PhD student fighting Biotoxins
My name is Paula, and until very recently I was a productive grad student and aspiring researcher. I wanted to do research integrating neuroscience, genetics, and psychology, since high school (about 10 years ago), and I started a PhD program in clinical psychology in August 2015 to do just that. It was amazing. I was part of a great laboratory in Indiana, and I have coauthored peer-reviewed publications. I was excited to truly be on the path to becoming an academic researcher. Here's my profile on Research Gate: https://www.researchgate.net/profile/Paula_Decrescenzo
I had just started to collect data for my thesis, which was focused on understanding one aspect of the biological stress response in psychopathology, when I got very sick in January 2016. Sick enough to go on a medical leave from grad school and put my doctoral goals on hold. I couldn't think clearly -- if at all -- or even walk straight, and what had been chronic back pain and headaches became excruciating. Lethargy, pain, and mind-fog overwhelmed me. So I took a medical leave of absence from my doctoral program to seek what I hoped would be a quick, simple diagnosis and effective treatment.
The diagnoses turned out to be neither quick nor simple. The short story: I have mold toxicity, compounded by pesticide poisoning, liver dysfunction, mitochondrial dysfunction, oxidative stress, and problems with protein synthesis. Recovery from mold toxicity, which is the most pressing issue, requires that I avoid all buildings and homes with any history of water damage, and adhere to a lengthy and costly treatment protocol. Consequently, I'm now sleeping in a tent, because I can't afford a mold-free home.
I have nothing left for medical treatment, living expenses -- even food -- or for a home that is safe for me. I can not work at the moment and no longer qualify for personal loans. I've considered going on disability, but that process usually takes 1 year, and I'm hoping to be recovered with no need for disability within 1 year. I'm hoping to be back in my doctoral program by August 2017 -- preferably sooner.
**update: it's now November, 2016, and I'm able to work part-time as a massage therapist. My family is in the process of partially remediating their home, so I will soon be out of the tent. But I still need to meet my funding goal to continue to afford the combination of food, treatment, and bills.
**update: may, 2017. Late stage Lyme disease has finally been diagnosed and I've started treatment for it!
**update: it's now April, 2017. My family's remediation didn't work. After a month there, I deteriorated, and I was unable to find anywhere to pitch a tent in the winter. One of my treatment providers is now kindly letting me live in her home, which is very low in mold.
In addition to CIRS/Biotoxin illness, I now have mast cell activation disorder, which means that my body is hyper-reactive to environmental stimuli, ranging from dust to bug bites to food. Mast cells, a type of immune cell, now release histamine throughout my body in response to stimuli that used to be fine. This is apparently a common complication of CIRS/Biotoxin illness, but it makes living even less comfortable and more expensive.
My family has gone through their entire savings, and have sold some artwork to try to set aside a fund for healthcare. But I'd like for that money to go to replenish their savings, for retirement, rather than for my health. Either way, the amount that they have generated isn't enough for my needs over the next year.**
My goal is to raise 25k to help with medical and living expenses over this year, including finding an indoor space as soon as possible that will not be detrimental to my health, while I get well enough to resume work and return to my doctoral program. My health and ability to do research mean everything to me. Funding for my fight against biotoxin illness will help me to get back to doing research to improve mental health outcomes.
I appreciate every donation! If you can't donate, please share this on Facebook, Twitter, and any other form of social media that you use. I need as much help as possible as I work towards regaining health and getting back on a path towards research productivity. I'm including more details on the causes of the illness and my situation below.
Chronic Inflammatory Response Syndrome (CIRS), also known as Biotoxin Illness, is my main health issue. CIRS occurs in people who have genetic patterns in a few specific immune system genes, who have also been exposed to mold toxins (mycotoxins) and other toxicogenic organisms in water-damaged buildings, Lyme disease, and from a few other organisms. I have these genetic patterns, have had 4 cases of Lyme disease, grew up in a home with non-remediated water damage from hurricane Floyd, and have lived in a state with an overgrowth of cyanobacteria, another pathogenic organism that can trigger CIRS in susceptible people.
Instead of tagging these biotoxins for removal, my immune system allows them to stay in my body and triggers systemic inflammation. The result is that the toxins have been recirculated throughout my body, and have caused a secondary inflammatory cascade. Additionally, my liver doesn't efficiently process other toxins, such as heavy metals, byproducts of many pharmaceutical compounds (which reduces current treatment options), and many other commonly used chemicals (perfume, paint, pesticides, cleaning supplies, etc).
