I Have Missed You
It has been over ten months since I have blogged and not a day has gone by that I have not thought about it. To be honest, I miss a lot of what I had ten months ago. Many of you have asked what has been going on so here are the details.
Last spring I was preparing to go to the middle east. (I have so much to share from this life-changing trip. Make sure to check back for more post on that.) I was so busy getting ready for the trip I could not allow anything else into my already overbooked schedule. It was this trip that gave me a new perspective and enabled me to deal with what was to come.
My Declining Health
I returned from my trip late March, and by late April I just started not feeling well. My blood pressure was high; my heart rate was high, my neck had been swollen, I could not exercise without having to take a break every five minutes and so much more. In May, on my 40th birthday, I waited to hear from the doctor just to be told I was fine. She said I needed to go for a walk and take anti-depressants. I felt that if I went for a walk, I might actually die. I could not stand for long how was I suppose to go exercise?
The following week my arm started twitching/jerking, and my hands began to tremor. Then, I will never forget the moment, the first Friday in June at 10:00 AM, I got up from the couch to go to the kitchen, and my legs would not work. I went to walk, and it was as if my brain and legs were no longer connected. I had to concentrate on every step.
Vanderbilt – Nashville, Tennessee
Once I had gone through all the tests the doctors in Montana knew to do; I went to Vanderbilt in Nashville, Tennessee. I underwent multiple tests I hope never to do again.
EMG – Have you done this one? They shock you over and over for 30 minutes with what looks like a dog shock collar. The doctor would move it all over my left arm and leg to see how the nerves responded. Then another doctor came in and took a needle; he would find a nerve and shock it for another 30 minutes.
Spinal Tap – This was fun too. You get to lay on your stomach while they stick a needle into your spine and take out spinal fluid. You pray the entire time the doctor knows what he is doing so you do not become paralyzed.
EEG – I thought this one would be easy after the others. This test all they had to do was hook 20 electrodes to your head to monitor brain responses. What they do not tell you is that they have to sandpaper your scalp anywhere they have to put those 20 electrodes. The tech then spends the next half hour flashing strobe lights into your eyes to see how your brain reacts.
After all these tests, lots of bloodwork, 3 MRI’s, 4 CT Scans and an ultrasound, the doctors all said I was fine. All test were normal.
By this point, I had seen at minimum ten doctors. A couple told me I was stressed and wanted to put me on valium; a couple more said it was all in my head and scheduled me for a psyche evaluation. The best one was a doctor who insisted I had been sexually abused and this was my body’s way of dealing with it. I told him I had not and he would not take no for an answer.
Up to this point, only two doctors were honest and said, “I don’t know.” I respect them so much more for that.
“You Have Chronic Lyme Disease”
“You have Chronic Lyme Disease,” words I never wanted to hear, but also brought a great deal of relief. I finally had an answer and a plan.
After months of trying to find answers, I called a friend who told me from the beginning she thought I had Chronic Lyme Disease. She has had it for 20 years. I had run out of options, so I asked her to give me the name of her doctor and off we went to San Francisco to meet him.
He is amazing! He began our time with telling me why this was not psychological. He understood all of the very strange symptoms I was having. I was starting to feel hope. I did more tests, and a couple of weeks later in September, I was officially diagnosed with Neurological Chronic Lyme Disease (aka. Borrelia Burgdorferi) and the coinfection Babesia (similar to malaria).
Chronic Lyme Disease Protocol
I currently spend around 3 hours a day taking medications. Every day consists of 30+ pills, four packets of powder medication, IV antibiotics, four tinctures, and one liquid medication. I go to physical therapy where I had to relearn to walk “normal.” I still have to use a cane for balance, and I tend to trip, and a wheelchair if we need to go further. The treatment is a part-time job.
I did 56 consecutive days of IV antibiotics. I am in a break period where the doctor wants to see how I feel. The hope was that I would stay where I was or feel better. Unfortunately, the pain returned. I will start more IV treatments in the coming week. The Lyme bacteria are much like cancer cells. If you do not get them all, they continue to reproduce.
What Comes Next?
Very little in my life has not been affected by this disease. I could go on about all of the things I cannot do, but I would rather focus on what I can do. And that is to keep blogging and hopefully inspire others.
I revamped my website. It is still a work in progress. Take a look around. I am open to suggestions.
I have added a section for Lyme Disease. I plan to share how God has shown up in this mess, the controversy that surrounds Chronic Lyme Disease and other Lyme stories.
I can’t wait to share my trip with you! And I plan to revamp some older post that you may not have seen. I have a few other thoughts going around in my head too.
I Would Love To Hear From You
If you have any questions, please share them in the comments. I would love to connect and hear how you are doing. Don’t be shy.
If you want to know more about Chronic Lyme Disease, there is an excellent documentary called, “Under Our Skin.” I encourage you to watch it.
I look forward to sharing more with you.