Below are my notes on specific indicators from the post “Jentri’s Big List of Indicators, with Links.” They include my own experiences and observations and items I remember from the literature that I have no citation or outside link for. Therefore, everything in this post should be considered anecdotal. The big list also has links to outside sources, the verity of which must be assessed by the user.
Cold hands and feet in a warm environment: I have perpetually cold hands and feet, but it is hard to say how much of that is a Lyme indicator because I’ve always had cold hands and feet, even in warm environments. However, I believe it possible that this has gotten worse over the years. Like many chronic Lyme symptoms that go on for years, there is no way to tell if this would have been any different had I not had chronic Lyme.
Ringing or buzzing in the ears (tinnatis): This is one of my longest standing and earliest untreated symptoms, as well as one of the most frequent I have heard from other Lyme patients. When I first began to notice it, I ascribed it to the fact that I had recently begun playing music with a rock band. I figured it was the new increased time around turned up amps. However, there was no correlation between rehearsals and the ringing ears, no increase during or immediately after rehearsals. The ringing would appear in perfectly quiet times related to nothing whatsoever, as far as I could tell.
Lyme symptoms being intermittent, I could go for months without experiencing this symptom, then have it off and on for months. Gradually, over the years the frequency of periods increased and they got closer and closer together. I complained often to doctors, but none had any suggestions for alleviating it. Sometime during my Lyme treatment, I also developed clicks in one ear, again related to nothing obvious. The ringing now occurs each and every day, comes and goes, is more likely to occur in the afternoon or evening or when I’m physically or mentally tired. The clicks have disappeared for the last few years. The ringing is bad enough that it interferes with my hearing in a crowded room or watching something with problematical audio on television, such as old movies or shows on BBC with actors speaking rapid British. No one has ever been able to help me with it, though I confess I have never tried any of the homeopathic remedies because I just can’t make myself believe in homoeopathy. For television watching, I do use excellent wireless headphones and that helps some.
Sound sensitivity: It seems counter-intuitive to speak of both hearing loss and sound sensitivity in the same person, but when I had my hearing tested and was denied a hearing aid prescription for MediCare, the audiologist explained to me that the two things can go together. She was not speaking specifically of either due to Lyme disease. My sound sensitivity is so severe that when maintenance comes to my apartment for its annual inspection, I insist on being warned when they are going to test the smoke detector so that I can leave the apartment for a few minutes. If I set off the detector by burning a pot, I cannot bear to press the reset button and hear it go off. I made a special appeal on the basis of being disabled to have a smoke detector with a battery guaranteed for 10 years so I will never hear the chirping the regular ones made when the battery was getting low (especially since they did it in the middle of the night and there was no way to turn them off.)
My sound sensitivity for certain sounds is so severe that I had the horn on my mobility scooter disconnected as well as all alarm beeps because the high pitched sound of both were unbearable. I don’t know when this symptom first appeared, but it was sometime before I was diagnosed. I watch television with my remote in my hand so that I can immediately hit the mute button if an unbearable sound–loud, high, horror movie screams, repetitive–should occur. I have found nothing that can be done about it but to try to control my environment so that I hear upsetting sounds as infrequently as possible.
Sudden sound may cause falling or retching: see “sound sensitivity.” I have never actually fallen or retched in response to sounds, but I am what other people have called extremely jittery. At one job, I annoyed my boss by rearranging my office so that my back would not be to the door–not so that he could not creep up behind me and stealthily see what I was doing on my computer (his accusation), but so that no one could creep up behind me and make a sound that would cause me to jump. You can see how Lyme disease might make you look strange enough on your job that you might get fired, as I eventually did. Just a normal knock on my door will startle me unpleasantly, which is why I have a sign on my door that says, “Don’t knock if you don’t know me. If you know me, you know you should have called first. Never knock or call after 3pm.” People call me, I’m expecting them, I’m watching for them so that I won’t have to hear a sudden door knock.
Sudden sounds will cause a wave of nausea and heart pounding out of all proportion to what a normal person experiences. I have no difficulty at all believing that other Lyme patients could fall or retch in response to sudden sounds or that I could in the future.
Ear pain: About a year or two after what I know believe was my first infection, I experienced severe internal ear pain in one ear. There were no other symptoms I was aware of at the time, no congestion, nothing suggesting an ear or respiratory infection. It was just plain agonizing pain. I took over the counter pain medication for several hours (can’t remember what) but it had no affect at all on the pain. My husband took me to the emergency room of the hospital in the town where we were visiting, but the staff could find nothing that would explain the pain and treated me as if I were faking pain in order to get drugs–an experience I had several times after that and one with which longterm Lymies are familiar. After a while, it went away. I now believe it was an early Lyme symptom (early for me, not early as in early-stage Lyme.) I have not experienced a similar pain since.
Unexplained weight gain: Once I began attempting to diagnose myself and suspected Lyme disease, weight gain was major indicator for me. I have always been skinny to the point of emaciated, descended on one side from the kind of country people that get called “Stringbean” a lot, though genetically, my mother’s 5’2″ height cancelled out my father’s 6’2″ height. I ended up a half inch taller than the average American woman non-immigrant woman at that time (5’4.5″) but built like my string bean father. In college, I weighed, at the lowest point, 89 pounds. I was taking a full load and working half-time and eating badly. i was forced by bad health, among other things, to drop out, after which I went up to 95 pounds and stayed there until after my first pregnancy, when my weight settled at 100 pounds. After my second child, it went up to 110.
