This is to be the first in a series of posts about Lyme Disease, my own journey with it, and how I’m treating it. In this post, I will cover my own diagnosis and some interesting facts, figures and research info.
Hi. My name is Tom and I have Lyme Disease, and it sucks. The sad thing is that there are a lot people who have much worse cases of Lyme than mine – people who have lost their vision, lost their ability to walk across the room without getting exhausted, or lost their ability to walk, period. I am grateful that mine is not that bad, but it sucks, all the same.
More and more people are getting diagnosed with this disease. “Between 2004 and 2016, the researchers found, reported Lyme cases increased from 19,804 to 36,429. (But health officials think the real number of Lyme illnesses is closer to 300,000 every year.)”(Quoted from a Vox article here). I couldn’t find any facts or figures on this, but I have to wonder how many people are walking around with Lyme Disease and never even know, or worse, running into docs that don’t immediately suspect Lyme Disease and misdiagnose their Lyme symptoms as something else entirely. As it stands, the current testing standards are producing negative test results for 20%-30% of people who actually do, indeed, have Lyme Disease (Look here for more info).
Back in June of this year, Sam and I were doing a paid acting gig. It was a disaster relief simulation training where we had to pretend to be local non-English-speaking residents of a country that had been devastated by an earthquake. We spent the day outdoors. Although it was a fairly warm day, I was weirdly chilled all day. As the day wore on, I became increasingly more fatigued and just generally “didn’t feel good.” It was that sort of thing where you can’t exactly pinpoint the feeling to something specific, like feeling nauseous or having a headache, just a general feeling of “I don’t feel good” and so, SO tired…and cold… By the end of the sim, I was absolutely miserable and was pretty sure I was running a fever.
When we got home, that afternoon, we checked my temperature and it was 101 degrees. At this point, I was starting to get achey, too. Was it the flu, maybe? I loaded myself up on preventive herbs, immune boosters (schizandra berries), pain relievers and febrifuges (kratom and Peruvian cat’s claw bark) and did my best to drink lots of water. Then I laid down for a bit and slept. A few hours later, I woke up and we checked my temp again – 103 degrees. And there it stayed for about four days straight. I slept through the rest of that day and most of the next two. Sam began to get concerned, because, since I was sleeping so much, I wasn’t actually hydrating enough. So, she took me an urgent care center and, without actually testing, they determined that I “probably” just had the flu and I should just go home, get plenty of rest and drink lots of liquids, and take Tylenol for the fever.
Being the wonderful caretaker that she is, my Sam dropped me at home, then went out and loaded up on electrolyte solutions, high end probiotics, fruit, and even Tylenol. The Tylenol took a little convincing. I usually shy away from pharmaceuticals, whether prescription or OTC, but desperate times, call for desperate measures. Nothing else was bringin the fever down and I am partial to my brain not being cooked, so I relented. It did bring the fever down…to about 101 or 102, for a few hours, then it would spike back up to 103 again.
This all happened over a weekend. I ended up staying home the following Monday, as the fever was still pretty high and I was still feeling pretty crappy. I went back to work on that Tuesday, even though I was still technically running a fever. It was hovering around 100-101, but if it took the Tylenol, it would drop to about 99. This went on for the entirety of the week.
As I was getting out of the shower that Tuesday morning, I looked in the mirror and noticed a weird red blotchy rash forming. There
were a couple of small spots on each of my legs and weird circular one just under one arm and toward my back. I showed Sam and we both began wondering aloud if maybe this was Lyme Disease. However, I hadn’t found any ticks on myself in years. In fact, all through my eight years as a National Guard Infantryman and the sixteen years since I got out, I can only remember one. I can’t recall exactly when, but since it was my exwife that found it, it had to be more than eight years ago.
