As time passes this gets longer … read the stuff in bold if you want the really short version. Also, I will begin with a brief visual summary of my experience.
10/4/06 My dog came down with acute lyme paralysis. I may have been bitten at the same time. I have a vague memory (only remembered this in 2008) that I saw a tick walking down my leg in my bathroom and (not knowing much about the lifecycle) thought relievedly that it wasn’t full of blood and therefore had nto bit me, but no memory of erythra migrans or concrete or dated memory of a tick bite.
12/7/06 First recorded symptoms — severe fatigue; hair falling out; post-nasal drip; sore throat; swollen lymph nodes (which have continued to this day). Fatigue was especially severe for about 3 months, requiring daily naps and frequent early bed times. Doctors tested for pneumonia and mono and found nothing. Told me I probably had a virus and it would go away. However, for all of 2007 I had cold or flu symptoms every two weeks
3/07 We discovered a terrible mold problem next to my bedroom. A leak behind the wall had built this up over many months if not years.
Spring/Summer: By early april, I had neck pain and stiffness. I also had a relapse of my fatigue at the start of april, and again at the end of May. Starting in June my jaw began to stiffen up (this symptom went up and down in severity). I also developed an unexplained rash on the back of my neck for a few weeks (see below).
Early Fall 2007: New symptoms began to arise in the fall, partly precipitated by my working very hard (5 hrs sleep a night for a week) for a major paper deadline at work. First, I had three adverse events — a relapse of my fatigue; a five day period in which my jaw froze up and could not be opened, a five day period in which my neck froze up and I could not turn my head; and a period of almost 5 days in which I had shooting pains in my left shoulder that made it almost impossible to use that arm. All of my previous symptoms continued and I developed the following new symptoms: partial loss of hearing; anxiety; night sweats; increasingly severe back pain; aching in my lymph nodes. Doctors still don’t think I have anything to be worried about (virus; too little sleep offered as explanations). I insist on bloodwork and other tests.
October/November 2007: My massage therapist suggested I might have lyme disease. A CAT scan confirmed that I did’t have cancer; I had a slightly elevated sed rate and otherwise normal bloodwork, and an ELISA and Western Blot confirmed lyme (Almost every antibody on my western blot was lit up in both the IgM and IgG ). It took 3 weeks for the results to come back and in this time I began to develop clumsiness in my movements and to note increasing loss of short term memory and random word substitutions. I saw three doctors and got a full work up. All agreed that I had neural involvement. Exam findings included: Slow dilation of my right pupil; headaches (don’t remember when these developed); jittery and unresponsive reflexes in various places; fluid sacks behind my knees; sub-clinical epileptic seizures (on an EEG); normal MRI & no heart arrhythmia.
December 2007: I took one week of oral doxy (12/08-12/13). On 12/13 a PIC line was put in and I switched to Ceftriaxone (Rocephin) for six weeks. I took daily doses of this until 12/24/07. I did not have steroids or antibiotics in the entire year before I was diagnosed. During the IV antibiotic treatment, my headaches increased. My clumsiness decreased. I developed increasing light sensitivity (which is much better now), and my teeth turned black.
My symptom levels were highly variable after this treatment. For the first two months (Jan/Feb 08), I was fairly comfortable (though not my old self) for 3 out of every 4 weeks. In the second two months (March/April 08), that reversed itself. In the image below, red lines at height 2 mean I felt normal (though still slept lots); height 0 is “good quality of life if I don’t have too much to do”; height -2 means I didn’t want to leave my chair for much of the day and probably napped.
