Beating “Chronic Lyme Disease”
[UPDATE] September 10, 2017. Here are some things I’ve tried since originally writing this post.
- I got more serious about the targeted ketogenic diet. I add pure dextrose to a drink 30 minutes before a workout, and that has worked wonders for my energy while lifting. It’s important to have pure glucose so you don’t replenish liver glycogen.
- One reader asked me if I had looked into histamine intolerance. I tried Ranitidine (Zantac), which is a histamine-2 blocker, and it was like a miracle for my muscle tension for about a month or two. I then experimented with a low-histamine diet (which ironically involves cutting out fermented foods), and it has about eliminated my esophagus problems. I avoid canned fish, and I freeze leftover meat.
- Another reader asked me if I had looked into Andy Cutler’s chelation protocol, and getting rid of my amalgam fillings. I have a mouth full of amalgam. It sounds like quackery, but I feel like I’ve tried everything else, so I’m giving it a shot. It will take time to remove all of the fillings, and I have to wait until I’m finished with Invisalign treatment, so I haven’t started with actual chelation. In the meantime, Andy’s protocol of taking a gram of Buffered Vitamin C a few times a day has really helped reduce inflammation. I also take DHEA, Forskolin, Borage Oil, and Molybdenum. I can’t point to most of those making a particular difference, but the Vitamin C definitely has helped.
And on with the original post:
About two years ago, after something like 20 years of mysterious maladies, my doctor diagnosed me with “Chronic Lyme Disease.” This diagnosis raises red flags for many people, because it’s doubtful whether “Chronic Lyme Disease” even exists (I discuss this further down in the post under “Diagnosis”). I share some of these doubts, but I’ll continue to refer to the condition as such for the sake of simplicity.
Now, almost exactly two years later, I’ve made a great deal of progress in recovery. Enough so that I felt comfortable enough moving out of the country, something which I had delayed for awhile because it made treatment and doctor’s visits complicated (“Lyme Literate” Medical Doctors are hard to find).
Despite all of the unknowns of this mysterious illness, and the dizzying complexity of the treatment plan I’ve followed (which makes identifying what really worked nearly impossible), I wanted to share my experience, if not only to share, to also help myself in thinking about my treatment rigorously.
I try to practice a healthy dose of skepticism, and you’ll see that throughout this article. I have accepted the fact that I’ll never really know exactly what has wrong with me, but that doesn’t change the fact that I’ve suffered symptoms that have impeded my day-to-day life, and my larger life choices. Since the symptoms have had a strong effect on my mood and cognitive function, they’ve likely affected my personality, which in turn has affected other choices.
Before we start, a couple disclaimers
- Your health is your responsibility, and you shouldn’t take anything in this article as health advice. I’m not a health professional, but maybe my story can give you some ideas if you happen to suffer from “Chronic Lyme Disease,” or other mysterious autoimmune issues.
- This article has lots of affiliate links in it, meaning I get paid if you buy the products through the links. This can be a hairy situation when health-related information is involved. I know I would buy damn near anything if I thought it would make me better (and, as you’ll see in this article, I’ll DO damn near anything, too). I’m only linking to products that I’ve used. I wouldn’t mind at all recouping the many thousands of dollars I’ve spent treating this illness, but know that I also don’t have any ethical qualms with making money beyond that amount – I am a professional writer, and, though this information is free, my writing is my livelihood. So, keep my potential for unconscious bias in mind as you question whether any of this is applicable to you.
What were my symptoms? Before my “Chronic Lyme Disease” diagnosis
For decades before my diagnosis, I had numerous seemingly unrelated symptoms, all of which hinted at an autoimmune syndrome of some kind. If I had to pick a time when it all may have begun, it would have been in 1993, when I missed so much school – due to a low-grade fever, joint aches, and fatigue – that I nearly had to repeat my semester. I don’t recall ever being bitten by a tick, or seeing the telltale bullseye rash on my body. We thought I had mono at the time, though I tested negative. I have, in recent years, tested positive for the Epstein-Barr Virus, which causes mono, but it’s estimated 90% of adults also have it.
Chronic sinus infections
A mysterious problem that was documented on this blog was years of chronic sinus infections. I nearly constantly had a sinus infection. I thought I had discovered a cure when I started using the sinusrinse, but my improvements were short-lived. I was still getting a sinus infection about once a year, which most doctors dismissed as normal. When I didn’t have a sinus infection, I was usually congested.
I’ve hardly had any sinus infections since I quit eating gluten back in 2007, and now I rarely even get the common cold. My food sensitivities have spread to other groups, which I discuss further down in this article.
