Like so many people, I eventually figured out this was Lyme disease on my own. My daughter wasn't getting any better with pediatricians. Three pediatricians later and still nothing. My instinct was still screaming at me that something was truly wrong.
Lyme seemed pretty logical to me. I began researching, reading, attending health seminars, and finally attended one about Lyme disease. I'll never forget how I felt after I circled numerous symptoms on their checklist.
I saw fear in the eyes of that last pediatrician when I stomped in and declared, out loud in the lobby in front of everyone she must have Lyme disease! I saw right then that they knew, but did nothing. Later, I would learn about the politics that prevented my daughter from getting proper treatment that could have avoided the years of suffering she experienced.
I devastatingly realized that it was up to me, not our pediatrician, to figure this out. I had to do something fast. We had wasted months, and my daughter was getting sicker and sicker each day! My research brain turned all business. I searched for kids that got better. I didn't give a crap about politics. I am not a cause kind of gal. I just blindly wanted my daughter to get better. And the way to do that, was follow that white rabbit. I spent two weeks on the phone and online connecting and scouring all over the country for people that got better. At the end of my initial search, my Better list had about 30 parents on it.
We didn't know if she was going to make it at one point. Lots of close calls and sleepless nights and months filled with pain. Protocol after protocol, doc visit after doc visit....finally it seemed this train was slowing down. No new symptoms for a while.
Then it happened. One morning during our routine symptom check, she held up her little hand, smiled, and said her fingers didn't hurt. My thoughts immediately jumped to Hering's Law from my homeopathic studies. It says healing starts from within out, from the head down and in reverse order as the symptoms have appeared or been suppressed. I remember that day like it was yesterday. Fingertip pain was the most recent symptom.
I ran out and got the whole family tested once she was properly diagnosed. My son and I were both positive. Turned out she had congenital Lyme, on top of several additional exposures while living in Connecticut. We moved across the country as soon as we could.
Lyme being the man behind the curtain, it shut us down. Romy lived with 26 excruciating pain areas all over her body - muscles, joints, literally any skin surface was painful to the touch. We almost lost her to a Lyme-induced seizure on New Years Eve at the beginning of treatment. Romy had to be carried or transported in a stroller, shopping cart, or wheelchair in order to prevent fire-like pain shooting up from her calves. This pain was so sharp and agonizing, she would scream. So, we learned her limit was about one block of walking without triggering this pain.
One day it's the deli turkey she's eaten for years. Another day it's the wooden chair she's sitting in at an appointment. Cayenne pepper, yogurt, her GF bagel. It can be anything. It's like a lone soldier randomly firing a gun in a war torn city, not knowing the war is over. That autonomic nervous system thinking the war is still on.
When relapse occurred, our LLMD went back to the drawing board. Sometimes the outcome would be to put her back on antibiotics if she was off (we had two failed attempts to take her off). Other times it would be to try a completely different protocol, or one that worked very well for a long time. Each time was a unique event, and treatment was based on Romy's history and what was presenting before us.
*Research everything your doctor says and what your kid takes.
*Collaborate with your doctor and family members over treatment.
*Don't waste your time therapy-bashing, talking semantics, and participating in negative social media.
*Use social media such as www.gofundme.com to help pay for treatment not covered by insurance.
*Recruit family and friends to help out. Tell people specifically how they can help you (Most people don't really know since they haven't been in your shoes).