This is an update from Jim:
Part of the mystery, frustration, and sadness of Lyme is the misunderstanding, misdiagnoses, and misinterpretation that define the disease.
Over the past 11 months, I have sat down to write blog posts on several occasions, each time with the intention of declaring myself either cured or so much better, this to give those of you in the throes of the disease some level of hope. Each time, symptoms of some variety would reappear and take a massive dump on my spirit. So, it seemed disingenuous to publish a blog of hope and optimism when that was not what I was feeling.
That has changed, and all for the better.
I now can write with supreme confidence that I have conquered this horrible, isolating, insidious disease, even if “conquer” might have a slightly different connotation that it would have for me a year ago. And let me begin with that last point, which is that I don’t think I truly began to knock out the residual effects of Lyme until I made this acknowledgment to myself one evening while sitting in an Epsom salt bath with a Bentonite clay mixture on my neck: “I am really, really sick.”
May 2018 was the 18-month mark of my formal diagnosis of Lyme, which coincided with the length of time I had followed an antibiotic regimen that had included Minocycline and Tinizadole and, later, Bactrim and Flagyl to go along with a shitload of supplements.
My progress was not linear, which I think made it that much more frustrating. When I initially had begun with minocycline and Tinizidole in November 2016, I experienced an immediate and dramatic reduction in my symptoms. My brain felt clear and many of the other neurological symptoms that had defined my Lyme declined noticeably.
When the symptoms reappeared periodically, this time accompanied with a new symptom, depression, it was still horrible, disheartening, and debilitating, even if I had been warned that depression was possible, maybe even likely for someone with neurologically involved Lyme.
But I still was seeing progress as winter turned to the spring of 2018. Most dramatically, the creaking and popping in my neck that over three-plus years I had learned to associate with intermittent word recall issues and brain fog was steadily going away. The back of my neck was not as tight as it had been for years. It didn’t feel like I had sand in my neck when I turned it. The pops seemed more productive, sort of like when a bad cough begins to loosen up and you know you’re getting better even if the cough sounds worse. I saw this as a positive development, particularly because the nurse practitioner who first diagnosed my Lyme and began my treatment had told me that when the creaking and popping went away, that was a sure sign that I was defeating the disease.
However, for lots of reasons, I had switched my treatment to a Lyme-literate doctor in May of 2017. I continued to see general progress under that doctor’s care. But some truths also had to be acknowledged by the time the calendar flipped to May 2018. I was emotionally frayed. For too long, small frustrations turned quickly into anger. And I still too often felt ill-equipped to deal with the challenges of heavy conversation. My trigger was short. Way too often, I was angry, sad, and frustrated. I was no fun to be around. I hadn’t associated my emotional state with Lyme Disease, but, in retrospect, it no doubt was. I had very little control over it and guilt wasn’t something I needed on top of everything else, but there it was anyway.
And as much as I tried to wish it away, I still periodically would feel the effects of hypoglycemia (low blood sugar). The onset of hypoglycemia had been my first clue back in 2014 that something was terribly wrong with me. And as my hypoglycemia had steadily dissipated, I clung to that improvement as a sign that I was steadily getting better.
But in May, when I visited my Lyme doctor for the first time in six months, I left horribly frustrated.
The doctor was concerned about my mood swings and what she felt were symptoms of depression. The doctor told me that antibiotics had likely taken me as far as they could, and that my body now needed time to heal from the effects of those antibiotics. That part was fine and made perfect sense to me.
The frustrating part was the doctor’s outright dismissal of the improvement of my neck as a sign of progress against Lyme. To my shock and dismay, the doctor suggested that she didn’t see my neck creaking and popping as related to Lyme at all. I was stunned. Probably worse, she also suggested that my hypoglycemia wasn’t related to Lyme either.
I was confused and frustrated. If I couldn’t point to the improvement in those two areas as progress, how could I feel like I had made any progress at all?