Since I had taken that Friday off already, I went ahead and made an appointment to see our doctor. I managed to drag myself to work all that week, then I got up on Friday morning and went to see our doc. She checked the rash, listened to our concerns and said something along the lines of, “Yep! I feel pretty comfortable saying this might be Lyme…” Then she sent me for a blood test and wrote me a prescription for ten days worth of doxycycline. I went home and started the antibiotics. Sam immediately ordered what would become our new bible – HEALING LYME, by Stephen Harod Buhner. Once we got it, Sam started speed-reading through the “core protocol” section and started asking what herbs we had on hand, already. I had some Peruvian Cat’s Claw bark (the only thing I had that was on the protocol). Before I knew it, two packages arrived with the other two main herbs from the protocol – Japanese Knotweed and Kalmegh (or Andrographis – known colloquially as “King of Bitters”…a well deserved name, I assure you…). I began taking these, alongside the antibiotics.
About a week later, we received the lab results. They were positive for Lyme Disease. We went back to the doctor’s office, but this time we ended up seeing a different doc. She was not one of our two favorites who seem to enjoy our “weirdness.” She’s a great doctor, but she’s very serious and doesn’t seem to like to think outside of the box. She insisted that the ten day cycle was sufficient and even pulled up an article from the CDC that confirmed her position (uh…ya mean the same folks that say “chronic Lyme Disease doesn’t exists”, despite all the people that have it?). We had read through enough of the book to get the basic treatment plan based on Buhner’s research. He recommended a minimum of 28 days on the antibiotics following initial infection. If that doesn’t work, then the antibiotics probably won’t work, because you’ve probably had it for a long time.
We continued to argue our point. Whether it was because we’d convinced her, or that she was just so annoyed with us disagreeing with her that she wanted to get us out her hair, I’m not sure, but she finally gave in. I suspect, from her somewhat exasperated sigh, after relenting to the longer prescription, that the latter is the case. To be fair, it was mostly Sam that was arguing with her. Mama gets what mama wants…
So, I continued to take the antibiotics for the full 28 days (while taking some ridiculously expensive probiotics in between doses…because doxycycline kills EVERYTHING). When I started them I was feeling like crap – exhausted pretty much 24-7, depressed, all the things hurt, brain fog, short-term memory issues… Within a day or two, the weird rash had pretty much disappeared. When I was about halfway through the course of antibiotics, I noticed the symptoms had almost complete disappeared. I had loads of energy, pains that I’d had for years were nearly non-existent, anxiety and depression were at much more manageable levels, no brain fog! Holy shit! It was working. Then…I finished the doxy… Over the weekend that I finished up taking them, we spent several hours working on cleaning up our sizeable water feature. I’d spent the weekend kneeling, squatting, bending over, scrubbing and carrying big bundles of bamboo and grape vines, so being sore that Monday morning wasn’t a big stretch and I didn’t think anything of it. After a few more days went by, however, the pain had actually increased and the brain fog came back…along with the fatigue. Feeling a little defeated, I made another appointment to talk to the first doc I spoke to.
When we got to the doctor’s office, we explained how the symptoms went away, and then came back at full force and then some, once I was done with the antibiotics. Her response was a look of resignation and something along the lines of, “Yeah…that’s pretty common.” We explained that we’d been trying to track back to when we noticed my behavior changing and that we suspected I’d had Lyme Disease for at least three years, if not longer. I’d started getting very depressed, off and on, and had also started having issues with being a lot more tired than usual within that time frame. The doc looked back over my lab results and noted that one of the markers that came up positive on my test definitely would indicate that I’ve had it for a while. Great. Having done our research, already, we knew that this meant the antibiotics weren’t likely to be very helpful, and that we were going to have a long road ahead of us to get me feeling human again.
If it’s caught early enough – immediately following infection, Lyme Disease is usually completely curable by the administration of conventional high potency antibiotics. I can’t tell you how many people I’ve run into since receiving my own diagnosis who’ve said, “Oh! Yeah! I had Lyme, too! I found a tick, broke out in a rash and immediately went to the doc and they gave me a course of really strong antibiotics and I’m fine now!” All that’s left to do, at that point, is to repopulate the microbiome with some good probiotics and your good to go (definitely a topic for another post).
Unfortunately, the tick is not always found and the rash doesn’t always show up immediately. Furthermore, some studies have suggested that ticks are not the only vector for Lyme Disease infection. Evidence would suggest that the bacteria responsible for the condition we now know as Lyme Disease, borrelia bergdorferi, may also be transmitted by way of mosquitos and fleas. This German university study suggests that the Lyme borrelia can not only exist in all stages of a mosquito’s life cycle, but that it can be passed from adult specimens to the next generation of hatchlings. This article lays it out in more layman’s terms:University Hospital of Frankfurt Mosquito Study.
