So, Really, How Are You?

I’ve been re-posting our lyme stories to bring new friends and readers up to speed with our family battle against tick borne illness and co-infections. Jim, Dylan, and I have spent the better part of two years recovering from what became a family fight against Lyme. People ask ALL OF THE TIME how it is that three of the five us of were diagnosed with Lyme, at times in disbelief, and at times scared that the same thing could be happening in their own homes. We’re still working through that very issue, but rest assured that we are NOT unique. We vacation together, we share the same pets, the same genetics, the same toxins, etc. More on that later.

As I wrote here, Dylan was diagnosed with Lyme last spring.  And as soon as he stopped swimming, his health immediately improved. The combination of long hours, stress, and wet sinuses meant that he battled constant mold and respiratory issues that plague many Lyme fighters with the mycoplasma co-infection. The torn groin – weakened by the tick that had made its home in the tendon – has healed and is no longer a problem.

morethanwhimsyI’ve learned so much from my 19 year old “teacher.” Dylan tackled his studies and new direction with a resilience that we are so proud of. It wasn’t easy, but he emerged relieved and proud. And when he landed an internship in Disney World, we had to say yes, even though it also entails a semester off of school. He deserves a little magic. Which is good – because he is working at Splash Mountain in the MAGIC Kingdom. Do say “Hi” if you run into him. He will be wearing a pretty silly uniform. His doctor has proclaimed him “practically healed” – with the Lyme seeming to be in remission. We have high hopes that the Florida climate will be just what he needs. Fingers crossed, prayers said, and we are so, so happy for him. He is rocking “Plan B.”

And I am feeling better than I’ve felt in ages. The CVID  (my immunodeficiency) is under control thanks to the Affordable Care Act that allows me to have the very expensive immunoglobulin infusions that enable me to get out of bed and work and cook and talk. I missed two months of treatment in January and February while an insurance hurdle was…hurdled…..and was subsequently “flattened” for several months, jelly legs and all. But I seem to have caught up, and am stronger than ever. My last round of liver function tests showed labs in the NORMAL RANGE. Can you imagine? I have two liver diseases and normal labs, The lyme-related infections that invaded my bladder, kidneys, and liver seem to have arrived at a plateau for which I am very grateful. No good day is unappreciated. If anything, I have to fight against enjoying my good days TOO much, as I am thrilled to finally have energy and reduced pain. (“I’m going to clean the house, plant flowers, weed the hill, cook a week’s worth of meals and go for a walk. Or maybe I should take it a bit slower.” )

And I should probably let Jim write his own update – and maybe he will – but for now I am happy to say (with permission) that he has also reached a level of wellness for which we are very grateful. He has achieved almost total relief from the joint pain, GERD, and brain fog that were ever present during the months before his lyme diagnosis. We credit his improvement to a huge commitment to his own health, which includes running, many rounds of pulse-dosed antibiotic regimens, and a dedicated effort to detox. We’re now looking at alternative treatments to come in and clean up the debris that the lyme toxins leave.

We’ve learned volumes about nutrition (as in lectin free diets), the link between brain and gut health, the importance of detoxing, meditation, healing “crises” and a radical commitment to self-care. I’ll share more in the coming weeks about the alternative treatments we have found helpful.

dylanWe DO look better on the outside, but there are still scars emerging that need time in the light to heal. We are battle-worn. What is rarely spoken out loud is the way Lyme ravages the entire family. Those not actually infected are left holding the shreds of morale and sanity while the rest of us try to get better. (We do try to take turns being crazy.) And because it takes so long to heal from Lyme, caregivers become weary and quite frankly, it just gets really old. There are many setbacks, bad days, and disappointments, and it’s ridiculously expensive. But the lessons we’ve learned will carry us over the finish line.

We’ve learned to set boundaries, to ask for help, to be vulnerable when lyme and stress steal our peace, and to be ever grateful for those who love us through a confusing journey. Tick-borne infections are insidious invaders that wreak havoc in different ways with every individual. There is not yet a “gold standard” of treatment because the CDC lags YEARS beyond what Lyme literate doctors know. Recovery can

hopebe unpredictable and varied depending on how early you catch the illness, and the state of health you were in when the ticks decided to invade.

I wouldn’t wish the past two years on anyone, but I also wouldn’t trade the lessons learned along the way.  I’ve learned to listen to wise counsel when those I trust nudge me to dig deeper or to let certain things go. We’re resurfacing with different priorities, new definitions of success, and an appreciation for our ability to love one another through some very un-lovely times.

Next week we have a wedding. Our son is marrying his lobster, and we are gaining a daughter. And we are ALL well enough to dance. (We just don’t all dance WELL.)

So much love.  God bless you all good.JJ

Next up: What in the world is a lectin free diet, and why does it matter?

More about Jenny.