From late August 2004 to March 2009, I was unsuccessful at finding a doctor to treat me for Lyme Disease. The doctors I saw treated me for many things they thought were ‘possible’ culprits for my health issues, but never would they listen to what I had to say about my suspicion of still having Lyme Disease.
In March, 2009, I was experiencing some unusual menstrual bleeding. Six weeks of on and off heavy bleeding, dizziness and headaches. One day, the bleeding was so heavy, I left work and went straight to the Emergency Room. It was there they found, by using an ultrasound, a fybroid tumor. It was necessary to have it removed as soon as possible.
Three days later, I was admitted into the hospital for a hysterectomy. The surgery was to be done using the Da Vinci Robotic procedure. Laparoscopically done, the surgery would only take 45 minutes with my hospital stay being no longer than 2 nights. In two weeks I should be feeling ‘normal’ again. There were a few complications during the surgery, but nothing life threatening. The fybroid tumor was attached to my uterus as well as the scar tissue from the 2 C-sections I had, causing the removal of the tumor and uterus to be more complicated.
My hospital stay was longer than any of us expected. I was experiencing terrible pain all over my body. The heavy pain medications they had me on were not helping. They ran numerous tests. I saw and spoke to many specialists. Some thought it might be CMV infection. I was ‘quarantined’ until tests proved negative. One specialist determined I had Pancreatic Divisum, a common congenital anomaly of the pancreatic ducts. I was scoped and prodded, but no definitive answers to my horrific pain. After a week in the hospital, they sent me home with no answers….only pain medication and a catheter.
I was home for three days, then returned back to the hospital because the pain was unmanageable. They continued more tests, but found nothing. They suggested more tests on the pancreas and a possible surgery to fix my pancreatic ducts. However, I didn’t believe that was the source of my problems. I weaned myself off the pain medication and tried my best to get on with my life.
I was now unable to work. Even months after surgery, my overall body pain was so severe at times, I could not get out of bed. I found myself overly exhausted, needing to sleep through most of the day and then back to bed early in the evening. I thought my symptoms were bad before surgery, from 2004-2009, now they were much, much worse. I was experiencing piercing headaches and neck pain. My entire body hurt, even my skin. Clothes that rubbed against my skin were unbearable. I could no longer wear jewelry because my skin was so sensitive to anything touching it. What was happening???
We continued our research.
Lyme Spirochetes with their 'corkscrew' bodies screw themselves into body tissue and organs.
Trauma to the body, whether it be physical or stress related, can cause the Lyme spirochetes,which were once lying dormant in the body, to come out of ‘remission.’ My hysterectomy had ‘stirred up my spirochetes’ that had been happily hiding in my body all those years. The surgery forced them out of tissues, organs, etc. now ‘spiraling’ the cork screw bodies all around MY insides. THAT is why I was in so much pain after my surgery. There was a WAR going on inside me that only a Lyme literate doctor or Lyme literate person could understand. Yet, even though I had the knowledge about Lyme disease, I was still unable to find a doctor to treat me.
The two months following my hysterectomy I put on 20 pounds. I didn’t eat much. I was, for the most part, a healthy eater. I tried to walk as much as possible. I continued working out in the yard and gardens when I was feeling up to it. But, still, the weight came on….and FAST! I was also experiencing many side effects, such as high blood pressure, from the medication I was taking for what one of my doctors thought was Fybromyalgia.
I was referred to yet another doctor. I liked her at first. She took her time, listened to me and seemed proactive when it came to my health. However, after several visits with her I mentioned again, my concerns of still having Lyme Disease. She was busy writing things down in her notes and said, “You can’t have Lyme Disease. You live in Wisconsin!” That baffled me. I can’t have Lyme Disease because I live in Wisconsin? What? I started mentioning all the things I knew about Lyme Disease. She didn’t seem interested. This was an all too familiar situation to me… a doctor ‘blind’ to Lyme Disease. I then told her that I was going to see a doctor in Waupaca to discuss Lyme Disease with him. She seemed upset, saying, “If you want a Lyme blood test, I will order one for you; but I don’t think you have Lyme Disease. Besides, you were treated back in 2004 for it. You can’t have it anymore.” I told her the blood test wasn’t necessary. Blood tests for Lyme Disease are unreliable. I went on with my ‘Lyme knowledge,’ speaking to yet another doctor ‘blind’ to Lyme Disease. I haven’t been back to see her. However, I plan on writing to her, along with all the other doctors who ‘treated’ me. A letter, not of judgement or anger, but one explaining my Chronic Lyme Journey and pleading to them that they become more educated in the World of Lyme.
"You can't have Lyme Disease. You live in Wisconsin!" Those are the words one of my doctors told me. It's long overdue that our medical community educate themselves on Lyme disease!
Many people are dying from this epidemic. I am not ready to be one of them. I have too much to live for.
I have too much to live for to give up!
