What You’ll Learn

Category: Lyme
  • Diagnosis: Chronic Lyme disease, juvenile rheumatoid arthritis, multiple sclerosis
  • “I end up in a study at NYU. I have an intravenous catheter stitched into my upper arm, inserted in my heart that’s pumping these daily doses of Rocephin antibiotics. And this went on for the next year and they were monitoring me. They said that I had some of the highest counts of Lyme disease, or spirochete activity, in the cerebral spinal fluid based on a spinal tap that they had seen.”
  • “I can certainly look back now and say that I feel 100%. I have no symptoms whatsoever related to Lyme or anything that I was experiencing in the past.”

Here’s Ben’s Story

The Transcript

Disclaimer: Transcripts are prepared by a transcription service. Refer to full video above for exact wording.

I was always very curious. I’ll say as long as I can remember, I always really like to figure out how things work. I was like that kid that you know, took my mom’s phone apart and tried to see what’s inside. I once took the windshield wipers off my dad’s car and built like a robot out of it. So I was always toying with things and trying to, you know, figure out how things work. And a little bit later on in high school, I remember having that same fascination and curiosity about how the human body worked.

This was something different. This was something that was foreign to me. And it kept on happening again and again. Sometimes in the morning I’d wake up, I’d feel a little bit weak and then all of a sudden it was like brain would just cut power. I came back the next summer to run the the surfing camp, but after a couple of months of that, by September again, I started to feel those symptoms. And this time it really came back with a vengeance to the point where I think it was like the day after the last day of camp, I literally came home

And collapsed into bed and little did I know there I would stay for the next three years.

Related: Accurately Identify Chronic Lyme Co-Infections

I was diagnosed with multiple sclerosis, which was quite frightening. Then one doctor is actually my childhood pediatrician found that I had Lyme disease, but he said, you know, you grew up in Eastern Long Island. This looks like IgE mediated. So it’s probably past infection, not active. He put me on a round of Doxycycline for three weeks. More TLC chicken soup, you’ll be fine. So I did that three weeks went by. I started feeling worse, another round three weeks again. Felt worse. He sent me to an infectious disease doctor. And this one found that I had shingles and I can’t remember exactly what I was put on. There were a lot of doctors in the mix. But it was, it became this kind of story. And over the next, you know, six to 12 months, my health continued to spiral downward.

“Reading, looking at a page, focusing on anything near or far was, was not possible. Safe to say that hope was lost. I would not be getting off this couch and even walking to the end of the block, it wasn’t going to happen. Coming to terms with that as a reality was, yeah… To this day, one of the lowest points I can think about.”

I end up in a study at NYU. I have an intravenous catheter stitched into my upper arm, inserted in my heart that’s pumping these daily doses of Rocephin antibiotics. And this went on for the next year and they were monitoring me. They said that I had some of the highest counts of Lyme disease, or spirochete activity, in the cerebral spinal fluid based on a spinal tap that they had seen. I had multiple brain lesions in the frontal cortex by this point. Walking was out of the question. Breathing was hard to say the least. Reading, looking at a page, focusing on anything near or far was, was not possible. Safe to say that hope was lost. I would not be getting off this couch and even walking to the end of the block, it wasn’t going to happen.

Coming to terms with that as a reality was, yeah… To this day, one of the lowest points I can think about.

Related: Conquering Lyme Disease – Heather’s Story

Ultimately that led to starting to dissociate further and further from the conventional Lyme treatments and really just asking people who had had been extremely ill, like myself and had gotten 100% better. And there were a few and an interesting thing was that a number of those – about half a dozen or so all pointed to the same place. Pointed to the same clinic. I said, okay, well, surely you all did the same treatment then if you went to the same clinic. What was your treatment?Again, all different treatments. Okay, that’s interesting. What’s going on here?

Out of all this studying. I took, you know, Berkeley courses in biochemistry and neuroscience, neurobiology, neurochemistry, trying to figure out how the brain work you know, exercise physiology, all of the things that I had done in college and career wise leading up to this point, I could now see as this big of a dot in this massive global spectrum of information that involved, of course, psychology emotions. But some things even deeper like energy and stuff that I had no real understanding of. You don’t have to understand it on all levels. Like I said, I certainly didn’t. I realized that I understood just enough to know that I didn’t know much of anything, but I knew that the approach resonated with me on some very deep levels. Personalization was certainly one of them. As well as the integration of different types of treatment in a world – and I’m referring to the Lyme world now – where you have a huge spectrum of treatment tools with what we’ll call sort of conventional on one end, which is 100% about finding and targeting the pathogen usually done with antibiotics, to we’ll say like really liberal on the other end, which totally neglects the pathogen and just looks at the internal milieu, the environment. This is more of a biological medicine approach that says, you know, don’t worry about the pathogen, just fix the environment so that the pathogen can no longer survive. And that sounds nice and good. But the approach that I found going on here was why don’t we do both?

“I can certainly look back now and say that I feel 100%. I have no symptoms whatsoever related to Lyme or anything that I was experiencing in the past.”

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I can certainly look back now and say that I feel 100% – one hundred percent. I have no symptoms whatsoever related to Lyme or anything that I was experiencing in the past. But of course I remember that even when the pathogens were gone, when I was tested and it showed that it looked like I had never had Lyme, which is miraculous, to anyone who is really going through that most sticky point of the illness that, that suffering… It’s okay. You’re going to suffer. There’s going to be pain. And that’s not even going to stop when you recover. It’s not like you recover and everything in life all of a sudden gets magically great. I had heartbreaks. I had relationships that were great and ended. I had, you know doubts and fears and choices and all sorts of things. So this is an ongoing process. But I would certainly say slow down.

There’s no rush. Take a moment, take a breath. And know that you are exactly where you need to be. And I think just knowing that and taking that moment for yourself can allow you to just relax and backup just far enough to see this thing for what it is, which is a happening.

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