Coping With Lyme Disease

I am a 52 yr old mother of five. I contracted Lyme disease along the shore of Conn. in the 1960’s. Diagnosis did not come until the age of 47 when we discovered I’d passed it to all five children through the placenta and/or breast milk. We were all treated (except one son in denial) for two years on antiobiotics. More treatment was recommended but antibiotics are not fun or easy to endure for long periods of time. Two of us are much improved (although told not cured), and three still suffer considerably. Our symptoms range from immune system weakness, thyroid failure (three of us), cognitive impairment, memory loss, arthritis, gastric difficulties, sleep disturbance and fatigue. There is so much controversy around why it it prevelent in the northeast from real estate values to a cover up of a release of lyme on Plum Island by the gov’t in the 60’s. The government does not recognize chronic lyme nor do they sanction long term treatments. Insurance companies often refuse to pay for more than two months treatment. The CDC says if its been treated for two months and you still suffer you have “post lyme syndrome” and there’s nothing to be done but take pain killers and anti inflammatories.

Its been a long and frustrating journey. It is very difficult as a mother to know I passed something preventable into my five beautiful children who will now never live up to their full potential due to all the symptoms they continue to suffer from. I spent years being told it was all in my head. Well, it is. It crosses the blood/brain barrier and reaks havoc up there!!! Migraines and seizures are also part of the deal for some of us.

My advise is to seek out docs who are willing to diagnose on a thorough history and not just tests. Docs who are willing to treat long term and wholistically. My advice is to stay informed and pray that our country wakes up to the fact that this disease is not benign and it does kill in many cases. I lost my best girlfriend to cardio myopathy due to lyme disease I know of two doctors who died as the result of Lyme. If it doesn’t kill you, you just spend your life wishing it did.

We struggle with trying to educate those in the school systems and hospitals about all the effects of the disease on students and patients. Not only must we endure the disease, but we must fight with the “establishment” along the way to get the help we need and deserve. It boggles my mind that so few people are aware of the disease let alone its long term affects. And that includes our medical community. I personally know docs who treat children at our Ct. Childrens Hosp. for Arthritis and often overlook that it could be caused by Lyme and if treated properly, eliminated. So, these kids are put on long term anti inflammatories and doomed to a life of pain and disability. Doctors who treat long term are being put into jail for doing so. Why? There’s that ugly conspiracy issue again….Could it be true that our government doesn’t want to be responsible so we prosecute the docs who know what’s going on? Could it be that the medical and scientific community screwed up so badly with antibiotics over the last 60 yrs. that those of us with Lyme suffer short term (inadequate) treatment to save their butts from being accused of misuse of the meds? and the ones who dare to treat the only way that gives us a fighting chance get put in jail? There’s got to be a better way folks and someone knows something we don’t. It’s a shame that a significant percentage of Americans will suffer Lyme and go undiagnosed or treated because of ignorance and misinformation. So, we tell people they have this mysterious thing called chronic fatigue or fibromyalgia and send them to the rhuematologist and physical therapy and put them on prozac instead. I have found that it is epidemic in our country and being ignored and denied.

Even my granddaughter has had it. She still suffers seizures leg pain,and fatigue. She suffered Bell’s Palsy as well. Take it from a woman who’s lived with this beast for 47 years and watched it in 6 loved ones as well…I know this animal now when I see it and I don’t like it. I wish our country could see it and not like it and help us fight it. I wish I had a disease that was recognized and given some damn dignity. My poor daughter has often said she’d prefer to have cancer because then there would be something someone could do and folks would never tell her she was faking it. Even if she died, it would be with dignity and support. Well, I don’t wish that for her or anyone, but I know how she feels. Pain has been my constant companion since childhood.

Am I angry? You betcha. Am I scared? No more…I’ve lost too much to be scared anymore. I pray all the time for recognition and cure. I count my blessings daily to stay in touch with my world and stay sane. I lost my husband two years ago to cancer. Like I said, I wouldn’t wish that on anyone. He spent half of our life together worrying about me…and our children.

So, if you suffer from chronic illness, my heart goes out to you. Read, ask questions, be willing to try new diets and natural remedies (supervised by a naturopathic physician) as this can help even more than regular medicine. Don’t forget to pray and take stock everyday of what you do have. Gratitude is a source of great joy and makes us smile. Oh, smile at least a few times a day and laugh your butt of at every opportunity. Find friends who can laugh with you, or live on your crazy schedule, or think you’re the cat’s meow even if you are sick. Do something nice for someone everyday even if its just saying a kind thing. Yes, those smiles count as kindness too. Get and give hugs generously and every once in a while you get a self pity day…but no more than that or you’ll dig a hole too deep to climb out of. Take your lemons and make lemonaide any chance you can…you’ll like yourself better and so will everyone else. These are the things that have kept me here and going. I have recently lost 40 lbs, started dancing (ballroom), do yoga and today I walked about four miles. Yahoooooooo!!!! Its been a long,hard,and sad journey and you too can reach goals if you are determined…even if its painting stick people with the brush in your teeth. You are my comrads and heroes, all of you. May you know you are perfect, you are loved, and you are part of God, whomever she may be. God bless you and thanks for reading my story.