Yeast on the back of knees, eczema under eyelids
I’ve had these mysterious patches of irritated skin on the back of my knees since around 2002. At that time, a doctor called it eczema and prescribed a steroidal ointment to apply. It helped, but he wasn’t at all interested in learning the underlying cause.
The doctor who ultimately diagnosed me identified this under a microscope as yeast. Yeast isn’t supposed to freely grow on a person’s skin – especially not for more than 10 years.
The patches have since improved. The one on my left knee is now completely gone, thanks to the help of a steroidal ointment. I keep holding off on using the same treatment on my right knee, as from time to time I think I may be getting close enough to getting better that it might go away on its own. So far, it’s improved, but has not gone away entirely.
I also develop similar patches on the tops of my eyelids. I don’t know for sure whether those are yeast or eczema, but they are sensitive to my eating patterns (I talk about food sensitivities further down in this article).
Food stuck in esophagus, eosinophilic esophagitis
I’m not precisely sure when I started to have difficulty swallowing (or, not so much swallowing, but with getting food through my esophagus several seconds after swallowing), but it finally got so bad that I had to cough up food for the first time in March of 2011. I can’t count the number of times I’ve had to do so since, and it has caused many embarrassing and scary situations. Sometimes it takes as long as five hours to get the food dislodged.
I put off getting this investigated for various dumb reasons, such as fearing the worst, having shitty health insurance, and the logistics of having someone pick me up after the endoscopy. I finally got an upper endoscopy this year. I had high levels of eosinophils – a type of white blood cell – on my esophagus.
This is a condition called eosinophilic esophagitis, and it’s an allergic reaction that causes the esophagus to close up. I haven’t yet gotten follow-up testing done to see what is triggering the allergic reactions, but there goes that overactive immune system again. I’d much rather treat the underlying cause of that.
There have been periods of time when I have taken a proton pump inhibitor, such as Prilosec for this. It helped a lot, but I don’t consider taking a proton pump inhibitor on a regular basis to be sustainable. There are no guarantees it will keep working, and I’d rather not cut back on the stomach acid I need to digest my food.
I have found that regularly eating fermented foods, such as kimchi, live sauerkraut, and beet kvass, has reduced my eosinophilic esophagitis attacks greatly. Digestive enzyme pills have helped as well, which I’ll get into more detail in further down the article.
For a few years in the early 2000’s, I had swollen glands in my neck. Yes, for a few years. My doctor at the time told me it was normal, which I never believed, and still don’t. Eventually they stopped being swollen, but I don’t know precisely when.
Joint pain, stiffness, & swelling
This one I didn’t notice until I began treatment. I had before marveled at how freely someone in dance class moved, or at how smoothly and quickly someone could type, but when I started treating my condition, I realized that there had been low-level pain, stiffness, and swelling in my joints. Suddenly, I felt light and free. I could type faster and more smoothly, and, yes, I could dance better – when treatment was working.
I haven’t managed to reduce this inflammation sustainably, but when it’s gone it makes a world of difference in my ability to move, think clearly, and in my general mood.
The first time I felt this symptom was in 1993, when I missed a ton of school for what we thought was mono, which I mention in the first paragraph of this section.
Muscle tightness, twitching, & cramps
This musculoskeletal set of symptoms is probably related to the joint pain, however, this I noticed. The muscles of my thighs were always rock hard. There was no amount of foam-rolling that would loosen them up. Several different massage therapists remarked at how tight my muscles where. When I asked them if they thought it could be the sign of a problem, they’d say something like “oh, some people are just tight.” Given the amount of meditation I had undertaken to help with this problem, this didn’t seem like a valid explanation.
I started to really think there was something wrong when I tried crossfit for several months a few years back. Despite the fact that I was in excellent shape, despite the fact that I had developed insanely healthy and regimented eating habits (from trial-and-error of managing my symptoms), I was consistently the worst performer in my class.
Equally as hard to understand as how others could have so much stamina, was understanding how many of them could come to class on a daily basis. I could do two days a week maximum. I needed massages nearly weekly to loosen up my muscles, in addition to Bikram yoga every two weeks, and daily meditation.
Despite all of this, I would regularly find myself with horrible knots in my upper back and neck, that sometimes left me incapacitated. This was why I decided to switch to a split keyboard, though, at the time, I didn’t know an underlying health problem was related (I still swear by split keyboards).
As scary as getting food stuck in your throat is, or as strange as having patches yeast growing on the back of your knees is, the muscle tightness has been the worst symptom. My body feels like a prison when my muscles are tight – my legs, ankles, hips, jaw, temples, neck, everything, will be locked up sometimes. They are constantly twitching as they switch between a contracted or relaxed state. It affects my ability to think clearly, and it affects my mood and sociability. It puts my nervous system in defensive mode. When my muscles are loose – usually from fasting – I find myself amazed at how many more hours the day seems to have.