Further, thanks to a few other genetic mutations, I have problems with methylation, a process necessary for protein synthesis and correct protein functioning, and with mitochondrial function, which is necessary for efficiently synthesizing and utilizing energy. This results in problems with protein synthesis and function, and problems with energy. Due to all of these issues and to mutations in genes responsible for preventing oxidative stress, it is likely that I have widespread cellular damage.
Gene therapy would be amazing, but we're not there yet for my specific conditions. I am lucky to have a functional medicine doctor who specializes in treating genetic abnormalities and chronic disease, including CIRS, but most of the costs of treatment are not covered by health insurance. So, costs have been accumulating quickly.
Although I've started to get better, the projected time to full recovery is one year. One critical part of recovery requires that I avoid buildings with any history of water damage -- even light mildew is bad for me right now. Without this avoidance, I will stay sick. Living in a tent is helpful, but going back to living inside a home would be ideal...tents are challenging to live in when it rains, and going inside even to cook for an hour causes a resurgence of symptoms, which makes it nearly impossibly to experience consistent improvement.
Please help me to get back to health an to my doctoral program as soon as possible! I'll keep everybody updated with progress.
My job provides an income sufficient to cover food and basic living expenses/bills, but there is still a huge gap that needs to be filled for me to continue to receive treatment. Right now, treatment is a bit over one thousand dollars a month, which is way above what I can afford.
Current treatment goals include improving my immune system's functionality, getting my immune system to stop its attack on my own cells, reducing inflammation, assisting with detoxification from residual mycotoxins and pesticides, and rebuilding damaged cell membranes.
Current diagnoses & treatment approaches:
1) Chronic Inflammatory Response Syndrome (CIRS): Patrician Kane Protocol for cell membrane damage; Shoemaker Protocol for CIRS; nutraceuticals; avoidance of mold
2) Pesticide Toxicity: Patrician Kane Protocol for cell membrane damage; nutraceuticals; avoidance of pesticides and other synthetic compounds in the environment and in food (all organic diet)
3) Mast Cell Activation Disorder (MACD) -- this one is new, and likely secondary to CIRS. MACD results in my body's mast cells, which are a type of immune cell, releasing excessive histamine in response to inhaled and ingested compounds. My doctor has said that once I'm fully recovered from the mold/pesticide toxicity, MACD will likely go away, so an ongoing focus on recovering from CIRS and pesticide toxicity is critical. Treatment for MACD is mainly palliative, via high doses of antihistamines.
4) Histamine intolerance -- possibly related to MACD. This results in my body going haywire when I eat food that contains high levels of histamine. I can either cut out all foods with high levels of histamine, which is just about impossible to do while staying on the diet I need to be on to rebuild cell membranes (due to the damage from mold & pesticide toxicity), or I can take certain medications/supplements when I eat histamine containing foods. This option allows for a wider range of foods, but it is also expensive.
I still need as much support as possible, and appreciate all donations and shares. I'm really looking forward to reaching a point at which I can stop asking for help, and go back to helping others, but I'm not there yet.
If anybody happens to be skilled in social media marketing or advertising, I'd also appreciate tips on how to get this GoFundMe to go viral. It would be awesome if this could reach an audience outside of my personal social network.
Legit online work is surprisingly hard to find for anybody who doesn't already have an established online presence and/or experience in marketing/SEO. I'm doing my best to break into the world of creative writing, as it can be done online, but that too is compounded by ongoing symptoms. One more month of pure healing -- without scrambling to find a job that won't lengthen recovery time -- would be amazing. I'm hoping to be able to work inside, find an outdoors job, or land a legit online job by early October, but I still really appreciate -- and need -- any and all help to get through the next month.
If you can't donate again, please share? My doctor is certain that I'll be able to resume grad school and a normal life. I still have a spot in a solid PhD program, so I'm still thinking that a professorship or career as an academic medical researcher is within reach in about 7 years. So: if you happen to know anybody who would consider giving a deferred payment loan to a promising student, I'd be entirely happy to pay it back once I'm at a healthier place in life. Once I resume grad school, I should be able to have a side-gig (possibly by working as a massage therapist), akin to the hobbies that many students, so extra income is possible even before I reach my long-term career goals.
On a positive note, a friend is planning to sell me her car because, due to water damage, my car is unsafe for me. She's willing to let me pay for it slowly, but it will still be more expensive than what I can afford (which right now is nothing, and my car isn't worth much). This illness has required purchases way outside of my normal spending habits (air purifiers...solar powered ovens...tents...many supplements...a car), so I still need as much help as possible!
In hopes of returning to grad school, I'm trying to avoid both bankruptcy and cessation of treatment, but balancing these goals with my financial situation is challenging. If you can't donate, please keep sharing! At a minimum, sharing will help to raise awareness about the existence of Biotoxin illness.