Thursday, October 09, 2008

Screaming For Antibiotics, our Lyme Hell

Leo's younger sister Sydney most likely has Lyme. Although I've been immersed in her illness only since the beginning of September, it feels like ages. It's been very scary, a chronically ill child, not sleeping through the night, not knowing for sure what the hell is going on. But, it's been day 4 on Amoxycillin, and she seems like she's slowly getting better.

The second week of school she fell ill and stayed home all week with flu-like symptoms. My instinct told me this was something bigger than your run-of-the-mill illness. She had a fever that hovered between 101 and 102 for 5 days. It would break during the day, tricking me into thinking she was better. Her complaints were a pulsating frontal headache that would travel like a band around her head. A sore throat that felt like "sticks" inside. A sore chest, a stomach ache. Most bothersome were her arm and leg soreness, and neck pain. At this time she had no rash and no joint pain, the old school symptoms of Lyme. My instinct thought Lyme! I had heard of so many people with "atypical" symptoms that turned out to be NORMAL symptoms of Lyme that were like Sydney. My doctor said abdominal symptoms are not Lyme. I just stared at her, not starting a fight just yet. My doctor would only order a strep test that eventually came back negative, chalking it up to some other illness, probably viral.

Sydney got better after 6 days of being very sick, and I thought I was out of the woods. Ah, but what came FROM the woods.....
After a week of feeling better and no facial tics I was elated. I thought perhaps this virus pulled out whatever was the cause of her tics. But, slowly her arms and legs were sore on occasion, but then would go away. I thought maybe she had a small relapse, or maybe the virus was still making its exit. Getting worse and worse, all of her flu symptoms came back along with some of her facial tics. I felt overwhelmed and very panicky. My homeopathic remedies that once kept these symptoms at bay were no longer working.

As luck would have it I went to a Lyme seminar and got educated. Good timing, it was in my book for weeks. I was shocked to learn that within traditional western medicine there are two hotly debated camps about Lyme. One camp holds the original doctors that once thought Lyme was viral and were Rheumatoid Arthritis specialists. Their symptom checklist is very narrow, the bulls-eye rash, swollen joints, high fever. A short round of antibiotics does the trick, one-size-fits-all. This is whom the insurance companies and the CDC back because they don't want to pay for all the Lyme patients or their very long rounds of antibiotics. I thought hmm...., this must be the camp my pediatrician is in.

The other camp includes the chronic Lyme patients, the missed patients that went undiagnosed and untreated for sometimes years because they had different symptoms - migraine headaches, malaise, chronic fatigue, mental symptoms, psychiatric symptoms, and all of my daughter's symptoms. There it was on the list in black and white - abdominal pain, and even tics!

I also realized there were major arguments about testing instruments, and the CDC's survey test is what many doctors believe to be the accurate testing instrument, the Western Blot. It is actually not designed for diagnosis, but it's still used. Just crazy because it misses so many people. It also doesn't help that the spirochetes, the Lyme bacteria, are evasive and hide deep within the tissues. Antibodies are not always present, the bacteria change their coating, they make spores, really difficult creatures to catch.

I couldn't believe it. Here I was, an Autism mom that is so used to fighting traditional medicine. But now, I must figure out and fight within traditional medicine?

Realizing I was under the gun, I quickly went to the pediatrician that spoke, and she assessed my daughter and ordered a battery of testing from the "right" lab, IGeneX in Palo Alto, CA. I got on the phone and online, and after a week I read the latest book on Lyme, "Cure Unknown" by Pamela Weintraub, a science writer, a mom of 2 boys with Lyme, had Lyme herself, etc. Always the moms that figure this stuff out isn't it?? My first line of defense was to contact my Autism support group, the BEST group of moms I know, for their advice. Of course they came through and had the best info. Many kids with ASD have had Lyme, and have had these "atypical" symptoms that I found are NOT unusual at all. I don't know what I'd do without their support and caring. They email me to check on me, and I'm forever grateful.

I must admit that it was disappointing to see that I could not help my daughter with homeopathy. It's my passion, what I've been studying, and our first line of treatment for illness for years. In fact, Sydney has never been on antibiotics and rarely goes to the doctor because we've been able to treat her with remedies at home (with the consult of our homeopath). But, I must move on, and as much as I dislike the side-effects of antibiotics, they are really needed in this case. I feel guilty, but it's not logical. At least we know the damage, and I am giving her lots of probiotics and other support, including drainage remedies that are homeopathic.

Tic toc I am waiting for the results to come in. The irony is that I'm hoping for a positive test. Her CBC results were normal, so if it's not Lyme, we may have done the tests too soon or it could be something else. Scary. I hope I'm not in the position to where the meds don't work and I have to change them or fight for longer treatment. I'm working on finding an infectious disease person in my area that is willing to treat kids. Many of them have been sued or investigated by the CDC for their treatment of Lyme, so they've closed shop or moved. To think that peds give out antibiotics for so many things that aren't necessary like your garden variety ear infection, but when it comes to a major full-body infestation, you must beg and scream for antibiotics. You must find the right people, and like making a drug deal or something, figure it all out and try to get it covered by insurance.

The good news is that I know how to fight and I know how to research, the sliver lining of Autism.


Artemisia said...

Oh my goodness! Any results yet?

I still expect doctors to be better informed than they are, when it comes to physical ailments. SO disappointing, but yes, the silver lining in autism is our hard-won ability to buck the doctor.

Hope everything turns out well. Lyme's a bitch.

Ashley loves Leo said...

Sydney tested positive for one of the key proteins for Lyme. Her other testing doesn't indicate any of the coinfections, but we'll see more detail when the more comprehensive testing comes back from IGeneX, the "right" lab.

If we had stayed with our original pediatrician, she would've tested negative with no answer.

Definitely a relief to know. Her symptoms are the same, so it's pretty heartbreaking.