Lyme Disease Part IV: Finding Normal Again

Continued from my previous posts:  Lyme Disease I, Lyme Disease II, and Lyme Disease III.

Sickness and deterioration had become the new norm for me. It had been so many years since I had been normal that I plum forgot what normal actually felt like. But that would soon begin to slowly change.

There are people who show kindness, and then there are people who open up their heart to you and love flows abundantly. How fortunate I was to have a friend who not only opened up her heart to me but her home as well. We both embarked on a new journey to treat our Lyme Disease. I would make weekly visits to her home and spend roughly three hours completing a treatment and a “sweat session” in the sauna. I would tuck myself away in a spare bedroom, but I was still there, in their home. Some people may be able to put up with this for a few weeks or even a few months, but how about a year or two? Well, this dear friend and her family did just that. I’ve lost track of exactly how long I made my trips to their house, but I can estimate that it was close to two years. Now that is love in action. That is bearing one another’s burden. That is showing the love of Christ. I know you are reading this, friend. Thank you just doesn’t seem adequate!

Slowly, bit by bit, I was regaining strength and sanity. As I would sit through the therapy I would feel my body ache and groan and would watch my muscles shake. Something was certainly going on. There was a fight going on in there. Finally! I experienced significant die off in the first few months. This can be bitter sweet. Die off typically makes your symptoms worse temporarily as your body rids itself of the toxins. But in a way, I welcomed it. I knew that despite feeling terrible, good things were happening. Those spirochetes were dying!

During some of my visits I would chat with my friend about her experience out in Arizona. Although she was there for cancer treatment, the facility had discovered her Lyme Disease as well. They were doing amazing work making people well again. She encouraged me to think and pray about going out there for a consultation. They would be able to better assess my condition and run much more advanced lab work. I told my husband about it; he was all for it. However, we simply did not have the financial resources for such a trip. We had exhausted nearly all of our savings and the money we had set aside to buy a home; we were carrying some debt as a result of all the doctor visits, lab work, tests, and treatments. Lyme disease had ravaged our finances which, by the way, is a very familiar story with Lyme patients. To travel to Arizona we would need to fly and there was no way I was going to fly clear across the country by myself. I had a hard enough time trying to get out of Williamsburg in one piece! We prayed about it, but I will admit, I didn’t think it would ever happen. In hind sight, I didn’t trust the Lord. “Oh ye of little faith!”

A few weeks later we received a very interesting phone call from my brother-in-law. It went something like this:

“Dad (my father-in-law) has decided that he wants to take a family vacation.
He wants to go out to Arizona to see the Grand Canyon, and he wants to
take the entire family out…kids, spouses, and grandchildren included. He’ll
pay for everything: airline tickets, car rental, and a house rental for all
of us.”

Say what? Surely this was some cruel joke. See, my father-in-law has never, and I mean never, taken a vacation anywhere…in his entire life. Not only that, but he’s going to pay for fifteen of us to make this trip? This was insane! Nope, it was the Lord, and nothing is impossible for him. So we worked to plan our trip to Arizona. We booked our flight out a day before everyone else would arrive. We would fly into Phoenix, stay overnight, and have the consultation with the doctors the next day in Scottsdale. We would then drive up to Flagstaff to meet up with everyone. Our only expenses would be a hotel room for one night and $150 for the consultation. This totaled about $250.

I spoke to the doctors out in Scottsdale a few times before our visit. To save time they encouraged me to try and arrange for the required blood work here at home, then bring the results with me. This sounded easy, but the tests they were requesting were not from ordinary labs. These were specialized tests. As I prayed about what to do, I remembered the last doctor I saw. She was an integrative doctor meaning she treats ailments both traditionally and holistically. She hadn’t helped me with my Lyme, but I felt that I should see her again.

When I arrived for my appointment, I explained everything I had gone through yet again. I told her about the facility in Arizona and the tests they wanted to do. Then, something amazing happened. She put her hand on my shoulder and apologized. As she reviewed my records, she commented on how she had done nothing to help me during my previous visits. She told me that, at the time, she was simply uneducated about Lyme. Now, she knew that she could no longer ignore the flood of sick patients coming to her.  Their ailments were perplexing, yet all too common for her to just turn a blind eye to. She had resigned herself to study Lyme and help her patients. Wow! She agreed to arrange for all the tests that I needed. She would call the labs to request the needed kits and would get me the results.  Wow! Wow!

