The article “Chronic or Late Lyme Neuroborreliosis: Analysis of Evidence Compared to Chronic or Late Neurosyphilis,” published in The Open Neurology Journal December 2012, compares late-stage Neurological Lyme disease to Neurosyphilis. The term general paresis refers to patients of untreated or inadequately treated syphilis who suffer from dementia, psychiatric disorders, and paralysis. This article considers that that neuro-Lyme sufferers might also experience general paresis and what could be causing it in both diseases.
This past winter, I became very concerned about memory problems. I have struggled with short-term and long-term memory issues since becoming sick with Lyme disease in 2006. As a matter of fact, I seem to have lost years of memories, or my brain was unable to retain memories during that time, so there are none to retrieve. Either way, this past winter my memory got so bad that I couldn’t remember anything unless I wrote it down in multiple places. It wasn’t enough to simply put an item on my smartphone’s calendar with an alarm. I was missing the alarms. I used a backup alarm system using a timer app. That wasn’t enough, either. I started writing notes and posting them on the refrigerator. I made an appointment to see my primary care physician. And then I missed the appointment because I forgot about it. When I called a few hours after realizing that I had missed my appointment, the doctor fit me in the next day (I think they realized that I was really struggling with memory problems). When I entered the exam room, the nurse gave me a simple memory test. I thought I did pretty well. When she showed me my clock drawing, it was all wrong. I got a bit scared. Because I homeschooled my children for 15 years, I had drawn hundreds of clocks. I was shocked that I couldn’t draw a simple clock indicating a certain time. Then I couldn’t remember a series of objects, or recall the names of animals. When my doctor came in she expressed concern and referred me to a neurologist. Four months later, I will be seeing that neurologist on July 17th. (There is a physician shortage in Connecticut. A lot of doctors moved out of state or stopped practicing.)
This week, I have been suffering from new symptoms, or worsening recurring symptoms. Along with chronic headaches, I have been suffering from occasional edema in my legs. It doesn’t seem to be tied to blood pressure, which is normal. It doesn’t seem to be tied to salty foods. Two days ago, my legs swelled up horribly. I have had this happen before. What was concerning was that both legs felt like they were barely mine. They felt very heavy, difficult to use, and a little numb. My gait was very strange. I have had gait issues before I had long-term antibiotic treatment, and my gait normalized after a few months after taking the antibiotic biaxin. But I have never had my legs feel like this before.
I have been exercising, trying to work in my garden, but every time I exert myself I hit the Lyme wall, a physical exhaustion that is similar to what patients receiving chemotherapy experience. It is common in those suffering from chronic fatigue.
Yesterday, after doing a little bit of watering, I experienced tremors in my right leg. I have had these previously, but along with the numbness and weakness, I was very concerned. I also have tremors in my hands sometimes (and have for years – often while typing).
I will be honest here: I don’t have a lot of confidence in Connecticut physicians to identify and treat neuroborreliosis (or any disease – the stories of misdiagnosis, improper treatment, and permanent damage are many). They typically take the position of deniers. It is safer for them (if they want to keep their network connections to insurance providers). I am, however, open to any kind of help identifying what is going on with me. I will work through the process, probably endure lots of expensive medical tests, and then continue to deal with a body that is degenerating.
I am not alone in this struggle. There are thousands of people (who are labeled as Lyme nuts because we poo poo the idea of “Post-Lyme disease syndrome”) who continue to degenerate after contracting Lyme disease. And with the CDC’s recent acknowledgement that their official numbers of Lyme disease cases have been really wrong points to a new reality about Lyme disease, a disease that has reached epidemic numbers of cases.
I have many times compared the treatment of Lyme disease sufferers to those who were denied antibiotics for syphilis during the U.S. Public Health Syphilis Study at Tuskeegee. The very idea that an infection caused by spirochetes can be “cured” with two or three weeks of a single antibiotic seems ludicrous to me, and in many cases, Lyme sufferers are denied any treatment at all. Oh, and it is concerning that doxycycline is often unavailable due to shortages and has become prohibitively expensive.
One individual accused Dr. Alan Steele, the renowned physician who is credited with discovering Lyme disease in 1976, of denying him antibiotics for diagnosed Lyme disease, claiming that he (the patient) was told that the antibiotic was ineffective in treating the disease. Dr. Steele receives public funds to research Lyme disease even today, and was a part of the debacle that was the Lyme disease vaccine that was pulled from the market because it ended up causing Lyme disease and not preventing it. When I emailed his Lyme disease clinic to ask what the clinic was using taxpayer funds for, I got no response.
See why Lyme disease sufferers who ask questions are accused of being Lyme nuts? We are called conspiracy theorists, nutjobs, Lyme crazies, and many other derogatory names. Unfortunately, history does not support the Pollyanna assertion that government and medical organizations are above board and always have the public interest in mind. Quite the opposite. When there is a lot of money to be made, lots of really greedy people do a lot of of really bad things that result in a lot of harm to a lot of innocent people. History supports this. There is a new Lyme disease vaccine being developed even now. There is money to be made still on this disease, so long-term antibiotic treatment is denied to Lyme sufferers. In the meantime, individuals like me continue to degenerate.
I will report on what the neurologist says after my appointment.
Here are some articles on what it is like to deal with doctors when an individual has Lyme disease:
Advanced Lyme disease: ‘A terrible place to be” from the Forum News Service, June 24, 2014.
Drawing the lines in the Lyme disease battle by Beth Daley, The Boston Globe, June 2, 2013/
Dying of Lyme disease: Case fatality rate nearly 100%, Vaughter Wellness
Altered mental status, an unusual manifestation of early disseminated Lyme disease: A case report by Shiven B. Chabria and Jock Lawrason, published in Journal of Medical Case Reports 9 August 2007
The Poughkeepsie Journal has undertaken the role of true journalism in the face of so much Lyme disease propoganda:
Archives – Lyme Disease
Summary of the current controversy regarding persistent infection vs. post-Lyme syndrome:
Chronic Lyme disease vs. Post-Lyme Syndrome by Johns Hopkins Health Alerts