I first started experimenting with the connection between what I ate and how I felt in 2007, when I first went gluten free, ending years of chronic sinus infections.
Since then, through trial-and-error, I’ve cut out all grains, including rice and corn, and sugar (with the exception sugar in berries, and the vegetables I eat). My sensitivity to dairy is less severe, so I’ll have a small amount once in awhile. I recently tried having a half-portion of beans on my Chipotle burrito bowls, but that caused the eczema on my eyelid to come back.
So, this means no pastries, no pizza, no tacos. In some ways, my restrictions are a blessing, because I’m not tempted everywhere I go, and I’ve had to learn to be really organized to keep my diet up. Still, I have dreams about eating pizza. I’ll occasionally have an alcoholic drink (alcohol is sugar, also, it’s alcohol, which is not good for you).
These restrictions make traveling tougher than it already is on my body, and I’ve held back on the wonderful speaking opportunities I’ve had around the world over the years. When I do travel, I feel like a real prima donna, making life difficult for my hosts. Packets of almond butter, MCT oil, and coconut cream help keep me from going hungry, or making a bad food choice.
Much of these restrictions also help me hit the right macronutrient balance for the diet I’ve settled in on. My diet is lightly ketogenic. I have much less muscle tension and inflammation when in ketosis (meaning my body is burning fat instead of sugar), and less brain fog. I feel best when I have massive amounts of vegetables and leafy greens in the course of the day. It’s enough carbs that it makes getting into ketosis more difficult, but the extra nutrients from the vegetables make a world of difference in how I feel. The diet is basically “Wahl’s Paleo Plus,” based upon Dr. Terry Wahl’s book, The Wahl’s Protocol. (I had Dr. Terry on my podcast to discuss this diet.)
I had trouble weight training while in ketosis, so I switched to a “targeted” ketogenic diet. I eat a few strawberries, drink some coconut water, or even have a small piece of yucca 30 minutes before a workout. After the workout I eat a lot of protein, which knocks me out of ketosis. After that protein digests, I usually make a smoothie with fruits, veggies, half a can of coconut milk, some stevia, and some MCT oil to help me get back into ketosis.
Since I’m not in ketosis all of the time, I have to fast regularly to keep my muscles from getting too tense. I’ll do 24 hours with just water once every couple of weeks. It seems all food makes me feel bad in one way or another – probably unknown food sensitivities. I’m convinced I would feel better if I fasted more, but it’s inconvenient, and I’m eager to regain the muscle mass I lost from my hindered training and digestion.
Irritability & fatigue
Who isn’t tired and in a bad mood once in awhile? These are a couple of the symptoms that make “Chronic Lyme Disease” so controversial. Yes, nearly everyone is a little tired or moody once in awhile, but not nearly everyone gets plenty of sleep, eats an impeccable diet, gets plenty of exercise, and meditates for a long as 90 minutes in a session – all things I’ve settled in on just to function.
I’m much less tired than I was when I first started treatment. It was a low-level fatigue at times, but other times, it was hard to do much but nap on the couch all day. The thing I no longer feel anymore is the sensation of my eyes sinking into my skull, as if there were lead ball-bearings over my eyelids as I closed them. It felt like, as I closed my eyes, I would never be able to open them again.
I did, and still do, have to closely monitor and plan my energy expenditure. If I leave the house to do an activity, it’s not long before I really could use a nap, or at least to lie down for awhile. I marvel at how others can fill a day or a vacation full of activities and not tire. I felt like that a couple of days when I first started my treatment, and it was a glimpse of what I imagine would otherwise be my normal.
When you’re tired, and your body is all tight, you’re not in a good mood. Its makes you short-tempered, and not so good at being around others. I’ve gotten more “introverted” over the years, despite normally testing as a slight extrovert. I think it’s more that I’m more easily annoyed by others, or can’t keep up the energy level to keep up conversation when I’m not at my peak. When I’m feeling good, I’m sociable and get energy from being around other people, it’s hard to predict when I’ll be in such a condition.
Once I got a taste of what I should feel like – when I started treatment – I could look back on points in jobs or relationships when I didn’t play well with others, and see clearly that a strongly contributing factor was that I was trudging through a fog of fatigue in a body that was attacking itself.
My “Chronic Lyme Disease” diagnosis
In October 2014, I got a call. “Hi, this is [Eric] from the Illinois Center for Disease Control.” I knew the CDC collected data about certain diseases. What I didn’t know is that sometimes they call you.
The disease I tested positive for was Ehrlichia chaffeensis, or Ehrlichiosis. It’s carried by ticks, and causes fever, chills, malaise, pink eye – amongst other things. Sometimes it kills people.
