Off antibiotics!

I can’t believe it’s been over a month since I last wrote in … I certainly haven’t forgotten about this blog or having Lyme disease, but as an academic the beginning of the semester always rolls over me in waves leaving little time to step back and reflect. Fall is especially bad because there are many conferences to travel to (I just returned from a trip) and I always submit to an important conference in my field around mid September (just before my trip this year).

It’s hard to believe how far I’ve come in a year, but as I roll through my second year since diagnosis I often find myself reflecting on where I’ve been. Two years ago I was desperately seeking a diagnosis, unsure what was happening to me, and floundering at work as I attempted to sprint through what felt like molasses. A year ago I had finally come to terms with the prospect of long term antibiotics, only to descend into one of my worst periods ever. I will never forget my attempts to submit to that same conference deadline, which consisted of hours and hours of painful attempts to look sideways at my screen as I edited the most mindless parts of my papers interspersed with occasional moments of clarity in which I would sprint away from anything that could stop me from writing with an over the shoulder request to my husband to take over if kids were involved, and dive in to do as much as possible before the pain and cognitive dysfunction descended again. In contrast, leading up to this September’s deadline, I had only brief mild headaches and not even every day, with no other major cognitive impairments. Continue reading “Off antibiotics!”

my story, treatment

Who coordinates the doctors?

Perhaps one of the reasons lyme is so hard to deal with is that it falls between specialties. Is it an infectious disease? An auto-immune problem? Are you simply sick in the head as many will claim? Lyme literate physicians come from many walks of life, and the treatment for lyme itself necessitates recovery — long term antibiotic therapy can lead to yeast overgrowth and other syndromes that may themselves cause fatigue and malaise.

So far (as of 1/1/08), I have discussed or received treatment for different aspects of my disease and its treatment from a: massage therapist, homeopath/naturopath/MD, cranio-sacral therapist, infectious disease specialist, kinesiologist and lyme literate physician (formerly family practice, now lyme specialist), neurologist, ear nose and throat doctor, and several pediatricians (to learn about whether my children could be infected and how it might have occurred). In the near future I plan to see a dentist (since my teeth have turned black, presumably from the antibiotics) and begin yoga for strengthening, stress relief and immune support.

At first, I found that I had to carry around a packet of my test results and prove to each doctor that I had lyme. I also found my spreadsheet invaluable and brought printouts of it to almost every appointment. Every one of them (excepting the lyme literate physician and massage therapist) approached me with an attitude that implied they thought that I could be one of those poor folks who thinks they have lyme when they don’t. While this skepticism is valuable in helping folks who are in that situation, it is intimidating to have to prove something rather than simply to be able to say “My doctor says I have lyme, can we now discuss what comes next?” I quickly learned which test results to emphasize when telling my history.

Which physicians and therapists/therapies should I spend money and time on? How in the world do I coordinate amongst them all so that they work in synergy instead of simply working in parallel (best case) or against each other (worst case)?


Why your Massage Therapist probably should not massage your lymph nodes

I was lucky enough to end up with a Massage Therapist who was highly knowledgeable about the variations on her chosen profession (feel free to ask for her contact information if you live in Pittsburgh). In particular, she warned me not to allow someone without proper training to massage my lymph nodes. The lymphatic system requires extremely light massage as anything else will cause the “tubes” through which drainage occurs to collapse. Only someone who has specific training, ideally extensive training, in lymphatic drainage massage will be able to do it successfully. A good place to find people with this training is the Upledger Institute, which has contact information for people who have taken courses in lymphatic drainage massage.


Finding a Massage Therapist

It is not easy to find the perfect Massage Therapist, but the journey is truly worth the effort. If you don’t find a good match, someone with a style that really works for you, you will still enjoy your massage. However, when you do find that perfect match, you will leave the massage table looking and feeling deeply healthy in a way that is hard to describe. It’s worth the effort!

My first massage happened sometime in mid-September, as a result of a recommendation from a friend that came with a gift certificate. It gave me great relief from my symptoms, and I might have gone back to see that person, had my husband not lit a fire under me to actively create a cure/identify the cause of my illness. Instead, I acknowledged that her massage had not addressed my issues at the level I hoped, and I set out to find the perfect Massage Therapist. She did not press and hold on areas that needed release (a technique I had become familiar with during a previous period when I needed massage and knew to be more effective at reducing knots for longer). Also, she was uncomfortable massaging my lymph nodes, something I thought I needed at the time (a mistake).

My next recommendation came from my MD/homeopath, for a highly experienced woman who was even willing to come to my home. She came to visit at the very beginning of October, and gave a wonderful massage. Still, I felt that the deep, lengthy pressure I was looking for was not present. Also, she was willing to massage my lymph nodes, and the next day they were sore. I kept her number, but continued to search.

My last recommendation came from a colleague at work. My colleague had apparently told her Massage Therapist about me before I called, as she took the time to ask a number of questions during our initial phone conversation. In fact, she diagnosed me just during that conversation! In person, her style of massage was a perfect fit to my needs, and I continued to see her at least once every 2 weeks from my first massage with her on October 9th until the end of December. Her ministrations helped to relieve my symptoms and encouraged my body to heal during the peak of my illness. Like my first Massage Therapist, she refused to do lymphatic drainage massage. However, her refusal came with a clear explanation of why, and advice on how to find someone who was qualified to help. In addition to giving excellent massages, she was a good listener and gave advice (only) where she had the knowledge to be of help. I am so lucky to have met her.