Michael Anderson recently wrote to me about his ongoing struggle with Lyme disease. He gave me permission to share his story, which I decided to do in his own words:
You may have heard my name as the weather observer from Sebago for the past 25 years or seen my Maine Weather Spotter page on Facebook. In any case, I thought I would tell you my story of the struggle I’ve had the past five years.
Back in the fall of 2008, I was starting not to feel well, with flu-like symptoms and a stiff neck and my tummy was really upset. I went to the doctor and he thought it was a virus and had me increase my Prilosec for acid control. But I started having more symptoms. One night I was at the computer and my lower back felt itchy. I looked in the mirror and there was a round rash circling a deer tick. I thought to myself, “Man, I hope that is why I was not feeling well.”
I went to my doctor and he didn’t really think it was Lyme. He ran the local lab Lyme test, which was negative. So, I took his word. But as time went on, I started getting one symptom after another. By the holidays, I had lost some 47 pounds and could only eat soda crackers. Dizziness, extreme nausea, joint pain and some 50 other symptoms made each day a struggle. I even was taken one night to the ER with a pancreas infection.
After $10,000 worth of tests (including cat scans, an MRI and loads of blood work), my doctor says he didn’t know why I was sick. I looked at him and said,”Could it be that deer tick that bit me?” He paused for three minutes and said, “Well, anything is possible.”
In any case, I left him and found a doctor that treats Lyme. I’d rather not disclose his name, but he put me on long-term antibiotics and slowly I improved. Within a month I was eating more and more. Slowly, month by month, my symptoms went away. Within a year, I had gained half of my weight back. And little by little, made improvement.
I was also treated for co-infections that I got from the same tick. It has been a long haul. I am much better than I was in 2008 after antibiotics and some herbal treatment. I am now the heaviest I have been in years. But I am still left with a few chronic symptoms, such as extreme fatigue, brain fog and some joint pain and stiffness. These leftover symptoms have prevented me from returning to work or to a totally normal life. There are times I get discouraged, but if I look back, I am so much better than I was. Lyme disease is terrible.
Here are a few things I’d like to say about Lyme:
- Testing is horrible (only better if done thru IGENEX lab in CA).
- With chronic Lyme, it is an up and down roller coaster. I have days I have to push myself to get out of bed after a nine-hour sleep. Some days just doing the dishes is a struggle.
- The person may look fine. This is even more frustrating when people do not understand.
- If more doctors would just treat when someone is bitten by a deer tick, there would be much fewer chronic cases and long-term antibiotic use. (If I was treated in the beginning with two to three weeks of doxycycline, I would not have such horrible story to tell.)
Currently, I am still on antibiotics and herbal treatment. One positive sign: I still am gaining weight. I am 168 pounds (up from 121 pounds at my sickest). Anyway. I hope this story helps. I will attach a picture of me before and just after I got bit. I look better in recent photos, but this shows the difference in my health. I pray someday I will, in fact, get back to that person that I miss.
LYME DISEASE STATISTICS
Lyme disease is the most commonly reported tick-borne illness in the United States and infection rates continue to grow. Last year, more than 1,375 cases were reported in Maine, which was a record high for the state. It’s estimated that the true figure may be up to 10 times the number of reported cases.
The symptoms of those reported cases included:
- A characteristic expanding bull’s-eye rash in 57%
- Arthritis and joint swelling in 27%
- Bells Palsy or other neurological symptoms in 11%
LYME DISEASE CONTROVERSY
Supposedly, Lyme disease can be easily treated with a few weeks of antibiotics, but like Michael, not everyone gets a quick or accurate diagnosis. As he alluded to in his story, doctors don’t necessarily agree on how best to treat an infection, let alone make a definitive diagnosis. According to scientist Holly Ahearn, who was quoted last summer in the New Yorker article, The Lyme Wars, “There are two standards of care when it comes to Lyme. One in which patients are diagnosed and treated until they get better, and the other where people are treated for three weeks with antibiotics — and, if you don’t get better then there must be something else wrong with you, or perhaps you are making it up.”
Try telling that to Michael Anderson or to other people who have worsening symptoms after a course of antibiotics, but are told by their insurance companies that any further treatment won’t be covered.
People infected with Lyme disease continue to seek a correct diagnosis and proper treatment and scientists continue to look for answers. In the meantime, it’s mostly up to individuals to try to protect themselves against the tiny black-legged ticks (deer ticks ) that carry Lyme disease and to advocate for themselves if they suspect they may be infected. Read more about how to protect yourself in my blog post How to Identify a Deer Tick and Protect Yourself Against Lyme Disease.