Mold remediation for tics - has this worked for anyone?

[Deb22]

Has anyone had success with eliminating or reducing tics after removing mold from the home?  Our daughter developed tics about 3 years ago and we are seeing a functional medicine pedi who identified thru bloodwork that her body is very sensitive to mold and she thinks the tics are a byproduct of the inflammation in the brain due to mold exposure.  Calls it CIRS - Chronic Inflammatory Response Syndrome.  We had our home tested for mold three times and mold levels were high in the air, but no major source of mold was found except that there is mold on our a/c system and the humidity level in our home is too high.  We live in the south - humid climate.  We are getting a completely new a/c HVAC system installed with a rem-halo cleaner.  However, she also recommends we have our home remediate by a mold remediation company.  We have talked to two.  First one said we could completely remediate her bedroom and remove carpets in the home.  2nd one said entire house needs to be done including removing the entire contents of our home while they wipe down and clean every hard surface.  We would need to get all new furniture, mattresses.  Basically anything that’s not a hard surface needs to go.  Total cost for this endeavor would be $30-40k which is mind boggling.  And no guarantees that this is going to fix the problem.  Has anyone been thru this and did it help?

[LNN]

My daughter has CIRS and yes, that can cause tics. In her case, the mold exposure was/is in the schools. We found three things helpful - improving the environment, treating a fungal infection in her sinuses (frequently accompanies an infection called MARCoNs) and helping the body detox. I could write a novel on all of this, so I'll only focus on the environment since that's what you asked about.

We did some basic cleaning up of our home (replaced carpets with hardwood, tossed lots of things from the basement, run a dehumidifier, got rid of house plants) but our ERMI test showed that the house wasn't the problem. And there wasn't much we could do about the schools. So we fought a long battle and eventually got the district to put IQ Air GC Multigas air filters in each of my daughter's classrooms. Her attendance went from a few hours a week to full time. So definitely consider this kind of filter - it's portable and most sellers give you a 60 day return policy if you find it doesn't help.

For your house, if the problem is with the AC, then it's likely that mold spores have been spread throughout the house. So it's not crazy that the 2nd company is suggesting such an intense approach. But...I'm wasn't born wealthy, so I can understand wanting a more realistic approach. The AC system obviously has to be fixed in a way that the problem doesn't come back. And I would definitely ditch carpets (even if it means having bare subfloors for a time) - make sure the carpets get rolled up into heavy mil plastic and removed out of the house through the closest windows, not carried through the rest of the house. Remediate what makes sense in the bedroom, and clean everything you can on your own in the rest of the house (window treatments, all clothes, wipe down everything you can with Benefect or EC3 cleaning supplies). Get the IQ Air filter for your daughter's room and maybe the family room. Consider mattress encasements and replace pillows. Make sure your washer doesn't have mold. Do the easy/cheap/obvious stuff yourself. Then between this level of remediation and detox, see how she feels. If the tics start to subside and she starts to feel better, you can chip away at the problem until she gets healthy.

If she doesn't recover fully, then keep looking for a mold source and consider more extreme measures. You can find helpful information here http://moldcontrolonabudget.com/  The site is run by May Dooley and she's super helpful. You may ultimately need to go full out, but nothing says you need to do it as a first step. Hope this helps.

 

 

[Deb22]

Thank you so much for your reply - you provided some very helpful information.  Greatly appreciated!

[Sheila]

Hi Deb22 -- and welcome to the Forums. I agree LNN had some great suggestions.

Just to let you know, we've received many reports on mold as a trigger for tics, as well as it causing other health issues plus behavior/emotional reactions.  We hope you will keep in touch, letting us know how you make out and what new insights you come across as well. Best of luck!

[Deb22]

That is good to know!  We have opted to move forward with mold remediation- found a more reasonably priced company - but it is still quite costly.  The only source of mold in our home that was found after having three different experts come try to identify the source was in our a/c HVAC system.  We are having the entire system replaced, then the remediation completed.  Daughter is on Cholestyramine for now per her dr.  I will share progress when we see it.  Thanks for your input!  It’s a lengthy process, but hoping and praying that it will be worth it in the long run!

[MLee]

Hi Deb22,

Did you have remediation and has it helped?

[Emmars26]

We are also looking at mold/CIRS as a major trigger for our 16 year  old.  Did a small home remodel in the boiler/storage area, husband found mold.  Within one week, daughter had sudden onset of tics. I will start another post about another trigger, but dr believes mold is part of her issues.   

[Deb22]

Wanted to post an update regarding ticcing and CIRS (Chronic Inflammatory Response Syndrome) due to prolonged mold exposure.  

