Imagine being sick for years and years, like having the flu … almost but not quite. Imagine having widespread muscle pain, and pain that moves from joint to joint. Imagine routinely forgetting your own phone number, and having to look at an envelope you received every time someone asked you to verify your address. Imagine sudden explosive fits of rage and uncontrollable bouts of crying, neither of which are typical for your temperament. Imagine that you cannot remember your wedding or your best friend from college or whether or not a relative you loved has died or not. Then imagine that your doctor tells you that you there is nothing wrong. You must be depressed. You must not be getting enough sleep. After a few years things change in him. Your doctor says you have fibromyalgia, and you are happy to finally have a reason for all of your suffering… but you soon realize that from that moment on everything that goes awry is attributed to the mysterious fibromyalgia.
Now imagine that you finally accept this diagnosis called fibromyalgia. They convince you that it won’t progress… that it is a cluster of symptoms caused by over active nerves. But you do get worse… you lose your hearing, you lose your career, your pain increases and decreases randomly. Imagine crushing fatigue, stabbing nerve pain, and the feeling of glass stuck in the soles of your feet. Imagine your forearm shaking uncontrollably. You think you must be crazy. You think you must be dying. You think you just need more sleep. You do everything you can… you eat right, you exercise, you avoid chemicals and over use of medications. But you keep feeling worse. Doctors test you for thyroid, RA, and a host of other diseases, but your labs are always normal. It must be the fibromyalgia. Knuckles swell and hurt and they say you have osteoarthritis, but suddenly the swelling and pain goes away from your hands… seems to move from knee to knee, elbow to elbow, without reason… seems to invade your hip on the right but by the time you get to the doctor it is now on the left, or in your foot. You cannot bear to be touched or tickled, and some days you avoid hugs. Everything hurts. Imagine you are talking with someone who is looking at you cockeyed, as if they were waiting for something, and you realize that YOU must have been talking because it’s now your turn again. Imagine wondering if you are officially insane. It must be the fibromyalgia.
Then one day you finally land in a therapist’s office because your life has spun out of control and she says “I think you have Lyme Disease” and you say “my doctor ruled that out” but she is so certain, because she also has Lyme Disease so she can see it in others. You study and you ask questions and you go to lectures and for the first time, in your entire adult life, you hear someone describe you. You are not sure if you have Lyme, but you are convinced it is worthy of investigation. But, in your search to learn about the disease you also learn that there is a big fight going on in the medical world. One side treats Lyme patients with long term antibiotics and cures them, or at least gets them into remission. Their patients leave wheelchairs behind as pain diminishes. Their patients regain their careers as energy and cognitive abilities return. Their patients are found to leave their psychiatric diagnoses in the past as they undergo healing treatment. The OTHER side insists that this is not a disease at all, and if after 28 days of Doxycycline the patient is not well then it is too late and the patient has Post Lyme Syndrome. What would YOU do?
If you are like me you would have gone to your doctor and asked him to consider Lyme Disease even though he has already tested your blood for it, and you would suggest that the blood test is unreliable, and you would ask him to help you. But instead of helping you he puts you through 2 hours of hell trying to convince you this is wrong, and in which you must defend your NEED to know what is wrong with you, but he actually says “patients who pursue this diagnosis only want an explanation for what is wrong with them." Yes, really. You can’t believe your ears to hear him say that. His feet are firmly planted on the "OTHER" side. You can’t believe your ears when you hear your own voice explaining to the doctor that "of course you want to know what’s wrong, and when the body hurts it is trying to tell us something… so of course I want to know what it is trying to tell me." You wonder “shouldn’t a doctor KNOW that?” Finally, he gives you a referral so that you will leave.
After months of trying you finally find a doctor who will send your blood to a lab that specializes in Lyme Disease, even though the blood tests are still not very reliable. But you know this is the best chance of getting anyone to believe you are sick. Then, one day you meet this new doctor in his office for the long awaited lab results and there, in black and white, is a CDC positive result for Lyme. He gives you a prescription for 28 days of Doxy and tells you only to return if you’re still sick and you know, right then and there, that this doctor does not understand Lyme. You know you have 28 days to find a doctor who does.
