the picture, I have a hypothesis that many of these symptomolgies are rooted in infectious diseases of one or another, or many....

WalkingByFaith's article suggestion is worth reading here:

https://www.survivingmold.com/community/mary-ackerley-the-brain-on-fire-the-role-of-toxic-mold-in-triggering-psychiatric-symptoms

I have similar symptoms as you, but also physical ones, the mental stamina, I take many exotic supplements to generate a few hours of mental energy and clarity (the nootropic oxiracetam and centrophenoxine which is a neuromodulator and choline source respectively, that work synergistically, and Taurine, and L-Theanine that I take with caffeine, but caffeine seems to make this "burning" feeling worse in my head after it wears off.)

I would also recommend trying Cholestyramine as that has/had been a game-changer. Also Taurine might clear out some things in your head, it helps me anyway.

So just to talk about 2 or 3 of your symptoms that are very familiar to me, and probably most on this board are:

1.low tolerance of frustration, yep I definitely have this, unlike I used to be
2. low tolerance for any stress, even very low stress, some also call this (you call it "irritability") others may call it emotional lability, or prone to hysterics (a medically-sexist term for women experiencing this), crying, or anger (I curse like a sailor often, didn't used to )

so these symptoms are on the long list of presentations for lyme n cos, tbd's, tbi's whatever you want to call it...you being very athletic might be keeping your body in decent shape, but this bug complex is wily and usually goes for the brain, nerves, myelin, eyes, scar tissue anyway, anaerobic tissue...

and last thought, yeah that black mold residue result could be troublesome, again Cholestyramine, try it, it may help (Sandoz) it's easy to get a prescription for, it is a broad-acting detoxer

Okay good luck to you, my supplements are wearing off lol

There is hope, it is manageable, tri-athletes have recovered and competed again.

Thanks so much for your lengthy response. Much appreciated. Glad to relate to other people with similar symptoms. Will keep all those suggestions in mind as I go forward.

The problem with my symptoms and trying to narrow it down is everyone I talk to says it could definitely be “x” and I don’t have many discernible symptoms that could distinguish mold, metals, Lyme, Bart etc.

I went to cutler group and based off my symptoms they said definitely sounds like mercury ( tested fine by my doc), a lot of people say mold ( I agree but tests have come back fine), Bartonella group I posted in said it could be that. Just tough to tell. I’ve tried treating them all ( as best as I’ve could due to sensitivity) and with no results.

k07 said...

Brab8878 said...

WalkingbyFaith said...
Good morning! I just read the top post again. It definitely sounds like it’s a toxicity issue.

There’s another member here, Aerose91, who seems to have similar issues and trouble getting to the root cause.

Are you currently treating Lyme/coinfections with anything?

Regarding mold:
Sounds like you stay in your parents’ house most of the time and don’t go much of anywhere.

Have you done a recent ERMI or HERTSMI-2 test on the house? Sounds like a 2 story house. Did you do a separate test, as recommended, for each floor? Does the house have a basement or dirt crawlspace?

During what period of time did you take Cholestyramine? For how long? Were you taking abx during or after that time? Were you able to tolerate full doses of cholestyramine? Did it make you feel worse while taking it? Was it regular Rx or custom compounded without the fillers?

Are you familiar with the paradigmchange.me group - Lisa Petrison and Erik Johnson - Extreme Mold Avoiders? Just curious if you identify with those folks and their symptom presentations. They tend to have similar severe brain effects and exercise intolerance like you described. Was wondering if you’d had any discussions with those folks and what ideas they may have had for you. I have read some of their articles and group discussions. They are a very educated and intelligent group.

Have you consulted with Neil Nathan, Dr Ackerley, Dr Shoemaker, or anyone like that? If so, what did they think about all this?

Finally, if you are willing, can you tell something about how and when you first got sick - the initial onset of symptoms and illness? There may be some clues there.

I know. That’s a lot of questions, LOL!!! Respond if you like.

Haha happy to answer.

Recently tried carvacrol, ozone and IV vitamin C for Lyme. Carvacrol ended up putting me in a very bad spot and since I don’t recover from anything I’m still kinda stuck there. Ozone I had a tough time dealing with that but Dr. mentioned going to lower dose.

Personally I’ve written off mold as not the culprit but would be happy to be told I’m wrong.

The reason I feel that way is
1) all negative results on Real Time lab with Dr Nathan provocation protocol.
2) consistently gotten C3a and C4a levels right down the middle. Other MSH MMP9 were fine the time I checked them as well.
3) passed last few VCS test


I have tried cholysteramine. Had a tough time like a do with everything I take but I believe I pushed through it for a couple months. It was compounded and did make me feel worse ( but everything does so it’s tough to tell what the heck is going on)

Had ERMI test done and remediated basement. Have best air filter near my room. ERMI value was 1.6 ( level 3) before remediation. Highest was epicoccum nigrum.

Have a consult with Dr Nathan in a couple months. Excited for that.

It first started when I started a steroid inhaler about 13 years ago for asthma playing hockey. Just started getting obsessive thoughts and the left side of my brain just felt “off”. Has just gotten progressively worse since then.

I played hockey my whole life so always been curious if one of the hits threw something off. Never had an official concussion but research starting to show don’t necessarily need one to show some symptoms.

Thanks again for all your help and trying to get to the bottom of it. Will be sure to check out that paradigm group site.

Have you tried hbot? I know that is helpful with head injuries among other things.

In terms of testing, you could look into neuroquant mri. It’s a regular brain mri ran in particular sequence and then ran through neuroquant software (Cortechs labs). Maybe calling them can help you find someone local to help. I’ve had it done and the mri was pretty quick and no dye used. It may be helpful in showing a particular pattern found in lyme or mold. Also concussions, etc.

https://www.cortechslabs.com/products/neuroquant/

Great idea. I have read about the NeuroQuant and was considering it. Will definitely look into it. Any idea how much it would cost?

I have done HBOT. It helped a little while doing it but no real sustainable effects

Girlie said...
Are you saying CFS/ME instead of lyme and co's?

Those are also symptoms of Lyme and co's. (often misdiagnosis)

....and something is causing the CFS/ME - which could be Lyme and co's....

There have been biomarkers discovered in CFS/ME, namely red blood cell rigidity and a lack of cellular energy. They have constant fatigue that gets much worse with any form of exertion, and require varying levels of sensory deprivation to recover.

He could have a combination of infections, inflammation, impaired detox, and biochemical dysfunctions causing the post-exertional symptoms.

Brab: What are your free triodothyronine and thyroxine levels? This wouldn't be the cause of your symptoms, but optimizing the levels can be helpful for many conditions.

acarined said...

Girlie said...
Are you saying CFS/ME instead of lyme and co's?

Those are also symptoms of Lyme and co's. (often misdiagnosis)

....and something is causing the CFS/ME - which could be Lyme and co's....

There have been biomarkers discovered in CFS/ME, namely red blood cell rigidity and a lack of cellular energy. They have constant fatigue that gets much worse with any form of exertion, and require varying levels of sensory deprivation to recover.

He could have a combination of infections, inflammation, impaired detox, and biochemical dysfunctions causing the post-exertional symptoms.

Brab: What are your free triodothyronine and thyroxine levels? This wouldn't be the cause of your symptoms, but optimizing the levels can be helpful for many conditions.

Thanks. I’ve had them tested multiple times and they’ve always came up right in the middle so unfortunately no luck there