This next story holds a special place in my heart, not only because of the dear patients that were affected, but because it was my first real exposure to Lyme and other tick borne diseases.
Just after her daughter’s 12th birthday, this mother I was treating brought to my office the oldest of her three children. At first the primary complaint was back pain. We would address it, and it would somewhat subside, but never really go away. Next she presented with these headaches, and from there things really escalated. Now, knowing what I know, I have to wonder if the treatments, combined with her exercise regimen (she was an avid dancer and lacrosse player), maybe helped keep it all at bay for awhile. Or maybe the bacteria were just waiting to reach their tipping point before overwhelming her body with symptoms, and eventually, enough antibodies to reach proper diagnosis. Who knows? What I do know is that she went from a strong, athletic girl to a fraction of her old self in a matter of months. Thankfully she has a highly intelligent mother who was willing to think outside the box and seek the help her daughter so desperately needed. Thus, without further ado, welcome to:
This is My Lyme Life: Leyla
I am writing this as a person with Tick Borne Disease (TBD) but also as a mother who entered this world as a parent of a child with TBD. In September of 7th grade our school has a trip to the Sharpe Reservation Fishkill, NY. It’s a big event. My daughter went on that trip in 2009 and had a fabulous time. This was great to see, as she is usually not a great lover of the outdoors unless it involves snow and a snowboard.
A month later almost to the day she had flu like symptoms for about 3 days. No one else in the family got sick. Somewhere around this time- we don’t really remember when- she started to complain about lower back pain. We weren’t very worried, as she had just started very intensive gymnastics training (about 9 hours a week) and she would also dance about 6 hours a week. She’s a very physical kid. She would ice her back as needed. In November, near Thanksgiving, we took her to a pediatric orthopedist. He said she has a stress fracture in her spine even though he couldn’t see it in the x-ray or the MRI (we chose not to do a CT scan due to the radiation to the pelvic area). His recommendation was to stop all physical activity. Unknowingly, this is where our Lyme journey began.
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While we were driving to Lake Placid, NY, where we always spend Thanksgiving, I called my sister (a gynecologist and integrative medicine doctor) to tell her what the orthopedist said. The first words out of her mouth were “she has Lyme”. I would have fallen out of my seat if I hadn’t been belted in. We live in Westchester County, NY – a hotbed of Lyme activity and have a dog so our risk factors are high. However, remember, this is my child who does not love the outdoors.
We arrived in Lake Placid where her great uncle (an orthopedist) and grandfather (an internal medicine and pulmonary/intensive medicine doc) are and I tell them what my sister said. They completely ‘pooh poohed’ her comments. Neither of them believed in chronic Lyme and felt doctors who were treating it in Westchester County were money-grubbing quacks.
Now we are in the beginning of December, and my formerly physically active child is now vomiting and has horrible migraine-like headaches. Th pediatrician does a standard Western Blot and Elisa and shows me the paper that says “CDC NEGATIVE”. My sister sees a copy and says ‘no, she has some positive bands that are significant’. We then have another supposedly integrative doc send out to Igenex for us because I didn’t think the pediatrician would. He says “I am a 100% confident she doesn’t have Lyme”. Of course my sister saw the Igenex report and she says while not a resounding positive, it was suspicious enough in general, and positive for Ehrlichia, another tick-borne disease.
We have also, at this point, seen a neurologist who tries migraine medications, which do nothing. My daughter has missed most of the month of December in school and lies on the couch in the dark sleeping or having me hold her head. We were seconds away from the neurologist doing a lumbar puncture to relieve pressure on her brain because we incidentally found out that she has fluid in the ventricles in her brain and she could be having headaches because of this. When we got the Ehrlichia diagnosis, I canceled the lumbar puncture (luckily I did because evidently to get Lyme-like bacteria from a lumbar puncture is very technique-sensitive).
