Financial Update
In 2023, we raised around $18,000 from very generous people like you, which has been used for doctors visits and prescriptions not covered by insurance, supplements, alternative therapies, and food. Connor continues to need to cook almost every meal and follow a very specific, restricted diet which costs approximately $200 or more per week. For example, Connor has to drink one of two brands of naturally alkaline Spring water which costs $10.99/case and he goes through 4-5 cases just to attempt to maintain proper hydration (which still proves to be difficult). Every food product he buys is either organic or bought from a health food store and is much more expensive than regular food products. Other examples include $21/week for the only brand of yogurt he can have or $32/week for the only brand of chips he can eat. While Connor received some SNAP help from the State periodically, it only came three times for 3 months at a time and typically only helped with about one week of his food.
With all of that said, we have tried to be very careful in spending from his medical fund account the last two years and have around $5,000 still remaining. Nevertheless, we are back to ask for your help again, and this time, with even more urgency.
Health Update
Since the last fundraising we did for Connor, there have been several new developments in his condition. He was originally diagnosed with Chronic Lyme disease and was working with one of the top Lyme Literate Medical Doctors in the country. However, Connor could not tolerate any of the medications, supplements, or even fillers in the meds and supplements he was prescribed, so he and his doctors suspected mast cell disorders or Mast Cell Activation Syndrome. MCAS, among many other chronic multisystem illnesses, can be caused by infections such as Lyme. Treatment for Chronic Lyme halted and we began working with one of the only MCAS specialists in the state of Indiana, but to no avail. Much of the same problems remained, as he could not tolerate the prescribed medications and many of his mast cell symptoms only worsened.
As time went on, we continued to research and contemplate our next steps before being overwhelmingly led by the Lyme community to the possibility of biotoxin/mycotoxin illness. We then found an amazing doctor in Indiana who specializes in both Lyme and biotoxin/mycotoxin illness. After our visit and lots of testing, his doctor highly suspected the latter. While Lyme Disease could still be at play, it cannot be treated until mycotoxin illness is addressed first, because it prevents treatments of other conditions.
There are also several other chronic multisystem illnesses which are suspected in Connor’s case such as Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, MCAS, MCS (Multiple Chemical Sensitivities), Fibromyalgia, etc. but they often all have one common underlying cause: mold, mycotoxins, biotoxins and outdoor super toxins. But one may ask, why is only Connor and patients like him harmed by these toxins?
Isn’t mold everywhere in our environment?
Yes, mold is everywhere in our environment, but not all mold is bad and while exposure to toxic mold can be harmful to everyone, not everyone is affected by it. In fact, mold specialists believe the majority of people have genetics which protect them from damage caused by toxic mold, mycotoxins and biotoxins. However, there is a small percentage of people who cannot be in even small amounts of exposure without experiencing severe symptoms, illnesses, and in some cases, death.
Can’t he just leave his current home?
It’s a common misconception that a severely mold-sick person can simply remediate their home or just leave it and become healthy again. Most remediation companies do not properly remediate mold by sealing off problematic areas with the appropriate barriers and discarding mold-contaminated materials in a safe manner. Furthermore, small traces of mycotoxins and mold spores can be left behind, making it enough for the individual to remain severely ill.
Indoor toxic mold is much more common than some think. As of 2017, at least 45 million buildings in the U.S. contain unhealthy levels of mold. This doesn’t take into consideration small traces of indoor toxic mold which can make immune system injured individuals, like Connor, extremely ill. Factors such as poor building materials, building practices, and water events play major factors in a building’s toxic load.
Additionally, there are outdoor toxins known as super toxins, which happen when toxic mold in the environment and chemicals mix. A majority of the U.S. is riddled with these toxins, especially in highly populated areas. These areas are harmful to immune system injured individuals like Connor. He has lived in 4 states and in 8 different residential buildings since moving out of Illinois the first time and was sick in all of those areas. This suggests not only that he may react to indoor toxins, but also outdoor toxins.
So, what’s the treatment?
There are many methods of detox treatments, prescription anti-fungals, and alternative therapies such as IV therapies and Ozone Therapy. However, in our research, we found a protocol called mold avoidance which has been very effective for many people with severe mold illness and Lyme Disease like Connor. It prioritizes clean air and environment as the key to recovering health, which then allows other treatments and therapies to work later on. Erik Johnson, a former army biowarfare specialist, who also had severe mold illness, developed this protocol based on his military experience. This is outlined in his book, “Back from the Edge” and his student Lisa Petrison’s books “A Beginner’s Guide to Mold Avoidance” and “Erik on Avoidance.” We feel this will be a very beneficial approach for Connor as the foundation of his recovery, as it has helped thousands of people with this illness.
Therefore, the first thing which needs to happen is moving Connor back out West. The further West one goes, there are more regions and locations where the climates can be drier, less humid, and the air is much cleaner. Our plan is for Connor to explore areas out West where he may feel better and where other experienced mold avoiders have found healing. For anyone needing to heal from mold or any other form of toxic exposure, they first need to get away from it so that healing can begin.
Why fundraise so much money?
Treatments for any chronic multisystem illness not found under the traditional medicine and insurance coverage umbrellas are very expensive, as they are mostly treated out of pocket. While mold illness isn’t a new phenomenon, the realization of its negative health effects and impacts are a more recent development. Like the other chronic multisystem illnesses Connor is suspected to be dealing with, severe mold illness is under-researched and often goes missed by conventional medicine.
Connor has been doing very limited remote freelance contract work as his body will allow, but the continued severe chronic pain, neurological symptoms, time consuming dietary needs, sleep disorders, and many other health obstacles, all prevent anything sustainable. His current work only amounts to about 10 hours per week and hardly makes a dent for Connor financially. However, he has opportunity to grow his work load as he becomes healthier over time.
In addition to medical expenses, living expenses, and the more expensive food and water as mentioned earlier, there are bigger purchases we will have to consider once Connor begins and continues mold avoidance for an unknown period of time. While all of these are not yet 100% certain, they are just some of the decisions which may need to be made throughout the complex process:
Temporary hotel living during initial detox, until a more permanently clean environment and living situation can be found.
Potentially getting a Casita, ATC, or LIV RV trailer where Connor has the flexibility to move around to locations which may feel better to him over time. These 3 brands are specifically built with mold-resistant materials and have been found the most successful for mold avoiders.
Trading his current car in for a cleaner vehicle without toxic exposure, possibly a truck to pull the aforementioned RV.
If conventional living (home or apartment) can be found, rent payments while he is healing and the equipment needed to keep the home toxic mold free.
We have a clear plan of action, but the predicted costs are a huge barrier to even being able to begin. Just as it has taken years for Connor’s health to deteriorate to this point, we know it could take a long time for him to see the healing he needs as well. The more we raise, the easier it will make this complex journey Connor is about to embark on.
Final Outlook
Connor’s health issues have taken so much from him; his career, his social life, relationships, almost all foods, and so much more. While Connor is ill and in need of urgent help, he remains determined to keep fighting with the aspiration of healing and helping others who are in a similar situation. We wholeheartedly believe this approach is what will bring healing to Connor and allow him to get his life back, even though it may look different than before. We do not take for granted the love and support which has already been shown by our communities, and we continue to be unbelievably grateful for your extended generosity!
Other Ways to Give:
For those in Pana and surrounding areas who do not wish to give via GoFundMe, there is an account set up at People’s Bank & Trust called “Connor’s Medical Fund.” You may also give cash or check to one of Connor’s parents or brothers, or request one of our Venmo accounts, where we can make sure the funds go where they need to go.
Resources:
Organizer and beneficiary
Connor Trexler
Beneficiary