We went ahead and hired a company to do mold remediation of our home August of 2020. It was an expensive, grueling process that seemed to never end, but finally it was done!  We replaced our entire HVAC system and installed a whole house dehumidifier as well as an air scrubber on our a/c to clean the air constantly.  The mold ended up being in our a/c ductwork and vents.  The worst spot was in our child’s room air duct where water condensation had been collecting and mold had been growing unbeknownst to us.  We have been seeing a functional medicine pediatrician who identified through genetic testing and additional blood work that our child has a gene defect that makes it difficult for her body to eliminate mold that is picked up in the environment. Basically the toxin gets in the body, but the body is not able to clean it out, which causes brain inflammation (encephalitis), which cause tics.  Child is on Cholestyramine to help eliminate the mold, multivitamin, Supergreens by Neurobiologix to help support the liver cleaning, high dose fish oil.  Also glutathione daily and takes digestive enzymes with meals. We also do a gluten free diet and try our best to avoid food dye.  Child seems to be doing better, though still has tics.  Though, I do think they have decreased significantly since mold remediation.  I’m glad we did the mold remediation - though it wasn’t a fun experience.     

 

I do notice that when our child is exposed to a moldy environment, tics definitely increase almost immediately.  This was seen while visiting an indoor water park that was completely enclosed.  Tics were exacerbated tremendously from occasional neck tick to full body tics and vocalizations. So, we know mold is a major trigger.  It’s been 8 months now since the remediation of our home and are still working on helping the body eliminate all the mold.  Dr has us do a VCS test (eye visual acuity test) every couple of months to gauge the extent that mold has been eliminated from body.  It’s taking a long time for the body to completely eliminate mold, but dr says that is to be expected as child was exposed for several years.  We keep persevering hoping the end result will be worth it.  It’s a challenge to not be exposed to mold in day to day living in the world.  We live in the south and many buildings were water damaged due to the unexpected freeze during the winter (lots of broken pipes in buildings). Our home was fine,but many homes and businesses had water leaks.  Also had to stop a diving program due to it being held in an indoor, humid, enclosed facility.  I feel like we are on the right track, however, it’s a long road to healing.  I also know that mold is not the only trigger - just a big one that needed to be addressed as we try to heal the brain.  Other things that are definite triggers are gluten, pollen, and food dyes.  We do pretty well avoiding gluten and this helps a lot.  Pollen has been high here in the south during springtime so have been keeping child in Claritin which is helpful.  We need to do better avoiding food dye - seems like it’s in everything, and just recently figured out that this was a trigger. 

 

That’s my update - curious to hear if any other families are dealing with mold as a trigger and what you have done to help heal the body from exposure? Thanks!

[Chemar]

Thanks so much for updating so thoroughly Deb.

Hoping for continued healing for your child.

I wanted to mention that we uncovered chlorine to be a major tic trigger for my son when we realized how much his tics ramped up after swimming (outdoor pool) - that, in addition to the mold, may also be what exacerbates your child's tics in the indoor swim/dive pools.

[Deb22]

That’s good to know and certainly may be a factor.  Constantly learning - Thanks so much for the info!

[Chemar]

You are welcome Deb.

Yes, it is a continuous learning curve to find the tic triggers and best ways to keep things stable - but oh so worth it!

 

[Emmars26]

We are currently treating for mold.  Beginning of that work for our family and daughter.  She primarily uses NAC as a binder, which also has some benefit for impulse/tics.  Not 100% sure yet which thing it is impacting yet...Also, looking into histamine and methylation.  

 

Almost to the nasal part of treatment.  

 

 

[MaryAW]

Two good books about mold detox are: Break The Mold: 5 Tools to Conquer Mold and Take Back Your Health by Dr. Jill Crista and Toxic by Dr. Neil Nathan. Both are on Amazon and have the protocols pretty well laid out in the book. Dr. Crista is holistic, while Dr. Nathan is integrative. We are just starting mold detox for our daughter now. Be sure to also read the MCAS chapter in Dr. Nathan's book.

[Sheila]

Thank you for posting both those books, MaryAW  I hope your mold detox goes well. 

Here are links for the two books on Amazon

Break the Mold  by Dr Jill Crista

Toxic  by Dr Meil Nathan

 

 

 

[Atex]

While I cant comment on mitigating TS from mold exposure, I am a building scientist and you would be surprised at how many homes have mold issues; even the new ones.  A lot of times it may be marginal levels of mold that might not affect most people, but I suspect will be a trigger for those who are sensitive.  Oversized HVAC systems promote condensation on the ductwork in the summer by short cycling, combined with poor duct layout, and it is SUPER common for HVAC contractors to improperly oversize a system.  For example, when I had my AC replaced, 3 out of 4 quotes included systems that were WAY oversized, because none of them actually ran the proper calculations, and maybe some wanted to sell more expensive systems.

As the OP has found, a whole house dehumidifier can really help control condensation by controlling interior RH independent from the AC system.  A whole house air scrubber can help too but you do have to be mindful of the effects of ingesting ionized particles (not really studied well).  Another consideration would be in-room HEPA filter systems.

Condensation can form in some really sneaky areas aside from marginal HVAC systems as well such as cold water plumbing pipes.

anyhow, just my 2 cents from the building's perspective

 

oh and if you havent already, seriously consider having your tap water tested and give some consideration to whats in it.  There are some really good mineralized RO filter systems out there.  

 

Edited May 17, 2022 by Atex