Now it is January 2010 and she starts on Doxycycline. The back pain is gone almost instantly, the headaches not so much. She’s still on the couch sleeping. We found a Lyme Literate Doctor (LLMD) in Armonk, NY who is now in Pawling, NY. He and his nurse practitioner started aggressively treating her with antibiotics. At the same time one of my patient’s moms (I’m a pediatric dentist) said she saw a Chinese medicine doctor in White Plains. We also went to him and he started her on his protocol for Lyme. Also at the same time, we started integrative medicine supplements with my sister. I was managing all 3 protocols at this time. plus 2 other children and a job!
From January to June both the LLMD/NP and the Chinese medicine doc kept saying the same thing, “this just smells like Babesia”. We couldn’t get a positive test; evidently this is a very difficult positive to get. We decided to start treating for Babesia and she slowly started to get better taking her ‘yellow paint’ and some tinctures of yam-like roots. It took about 9 months-to-a-year while treating for Babesia to get a positive lab test and Polymerase Chain Reaction (PCR), which is a test that can detect the genetic material of any kind of organism, including bacteria. She was probably finally able to mount an antibody response!
Needless to say her grandfather was having a fit. He kept telling me she didn’t have Lyme and I kept saying, ‘fine, if it isn’t Lyme, tell me what it is?” He said, “I don’t know.” Then I’d reply, “not good enough, this is working and I’m going to keep on doing it.” This man and our uncle are brilliant doctors. To go against two people with such brilliant minds and history in the medical community was terrifying. Was I hurting my daughter by missing something? Was I hurting her with herbs and tinctures? She was obviously getting better, would this have happened anyway? This definitely strained my marriage, but luckily my husband could admit it was working and he trusted my sister and me.
Somewhere along this first 6-8 months I was exhausted managing all 3 protocols and we went to Hyde Park, NY to a new doctor. This is when we really started to make progress. We discovered that she has reactive hypoglycemia that rears its head when she eats too many carbohydrates and doesn’t exercise. Fixing her diet when she couldn’t exercise was hard but fixed the vomiting. This doctor did the standard Western Medicine, Chinese herbs and integrative supplements. We really started making progress.
During this process- and it took almost 4 years to get her back to normal- I was diagnosed with Lyme, as were my other two children and my husband. My eldest daughter’s case still looks different than the rest of us. My husband and I have kept trading some more minor tick borne diseases back and forth which makes me think it’s sexually transmitted. But at 50 years old with a husband who has had a vasectomy I am not about to start using condoms! My younger two kids tend to respond very well to treatment and now we just use homeopathic remedies to keep their Lyme symptoms in check. I now realize when I treated my son for Lyme, I was probably treating PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections), but that’s a story for another time.
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I have more stories to tell of our Lyme history over the last 7 years but those are for another blog entry. My eldest just finished her first year of college and is a dance major. She learned at college that she couldn’t party 3 nights a week or she will be sick in bed the next week. She still tests positive for some things but they don’t seem to affect her. When necessary, we do a course of antibiotics with our new doctor in Westchester County and that seems to calm things down.
She knows she can never be a blood donor, marrow or organ donor because of the Babesia. I worry about her having children (thought I don’t think she’d ever nurse a baby so I’ve taken that off my list of worries). I’ve given the college speech about condoms at all times both for her and because I worry she could give someone else Lyme disease. We just don’t know right now.
I still hold my breath when I think she’s sick. I’m terrified of giving her a meningitis vaccine booster and having her wisdom teeth extracted because I don’t know what will bring on a relapse. I can always find something to worry me.
P.S. I ended up giving her the Menactra (meningitis) booster one Friday this August. I called the pediatrician that morning and we decided on just the booster, not the new Meningitis B vaccine. I thought it would be better to finish one protocol (with a vaccine we’ve had no trouble with in the past) and have it fully active. Long story short, she passed out about 5 minutes after the shot; they had to call me to pick her up; she was groggy all afternoon. I was sure I had killed her chances of being normal. She spent the weekend doing detox stuff, was good on Saturday, had a headache on Sunday and was fine today. I’m still not sure if we did anything bad, but we just have to keep going forward. What would I do if I didn’t have something to worry about?!