Some symptoms cleared up — I did not have any more frozen muscles. However, my memory and fatigue have been extremely limiting. Additionally, something as simple as a head cold seemed to lay me low, leading to days of extreme fatigue, pain in my lymph nodes, headaches, and so on. I believe that my symptoms were more mild in part because I arranged my life to allow for significantly more sleep than in the preceding year — from 6-7 hours with two interruptions (on average) due to the kids to 8-10 hours with no interruptions (my husband started sleeping with the kids). I always needed to be asleep by 10 and sleep for 8-9 hours unless I was in a rare very good period (in which case I naturally wake up after 7.5 hours). When I slept enough, I tended to have less frequent relapses, less pain, and not need to nap most days. If I was ill or in a bad period, I needed extra rest even with all that sleep. Also, I worked to restructure my life and job around my symptoms while also trying to identify the optimal treatment/management strategy
Summer 2008 — My symptoms continued their variable downturn. My major symptoms at that point were swollen lymph nodes (sometimes painful), some memory loss, fatigue (highly variable hour to hour and day to day), headaches (sometimes severe), back & neck pain (not as bad as before), and monthly colds (instead of every two weeks), anxiety (no change). The word substitutions slowly improved and were gone by August 2008. I developed a new symptom, occasional difficulty concentrating. Additional symptoms included some light sensitivity (better than during treatment); facial ticks (rarely); jaw stiffness (rarely); ringing in ears (less recently); nausea and dizziness (occasional);
No one I’ve spoken with could easily tell me if I had an auto-immune response or if I was still infected, so I struggled with the question of treatment. However in June 2008 I tested positive again with a western blot (IgG AND IgM). My doctors’ explanations range from “your titers may not have gone down yet” to “you were re-infected.” I took it as a sign of current infection (whatever the cause) and I went back on antibiotics, this time oral minocyclin, in June 2008. I have been on antibiotics since then and started feeling better again (more like Jan/Feb). I also developed increasing light sensitivity and dizziness. In early September I put my care in the hands of an LLMD in the New York area added Mepron (an anti-bacterial) to the mix. I also benefit from daily yoga (light exercise) and cannot sleep well if I work in the evenings.
Fall 2008 – In mid September (around the 10th) I experienced a flare up, just over 1 week before a major stress point (the CHI deadline). Instead of going away, it got worse and continued until about October 25th. It was the worst 6 weeks I can remember since my diagnosis. I experienced new symptoms (air hunger), episodes in which I couldn’t move even a finger without getting out of breath, headaches that spiked when I tried to concentrate, days at a time in which I couldn’t concentrate or think clearly, no energy to bike or even walk places, hot flashes every afternoon combined with fatigue, increasing light sensitivity, a need to nap many mornings, and many other difficult symptoms.
On October 25th, I began a new medication — Zithromax instead of Minocyclin, and I experienced an improvement within about 48 hours. In the subsequent months, my improvement was fairly steady, although I had occasional downturns (one caused by 40 minutes spent, unfortunately, in a very hot room). I had 2-3 good weeks for every bad one. However the bad weeks continue to be highly symptomatic, with fatigue, headaches, tender lymph nodes, cognitive impairements (memory; concentration) and tinnitus (just off the top of my head).
Spring 2009 — Over time I started to feel as if things were going downhill again (although the overall trend was still positive). In February, my LLMD added Ceftin twice daily to my regimen. This did not seem to cause any positive improvement, and I was having 4-6 B.M.s daily, often diarrhea, while on it. About a month later I weighed in 12 lbs below my normal since getting sick (I don’t have a scale so I don’t know exactly when I lost this weight). On March 13th, on doctor’s advice, I stopped all of the drugs (Mepron, Zithromax, and Ceftin) and started taking Penicillin 3 times a day. I am currently still on that regimen. I saw a definite improvement overall in March, including one day where I had no symptoms at all until 9pm! My pain is down, and my cognitive symptoms are less.
Summer/Fall 2009 — in June I had an unexpected and big improvement — 35 days in a row with almost no symptoms. Following that, though things were a bit up and down, I was overall much better than in the times before. On September 29th I stopped all antibiotics. Below are two charts that summarize my progress to date.
I was in remission for 6 months. In February of 2010 I began to have symptoms again. By April 2010 I had a relapse. I don’t know exactly when that ended, but I was beginning to feel better in July 2010. I have not taken great notes, but I believe I had a relapse in December 2010. I was (mostly) fine in 2011 (aside from occasional difficult days, I think), and I had another relapse in Spring 2012. In 2013 I had a relapse in March, but primarily bad for about 10 days. This seems to imply approximately yearly relapses, lasting one to six months, of varying severity.
In 2014 and 2015 I did not have major relapses, only bad days now and again. Am I over the hump?