It’s amazing where a little personal storytelling can get you. The feedback I received last week was wonderful. I’ve had friends of friends reach out, and relatives of people I haven’t seen in 20 years thank me for writing my story and spreading the word. Thank you for reading and sharing.
I am happy to report this week finds me on the path of renewed health.
So without further ado, welcome back to…
This is My Lyme Life: Dr. Alyssa Guglielmo (Chapter 2)
Last Friday night, as I was still sorting through the emails and messages from you gracious readers, I “poetically” found a tick on my older son’s thigh. I kid you not. This tick was quite apparent, and was latched on, but not engorged and not so fully embedded that my son couldn’t pull it off with his fingers. (Granted this was only after I screamed, “Don’t touch it. I’m going to get the tweezers.” Clearly, in the mind of my almost-8-year-old, that translated to, “Please try to rip it out with your bare hands.”)
In any case, we got the still-living bugger out and into a baggie. I thought I had suffocated him, but he was still on the go. To ensure he didn’t pull a ninja move and escape the Ziploc (like an old hermit crab of ours did about a year ago when I incorrectly presumed he was dead and stuck him in a baggie inside a kitchen cabinet only to find him three days later very much alive and hanging from a plate), I smashed him with the bottom of a bowl. It still lies in that baggie, awaiting testing (it was a busy week).
That night I tapped into a homeopathic remedy recommended by a local homeopath I once consulted. I can not truly attest to its efficacy, but I have to believe in the cases where the ticks are not engorged and found quickly, it can prevent the bacteria from setting up shop. Maybe I am deluding myself, but I have now done this one time for each of my kids. The homeopath’s recommended “remedy” is Ledum Palustre 30c. The small white pellets are either dissolved under the tongue for older kids or dissolved on a spoon in water and fed to younger children. One pellet is given the night of “exposure,” and one the next morning. That pattern is repeated weekly for one month.
Interestingly, in my older son’s case, though we had never found a tick on him prior to last Friday night’s ordeal, I have suspected for awhile that he may be walking around with Lyme and/or another tick-borne disease. Here’s why.
When he turned 5, my big guy started exhibiting some aggressive behavior. He was not a mean child, but his responses seemed to be over the top and strong. Too strong. He was also becoming hyper-sensitive to scents and sounds and had some random joint aches I couldn’t be sure were just “growing pains”. We did some sand play therapy with a great local pediatric therapist who at that time was also in Shrewsbury, NJ (just like my favorite LLMD). That definitely helped temper him, but I still felt like he was having trouble.
In his pre-K class he was having difficulties sitting during circle time and hated the music portion of class. His teacher at that time couldn’t offer me much, but did suggest he may have some core stability issues. He came out of womb a great athlete, so I wasn’t buying what she was selling. Maybe if she had correlated the weak core with sensory issues and suggested occupational therapy it would have cut out a few months of angst, but hindsight is always 20-20 and we clearly had a path to walk.
It was around this time that I started learning more about Lyme Disease, and how, especially in children, the symptoms can be more emotional and behavioral, not necessarily physical. I kept it the back of my mind, and even made some calls, but at that time it wasn’t apparent to me how I was going to find a pediatric Lyme specialist AND get him properly tested. Plus by now he was in Kindergarten and the proverbial s#@t was really hitting the fan.
I was communicating daily with his teacher. He was a bright boy but he was disruptive. He was hiding under his desk and not moving from activity-to-activity with any sort of ease. One time in music class (his least favorite activity for the noise and confusion) the kids were given drums to bang on and he got in trouble for kicking a big garbage can. I can now see he was just trying to drown out the other noise by creating his own, but at the time it appeared he was causing trouble and not following the class assignment. The teacher suggested an I&RS meeting to help us get him some help, but made it clear he did not seem like an ADHD case. She wasn’t quite sure what was wrong. Neither was I. It was unbelievably frustrating.
The meeting went well but all of this got my gears turning again. I still wanted to have proper blood work done, but until I could figure out how to accomplish that, I had to address the issues at hand. My sister-in-law, an OT on Long Island, did his first evaluation and it came to light that he has some sensory processing issues, with particular weakness in auditory processing.
