DEAR DR. GOTT: Several years ago I became ill with an unknown virus. I had flu-like symptoms along with a strange twitching almost like I was shivering all the time. This progressed to full-blown myoclonic tremors and went to my brain causing encephalitis. I wound up with damage to the vagus nerve and gastroparesis. It’s been seven years and I continue to suffer from the damage caused by the virus. I had a spinal tap several months after the virus struck but it was clear so no other tests were done. It was assumed to be insect-borne as they tend to cross the blood-brain barrier.
I seem to have relapses and get worse, as if this virus is still in my system (like malaria). Is this possible? After each relapse, I seem to have more difficulty functioning mentally. Neurological tests have confirmed deficits, particularly psychomotor slowing, memory coding, attention and details. I sleep poorly and feel groggy most of the day from medications and a low caloric intake and vomiting due to the gastroparesis.
I also have autoimmune issues including Sjogren’s, Hashimoto’s and psoriatic arthritis. I have chronic pain from arthritis, spondylosis and degenerative disc disease.
I am at my wits’ end and there seems to be nothing I can do to stop getting progressively worse. Does this virus sound familiar to you?
DEAR READER: My first thought was Lyme disease; late-stage Lyme to be specific. Those who read my column on a regular basis know the symptoms of early stage Lyme and its straight-forward treatment. They also know my opinion on medical professionals who dismiss Lyme as a New England-only disease, claiming that the deer ticks that spread the infection aren’t in their hometowns, states, etc. Frankly, this is a bunch of horse pucky.
Late-stage Lyme (sometimes referred to as chronic or neurological Lyme) is, in my opinion, a very real consequence of a Lyme infection that goes untreated for months or years. Many sufferers experience balance problems, Bell’s palsy, seizures, mental deficits to include concentration and attention, sleep problems, numbness and tingling of the extremities, and more.
Now I know that there is a lot of controversy regarding this topic, with many authorities claiming these symptoms are not the result of Lyme or its related infections, but I disagree. I have received hundreds of letters from Lyme sufferers from all over the country telling me of their experiences. An overwhelming number share similar symptoms, dismissals from medical professionals and feelings of hopelessness and frustration. Some have found others in their communities and formed support groups. When physicians fail to help them, they work together. Through their own research, talking with other groups and physicians who actually believe them, many have found ways to help themselves and freely share this with other sufferers.
I’m not saying you have Lyme disease or a similar infection, but it may be a possibility. I suggest you find a physician, perhaps a Lyme specialist or a neurologist familiar with Lyme, to review your medical records and examine and test you. If you don’t have Lyme, excellent; but that still means there is something going on. Brain damage doesn’t occur for no reason you need a physician who will work with you to get to the bottom of this mystery.
