My Lyme Story by Dian Greeno
I am on this fitful, terrible journey with many, many others. I have tried many treatments, like so many others, and just want to share some of what my journey has been, hoping maybe someone else, too, can find some help from my story.
As I look back, I can’t help but wonder just how long these bugs have haunted me. As a child, I remember having flu-like symptoms that had no explanation. I stayed in bed in a darkened room for a week and they seemed to go away. Could this have been from Lyme?
I also had a lot of sore throats and had to take penicillin for it. I had all the normal childhood diseases, mumps, chicken pox, measles. Otherwise, I was a strong, healthy child and didn’t let things get in my way.
In my young adult life, I had three successful pregnancies with healthy children. After my third child, I had many recurring female issues, fibrocystitis, endometriosis, yeast infections, bladder infections ending up with a complete hysterectomy, several breast surgeries and two bladder surgeries. (My first breast surgery was when I was a junior in high school.) Because of all this, I was faithful to have regular checkups and testing. I took hormone replacement therapy until the big scare about it causing breast cancer a few years ago. The bladder issues continued until just a short time ago. (I believe some of my Lyme Treatments finally got rid of the bugs.)
In 1990 I woke up one morning with a black square in my left eye sight. I was treated by a top Ophthalmologist who never figured out what was causing the ‘Uveitis.’ After all the treatments, my left eye remains permanently dilated. Besides the black square, I had pain in the eye and left side of my head. The head and eye pain and uveitis would come and go for the next 26 years.
Also in the early 90’s my face swelled, eyes almost shut. Went to doctor and was diagnosed with dripping sinus’ and prescribed antihistamines and nasal spray. It helped and have had to continue using antihistamines or live with a drippy or stuffy nose, cough, and/or sore throat if I don’t. I discontinued the nasal spray. I do use a netty pot and take fewer of the antihistamines. The past three years I have developed a cough that I could only get rid of with prescription cough syrup and an inhaler. I saw a pulmonologist, had breathing tests and chest xrays with no issues. I have to say I haven’t had to deal with this issue in 2017 and have felt so fortunate that it is gone!
In 2005 my acid reflux was bothering a lot so had the colonoscopy and upper GI which showed gall stones so had the gall bladder removed. I still to this day have the acid reflux. All the doctors have had me try something for it and the only thing that seems to help is the Omeprazole. I read that it can cause dementia so I’ve tried to get off it but have to eat Tums by the bottle.
In 2006, I again had flu-like symptoms along with the eye and head pain so thought it was probably from the eyes so saw another Ophthalmologist who sent me to a specialist to confirm his findings that I had had shingles on the back of my eye. I was prescribed Predforte which I have learned since, Lyme patients shouldn’t use. I continued to have same eye issues along with sinus issues, heart burn (acid reflux), bladder pain and infections, and itching spots and variable pain spots. In 2008, I went to the Mayo Clinic, mostly for the uveitis and they did many tests and didn’t find anything wrong with me except that I had Uveitis and continued treatments with them for several years (still being treated with the Prednisone.)
Also in 2006 the inside of my left knee starting hurting bad enough that my husband and I had to discontinue our daily 3 mile walks. I have always been an active, hard-working person. Some of the past years I had spent several hours a day teaching 45 minute exercise and aerobics classes, line dancing and water aerobics. I even produced a water aerobics tape. My husband and I loved to dance and did every opportunity that we had. All of these are some of the things I miss the most.
I also started noticing pains in different locations of my body along with continual leg pains. The different pain locations I described to my doctor ‘it feels like a mouse running around in my body.’ I had an MRI on the brain, xrays, tests on the arteries, tests on the veins, blood tests and more blood tests, I saw a gastrologist, a nutritionist, a rheumatologist and others. I tried the light ray therapy, lymph wand therapy, chelation, thermography, lots of antibiotics, lots of supplements (was taking 56 pills a day at one time), had trouble thinking (brain fog), balance issues, couldn’t get out of bed by myself, had to use a wheel chair, couldn’t sleep even though I was exhausted and didn’t have any energy, was emotionally unstable, cried a lot. I was fortunate to have a loving and understanding husband and family and a God that loved me no matter what.
We had both retired in 1992, sold our home, started living in a Motor Home and doing volunteer mission work. We had a wonderful Christian family in the group we worked with and our Church family. However, my Lyme disease interfered with our volunteer work too. I wasn’t able to do my own work, let alone help others. That, too was something I miss terribly.
In 2011 I got a MRSA infection and I believe it was the last thing my body was able to take. My son and his wife had a friend that had symptoms similar to mine so put me in touch with her and she had Lyme and gave me information on her doctor. Without even testing me, he was sure I had Lyme. He ordered the Western Blot test and I had Babesia and Bart along with 8 coinfections. Before I even got back to him on a return visit, he had lost his license and sent us a list of other practitioners who treated Lyme so we chose one that was within driving distance of a family member. She too had to quit treating Lyme patients or lose her license so I again had to find another doctor. I had, in between, seen 3 other doctors. My family doctor was so happy I’d had a diagnosis and would recommend to all her patients with Fibromyalgia that they be tested for Lyme. I tried Physical Therapy Treatments three times but none of them helped at all. One of the doctors I saw had a wife who was a Massage Therapist and I’d had a few treatments from her and she recommended I ask my family doctor to write me a prescription for Massage treatments so they’d be covered under insurance. I did that and had six weeks of intense massage therapy which I think has helped some. I was also prescribed from those treatments, a Lymph machine that cost $10,000 which my insurance company paid for that I have continued using now for five years. So when I lost the second Lyme Doctor, I looked for a Naturopath. We were in AZ at the time and I liked him but didn’t feel he knew enough about Lyme to help me as much as I needed. We were returning to the Midwest and I looked on the Lyme website for a LLMD and found a Naturopath within driving distance from where we would be and got an appointment there. She uses a ZYTO machine for testing, had been treating Lyme for 17 years and said most patients were better within two years. So I gave it a try. The ZYTO machine hooks up to computer and I was able to get a device to go through my computer while we traveled and still get my testing done. My first visit to her was in April/May 2016 and by Oct/Nov, I was feeling really bad so from my appointment with her at that time she suggested I might want to look into a program she’d read about called Advanced Cell Training. I told her I’d seen them on Facebook but was skeptical but because she suggested it, I called them and started their classes on Dec 7, 2016. By mid-January my brain fog was gone, the pain in my eyes and head was gone, I got my energy back and couldn’t believe how much better I was feeling. Everyone I saw was saying, “Dian, you look so much better.” I don’t have constant pain in my legs now but I still can’t walk very much or very far nor stand very long without creating bad constant pain but am so grateful to be able to think again and not have the head pains. I hate that so many are suffering and what works for one person doesn’t necessarily work for another but after the relief I got from ACT, I wanted to shout to the world, please try this. It has helped me soooo much. I am happy to feel like being around people again. I have hope that I will be well enough to do everything again.
I wish to say to others suffering, don’t give up; there is help for you. It’s a tough road but God will see you through it if you can just trust Him. I don’t know if ACT is for everyone. I just know how much it has helped me. I continue my appointments with my Lyme Doctor and do not plan to stop those until my tests show all the disease is gone.