After my second round of antibiotics in less than 2 years and countless patients suffering from Lyme and other tick-borne diseases I decided it was time to share my tale. I am hoping to inspire others to share theirs and bring awareness to this insidious set of diseases. So here you have it.
This is My Lyme Life: Dr. Alyssa Guglielmo (Chapter 1)
In the fall of 2011 my husband and I moved our family of four to Monmouth County, NJ. We found an old, but charming house on nearly an acre of land…in a family-friendly neighborhood…in a lovely town…with a LOT of deer. I thought leaving Westchester County, NY would make me feel better about ticks. Boy was I wrong.
I found the first tick on my younger son two years after we moved. It had embedded itself in his groin area, and it was a b*tch to get out. It took a serious pair of tweezers but I got it out intact, saved it and had it tested at the Monmouth County Mosquito Control Division’s Tick Identification and Testing Center in Tinton Falls, NJ (https://co.monmouth.nj.us/page.aspx?ID=2859). It did not test positive for Lyme but I knew better. The old theories that it takes 24 hours of attachment to transmit infection are being thrown out the window. New research says bacteria can be transferred at first bite. Plus these results would take a few days to come back, and I was not about to let infection set in. PLUS, this center only tests for Lyme, not the other myriad of diseases that ticks (and mosquitos) can transmit. I have since heard of a lab in Pennsylvania that does more extensive (and expensive) testing but as of yet have no personal experience with them. (http://www4.esu.edu/academics/departments/biology/documents/pdf/2013_tick_form.pdf for those interested parties.) In any case, my then just-turned-four year old went on an immediate 3 week dose of amoxicillin and thankfully he seems fine to this day.
Over time, I was learning more about ticks and Lyme and these other vector-borne diseases (Babesia, Bartonella, Ehrlichia and Mycoplasma to name to a few). I was seeing more and more cases of them walk into my office and hearing stories at the playground. Who knows, maybe on some level I was attracting them. I will never know for sure, but one beautiful October day in 2014, I decided to try a new running path through the woods near my house and a day later at the gym I found a little bastard sucking blood from my left calf. Now fully believing that ticks can spread infection with their first bite, I took immediate action on myself too. I did three weeks of antibiotics (should I have done more?) and had no symptoms of which to speak…until that winter.
I’m not going to lie. Winter is not my favorite time of year. I’m a sun worshipper through and through. I choose 110 degree yoga rooms and would rather be hot than cold any day of the week. 2015 brought a particularly rough winter to the Northeast, and I was feeling particularly off. Migrating joint aches were showing up and I was constantly exhausted. I was having night sweats on a regular basis. I had an interesting sensation in my left armpit, which after a clean bilateral breast ultrasound, proved to be some swollen glands. My scalp had a certain tenderness and my mood was shot. I had no patience for my boys and would get overwhelmed way too easily. Once I started having trouble recalling words, I knew something was way off. All my justifications- you worked out too much, you’re eating too much sugar, you’re tired because the kids are waking you up at night- just weren’t adding up. And again, because I had the revolving door of Lyme cases in my offices, I knew what the right blood work would tell me. I had Lyme.
At that time I only knew of one local LLMD (Lyme Literate Medical Doctor) in Howell, NJ so I called him up and got an appointment. I was told they could only take me in a month, so I did what any rational person would do, I cried and got on their waiting list. Either they reconsidered my plea or I genuinely moved fast up the list, but they called within a few days and I was in within a week. After an exam, a blood draw sent to *Igenex that confirmed Lyme, 5 weeks of doxycycline, a few herxes (i.e. a Herxheimer reaction- the fancy name given to experiencing worsening symptoms in the short-term as bugs die off), I felt like myself again. That is, until recently.
About a week ago I glanced down at my right thigh while stretching and found a new “beauty mark.” I picked and prodded and still couldn’t tell if was a tick. If it was, it was a nymph (a very early stage in their growth cycle when ticks pretty much look like poppy seeds). I got it out and tucked the experience securely in the back of my mind. Then a few days later I started having some familiar yet unwelcome symptoms. The wrist aches were back. My left knee. The scalp tenderness. Some brain fog. It wasn’t pretty. Then I got to thinking. Did we not kill off all the spirochetes last time? Or was this a new infection from the “poppy seed” I pulled off my leg? I was leaning towards the latter, but either way I called my new brilliant, Lyme literate doc in Shrewsbury, NJ (who sees kids too!) and she felt there was enough evidence that things were brewing and we should address it sooner than later. So we did. And today I embark on a new 6 week journey of killing bacteria that have taken up residence in my body. This time around I am armed with Azithromycin and a supplement called VitalGuard Supreme, which is still enroute. And of course I have my lemon water and parsley capsules handy to help with the detox process as the bugs die off. My Burbur drops are waiting on the sidelines for days when I herx. And we can’t forget my trusted probiotic, which I will near-overdose myself on given the amount of antibiotics I am taking.
Whether it’s Lyme, Babesia, Bartonella or any one of the vast number of tick-borne diseases out there, this little regimen should get me through. I eat well and exercise regularly, and this does help tremendously. For some, it’s not unheard of to be on antibiotics and herbals for years at a time to combat these bugs. There are so many grey areas, and so much trial and error. And SOOOO very many missed cases. I have one patient who had Lyme (and other tick-borne diseases) for 15 YEARS before she was properly tested and diagnosed. It has been about three years since that time, and she is doing well, but some damage is irreversible and her healing continues. Others have not been so fortunate. There are children out there being told they have ADHD and anxiety, when it’s really Bartonella taking over their little bodies. And it gets even scarier because these buggers can look like anything in anyone. By sharing my tale- which pales in comparison to the pain and suffering of many others fighting these diseases- I hope to bring awareness to this misdiagnosed and readily overlooked set of diseases.
Stay tuned for next week when I will review how my first week went. How the herxing went, how I felt, and how the symptoms changed…or didn’t. I may even introduce you to my older son’s case. Until then…
Yours in Good Health,
Dr. Alyssa Guglielmo
*Igenex is a California laboratory that is gold standard for Lyme and other tick-borne disease testing. Your basic labs- the ones covered through your insurance- use tests that are inaccurate and not sensitive enough. This creates an unbelievable amount of cases where people are told they do not have Lyme, but really it’s the testing that failed them and they continue to suffer. Please visit www.igenex.com for more information.