[My hearty thanks to Jennifer for her volunteer work to create a custom template for Lyme-Over The Edge. -- Brandilyn]
Lyme is my constant companion. It never leaves me. It’s closer than any family member. It permeates my every waking moment and disturbs my sleep. Every decision I make, every plan has to factor in Lyme. There are days I think it’s going to kill me; there are days I wish it would.
I started having severe migraines in May of 2009. I have a history of migraines so this wasn’t too unusual, but they had been under control. I started feeling exhausted, like I had the flu I couldn’t shake. Then I started having heart palpitations and passing out if I stood too quickly. Finally in July I saw my doctor. “Something just isn’t right,” I told her.
She ran CT scans and an echocardiogram. Nothing particularly strange showed up. I had some blood work from a life insurance application that showed elevated levels indicating I was fighting some sort of an infection but nothing else stood out like a flashing red light. We were at a standstill.
I was working part time at our church as the web and communications person. I started missing work due to the debilitating migraines then tried to make up the work at home. I was sleeping up to 20 hours a day some days. I passed out twice at work. My boss wasn’t happy with me and was making noise to let me know.
At the same time my daughter had been seeing the doctor for over a year for undiagnosed lethargy and pain. She had dropped out of school in February and I was homeschooling her. We saw the same family doctor who finally decided to run every test in the book on her. She came back positive for Lyme. I told her to run the test on me. I was also positive for Lyme.
We had discussed Lyme in the past for my daughter because her symptoms fit, but we lived in town, didn’t go camping, and weren’t in an area known for being high in Lyme. So it seemed a long shot and we dismissed it. After we got diagnosed I did some research and discovered that our area in Indiana was having a spike in Lyme-infected ticks, and that the animals most likely to carry these infected ticks were actually rabbits, not deer. A case actually made the news of a boy who got Lyme, was given antibiotics, and now was cured.
We had a colony of baby rabbits under our back porch. Right where our black Lab liked to lay to get out of the sun. We had treated our dogs with anti-tick and flea medicine, but clearly they’d brought in an infected tick.
The doctor started us on Doxycycline, the standard treatment, saying that a month for my daughter and two weeks for me should be sufficient to wipe it out. She pulled out her CDC treatment book and showed me.
Needless to say it didn’t. My daughter had probably been infected for over a year. Me, at least six months if not longer. We don’t remember my daughter being bitten and neither of us developed the legendary bull’s eye rash. I had been bitten by a tick two years previously. The head had gotten stuck in my foot, and I had gone to the doctor to have it removed. She cleaned it and said it looked fine. No antibiotics. Was that the tick that gave me Lyme? Had it lain dormant for a year and a half? Or was it another tick?
I got a Herx reaction so bad I couldn’t get out of bed and was fired from my job. The funny thing about Lyme is that as you fight it, it fights back. You know a treatment is working when you get sicker. How’s that for irony?
The kids and I put everything in storage and went to California to stay with my parents for the winter. I was over 40 with no job, living with my folks, and so sick I couldn’t get out of bed most days of the week.
The Lyme was in my brain. I had the terrible pain at the back of my neck and swelling in my brain. I couldn’t concentrate or remember anything. It felt like my brain was composed of potholes. I could remember parts of things but then there would be this hole where I couldn’t remember anything. I wondered if this is what it felt like when someone started getting Alzheimer’s.
At one point the migraines became so intense that I kept my head packed in ice. Then I started vomiting uncontrollably for two days. I could keep nothing down and got severely dehydrated. I passed out in the bathroom. I couldn’t walk, so my father half-carried, half-dragged me to his truck and to the emergency room.
At the ER I tried to explain that I had Lyme and I needed to be rehydrated and given some pain medicine. Preferably not a narcotic which would make me vomit more. I got the run around. “Well you’ve been on Doxy so you can’t have Lyme. You must be having a stroke.” Because of the Lyme and my weakness from having nothing to eat, I had poor control of my arms and legs, and couldn’t see or talk well. I didn’t know what day or date it was. I had a CT scan and they wanted to do a lumbar puncture. I’d had one before and I refused this one. I wasn’t going through all that pain just for them to dismiss me. Eight hours later I was rehydrated and the pain in my head dulled. Of course I had no insurance so I also left with a $6,000 bill.