Additionally, it has been found that in situations where a person infected with the Lyme borellia is engaged in a long term romantic partnership (i.e., married or living together and assumably having a reasonable…or unreasonable…amount of sex), that the infected person’s partner is typically found to be carrying the bacteria, as well. This is from an article referring to a study done in 2014:
“The presence of the Lyme spirochete in genital secretions and identical strains in married couples strongly suggests that sexual transmission of the disease occurs,” said Dr. Mayne.
It would appear that the Lyme borellia tend to be highly concentrated (among other places) in the uretogenital tract. Allowing themselves to be excreted in the urine and sexual fluids of the infected animal, so as to provide another vector of infection. Essentially, deer gets infected. Deer pees on undergrowth. Other animals, not being choosy about their choice of salad dressing, eats the infected undergrowth. Other animals are now infected. Now, most other animals probably don’t have frequent enough sex with the same partners to allow for infection by that means. Humans, on the other hand, are a weird exception. We tend to shack up with one person and (hopefully) have lots and lots of crazy sex with that one person, over and over and over again.
“…Borerelia spirochetes, nearly immediately, colonize the urinary bladder of all infected animals – irrespective of species; they are then expressed out of the body in urine; Chlamydiae bacteria do this also. (You did wash your hands, didn’t you?)
The tendency for the spirochetes to heavily infect just this organ and to pass live out of the body through the urine is not happenstance. Organisms with the length of survival history as Lyme spirochetes do not “accidentally” colonize the urinary bladder and “accidentally” get expressed out of the body in urine. It is a mechanism of both survival and transmission that is common among many bacteria because it works and it works very well.
To take it a bit further: When they are “starved” or attacked, Lyme spirochetes undergo alterations in their physical form. They change into an encysted form from which they can emerge when conditions improve. (Chlamydiae bacteria also utilize this strategy.) Ninety-five percent of starved spirochetes can encyst within one minute of expression. These encysted forms have been shown to remain viable for as long as ten months.”
“Given this, it is not surprising that, despite contrary assertions by many medical practitioners, the spirochetes are also present in human (and animal) semen and vaginal secretions (e.g., Middelveen et al., 2014). This is why couples are commonly found to be infected with identical Borrelia genotypes.” – Buhner, Stephen Harrod, HEALING LYME, pp. 15-16.
Now, this isn’t to say “if you have Lyme Disease and you love your partner, don’t have sex with them!” Honestly, if you have Lyme and you’re in a long term relationship, and you’ve had Lyme Disease for a while, chances are you’ve given it to them already (unless, of course, one of you is a frigid prude). My approach to this possibility has simply been to treat Sam with the same herbs that I use to treat myself. Although this is mainly a preventative measure, I have other reasons for treating her with these herbs. Sam spent the majority of her childhood rampaging through the woods – all day, every day, when possible. In addition to narcolepsy, she’s been diagnosed with fibromyalgia. Many of the symptoms for both of these conditions line up very closely with the symptoms that I’ve been experiencing and that others who have been diagnosed with Lyme Disease have reported. Since we haven’t had her blood tested for borellia, this is entirely speculation and just as likely coincidental. On the other hand, you never know… At any rate, the herbs we are taking are equally useful in treating the conditions that she has been diagnosed with and also have general tonic effects. In other words, it can’t hurt to take them, and half of them were on our daily regimen of herbs, anyway.
Speaking of the daily regimen… I often wonder if my own situation wouldn’t have been considerably worse if I hadn’t already been ingesting so many of these herbs. I suspect that the herbs, our already fairly restricted diet, intermitant fasting, and supplementation with diatomaceous earth, bentonite clay and psyllium husk probably kept things from getting a lot worse than they might have. It still sucks, but I know it could suck a whole lot worse.
In the next installment of “Lyme Disease SUCKS,” I will talk about treatment methods for Lyme Disease. I will discuss some of the mainstream treatment methods, as well as some of the more alternative methods and also what I am doing for myself. Stay tuned…