I have now been diagnosed with Lyme and EBV.
So, here we go again I guess. It’s been a hot minute since I’ve typed anything or considered updating my blog. I actually thought about canceling it but I know people visit when searching information on Young Living Oils being gluten-free, or MTHFR protocols, candida, anxiety, and more, so I haven’t.
I’m writing because I’m entering a whole new chapter, with two new diagnoses that may actually account for some (all?) of the last 6 years of struggles I’ve had. Yesterday, my blood work came back with me having Lyme Disease and EBV (Epstein Barr Virus). At first I was unsurprised, then I was shocked; eventually I became nauseous and uncertain what this would mean.
If you happened to follow my H. Pylori journey, you know treatment was awful. There were times I didn’t want to be alive. I almost went to the hospital twice. It was a nightmare and I have no desire to relive it or repeat it.
Treating SIBO was long-lasting and in some ways continues to this day. My body (all bodies) is (are) so complex and confusing, just when I think I have things figured out, it changes. Sometimes I can eat things and other times I can’t. How unfair is that?
Last year, I was feeling bad again, burning stomach, nauseous, and struggling with digestion, so I pursued a holistic nutritionist that I knew could run the tests I wanted, tests I wasn’t trained to interpret. I hadn’t trained under Restorative Wellness Solutions yet and I wanted a practitioner who had so I searched in their Find a Practitioner section. Please do the same if you’re looking for someone to help you decipher the mysterious messages your gut is sending you, or if you just want to figure out once and for all what foods don’t work for your body and any supplements you may need to feel better. I settled on Kimberly Rovin who was a pleasure to work with (100% virtually) and I highly recommend her if you’re wanting to go down a similar path of exploration. We talked, ordered the tests (MRT and GI Map) and said we’d reconnect after the results were in.
Then my dad died.
Everything was on hold, forever in limbo. My brain couldn’t comprehend how to move forward and I couldn’t hold thoughts in my mind long enough to act on them. After New Year, I decided I needed to actually do the tests the nutritionist sent me and I geared up everything I had to follow through. Following through was not my strong point at this time, but I did it. Stool sample and blood test sent off and awaiting results.
I learned a lot from those test results. My gut was actually in pretty good shape, which surprised me considering the symptoms I was having. I had a small deficit that can be filled in with calcium-d-glucarate (something I never would have taken or know to take had I not done the GI Map). I got started on some enzymes that are perfect for me. I take one with each meal and I take gut healing herbs. All have worked beautifully. The MRT was consistent in that it showed me as highly allergic to gluten, which I knew, and to soy, which I suspected. It was the list of yellow foods that threw me.
The yellow foods are the ones that I needed to eliminate and then gradually add back in. The problem is every time I’ve tried to add them back in, I’ve gotten sick! it’s miserable! I figure, okay, I can live without corn and peanuts, they’re supposedly terrible for you anyway, but ginger? Garlic? Paprika? Tapioca – I mean the cornerstone of a paleo diet, and I can’t cook with cassava. Super disappointing. And sunflower. Sunflower lecithin is in everything from supplements to almond milk.
I embraced all the changes and disappointments. I’m pretty resourceful. I put straight canned coconut milk in my coffee now instead of almond milk or almond creamer. Corn was probably the hardest to give up, what with my love and reliance on popcorn… Those smaller, insignificant foods are irritating, though, and irritations can build. My frustration continued to rise when every time I tried to add a food back in, I became sick, usually for an entire day.
I had some other symptoms happening as well and decided I needed a full workup, see a regular doctor, get my annual blood draw, check my thyroid, you know, maintenance. Well, that doctor was not for me. I could say worse things, but it doesn’t seem fair. Maybe she’s the perfect doctor for someone else! Definitely not for me. Here’s an example:
“When I was running the other day, I had a stabbing pain in my throat area, like where my thyroid is and it’s been difficult to swallow. I used to have annual ultrasounds done on my thyroid to make sure it wasn’t growing and I figured I should resume that.” I shared with the new doctor.
“Those aren’t thyroid symptoms,” she said matter-of-factly.
“Okay, well I run 10 miles a week and do yoga every day and I’m still feeling sluggish. I’m not sure what that’s about,” I continued.
“Maybe that’s just how you feel and not actually a symptom of anything,” she replied, typing on her computer. “So, do you get any physical activity?”