After a couple of weeks I tried to figure out what my future was going to look like. I was living with my folks, me and two kids in one small bedroom. But my mom was retired and my dad had been out of work for over a year. California is an expensive place to live so I knew I couldn’t make it there on my own and I didn’t know how much longer my folks could support us. I couldn’t read, it hurt too much. I had made a living as a graphic and web designer, and a writer. Now I couldn’t do any of those things. And I didn’t know if I’d ever be able to again. There is nothing so terrifying as not being able to take care of your own children.
Fortunately I found a clinic in California that only charged $60 for a doctor’s visit for uninsured patients and they had a doctor on staff who knew something about Lyme and put me on a three-month course of Doxycycline. After the Herx reaction again, I started improving to about 60%. I also started reading Cure Unknown by Pamela Weintraub and realized what a battle I had on my hands for me and my daughter. And I had no resources to fight it.
As I started reading Cure Unknown (recommended reading for anyone involved in the Lyme wars) I got so angry at Big Pharma and the insurance companies playing with people’s lives because of money. Of essentially tying the hands of doctors who want to do good medicine but can’t because they don’t have the proper information and because insurance companies won’t cover doctors who don’t play by their rules.
I started researching natural and homeopathic solutions to Lyme. I knew I couldn’t afford the IV antibiotics I needed to fight the Lyme in my brain. My daughter started taking grapefruit seed extract. The pediatrician at the low-cost clinic didn’t know anything about Lyme and didn’t want to do anything about it. I didn’t have the resources to go doctor shopping. So we started with the grapefruit seed extract. She got a Herx reaction, which I was actually happy about because it meant the grapefruit seed extract was fighting the Lyme. And the Lyme was fighting back. We also started taking the supplements Lyme expert Dr. Burrascano mentioned on his website, a few at a time.
As I got more strength I was able to be on the computer a little at a time, trying to find information about how to treat Lyme. Unfortunately there’s a lot of mixed information out there. How did I know that a touted treatment really worked or was it just someone’s way to make a fast buck? I looked for recurring recommendations by people who didn’t have anything to sell, and for things that seemed like they wouldn’t be toxic. I prayed for wisdom. We also decided to eat organic as much as possible, particularly with meats and dairy products. My thinking was that my body was so taxed with the toxins produced by the Lyme it didn’t need any extra chemicals.
At this point I have more good days than bad days, which I am thankful for. But I can’t work full time. I still spend 1-2 days a week confined to my bed. I still have a daughter sick with Lyme. I still have debilitating migraines. I can’t believe how physically weak I am. I used to be a runner and work out with weights. Now I can barely do stairs. But I am extremely grateful for my good days. Yesterday was my last day on Doxy. I’m terrified of what will happen. The few times I’ve tried I’ve regressed badly. But I don’t know if the doctor will give me another scrip. I hate feeling like my future is in the hands of someone who might not believe my disease is real.
Every day is a battle and the battlefield is our bodies. The thing about Lyme is that you have to be your own advocate at the time you least are able to. You have to fight the disease and the medical establishment. You have to remember to take multiple pills at different times during the day when you can barely remember your own name. You have to fight depression and people who wonder why you’re not well yet since you’ve been on antibiotics forever. You have to deal with the loss of friends who are tired of seeing you sick and wonder why you’re well one day and sick the next. They get tired of helping you and drop out of your life. You get tired of asking for help from people who don’t want to give it. You become isolated and alone which reinforces the depression.
It’s hard not to dwell on the “what ifs.” What if I’d insisted on a Lyme test when my daughter was first sick? What if I knew rabbits carried Lyme-infected ticks? What if I’d been more diligent about checking for ticks? What if I’d gotten antibiotics with that very first tick bite? Those are the times I rely on my faith and my trust in God’s plan for my life. I don’t understand any of it so I have to trust that He does. I don’t know how people fight Lyme without faith.
As I speak to people about Lyme I am amazed how many people, even living in the Midwest, are cavalier about ticks and tick bites. And how many know very little about Lyme, or think that it’s easily treated. I’ve recommended many times that people get a Lyme test for unusual symptoms that don’t go away. That they get antibiotics every time they think they’ve been bitten. Because I don’t want anyone to go through what my daughter and I have if it can be prevented.
Jennifer Tiszai, Michigan
[In Tuesday's post we'll hear from Jennifer's daughter, Caitlan, about her own fight with Lyme.]