The great weight jump came after what I now believe was my third infected tick bite, though now that I know that any tick bite can bring on early symptoms in a person already infected, my only clue on that is that I got early symptoms and then a whole lot more late symptoms. At that exact point in time, i was leaving for graduate school in Pullman WA. When I started gaining weight beyond anything I had ever experienced before, I attributed it to being confined indoors over the winter because of snow and eating too much fast food because I was again taking a full load and working half-time. Since I was accustomed to being too skinny, I actually enjoyed gaining the first 10 or so extra pounds.
A second great weight jump was not so much fun. In 1994, I was hospitalized for 3 days with what was then diagnosed, by process of elimination, as Hepatitis A, but which I and my Lyme doctor are now certain was Lyme hepatitis, or Lyme imitating hepatitis or however one prefers to apply semantics to this scenario. When I came out, I had lost weight because I had been pretty much unable to eat for weeks, but now I craved fats and sweets and had zero experience in worrying about weight gain. I gained weight rapidly and by the time I was finally diagnosed in 2000, I weighed–its hard to believe it–152 pounds. It is impossible to say what role menopause played in the second round of weight gain. After treatment and 12 years of a rigorous diet and holistic living program, I now weigh 142 pounds, my weight seems to be stuck there, but I do believe that much fat has turned to muscle from doing aqua-aerobics–vigorously–three times a week.
To my own story i can add that many, many of the people who contact me for assistance experienced sudden and unexplained weight gain correlated with the appearance of or increase in other late-stage symptoms, after a known tick bite with rash perhaps years before.
Anxiety: Amid the welter of neurological and mental symptoms that Lyme disease can cause, anxiety becomes almost too subtle to notice, or at least it was for me. If one already has psychological problems before the Lyme disease, the task of identifying new ones or increased ones after Lyme infection is that much more difficult. If one is a sociological wild card on top of that, and thus has numerous good reasons to be generally anxious, anxiety is not going to be the most useful of diagnostic signals. (See my paper “Facing the World With Lyme Disease.”) I had already seen a psychiatrist for six months when I got what I believe was my first dose of Lyme disease. I had been suffering from severe nightmares, insomnia and depression that I now believe can be attributed to PTSD from my scary childhood.
However, that being said, I can say that once I was diagnosed and treated for Lyme disease and that treatment began to separate out my Lyme symptoms into distinct categories, rather than just one big lump of misery, I did have one or two experiences I am willing to call anxiety attacks. During the period after I had diagnosed myself but had not yet found an LLMD and gotten officially diagnosed, I was seeing non-LLMDs for my bewildering array of complaints. One of these prescribed Elavil for insomnia. A psychiatrist I saw briefly changed that prescription to Trazadone and a later doctor changed that to Ativan when the Trazadone was no longer working. All of these were prescribed in the lowest possible doses, helped with the insomnia and, I believe, may have lowered the general level of my anxiety–expressed mainly as hypervigilence and worrying.
I am still very prone to anxiety but am now able to recognize it and have developed strategies to deal with it other than medication beyond what I take for insomnia. I would describe it as an inability to stop worrying about things I can’t do anything about right at this moment. One of my strategies is to take some kind of action, any kind of action, against whatever I’m worrying about, if possible. I have no compunctions, for instance, about making repeated phone calls to get the information I need to help me stop worrying. You said next week? When, next week? I want the date and time and the phone number of the person to call if it doesn’t happen. I don’t care if you’d have to go ask your supervisor, or check with the whatever, please do it, I need the information.
Abnormal number of floaters: Floaters are black dots or lines that you see when looking at a blank area, like a wall or the sky, that move with your eye. The are caused by the breakdown of the vitreous humor, the gooey part in the center of the eye. They can be caused by a number of things and I’m sure I had some as a child that later disappeared. They don’t hurt or especially interfere with eyesight, but they can be annoying.
When I read that an abnormal number of floaters could be a sign of Lyme disease, I had no reluctance to add that to my list because I had had an optometrist spontaneously remark to me, just before the serious collapse that inspired me to research Lyme disease, that I had an “unusual number of floaters,” more than she had “ever seen in a person my age.” She had no explanation for it and neither did I at that time. She looked young to me, it was hard to say how long her career had been, how many patients she had seen, how large was the sample to which she was comparing me. Searching for things unusual about me medically that were also characteristic of Lyme patients, I decided to pursue this one further.
The next time I saw an optometrist, maybe a year or two later, with my not having noticed any decrease in the floaters, I asked him if I had an unusual number. He said no, not for my age. I told him what the first one had said and he said she was wrong. He referred me to an ophthalmologist for blurry vision he could not account for and I asked both that doctor and his assistant, who did an intake exam. The assistant said yes, the ophthalmologist said no. There you have it. Not unsurprisingly for Lyme disease, the doctors disagree and I can find no reference that says at age X, Y number of floaters are normal, but I’m going to believe the first optometrist because I’m a social scientist and I trust my own ability to assess the motives and competence of humans I encounter. What else can I do?
Uveitis: If I had uveitis, I was not aware of it at the time, though I experienced many eye symptoms, including swelling of the orbit, red and irritated eyes and floaters, from the time I believe I was first infected until the present. Many of these I attributed to hay fever, which I had already when first infected, unless I was infected still earlier. It is certain that my hay fever got much worse when I moved from Berkeley to the country and then much, much worse after I was infected for what I believe was the first time. How related the eye symptoms are to the hay fever is unclear, since after a certain point, my eyes were irritated whether it was hay fever season or not. What is certain is that many years after I moved back into urban settings, years after Lyme treatment, one of my optometrists commented that he could see healed uveitis scars in my eyes and that I do have both floaters and cataracts, which can be caused by uveitis, among other things.