Advice from someone on the other side…

I noticed when I was pregnant that there were suddenly a lot of pregnant people around. Funny how, once I had my first child, I saw many fewer pregnant ladies, but a whole lot of moms and dads with strollers. Now that I have lyme disease it seems that everyone knows someone who has a relative or a friend or … with lyme disease. The first two didn’t surprise me. This does. Makes me sad … but has turned out to also be very valuable. I found my doctor in NY because a colleague of mine had had it (turns out more than one had). I learned about the possibility that my (sub-clinical) seizures are caused by it from a friend of a friend. And so it goes.

Most recently, a former student and friend told me that he had an aunt who had recovered from lyme disease. He put me in touch with her, and she shared her thoughts in this gem of an essay (posted with her permission, and followed by my further questions and her response).

First, let me introduce my self. I was the California Statewide Tick-borne Disease Program Coordinator for CA State Department of Public Health (old name was Health Services) from 1992 to 2005. During my 13 years tenure there, my job was conducting the statewide tick-borne disease surveillances (including Lyme, Babisiosis, Erlichiosis, Bartonella), investigating human cases, working (collecting data) with local health departments and mosquito and vector control agencies and managing the statewide tick database (surveillance and disease testing)….etc.

I was bitten by a nymphal tick and infected with Lyme while investigating a possible Lyme case up in the high desert (the place was not known for Lyme) in 1999. To make a long story short, when I got infected, I was no difference from anyone else ~ a very bumpy ride, and experienced very complicated treatments. I had 9 ½ years of antibiotic treatment (Doxy, Zixothrmax, Biaxion, Rocephin-IV, Leviquin……etc.); and for a good of 6 years I was taking a combination of 3 different antibiotics (my monthly drug expenses was over $1500). Even with early treatment (2 weeks after I had the EM), my symptoms was not getting better after the initial treatments, as a matter of fact, my worse symptoms occurred during the treatments in 2001-2005. However, fyi, I stopped the antibiotics only about three months ago.

Most of my problems were fatigue, short memory loss, photophobia, smell and taste abnormality, nausea, vertigo, motion sickness, word reversals, words finding difficulties, and special disorientation (difficulties of judging distance, bumping into things, dropping things); as for the typical arthritis, I only experienced about 1 ½ years. Sounded like you’re having the “Neuro Borreliosis”, I would highly recommend you to read Dr. Brian Fallon’s work on Neuropsychiatric Manifestations of Lyme Borreliosis (Psychiatr Q, 1992, 63:95-115). [Editorial note: you can view that essay on the lymenet library and it is a great read]

I have been in this Lyme business for over 20 years, and I have seen enough Lyme patients never getting any better. There were many many reasons (political, personal, mis/delay diagnosis, no literate treating physicians, short term insurance coverage…….etc.) contributed to the failures, and I don’t believe anyone can come up with answers or solutions at this time. I’m sure you’ve read a lot of articles and books in finding a solution for your illness, and probably formed some opinions how you should deal with your Lyme. Nevertheless, there are several important things that I would like to bring your attention:

1) Take charge of your own illness

2) Aggressive treatments are very important; most of my Lyme friends had long term antibiotics got over the illness including myself

3) Trust your treating physician (if you can find a good one); the process usually very slow, long and bumpy. Before you feel better, you’ll have many low/worse days

4) Boot up your immune system; any holistic approaches will be helpful

5) Keep a positive attitude ~ always believe you’ll overcome the illness; mental state can be very negative at your not so good days

Hope, I answered some of your questions. Let me know if I can be of further help!

My answer: Thank you for writing to me. 9 and a half years sounds like a very long time to someone who used to avoid antibiotics like the plague, but I have been on them now for 2 months, so that boat sailed in any case. How do you know you are better? 3 months without after 9 years with sounds like such a short time — do you worry about a relapse or anything?

Great questions! Likewise, I was one of the persons never into chemicals (drugs, smoke, pain killers…). The only bad thing I did was one cup of coffee/daily during the weekdays in my adult life. I did worry about the liver damage and other problems, however, after one or two years of antibiotics, my symptoms did not go away. I did have my good days, but my bad days kept recurring. Since I have met hundreds of Lyme patients at work and at the support groups, I realized a very high percentage of the Lyme patients who relapsed due to insufficient antibiotic treatments. In my 9 ½ years infection and antibiotics, I managed to keep a full time job (I did take a two-month sick leave while I was on Rocephin-IV and I used up 4 ½ months of sick leave that I accumulated through the years) and lived a pretty normal life. Nevertheless, I noticed the constant stress to hide my problems (especially short memory deficit – could not conduct a meeting because I did not remember what was said two minutes ago….) in 2003 and 2004 may delay my recovery and I decided to take an early retirement in 2005. After 6 months of not doing anything at home, my health took a giant leap. As such, I returned back to work in March of 2005.

Yes, when your body was doing well, you’ll feel the difference immediately. Attached was a symptom chart, I did check marks everyday for seven years. My table used to be covered with 85% of the marks from 1999 to 2005. Right now, I only have one or two every two weeks! Highly recommend you to use this table; it’ll give you a very clear picture of your illness (good, bad or worse) ~ it also gave me a good justification why I needed the antibiotics (paid by my insurance). FYI, I continued my antibiotics at least 6 months after I became asymptomatic. [editorial note: here is the lyme symptom chart she was referring to. I am trying it out this month and it seems more comprehensive than my previous approach. One big difference is that I fill it out on paper instead of online. I may enter some summary statistics for charting later if needed.]

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