But the confusion and frustration would soon turn back to hope, even if it would be a turn that would take me wholly out of my comfort zone.
Jenny and I – much more Jenny than I – again began to pore over available Lyme literature and to look at our options. We have been accused of being “Google doctors,” but, hey, I’ve been called worse and, while we have to be careful not to substitute our research for genuine medical advice, we would not have found the path that has led to recovery without having done a mountain of research ourselves. I took the doctor’s recommended approach of cycling off the antibiotics and we began to more aggressively explore the stories of people who had conquered the effects of chronic, neurological Lyme.
The fact that my doctor had dismissed my neck creaking and popping as unrelated to Lyme was just plain wrong. It is a common, common Lyme symptom and when it begins to go improve, it is indeed a very good sign.
The fact that my doctor had dismissed my hypoglycemia as unrelated to Lyme was equally wrong. It’s less common, but when you cast the net wide enough, you will find others who have experienced that as a Lyme symptom. What we’ve subsequently learned is that Lyme can over-stimulate the adrenal glands. The resulting higher levels of adrenaline cause the pancreas to over-produce insulin, which leads to low blood sugar.
That is why, in the past, I would experience low blood sugar most noticeably when I was in a stressful type conversation or making a speech in front of a large crowd, which I often had to do. It’s also why I experienced relief from my hypoglycemia when I exercised because my body found a use for the excess adrenaline when I exercised, preventing that adrenaline from over-stimulating my pancreas.
I go through those points in some detail because I now have answers, answers that I would never have found had we merely followed the counsel of doctors. Even the most Lyme-literate doctors were not going to have all the answers for me. I had a complicated array of symptoms from chronic Lyme. The disease strikes everyone a bit differently and, because of that, I was going to have to get my treatment, counsel, and inspiration from multiple sources. I also was going to have to listen to my body. And I was going to have to be open to new approaches.
In May, we had a long drive to Florida during which Jenny had two books and a laptop open the whole way and it seemed that every mile we found another story, another anecdote from doctors and fellow Lyme sufferers who not only experienced the same symptoms that I had, but who had genuine and specific success conquering their symptoms.
I went quickly from frustration and confusion to profound hope, but I likewise was going to have to embrace new realities, some of which were very different from how I was living prior to that point.
- I had to adhere to a highly restrictive, “fun-free” diet. Grrrr!
- I had to give up beer and wine. Grrrrrr!
- I had to begin meditating. GRRRRRRRRRR!
And then, perhaps by divine inspiration – or maybe Disney Magic since we were in Orlando – a relative put us in contact with a friend who had conquered Lyme that seemed to be similar in scope to mine.
Her name is Phyllis (not really Phyllis, but let’s go with it). We talked with Phyllis on a rainy day in Orlando (by the way, it has rained the whole friggin’ year, no matter where we have gone). But Phyllis’s news shone bright through Orlando’s thick clouds that day.
Phyllis’s life had been utterly ruined by the effects of Lyme Disease. For two solid years, she had been unable to leave her house. Her career had been ruined and her family had been torn to shreds. Her symptoms had mirrored all of mine, albeit significantly worse than mine I’d say.
“So, Phyllis, did you have…”
- Hypoglycemia? “Yes.”
- Word recall? “Yes.”
- Creaking and popping neck? “Oh yeah.”
- Brain fog? “Yup.”
- Joint pain. “Yes.”
- Depression and frustration and quickness to anger? “You betcha.”
The more we talked, the more I realized I had found someone who had experienced Lyme in the same exact way I had.
The incredibly good news? She had found a practitioner right in her neighborhood who had completely eradicated the disease for her. She was now completely and clinically Lyme free. She had been to the top doctors in New York City who had not been able to bring her relief. But this practitioner had done things the top doctors could not.
But, Phyllis warned us, this is “really, really different.”
We acknowledged that as we made an appointment to visit the same practitioner a few weeks later up in Connecticut, but I didn’t wait to get started on what we’d learned.
