Because it went undiagnosed for more than 10 years, my Lyme has run wild, boring holes through my organs, tissue and bones while weakening me so much that I have developed other problems - including a rare MAST Cell cancer.
I never felt quite right after my diagnosis in high school, but after taking the meds my doctors said I was cleared and that any lingering symptoms were “all in my head” (spoiler alert: they weren’t) and suggested therapy. My health declined rapidly in 2013-2014 but doctor after doctor was stumped so I put my head down and went back to work, convinced I was just stressed out and adjusting poorly to life in New York City.
By 2015 I couldn’t deny my intuition any more - something was really wrong. I started experiencing debilitating physical symptoms: seizures, blurry vision, arthritis, muscle weakness, migraines, Bell’s palsy, insomnia and chronic pain. Plus that time my eyelashes all fell out... cute, right?
Test after test came back negative until I finally got my neurologist to retest me for Lyme. You guessed it, I had picked up the infection as a kid and the Lyme had been slowly breaking down my system for years.
While my medical team struggled to figure out why I wasn’t responding to the traditional treatments it spread to my brain, causing debilitating neurological problems. The memory loss, difficulty speaking, disorientation, and nerve damage have taken away my ability to function. The brain damage will continue to get worse unless I can secure treatment, and all of it may not be reversible. (See bottom of post for more info on symptoms)
I am now lucky enough to be in the care of an amazing specialist, but am unable to afford continued treatment because of the overwhelming cost-- Chronic Lyme is NOT covered by insurance because it is STILL not a recognized disease in the eyes of the CDC. I have exhausted my savings, as has my family, and it’s now time for me to humbly ask my friends and loved ones to support me in any way you can. I am SO CLOSE to beating this thing- I just need a little extra help from you guys to make it happen.
In the last 3 years I have spent more than $150,000 JUST to get diagnosed with this rare set of diseases, seeing 30+ specialists until my current doctor cracked the case: a complex mix of Chronic Lyme , Babesia , SIBO, Bartonella , Epstein Barr, Thyroid Disease, MAST Cell, POTS , PANS, and ME/CFS. Yeah, you read that right; pots AND pans (wish I was joking!).
With your help, I can do an aggressive round of treatment in December/January which will be more than $35,000 (thanks, PharmaBro!), plus the additional cost of my medications, antivirals, physical therapy, daily IV treatments and ongoing radiation/ozone therapy. After 15 years on this ride, my hope is that by the end of 2018 I will be in remission and will be able to LIVE and WORK again. I am SO CLOSE to beating this thing, I can feel it.
I’m not good at asking for help, but today I’m hoping you will please donate anything you can (there’s an anonymous option, if you’re a shy bird!).
Thank you so very much, my friends. I will find a HUGE way to pay it forward once I am stabilized.
[Update: I’ve found out that GoFundMe takes a small percentage of the donation. If you’d prefer to Venmo me to avoid that fee, that would obviously be magical as well. ✨ @lauramacleod ✨]
Q &A: The Questions I'm Most Commonly Asked
Q. I don't know anything about Lyme. Give me the highlight reel.
A. Watch the trailer for the documentary, Under Our Skin , for the 60 second overview of the disease, how it's spreading (quickly!) and what life looks like when you have Lyme. (http://underourskin.com/)
Q. I've heard of Lyme, but I thought it was pretty common and easy to treat?
A. Lyme is the fastest growing disease in America, infecting more people than AIDS and Breast Cancer COMBINED, so it is pretty common. Most people find the tick, go to the doctor, and are cleared after 30 days of antibiotics. If you don't find the tick, or if you are bitten by a lyme-transmitting insect that leaves a smaller mark (mosquito, spider, etc), symptoms will appear months or years later (like me). It is also transmitted to children in-utero, so it's possible to have Lyme without even receiving a bite.
Q. What does it feel like to have Lyme?
Lonely. Most patients see 10-15 specialists before they find a Lyme-literate doctor who is willing to treat them. Hearing that it's "all in your head" from doctor after doctor is devestating -- especially when your body is screaming for help -- which is why the biggest killer of Lyme patients is suicide, not their symptoms. For more on this, check out the trailer for Under Our Skin or Unrest , the documentaries that helped me recognize my symptoms and made me realize that it is real and that I am not alone.
Annoucement For New England Friends :
If you've "had" Lyme, but still feel off, consider this list of symptoms and get re-tested!! If it goes untreated, Lyme disease can lead to problems with your skin, joints, nervous system, and heart. These can occur weeks, months, or even years after your tick bite (like me!). The problems can get better with antibiotics, but if mistreated will last the rest of your life. I have all of the following:
Cognitive Symptoms Of Chronic Lyme:
Slowed processing of information.
Word-finding problems/ reduced verbal fluency.
Dyslexia and problems dealing with numbers.
Processing impairment (losing things, getting lost)
Poor abstract reasoning
Losses in executive functions such as inability to maintain divided or sustained attention
Poor mental tracking and scanning (loss in ability to follow daily affairs, which is complicated by persistent distractibility)
Neuralgia: a pricking/stinging pain, excessive sensitivity to light touch or pressure.
Cranial nerve disorders: facial palsy, double vision, hearing loss, dizziness and tinnitus.
Autonomic dysfunction – problems in regulation of pulse and blood pressure eg POTS
Lyme-related Psychiatric Symptoms:
Emotional lability: rapid mood swings, episodes of rage, crying, reduced impulse control.
A note about finding the right doctors (LLDs) and why it is not covered by insurance:
The CDC refuses to acknowledge that many Lyme patients are not cured by short-term antibiotics, so patients (like me!) who continue to suffer from Lyme are often not covered by insurance.
Doctors who do understand Chronic Lyme Disease and offer longer term treatment for patients are often cloaked in secrecy because they risk their licenses for treating an illness that “doesn’t exist”, or for billing their care in such a way as to get coverage for their suffering patients. The names of these doctors only spread by word of mouth and through secret lists maintained by Lyme Disease advocacy groups and do not take insurance. These doctors who understand Lyme Disease and treat beyond the short-term are known as Lyme Literate – LLMDs, for short.
I now have binders and binders of information on this subject if you or a loved one find yourself with Lyme or other auto-immune challenges. Please contact me!
No one should have to face bankruptcy to recover from an illness obtained from a bug bite in this day and age. No one. And that is why I speak out, and will continue to speak out about the cost of getting well.
And in case that all got a bit too heavy, here are a few pictures of me doing the things I used to love doing (and hope to do again!), instead of a bunch of depressing photos of me in my hospital gown. Help me take my life back!
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