As a rule, I do not share personal information online but desperate times call for desperate measures and I need help. After years of feeling vaguely unwell and months of rapidly deteriorating neurological problems, I have finally been diagnosed with Lyme disease. For those who don’t know, Lyme disease is a tick-borne illness that has the potential to break down just about every system in the body, most notably the central nervous system and the immune system. It is not fatal but it can be debilitating, and is notoriously difficult to eradicate, especially in the late stages. (More information here).
This already not-fun illness was complicated by my living in a water-damaged apartment building which, unbeknownst to me, was contaminated with toxic mold. Lyme disease and mold toxicity often go hand in hand. Whereas a healthy body can normally handle small amounts of toxic exposure just fine, for the immune-compromised body of someone with Lyme disease it can be the straw that breaks the camel’s back. The same goes for chemicals. I have developed an acute sensitivity to chemicals encountered in everyday situations (new carpet, bleach, air fresheners etc…) creating an inconvenient cocktail of Lyme/mold/chemical poisoning.
Lyme disease is most commonly known for producing a bull’s-eye rash, flu-like symptoms and joint pain. At a later stage, such as my case, the neurotoxic Lyme bacteria invade the nervous system and the brain. Because the nervous system controls the entire body, any and every system can be affected. I ended up in the hospital for three days when my vision began to blur and my arms and legs began to go numb. Day to day, I have been struggling with extreme fatigue, weakness, migraines, dizziness, nerve pain, numbness and short-term memory loss.
Before the diagnosis, I had visited upwards of six medical practitioners: my general practitioner, neurologists, naturopaths, chiropractors, physical therapists and more. I told my friends that I felt like I was slowly being poisoned or that my nervous system was somehow malfunctioning. I felt like every system in my body was failing and shutting down. The worst part was not knowing why. I had heard so many times, “It’s just stress,” “But you look great!” “We don’t really know,” “Everything came back normal.” I started to feel like I was going insane: If everything is normal, why do I feel like I’m dying?
The panic and despair I felt during that time was something I would not wish on my worst enemy. A dark night of the soul, to be sure. I felt like my own body had betrayed me. This body that done so much for me- that could run and dance and sing- had turned on me, inexplicably. I felt like a ticking time bomb. I had to crack the code, but I was running out of time.
After extensive research, I discovered several articles about toxic mold poisoning. All of the symptoms fit. Suspecting mold in my own home, I stayed away at a friend’s house for the next three days as an experiment and, while it was no miracle cure, for the first time I stopped feeling worse. I asked a contractor friend take a look at my apartment building and after pointing out five or six spots of significant water damage he told me that he recommended moving out immediately. After moving, I continued my research and discovered a close relationship between mold poisoning and Lyme disease. I told my doctor that I wanted to get tested and she agreed. The results were positive.
Receiving a concrete diagnosis has been an immense relief. Something about holding those blood test numbers on a little sheet of paper feels oddly reassuring after months of free fall. Nonetheless, my inner peace has not been without outer struggle. If I seem to be doing “well,” it is only the tip of the iceberg. You probably caught me on my good hour or two of the day that I actually went out. In between there have been many tears and fears and sleepless nights.
In the past two months I have lost my home and most all of my possessions (due to mold contamination). I have dropped out of school and missed two months of work, being physically and mentally unable. I have spent my entire savings on basic living necessities and health care costs. I spend an inordinate amount of time, money and energy avoiding mold and chemical exposure while I heal. I have to follow and extremely restrictive and often costly diet.
If this seems extreme, picky or high maintenance, know that none of this is by choice. Five short months ago I was a full time graduate student, interning sixteen hours a week, holding three jobs and writing music. I would love to have my old life back. I would love to be a functional, productive human being. I tried to make do and get by and I collapsed completely. All of this, I am doing to simply survive.
Many of the treatments which I have found to be effective are costly and not covered by insurance. There is great controversy in the medical community and among insurance companies about the best practice for treating Lyme disease. According to the Infectious Diseases Society of America, Lyme should be treatable by three weeks of antibiotics and this is all that insurance will cover. This is often effective if the disease is caught within weeks of exposure. Unfortunately, once the disease has progressed to the neurological stage, antibiotics- especially a short term course- have proven to be less effective.
It has been a struggle to navigate these many logistical details while my body is in pain, my energy is at zero, and my brain feels like it is made out of cotton balls.
Although this has been a difficult time, to say the least, I can genuinely say that I have never been more grateful to be alive. Something about spending three days in a hospital bed while doctors scan my brain for all kinds of incurable diseases really drives home the “life is fleeting,” truth of it all.
Fortunately, I now have a direction to follow on the path to healing. Unfortunately, the path to healing is expensive. I trust that I can make it through this, but not without help! Any contribution you may be able to make would be greatly and sincerely appreciated. I do not ask this lightly- I know that these times are difficult and uncertain for most. I have also been fortunate in many other ways, and I do not take that for granted. Thank you to all who have offered your love and support. I will most certainly pay it forward.
Lauren Elizabeth Nelson
BREAK DOWN OF COSTS:
MONTHLY MEDICAL COSTS (next 3 months) $2730
· Hyperbaric Oxygen Therapy (You can read why this is important here here and here ): $375
· Doctor copays: $75
· Medication/supplements: $360
- Additional alternative therapies: $100
ADDITIONAL COSTS: $2065
· Lyme disease blood testing (from before I had health insurance): $375
· Disposal of old furniture: $300
· HEPA and carbon air filter (Because ANY toxic chemicals make me react): $525
· Non-toxic car interior cleaning (to remove any transported mold spores and chemicals): $180
· Vet costs (because my cat was getting sick in that apartment, too): $175
· Cleaning old apartment (I could not spend any time in the apartment without having a reaction): $75
· Storage Unit (I cannot weed through and throw out my old belongings until I know I am stabilized): $145/month for next three months approximately: $435
I do not have exact numbers, but I will need to purchase basic necessities. Literally, all I kept was my car, my phone, my computer, one pair of sandals and some clothes.
· Bed, mattress, bedding, dresser
· Table and chairs, couch, book shelf, lamp
· Cleaning supplies
· Kitchen supplies: pans, knives, bowls, utensils
· Winter clothes: coat, boots, mittens and gloves
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