Seriously. I must have mentioned running three times already. I know I did. I realized then that she wasn’t listening, couldn’t hear me and didn’t care, not about me, not about the things that mattered to me. I left sad, but with lab orders, which was my goal.
When I went to get blood drawn it was a nightmare, worse than any of my horrible blood draw stories from the past and probably a story for another time. (See what happens when I stop writing? There’s just too much to say.) They didn’t get the blood. I went home crying, my arms bruised and my fear-of-blood-draws reinforced and thriving. Another long-story-short, it turned out I had COVID at the time of that failed blood draw which makes your blood clot. So when the nurse was saying, “I can’t get any blood, your veins are blowing!” she was alerting me to this, except nobody said anything about COVID except one of my best friends who is a nurse. A week later my mom tested positive and I realized that was definitely the case. (My random symptoms were failed blood draw, vertigo, headaches and extreme fatigue, none of which I put together until my mom tested positive and even then I had to retrace my steps to realize it was true. I really should share that whole story another time….)
Eventually, I got my blood redrawn and it was effortless and easy. I felt accomplished and awaited my results which started pinging my inbox almost immediately. The standard emails from the physician said, “Everything is within normal ranges.” Sigh. Okay, thanks… for nothing….
I knew I needed to see someone who cared, who listened, who saw the body as a functioning whole, not just a symptom equals a prescription equals a symptom equals a prescription. I found someone and emailed with the office and went back and forth with my thoughts, motivation, ability, and financial concerns. (Grief seriously threatened to drown my ability to start or finish anything this year.) Finally, I made the appointment and I went.
I shared everything with her that I’ve just written and then some. We figured we should get some better thyroid numbers and check for Lyme Disease, which I’d suspected since that bug bite and EBV, which I’d had in high school. She said test results take about 2 weeks and I wouldn’t hear from her before our next appointment unless it was serious. So when I heard from her 5 days before our appointment, I felt a little panicky.
“I’d like to talk tomorrow,” her message said. She attached my test results and I scanned them with some knowledge, some ignorance, and total heightened alert.
We spoke. We went over everything and I guess that’s why I’m here, to sort it all out and get it all out on “paper” so I can make sense of it. Maybe you can share your experiences as well, if you’ve dealt with Lyme and EBV.
IGG for Lyme and EBV shows something that happened in the past and there are normal ranges and abnormal ranges for these. For Lyme, I had an IGG that showed reactivated. That means I have had a Lyme infection in the past and it has since reactivated, at a pretty high level.
IGM for Lyme and EBV shows something that’s happening right now, a current infection. I had that for Lyme too. So I have a current infection and a past infection that’s been reactivated.
I also had IGG for EBV, which wasn’t a surprise since we know I tested positive in high school. The normal range for that was under 21. My number is 460. So, clearly I have reactivated my Epstein Barr Virus at a very high level. No wonder I’m so tired. I have been blaming it on grief for the last year. The years before that are a blur, but I’m a mom, that’s just to be expected, right?
These things can reactivate for a number of reasons, including stress, which of course doesn’t really narrow anything down. However, I remember when my cat of 17 years died. I was devastated and our dog went lame. He just couldn’t walk. It started with a limp and then none of his legs would work. Panicked that I would lose another pet so soon after losing my Willow, we took him to the vet and he had a reactivated Lyme infection, probably from grief-stress. I was shocked that her death hit him so hard, but there you have it.
It’s possible I’ve been dealing with Lyme disease for 7 years, since that infected bug bite followed my first panic attack in a dozen years, which I blamed on the antibiotic I was prescribed. I’ve never been 100% since. I’ve gotten close, better, then worse, sometimes awful and I’ve learned a lot about MTHFR, gut health, motility, SIBO, SCD diets and paleo diets. I’ve had a miscarriage and a baby since then, who’s now five (where does the time go?). I’ve wandered down many paths in search of feeling my best and I never really rediscovered that person again. I don’t know if she’s gone forever or if there’s a chance I’ll find her and be symptom-free once more.
So here’s the plan. I’m going to very slowly and gradually start taking cat’s claw and astragalus tinctures (once I get them from my doctor). These should rid my body of the infection (Lyme) and the virus (Epstein Barr). By going the slow and herbal route, we should negate severe treatment side effects. I know Lyme is associated with food intolerances and I’m hopeful some of these might go away. Lyme is also associated with digestive disturbances and maybe I’ll be able to finally heal my gut after all these years.
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