How I Got This Way — Neurological Damage
Healthy and vigorous to non-functioning, unable to remember my children’s birth dates and getting lost on the way to my doctor appointment.
In 2006, I became very sick from Lyme disease and co-infections. Within weeks I had neurological symptoms. While I should have received IV antibiotics that did not happen because of the controversy surrounding Lyme disease treatments. The IDSA declared that three weeks of oral doxycycline cures Lyme disease every single time. Period. If you are still sick after three weeks of oral doxycycline you have what they have called “Post Lyme Disease Syndrome.” They made that name up. WebMD describes three different stages of Lyme disease. I was definitely Stage 3. The IDSA recommends three weeks of oral doxycycline no matter what stage you find yourself, one of the reasons why there are so many people still very sick, and some dying. With that opening, the topic of this blog post is what to do if you find yourself the victim of the IDSA and, consequently, the CDC’s misinformation and are now a blob on the couch (or confined to your bed) who can’t remember your third child’s birth date or how to get to your doctor’s office.
I found myself in such a condition and decided to once again seek medical attention. I visited a new primary care physician and disliked her immediately. In spite of her denial that I was still suffering from Lyme disease (not possible since I had received doxycycline several times already) she did order physical therapy for me. She also discovered that I was severely deficient in B-12. Strangely enough, she did not order any kind of treatment for the vitamin deficiency (I really considered suing this woman for her poor treatment of me and later my daughter who ended up with Lyme, bartonella and babesiosis, the latter two which this doctor failed to diagnose). But I did go to physical therapy and kept taking antibiotics on my own since I was denied access to antibiotics by the medical community.
The physical therapy taught me a very important lesson. Use it or lose it. And you can get it back. I was given very simple, non-strenuous calisthenics to do with my physical therapist and at home. I was dedicated to regaining the use of my body which had forgotten how to walk properly or for very long without becoming completely exhausted. Eight weeks and I was semi-functioning. I continued my exercises for a year, committed to regaining even more use of my limbs. Sadly, although my body was getting better my brain was not. Even with the exercise oxygenating my brain it didn’t seem to make any difference. My short-term memory was pretty much gone which made long-term memories nearly impossible to create (short-term memory is vital in the creation of long-term memories). I lost a couple years of my life with nearly no memory at all of those years.
Eventually I found a Lyme-literate medical doctor, a cardiologist that specialized in treating Lyme disease, who treated me with a variety of antibiotics. The one that made the most difference was biaxin, supposedly because it crosses the blood-brain barrier. I learned later that azythromycin would have been another antibiotic that I should have taken at some point for the co-infection I had been also diagnosed with (that all of my other doctors missed, by the way), but just as my doctor was preparing to put me on plaquenil and azythromycin she stopped treating Lyme patients. The insurance companies cracked down on doctors that treated Lyme disease outside of the treatment guidelines designed by the IDSA (remember, just three weeks of doxycycline). Once again, I was abandoned by the medical community.
At that point, I decided I was done trying to find medical treatment. I pursued alternative medicine which had limited results mostly because I could not afford the supplements. I turned to fermented foods, an organic, non-GMO diet and introduced a new component to the healing process that I hadn’t considered previously: I started college. But let me backtrack a couple of years first.
I could not read a paragraph and comprehend what I was reading . . . I had extensive cognitive damage.
At the point where I was a blob on the couch, could barely go grocery shopping without fainting and extreme pain and exhaustion, I could not read a paragraph and comprehend what I was reading. I could barely write using a pen because my hand just wouldn’t work properly. I could make words but they were scribbly, I made many mistakes writing the wrong letter or the wrong word. I had lost the ability to design web pages, and subsequently my small business. Where previously I could write long, extensive emails, essays and the occasional article on raising special needs children, I could no longer do such writing. I had extensive cognitive damage. I met a friend online who encouraged me to try reading again. I took the challenge but chose much easier books than I had previously enjoyed. No more classics for me. I was probably reading at a 5th grade level. But I kept at it and eventually I could read a chapter and remember some of what I had read. It is difficult to enjoy a story if you can’t remember the characters and the plot. I kept at it.
My brain was slowly gaining more function. Now we arrive at the spring of 2013 when I started my first semester of community college, only three courses because I was not sure of my stamina and abilities. One of the classes was pre-college level Algebra. Not only was this the correct level of Algebra for me but I believe the instructor I had was meant to be. She created a graphic organizer that she used in this class that clicked with my learning style. It was visual, methodical and logical. I had committed to staying on top of all homework doing it immediately with no procrastination. I arrived home after my first day of classes, made dinner, got the boys in bed and dove right in to my homework. I discovered something amazing: Algebra stimulated my brain so much that I had difficulty sleeping that night. I also discovered that if I began my morning homework with some Algebra it was easier for me to comprehend reading assignments.
I knew that certain classical music could stimulate the brain, improving function for school children and, some claim, increase IQ. So why couldn’t Algebra stimulate the brain as well? Something amazing happened that first semester. My brain began to heal. Yes, I had made huge dietary changes. Yes, I was religious in my sleep schedule. I still had chronic fatigue, pain and a foggy head, a LOT. I still had a lot of headaches. But my brain was healing. I was so afraid that I wouldn’t be able to remember enough of any of my course materials to pass an exam. I started getting A’s on my exams and ended up with an A in each course that I took, even the dreaded Algebra (I have a traumatic history of high school math failures). I determined at that point that I would pursue mathematics on my own even if I was not taking any math courses.
Over the summer I worked in my garden, sewed, knitted socks, and read a lot. This past fall I made it through my second semester of three courses (and determined that that was my limit, at least for now) with success in each course including college-level Algebra. I woke up this morning, the spring semester beginning in less than two weeks, and spent an hour doing Algebra. I am committed to going through my two-course textbook and progressing on my own in mathematics (I have many high school level textbooks already that I can use to revisit Geometry, precalculus and even dabble in trigonometry). When reading any book I look up words that I do not fully understand (or remember), taking the time to keep them in my working memory long enough that they have a chance to make it into long-term memory. It is a lot more work than pre-Lyme, but I have found that I am regaining the use of my brain.
There is Hope — Taking Back My Mind and Body
Use it or lose it!
Just yesterday I began working through my physical therapy exercises again, simple calisthenics that work the joints and build muscle strength. At one point a couple of years ago I was walking six days a week and enjoying Pilates. But I overdid it and had a setback. I have learned that slow and easy, gentle and consistent is better than pushing my damaged body and brain. Whereas a normal person might push through the pain when exercising, I cannot do that. As with someone suffering from Fibromyalgia, my body seems to take physical pain and then magnify it over the following days. It is as though the nerves are protesting and punishing me for daring to push myself. Even learning my mental limitations has been important.
I admit that I am very much disabled as compared to my pre-Lyme physical and mental condition. But I have regained much of what was lost, and I always hope that I will continue to improve. At the very least, I feel that I am fighting off decline. For all of us, with or without debilitating diseases, using our bodies and minds helps us preserve function, preventing loss. So use it or lose it is my new motto and one that I will live by for the rest of my life.