Mold and Biotoxin Illness

For years I rolled my eyes at the possibility I could be dealing with mold related illness. Even the word wasn't something I identified with. One of the first real Lyme practitioners I saw was a student of Klinghardt and when she initially brought it up I didn't even really listen. I thought it was as out there as EMFs and was a fear based diagnosis.

I just wanted to kill the "bugs" and move on.

And I did, mostly, but I never got better.

Fast forward a couple of years. I'm at 80%, living life and managing symptoms herbally. I have a terrible concussion and 3 months in I'm still not recovered. We realize Lyme has been reignited in my system.

Aggressive treatment. I move back in with my parents. Nearly 8 months there. I get somewhat better but still feel like I'm sliding sideways. What the heck?

Concussion number two happens in September, well that is frustrating. Symptoms come out in an even more aggressive way, and they're almost all neurological.

Two weeks after my concussion I flew down to see a famous Dr in New Orleans who does Hyerbaric Oxygen and focused on traumatic brain injury. I stay for two weeks. It makes me herx but I keep going. I stay on my antibiotic pulsing the whole time.

Long story short, I come home and feel worse. 5 days after I'm home I go to the ER with major dysautonomia. I feel falling sensations when I lay down, every nap, every night I try to go to bed.

I can't freaking figure it out. I call that old doctor I saw years back because she's a wonderful detective and she says, let's look at your mold again. This time I'm reluctant but I do it.

Blood tests start coming back in, mixed. Some say mold some say no.

Nasal Swab, boom. MaRCons. Interesting.

And then it hit me. Biotoxin illness comes from exposure to water damaged buildings. Oh my. New Orleans!!! Ugh! No wonder I got new symptoms after that trip.

Wild. Okay but I'm safe now. Right?

I do a Mycotoxin urine panel to see if I am shedding mold toxins. I'm peeing out Gliotoxins. What the....can be from black mold or candida. I don't have candida.

Okay now I'm worried. Do a mycotoxin ERMI sample last week. Wipe the surfaces in the house and bathrooms.

Off the charts. Literally says Do Not Enter for sensitive people. I had spent 8 'months trying to recover in a beautiful home with my beautiful parents.

A 110 year old farmhouse. A moldy one. They're freaking out.

I'm out, tonight is my first night out of it.

One more fascinating thing. The doctor ordered a NeuroQuant MRI. I did it Friday. Results today. According to shoemakers model I got an 8/10 on Biotoxin illness and 0/10 on Lyme. It doesn't count co infections.

Next step is binding, antibiotic nose spray, and I'm already on rifampin.

Thanks for reading. I have a feeling this has been holding me back from healing. I did the metal detox, I gave up sushi, I gave up gluten, I take antibiotics like tic tacs..... so why don't I get better?

Post Edited (tickcheckguy) : 11/29/2016 4:46:14 PM (GMT-7)

The mold thing is tricky. Hope it helps. My doc based it off TGF-beta 1 and an IgG mold panel. I'm still skeptical about the testing, but surprise surprise I had mold and bacterial contamination in my HVAC. So we'll see where this leads. To better days my friend!

Tickcheckguy,

Thank you for sharing your journey. I'm so sorry you had to endure all that you have but this is fascinating stuff. I hope you are able t heal now.

My son had LLMD appt today but doctor was sick. Now I'm glad because I want to go in with this new info.

What testing do we ask for? Our NY apartment has had water damage (apartment above us). I had a mold guy come out with Ghostbuster type equipment but he said 'normal' - I'm not buying it. I don't smell the mold though. On weekends (out of apt.) I feel instantly better.

My son's lyme was dormant and awakened by a concussion last January. Be careful!

My in-laws have a farmhouse over 100 years old and my son is sick the moment we walk in there - starts sneezing like crazy. I was thinking dust.

Well you may have just saved my son a lot of healing time - so thanks for that!

Huddie, let me round up the panels he needs. And you too!

Mold tester guys are BS. Air tests are not accurate.

The test you want is a wipe down of dust.

Molds don't smell.

And 50% of them we can't see.

What makes us sick is the spores that end up in dust we breathe.

Huddie, the World Health Organizations 2009 report on dampness and mold is a great resource. If there was water damage that is considered a reliable indicator of exposure as there are no good quantitative measures and observation of water damage has been one of the most consistent links to health problems in the literature. Even the dust samples have limitations. The ERMI is going to be the most sensitive quantitative test but it's more of a research tool than something meant for the public. In other words i don't think it's well established what the results indicate in regards to health effects and a lot of houses will probably turn a positive ERMI. Probably for a reason though... Nothings healthy these days...

Tick Check Guy, good call. I need to ask for an HLA test next time.

I used a shop in NJ called Mycometrics. I'm using them again and trust what they are doing.

https://www.mycometrics.com

I believe I spent $240 on the test.

I ordered a second one already.

I'm wondering if I should call and see if they will give our groups discount.

Order it and follow the instructions. You want ERMI not HERTSMI.

And thanks. Two weeks after my second concussion the doctor in New Orleans said if he hadn't seen my SPECT scan he would think I was lying about my symptoms. Ugh.

Sorry meant to say, the best first blood test is HLA DR. See if you're susceptible. I bet you are.

When you get the test back I'll help you read it. Took me a while to decode it but I saved a call to a doctor.

http://www.myhousemakesmesick.com/hlacalc/

Tickcheck,

Thanks. Will order test and see what happens.

Psil,

Thanks. I want to move but we can't. Manhattan is a fortune and moving is even more and just can't do it right now. Hopefully by spring. I guess it's like lyme, we can think we have it, but I sort of want real data to know what I'm dealing with. I cant' see any water damage but there have been leaks from the upstairs apartment. Several times a year they overflow their bathtub and I have to go get a pot, etc... i don't see black spots or water marks or anything like that.

Mister Mike

Thank you - especially about the part to not freak out! I'm freaking out. My son also has lyme and isn't growing. LLMD said it can be lyme or mold that impacts growth. The mold specialist wanted $850 before testing. I can't do one more expensive doctor. So you guys have really helped me out.

I know I'm allergic to mold- always have been. I smell things no one else does - musty carpet, etc...

This board it the best - thank you!

K07 my number wasn't very high. I want to say 1.5. But that alongside an ERMI score of 26 (literature says above 15 and do not enter!) was enough to give me a clue that this was for real. NeuroQuant results confirmed.

MisterMike thank you. I have a feeling it's Mold and Bartonella driven now. I was taking minocycline, ceftin and pulsing tindmax on weekends. I herxed hard at first but after a few months I could take the pills like tic tacs. They didn't make me feel anything at all! And gobs of buhner herbs. Never Bart specific. I busted bio films with serrapeptase for a while too. Maybe not enough.

I have done urine PCR Lyme panels and pulled Bartonella Bacilliformis (which I believe is understudied and underporeported, because according to google I would have to be in Peru to get it... and the symptoms are horrific and I never had anything like them.) and Erlichia.

I didn't believe it so I tested again, got Borellia Flagella and Bart B. again. I'm keeping these test companies in business it seems.

This is the first time in years I've had a clue about what direction to go in. Mold and Bart. Zith will kill Erlichia.

Luckily rifampin helps with Marcons anyways so these bugs get a two for one ticket to "not in my body anymore please" :)

Hitting my head the first time, challenging. Backcountry skiing and carrying a heavy pack. Hitting my head the second time? Getting into an uber. Not a hard hit. Inflammation just waiting to happen. Ugh.