I moved to a gluten-free diet. Everything likewise had to be organic with very limited dairy and sugar. I was supposed to remove alcohol entirely – and I did cut way back – but it was unrealistic with our son’s wedding approaching that I would be able to go cold turkey.
Sleep and rest were going to be vital to my recovery, this while I had to double down on supplements to ensure that my body had everything it needed to fight the Lyme.
And, yes, meditation would be key to my recovery as well. Somewhere we read that my brain had been “on fire” for three-and-a-half years, and that seemed to be an apt descriptor for me.
OK, so I feel that it’s important to acknowledge that progress began before I went to see the practitioner in Connecticut, even if much of what he would recommend matched what I had just started – the diet, the sleep and rest, the meditation, and a general connection of mind, body, and spirit.
All right, that last sentence? I slipped it in there, but let me acknowledge that I wasn’t – and still am not – the kind of guy who’s ready for a Dali Llama tattoo on my shoulder blade.
So, I began with the new diet and the meditation and reduction (if not wholesale elimination) of alcohol.
The positive effects were immediate. As weird as it sounds, after I meditated, my brain would not only feel clearer, it felt like something was melting in the back of my skull and down my neck. It felt like a cold liquid was dripping down the inside back of my skull and then down my neck. And it felt good. It felt like progress. My head felt clearer after the “melting.”
Now, I know that sounds nuts and I’ve had no one – not another Lyme sufferer nor a doctor nor even Phyllis – make sense of the melting, so this is my experience alone. The closest I’ve come to legitimize that experience is to have a doctor tell me that researchers at the University of Virginia have identified a lymphatic system within the brain that can drain with deep sleep and the reduction of inflammation. And I put legitimize in quotations there because this is a case of where I had to listen to my body. So, I’m going to go with that as my explanation and that’s something I’ve learned to do. No one is going to have all the answers. I must be my own advocate. I must listen to doctors and other experts, but I likewise must have my ears and mind open to what will work for me.
And I can sit here on a couch right now and tell you that I am 99 percent better and if I never knock out the final 1 percent, maybe that’s fine. I am happy. I am feeling great. And I know that I’ve beaten this horrible disease.
Now, let me get to the experience with the practitioner in Connecticut. Let’s call him “Bill.” We arrived to Bill’s office for my first visit in early June. The shelves and floor of his waiting room were covered with Buddha statues and funky lamps. Symbols and images of Eastern philosophy covered the walls. Soft, meditative music wafted through the air. We were asked to remove our shoes at the door. I want to say there was incense burning, but I don’t think that was the case.
Bill greeted us with a hug, took a sample of my blood and urine, and sat me in a chair. He put headgear on me that roughly resembled the contraption that Harold Ramis put on Rick Moranis in Ghostbusters, this while he gave me copper-plated handsets to hold and a copper footstool on which to place my bare feet. This was a bio-resonance treatment that I was reluctant to believe was real, but all I had to do was to close my eyes and summon the idea that Bill had cured Phyllis and that Phyllis was normal … and then it became easy to just run with it all.
We talked and Bill told me that I was about to get much better. He generated an herbal mixture customized for me based on the state of blood and urine. He would give me three herbal supplements that I would take over a four-month schedule. Bill would outline an even more restrictive diet than what I already was following. The idea was to follow a completely alkaline diet, reducing acidity as well as inflammation. And, for me at least, the items that were high in acidity were anything but intuitive: Red meat, alcohol (of course), coffee, uncooked onions, berries, mayonnaise, all sugars.
Then there was the list of acceptable foods: sweet potatoes, runny-yolk eggs, apples, cooked onions, herbal teas. The acceptable list was much smaller of course. I could have corn on the cob, but only if I ate it within 24 hours of picking. We had more than one laugh at the idea of venturing into a corn field to go pick corn ourselves and then running to a kitchen to cook it. OK, that doesn’t sound funny after writing it, but it was.