That is what happened to me. I found out that I have these things called spirochetes living inside of my muscles, my brain stem, my organs, my nerve sheath, my brain:
They had been growing in number for 30 years inside of me at the time of my diagnosis. From the moment of the appearance of bulls eye rashes on my abdomen and other outbreaks on my foot and ankle, strange fatigue and crawling skin, these tiny single-celled organisms called spirochetes have been burrowing into every square inch of me. They rested for a while in remission, and were then reactivated by another tick bite in 1998, and have been actively damaging my body and mind ever since.
Why am I telling you this story? Because there is a huge disregarded population of people just like me, and we need tools to help us cope with the images of these THINGS inside of us (along with whatever other diseases – called coinfections- hitched a ride into our bloodstreams), and with the images of knowing we have these coinfections that came from the mouse or squirrel in the field that the tick bit before he bit a deer and before he bit us. We need help coping with the constant self doubt of our diagnosis, and the constant fluctuation of symptoms. We need help coping with the incongruity that we are faced with when the treatment makes us much sicker if it’s working, so we learn to embrace the Herxheimer reaction as the only proof that we are on the right path. We need help coping with the swirling controversy that keeps us from finding doctors who will treat us and insurance companies who will pay for long term antibiotics. We have lost organ functions, careers, and have spent countless amounts of money and driven/flown thousands of miles seeking treatment. We have been told we have lost our minds, and many of us have worsened because of misdiagnosis which kept us from the treatment we really needed: Fibromyalgia, MS, ALS, Lupus, RA, ADD, ADHD, OCD, to name a few. This disease is called the great imitator because it looks like so many other things. Misdiagnosis is a very dangerous thing. Many of us have died.
I travel 260 miles round trip every 4 weeks to see a doctor in another state because he is the closest one to me who will treat my illness. I have made a lot of progress, but I have recently had a setback due to an allergy. After 10 days off of my treatment I was filled with returning nerve and joint pain, mental confusion, and despair. I have become reacquainted with my cane, and I try to not need anything upstairs at home until it’s time to go to bed. Stairs only make everything worse. Although I am not happy with the setback, I am back on treatment now and hoping to get back to where I was. The thing is, this was a good experience for me and for my doctors because it validated the path we are on with my treatment. There isn’t a blood test that tells us really. All we have is how I feel. It isn’t only the disease process that is exhausting and draining our energy. It is the stress and tension created by the fight between two sides. It is the desperate search for a doctor who will treat and then finding the money to pay for it (most Lyme doctors don’t accept insurance). It is the countless miles traveled to doctors who will help us. It is the willingness to try unheard of remedies out of desperation and then worrying about whether or not we should have. It is the worrying about our children, and wondering if they, too, have Lyme because we didn’t know we had Lyme when we had them. THEN, on top of that, it is all of the other challenges of chronic illness that relate to family, finances, and quality of life.
I have used several guided imagery and affirmation CDs with great results, and every time I do I think “wouldn’t it be great if there was a guided imagery to help Lymies visualize the die-off and elimination of spirochetes, and to build inner strength for the fight of our lives… and create a sense of protection and safety amid the political firestorm that swirls around our heads?” Something to help us remember who we are… that we are not merely a walking, talking transport for teeny tiny buglike germs (this is a particularly difficult image to shake… the image of corkscrew-shaped invaders inside). Something to help us feel confident in our body’s ability to heal itself. Something to help ease the layer of pain that comes from holding so much tension in the body. Something to help us sleep, as many of us don’t sleep very well.
I wish there was a CD with guided imagery and affirmations especially for people with Lyme Disease. I feel certain it would be well received by the Lyme community. Yes, there IS a Lyme community. All we have is each other in this struggle because we have had the misfortune of contracting a disease that the typical doctor does not see because their governing board says it doesn’t exist. You will never meet a group of people more supportive and willing to help each other with this perplexing and devastating illness. Because Lyme is "the great imitator" we are like many, but unique in that those who we are like are unlike us. If we tried to listen to every guided imagery CD that touched on an aspect of our illness we wouldn't have time for anything else.
We, along with our Lyme doctors, are the pioneers. We really need some help here. Something to help us remember that we are "held in the hands of God, and we are perfectly, utterly safe" (Belleruth Naparstek).
Donna Falcone, New York