Spoonie Stories: Share Your Lyme Story Today, So Others Won’t Have To Tomorrow

by Brian L.
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My name is Bryan, I was born and raised in Rodeo, California (Bay Area) and later moved to Vacaville, California where I live now. I have been bitten by many ticks in my life. I was infected with Lyme and co-infections the first time in 1982-1984 in Pinole, CA and then infected again and nearly died in 1998-1999 in Vacaville, Ca. Although doctors say “there is no Lyme disease in California” they are very wrong! I‘ve had chronic late stage Lyme for 33 years now. I was misdiagnosed and ignored for 28 years until my aunt (who has Lyme for 20+ years) recommended I see her Lyme literate medical doctor (LLMD). Within minutes the LLMD said “I can tell you have Lyme and co-infections, and you are very sick”.

Since that day I have been treated with aggressive antibiotics, herbals, protocols, supplements, homeo, Picc line, IV, injections, oral abx… Tried almost everything except for the highly expensive treatments. Since nothing Lyme disease related is covered, I’ve spend many thousands out of pocket on treatment with little to no help from anyone. Visits are out of pocket, all Lyme meds are out of pocket and even blood work, if Lyme related, is out of pocket –which is ridiculous to feel like nobody believes your illness, not even our own country. I haven’t progressed in 5-6 years of treatment but some symptoms are a little better. I have hundreds of symptoms, that’s how I knew I had Lyme, Bartonella, Babesia…etc. I have been bedridden, in a wheelchair and home-bound going on 7 years. The only time I leave the house is for doctor appointments or blood work. Having Lupus too I cannot be in the sun.

I was born with sweat or no immune system which is called primary immunodeficiency (PI) so the thought is that my weak immune allowed Lyme and co-infections to take over my body. After treating for all those years, my Lyme culture came back highly active and positive which is rare to get the test back that fast. So I’m a difficult, rare type of Lyme case, but in my case it is too late to get rid of the Lyme (remission) so I am taking a maintenance dose of antibiotics daily, for life to keep the Lyme at bay. I have Lyme in my brain, heart & spine and it’s taking a toll on my body. My spine is falling apart (several herniated discs, spinal stenosis, cysts on my spine, DDD..). Lyme has caused many other illnesses over the years. I’m currently taking a cyst buster Tinidazole and an antibiotic for my brain Minocycline.
 I suffer from: Chronic/Late-Stage/Neuro Lyme Disease, (Co’s include) Bartonella, Babesia,  Protomyxzoa Rheumatica, & other co’s…  Lupus, Primary Immunodeficiency, RSD/CRPS, Postural orthostatic tachycardia syndrome (POTS), mild Gastroparesis (GP), Fibromyalgia (FMS), Chronic Fatigue (CFS), Mycoplasma pneumoniae, Chlamydophila pneumoniae, intestinal parasites, Epstein Barr Virus (EBV), Radiculopathy, herniated Discs in my neck & back C5-C7, chronic Knee pain (non-lyme), Spinal Stenosis (neck), spinal cyst, Hypothyroidism, carpal tunnel, Insomnia, IBS-D, and much more. Seems like every blood test we find something new. But I love life and I will not let these illnesses define me. I love all the little things in life and hold on to hope!
I am here to share my story, my journey to help others and also use my social media as a personal journal to keep track of my life while connecting with others. I graduated from college with a 3.43 GPA, but now I write like I am in the 5th grade. I find it hard to express what I am trying to say and I cannot think of complicated words anymore. It is hard to complete a sentence or communicate. I have dyslexia brought on by the Lyme disease. I literally spend every day either in bed or on the couch watching TV or doing sports art. I lost pretty much all my family and all my friends when I told them I was so sick. Since then, only 2 friends stuck with me and my mom and dad let me live with them. I have an aunt who cares but not many others in my life stayed around. The only support I have is from my parents. I had to go bankrupt years ago and lost everything when I became disabled and was forced to medically retire. I now am trying to do what I can with Lyme and my sports art to keep me distracted from the pain each day. My pain is so severe I’ve exhausted all pain med options. I have a pain management treatment that keeps the edge off so I can get by each day. It’s a sad life but we have to make the best with what we have and make sure others don’t get bit by ticks!
This blog is dedicated to Kristal Swope for her generous Kickstarter donation.

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