This wasn’t going to be easy, but I could do anything for four months, right?
Now, one thing Bill told me was that if I ate foods on the forbidden, acidic list, I could counter that by eating more foods from the acceptable, alkaline list. So, when I occasionally imbibed with a rogue strawberry or glass of red wine, I would overdo it with extra sweet potatoes, salad, and tea and everything would be OK.
Bill laid out the importance of supplemental vitamins like B12 and D and many others. He emphasized the need to drink lots and lots of water, which I did, but, even so, the color of my urine has been quite entertaining for the past five months.
I asked Bill about exercising, telling him that I had been a compulsive runner for the past two years in large part to detox from my Lyme treatment. Bill told me that I needed to stop running altogether, that he didn’t like the physical pounding of the running on my system. Of all the restrictions, this was the one that bothered me the most.
One last thing, Bill emphasized to me just how sick I was. His analysis of my blood showed that the Lyme had indeed had a big impact on my brain, which I knew, as well as on my heart, which I had not known, but which subsequently was verified by a blood test at a doctor’s office. He said that I was lucky to be alive, but that part of getting better was going to be acknowledging how sick I was and giving my body and my brain the time it needed to rest and heal. The experience was all kinds of weird, but it likewise made all the sense in the world to me.
On the drive home, I could distinctly taste metal in my mouth, something we called Bill about and he said was the result of a purge of heavy metals from my system. And then the melting and cold liquid sensation in the back of my head and down my neck became more profound.
When I arrived home, I put Bill’s regimen and diet into full force. My everyday breakfast would be eggs with salad (as in “that’s lettuce on my breakfast plate”). And my lunches and dinners in every way adhered to Bill’s instructions. I made time every day to meditate and I soaked every evening in an Epsom salt bath.
But it took only a few days for my legs to feel heavy and for me to feel uncomfortable with the idea of not running and not sweating. My body was screaming for exercise and I felt compelled to ignore Bill’s strict advice on that one. I needed to run, so I did so, but my compromise was to do so at a lower intensity and for a shorter duration.
And that is an example of what I emphasized earlier. I needed to listen to Bill and to doctors and to Phyllis … but I also had to follow what my body was telling me. Another local Lyme doctor I began seeing to supplement the treatment I was following through Bill told me that my body would “talk to me.” She referred to this as it relates to my neck, that I would know that I need to pay more attention to getting rest or eating better or detoxing if and when the creaking and popping in my neck became more noticeable.
Going back to Bill’s treatment, what I began to notice most quickly was that my sleep improved dramatically. In addition to more restful sleep, I began to have more memorable and vivid dreams. My sleep felt like it was helping me to get better.
We made the long trip back up to see Bill three times and across each four-week period I was incrementally better. Keep in mind that I already had felt quite a bit better with the changes I’d made prior to visiting Bill.
At one point, Bill told me about a doctor with whom he’s worked over the years. The doctor himself had Lyme Disease and said that he’d rather have had HIV than Lyme. His reason is that there’s a set treatment for HIV and that you can live a normal life with HIV. “You can’t live a normal life with chronic Lyme,” he said. That struck me hard: I hadn’t been able to live a normal life with Lyme Disease.
I am now five months removed from my first visit to Bill and the treatment he prescribed is now a month in my rear-view mirror. About two weeks ago, though, I had a realization. Not only was my brain completely clear, I could not remember a recent instance of a word-recall issue. While my neck will grind and pop a bit now and again, it is nothing that bothers me at all and it never seems to coincide with any other neurological symptoms as it had in the past.
I’m calmer. I’m happier. I’m hopeful. I’m a different person.
Am I completely done with Lyme? I don’t know the answer. But what I can say definitively at this point is that I am way better than I was four months ago, which then again was way better than I was six months and a year before that. And, as I said to Jenny several weeks ago, if I only ever get this much better, I am more than OK with that.