The first place we went for therapy was to this amazing listening therapy center in Bradley Beach, NJ. They literally retrain the brain. It’s fascinating! And they picked up on a glaring deficit, particularly in his left ear. We made headway with that program, but driving the half hour each way, in winter, twice per week with an almost-4-year-old in tow was getting old fast. We completed that program- and he was better but not 100%- so the next logical step was occupational therapy.
Our district still has ½ day Kindergarten (don’t get me started on that topic) and I didn’t think pulling him out of the classroom to have OT in school would necessarily be most beneficial, so I sought outside resources. We found a wonderful program in Oceanport, NJ and commenced our twice per week visits there, working on his core, among other things. They also provided us with a home listening therapy program to keep up with the progress we had already made in that area.
Little by little things were steadily improving at school. He was engaging better with the classroom activities and transitioning better from task-to-task. He had done so well by spring that our follow-up I&RS meeting was cancelled. Things were really looking up at the end of last school year…that is…until summer break hit.
Moving from a very structured school environment into a very hectic, loud, disorganized camp environment was a disaster. I was again talking to the staff daily and I could offer nothing but assurances that we were going to restart a program for him. Throughout all of this I had been adjusting him and doing craniosacral therapy, but not with any specific plan (sometimes we lose sight of what we have to offer when it’s closest to us!). So we upped the frequency of his sessions with me. We signed him up for a tune-up at the listening therapy center, working with something called interactive metronome to try to help him further. Come August, his nervous system was considerably calmer again, but I still felt something was missing. I was able to get him a Western Blot through my pediatrician’s office, but I knew the results would be inconclusive unless it was sent to Igenex or a similar lab, so I didn’t put much credence into that fact that only one antibody (p41) lit up, and it’s not one that is conclusive for Lyme. I racked my brain for other things I knew from my years of training, and by end of August he was living the gluten free life like his mom. This seemed to make a drastic change in his edginess. I started to feel like he was no longer poised on the brink of exploding. He was a bit more subdued, which helped everything.
We started this school year well. He continues to be gluten free. He still has some odd joint complaints and complains of nightmares nearly every night though he doesn’t come get us from them anymore. The biggest hiccup he had this year was after spring break. There were two-three weeks in school where a lot of these “Kindergarten” behaviors were back. They weren’t as evident at home, though, because there was nothing overly loud or stressful going on here. This blip reminded me that I now have a wonderful LLMD that treats people from birth to grave and I could finally know for sure if there was anything underlying his sensory issues.
This story brings us to May 31, 2016, just two weeks ago. That day they took about 5 viles of his blood and we currently await the results from Igenex (for Lyme and Babesia) and from *Galaxy (for Bartonella), along with other testing to rule out a mineral deficiency. Having learned so much since this all started, if I had to guess what may be plaguing him I would put money on Bartonella. I am certainly eager to know, but I am still doing all my normal things with him- gluten free living, not too much sugar, very limited food dyes, a good night’s sleep, lots of screen-free sports and activities, a full belly of protein and healthy fats and weekly adjustments.
If this blood work comes back negative then we know where we stand and can get him a tune-up at the listening therapy center and/or some more OT this summer. If it comes back positive, we embark on another adventure of highs and lows until his body is rid of its unwelcome inhabitants. At this point, I eagerly await the
results, but no matter comes, I know we are all in a better place to handle it.
******
I have a lot to juicy details about my own progress- and why I feel I (thankfully) progress so well- but that will have to wait until next week. In a nutshell, I believe it has a lot to do with clean eating, exercise, yoga, a positive mental outlook and all the bodywork I receive (chiropractic, craniosacral therapy, acupuncture, massage, etc.) As of today, I would say my energy level is back to normal. My head is 95% clearer. My mood is 90% better, and my joints are 80% improved. My herxes have been present but minor (and nothing a little Burbur can’t temper). Not a bad start, if I do say so myself.
I really appreciate all of you taking the time to read and follow my journey. I wish you and the “Dads” in your life a happy and fulfilling Father’s Day.
Yours in Good Health,
Dr. Alyssa Guglielmo
* Galaxy Labs have become the authority on Bartonella testing.
http://www.galaxydx.com/web/ for more information.