Lyme / Borreliosis / Babesiosis Treatment Roadbump #1: The Pharmacy

Today, Jason was feeling well enough to go fill his prescriptions. We expected our local Walgreens, housed on a tiny little island on the eastern coast of Florida, to be out of some of the more “exotic” things (like quinine sulfate, used most often to cure malaria, which is only acquired outside of the USA).

But somehow, they’re also out of epinephrine. Epi-pens.

How do they run out of epi-pens?

I also had a pharmacy laugh at me on the phone when I asked them if they had quinine and tell us to “just drink tonic water. It has quinine.”

…Yeah, I don’t think that the gallon or so he’d need to drink of tonic water every day will quite do the trick. #babesiosisproblems

Post backdated for general info, since I didn’t get around to finishing it at the time.

Hope for Borreliosis/Babesiosis Relapse

Jason and I flew out yesterday to MO to see his specialist, Dr. C. We met with him today, and I almost feel like I have nothing to write because I suddenly feel so optimistic about the future.

Apparently sorrow and fear are my primary writing motivators. Who knew? 

Still, our story has just begun.

While I had anticipated long, endless months of worsening symptoms, crazy diets with more chicken and broccoli than I’ve ever imagined, and endlessly losing sleep as we wondered what the drug side-effects would bring this time–the wonderful doctor disagreed.

In short? This experience may not be quite as severe as it was the first time.

…I guess we will find out!

What’s Up:

Dr. C believes that Jason’s babesiosis is back; apparently dental procedures are fairly common in jump-starting latent infections, so I will thank my lucky stars that Jas had all four of those impacted wisdom teeth removed at once… and now, we may possibly invest in an additional  fluoride rinse.

The Appointment

Over the weekend, I read every document I could find prior to this appointment from Jason’s old file (it’s at least two inches thick!) It’s written by Dr. C, full of credible information (instead of colonics designed to remove “toxins” like the local Lyme doctor is pushing…), and an absolute treasure trove of Dr. C’s research from over the years.

Thus, I came equipped with a giant list of questions, neatly typed up on my phone:

  • Has Jas’ pituitary gland shut down like the bloodwork suggests? (We don’t know, but since his restarted before, Dr. C anticipates it will again, negating the need for testosterone or thyroid hormones!)
  • Are high cholesterol and triglycerides related in any wayto his previously-diagnosed secondary hypercoagulation? (They’re not). Are Jas’ high levels likely caused by the relapse? (Yes, most likely since his last bloodwork was normal.)
  • I asked him about eating fruit and yeast (Dr. C is no longer as concerned about intestinal yeast as he once was–looks like berry smoothies are still on the menu!), about drinking and liver enzymes, about pancreatitis and prevention, and all sorts of things under the sun. I did NOT have the courage to ask if I should get him one of those weird personal saunas, since according to his packet, borreliosis dislikes temperatures above 97.5, tempted though I was!

He cut the crap.

Jason’s original packet was an inch thick with instructions; try an elimination diet (especially focusing on sugar and nightshades), use heat wraps (because apparently Borreliosis doesn’t like to get too warm), stick with meds for at least a month vs. if you feel bad, don’t keep taking your meds (wait, what?).

Today’s visit was far more succinct. Gone were the fru-fru pseudosciences of yesteryear; he suggested a variety of supplements, all of which are either directly related to the bloodwork we had done before we arrived or based in emerging, evidence-based nutritional science.

For this relapse, the message was simple:

“Take these antibiotics, take your supplements to cure your deficiencies, don’t drink alcohol, and you will get better,” he told us.

The Good News

According to Dr. C, while relapse does sometimes occur after enormously stressful life events, if the medications worked once, they will likely work again—faster, and with fewer side-effects.

The science has also evolved since Jason was last treated in 2017–and it’s finally catching up! Some of the more intensive medications have changed. Now, we get to try the gentler sister of ones like Flagyl, which were utterly debilitating and made Jason feel far sicker than on his worst lyme days. 

Doctor C expects the Herx-like reactions to be milder in this relapse, and for Jason to recover faster—which means he probably won’t need to take thyroid medications, use testosterone creams or inserts, and his medications list is far shorter. Doctor C narrowed in with laser-focus on the medications that helped him improve–and the list we have is half as long as the one he received during his first go-round.

“This is still likely babesiosis, not lyme,” he told us. 

We are so very, very grateful.

This still means that Jason will be on more supplements and antibiotics than we had ever imagined. He will still take B-12 shots, we will have to quit smoking cigars, and no alcohol will pass by either of our lips. We will skip dessert and I will continue to fill our diets with fiber-rich food, nutrient-dense vegetables, heart-healthy fats and gut-healing probiotics.

But, he’s going to be okay. Maybe faster. Maybe without nearly so much pain or damage to his organs.

Sure, parts of it will be hard—but we’ve seen the other side once before. And we will again.

Today? Today, I can breathe again.

Last Week.

“Please sit down,” my husband asked, pushing a glass of red wine into my hands. “We need to have a conversation.”

I knew what was coming. I’d felt it in the way that, lately, his hand gripped mine so loosely in the car, had seen it in the dimming sparkle in his eyes, had worried at his early bed times and late risings. 

“I don’t quite know how to say this,” he told me, staring at the Pinot as its legs swirled around the crystal. “I think… I’m sick again.”

My heart desperately didn’t want to believe him; Jason is the strongest, gentlest, most resilient spirit I have ever met. How could this happen to him, again? So soon?

“It’s only been four years—are you sure?” I asked. But I knew

In that moment, I flashed to all the tiny little warning signs I’d been trying to pass off as normal… but they’re not.

“I’m sure,” he told me. We held each other for a long, long time.

On Saturday, we got the start of his bloodwork back. The writing is written clearly upon the wall: The absolute light of my life has Lyme disease (borreliosis) and babesiosis again. 

I was *so* hopeful we would get through the pandemic unscathed. This incredible man has made it through a divorce, a car accident, a surgery to remove his gallbladder, the death of our beloved Chloe-bear WHILE moving cross country AND beginning a new job, then a global pandemic where we *actually* quarantined for an entire year. Yet, his smile never faltered. 

Until now. 

So what actually did him in? Where did this relapse come from?

An image of highlighted paperwork, describing the causes of lyme relapse, such as car wreck, divorce, bankruptcy, death of a loved one, moving, job change, falling off a horse, surgery, and dental procedures.
paper

Looks like…. a trip to the dentist. My love had his wisdom teeth removed two months ago. Now, he is very much *not* okay. 

I have a need to write about this. To share our story. Because while this isn’t his first rodeo, what’s coming is a bumpy, painful, and often terrifying ride. 

Hello blogging, my old friend. I’ve come to talk with you again.