Within a few weeks all of my lab work was completed, and we were packed and ready to go. Before leaving we popped over to my neighbor’s house to tell her a few things. Before walking out, she handed me something. “Use this.” was all she said. I walked out the door, opened my hand, and counted $300. Wow! Wow! Wow! That money paid for our hotel room in Phoenix and my consultation with the doctor. “Oh ye of little faith.” That was me. I had had little faith in the Lord, but look how he had provided. Aside from food, we wouldn’t have to spend one single dollar of our own money for this trip. Is that amazing or what!?

We arrived in Phoenix and made our way over to Scottsdale the next morning. The doctor looked over my blood work and for the first time in nearly twelve years, my blood work was not normal. Lyme was confirmed as was CMV (Cytomegalovirus), and EBV (Epstein Barr). My numbers were pretty high. He discussed a few treatment options and educated me a bit more about Lyme.  He felt as though I was on the right path with my treatment, and encouraged me to stay with my current doctor.  From some of the information she had included with the results, he felt that she was educated and quite literate regarding Lyme Disease.  Then he said something very sobering, “Go home and get your kids tested.” My kids?

I had been pregnant with two of my three boys during this time. He recounted how several studies had shown that Lyme could be passed along in utero. My husband and I looked at each other. We assured him that we would take care of it immediately. And, we did. When tested, both boys showed the presence of antibodies. They had both been infected at some point. I can’t say whether it was a result of pregnancy or simply from being infected by a tick. I have to admit that this was a bit difficult to accept. At that point, both boys did not display symptoms and the infection was not active. In time, that would change, but we’ll leave that for a future post!

Recovery was slow and steady. I’d experience some bumps and minor setbacks along the way, but I continued to improve. I was once again finding normal. Normal is a nice place, and I’d like to stay here for a while! I still continue my weekly treatments but no longer at my friend’s house. Why? Well, the Lord also saw fit to provide the equipment I needed to treat myself at home.

Today, the majority of all of my symptoms are gone. Some of the effects still linger and may never fully go away, but they are minor compared to what I experienced in the past.  My brain is not as sharp as it used to be.  I still trip over names a bit and my short term memory falters occasionally (I’m also now in my 40’s, which doesn’t help).  Through testing my doctor discovered that my adrenal glands are shot from the years of constant physical sickness.  I have a tremendous amount of weight to lose, which has proven to be difficult.  I have become keenly aware and in tune with my body, and I know when something is flaring.  I try to jump on it right away and hit it hard.  I now have a doctor that is educated and advocates for me.

Am I cured? Completely healed?  Rid of all the spirochetes?  I can’t say.  But I can say that the Lord has seen fit for me to experience wellness again, and I praise Him for it.

Over the past few years I have read about and researched Lyme quite extensively.  It truly is a rather “smart” disease.  It’s symptoms mimic that of numerous other diseases and ailments.  The spirochetes have the capability to hide, protect, and change in order to thrive within the host’s body.   The current laboratory tests are weak and highly inaccurate to say the least.  More specialized tests are available, but they are wildly expensive, often not covered by insurance, and unknown to most “regular” doctors.  I believe that Lyme Disease and its coinfections are still a mystery to most.

In my final post, which will go live on Monday, I want to offer up some warnings and information about Lyme.  You yourself must be educated because not every doctor is.  I will also highlight some of the lessons that I have learned along the way,

3 thoughts on “Lyme Disease Part IV: Finding Normal Again

  1. Hi Kim and Paulie! Your story about your Lymes journey sounds all too familiar. My Mom has had Lymes Disease and went through IV treatments in her home. Thank the Lord, she has been pretty good. My husband and I are taking care of her in our home in SC. I think about you guys often. Send my love to Paulie! Praying you have continued protection against Lymes disease! Diana Macauley Waddle


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