Hi everyone -
Apologies for the novel ahead! I’m new to this group. I am 35 yo female living in NYC. I was diagnosed with Lyme last week based on two tests administered by two different doctors (neurologist and osteopath) and interpreted as Lyme by a Lyme literate infectious disease specialist. I’ve been trying to do a little research on my own because I am terrified to start antibiotics, and am not really sure if I actually even have Lyme.
Background: I developed atypical trigeminal neuralgia during my pregnancy in 2014 and the pain has been with me since - 90% on my right side/mandibular branch, but feels like it might be starting on the left. I also developed hypothyroid around this time. I had pretty bad postpartum hair loss which was starting to grow back and then started falling out again in huge amounts in 2016. My hair is about 1/3 the thickness it used to be. I am also pretty exhausted all the time and have anxiety/depression and major irritability but I also have a toddler…so, thought that was just normal. I also developed intermittent knee joint discomfort over the last 6 months, but it’s more annoying than painful. Lastly, I sometimes get super painful one second shocks/jabs in my eyes…but this is rare. When the jaw/gum pain started, my C Reactive Protein was through the roof and stayed that way throughout pregnancy, but is back within range now. I’ve had a million x-rays and seen dozens of dentists, oral surgeons (even had a tooth extracted) and endodontists…as well as neurosurgeons and neurologists. An MRI shows an artery in close proximity to trigeminal nerve back by the brain stem, but they don’t think that is the cause. Most bloodwork is w/in range, except I’m folate and vitamin D deficient and IgE serum is elevated.
My Lyme test results are as follows:
From Stonybrook Labs:
Lyme Serology, Serum is .120
Borderline cutoff is .113 and reactive cutoff is .143
Lyme WB:
IGM Bands 41, 18, 34, 37, 93
IGG Bands 28, 41, 58, 93
From Quest Labs:
IGM Bands 23, 41
IGG Bands NONE (they looked for 18, 23, 28, 30, 39, 41, 45, 58, 66, 93)
I also show IGG reactivity for Babesia.
I do spend a lot of time outside at a relative’s lakehouse in the catskills and have spent many weekends in Fire Island - I know there is a lot of tick activity in both places, but I’ve never seen one or had a rash or acute symptoms – though several of my relatives have been bitten at the lakehouse.
Both the osteopath and neurologist thought the results were ‘interesting’, but didn’t feel comfortable trying to interpret, so I saw the ID specialist who wants me to start a course of Doxy for 6 weeks. Apologies for the crazy novel, but I just really don’t know what to think. I would do anything to get this figured out, but I am super skeptical. If you’ve read through this whole post and have any advice/insight to offer, I would be so grateful. I’m so confused. Many, many thanks in advance!