“I never see this. When this came in, I was like ‘give me that one!'” Perhaps I had gotten too cordial with the agent who called me, and he had dropped his professional demeanor. Erhlichiosis is pretty rare. Almost one in a million (actually, 2.5 in a million).
I didn’t recall any tick bites, and I hadn’t been acutely ill, like one would expect with Ehrlichiosis, anytime in recent memory. Where this Ehrlichiosis came from was and still is a mystery. There’s some chance it could have been a false positive, but it’s too late to know now. By the time I got tested again 6 months later, it was gone.
But, with Ehrlichiosis in the picture, it started to add up. Tick-borne illnesses travel in packs. A tick that infects you with, say Ehrlichiosis, probably carries a bunch of other diseases, such as Bartonella, Babesiosis, and Lyme.
Unfortunately, the tests for these diseases aren’t reliable. For Lyme, for example, the CDC standard is called the “Western Blot,” which basically looks for antibodies to body parts of spirochetes (spiral-shaped bacteria) in your blood.
If you test positive for 5 out of 10 of the bands, you have Lyme by CDC standards, which is considered by many to be too stringent of criteria. I initially tested positive for two bands: 41 kD & 66 kD on 10/15/2014, and later for three bands: 41 kD, 66 kD, 45 kD on 04/16/2015.
It’s way above my paygrade to lucidly interpret all of this, but this, along with all of my symptoms, along with Ehrlichiosis, and some of the markers I’m going to indicate below, was enough for my doctor, Casey Kelley of Whole Health Chicago (no financial relationship, only a patient), to say that I “probably” had Lyme. It wasn’t Lupus, it wasn’t Sjogren’s, nor HIV, nor Syphilis.
She called me into her office one day, and earnestly explained to me that I had been sick for a long time. I was excited to have an explanation, but I didn’t realize what she meant when she told me it would take a long time to get better.
Low Platelet, Low CD57 Natural Killer Cells, & high C4a
Other markers that supported the idea that I had “Chronic Lyme Disease” were my low platelet count, my low CD57, and my high C4a.
As far as I know, low platelet counts (thrombocytopenia) are accepted as associated with Lyme disease. However, there are other diseases and conditions it tracks with. On 9/25/2014 I tested below the 140–400 reference range: 134. After more than a year of treatment, I had made it back up to 164.
It’s unclear to my unprofessional eyes whether a low CD57 count actually is an indicator of “Chronic Lyme Disease” one 2001 study found a connection, and another 2009 study found none.
My CD57 count has improved during treatment, and has tracked with me feeling better. Here are my test results over time:
After a year of no progress, I made a huge jump in the past year, probably because I took the protocol of Cat’s Claw – specifically Peruvian Natural’s Cats Claw – described in Stephen Harrod Buhner’s Healing Lyme. It involved gradually building up to 16 pills a day of the stuff. I was doubtful of the treatment itself, and I was doubtful of the book’s insistence on Peruvian Naturals (I didn’t feel any side-effects, such as frequent urination, when taking other brands), but it appears to have worked on this front.
While my CD57 count got higher, my C4a count worsened. A high C4a count is associated with Lyme disease, but also with mold allergy. At this point, I have no idea what’s going on with this marker. Supposedly, I should have my house checked for mold, but I’ve lived in several locations during treatment, and haven’t noticed any difference in how I feel associated with location. Here are my C4a readings over time:
To any rational person, “Chronic Lyme Disease” is a minefield for misunderstandings and false assumptions. Professionals disagree about it, and I don’t know enough to know who to believe. Having suffered from my illness for decades, it’s definitely tempting to want to believe a specific answer – to give the misery a name.
Why Tim Ferriss may be wrong about Chronic Lyme Disease
Tim Ferriss – who isn’t a doctor, but who has put a lot of investigation into Lyme Disease, having had acute, tested by CDC standards, Lyme Disease – has mentioned a theory that “Chronic Lyme Disease” is just a damaged microbiome from the antibiotic treatment of Lyme Disease. It seems like a short-sighted theory, because in my case, there was never any antibiotic treatment of my illness.
The theory about a shot microbiome seems at least plausible, however. We live in a sterile civilization, and we need bacteria in our bodies to help us with various things, such as digesting food. I did have quite a few rounds of antibiotics as a kid, including a stint in high school when I was taking my brother’s Tetracycline on a daily basis for acne. (My first appearance of my symptoms predates this, however). I don’t doubt that my microbiome is at least a little shot. As you’ll see below, I’ve seen a lot of relief from working on my microbiome.
My “Chronic Lyme Disease” treatment
Treatment has been like playing a game of whac-a-mole. I’ll try something, and it will almost instantly start working. I go through a period of intense optimism and hope – imagining that I’ll soon be eating pizza and indulging in ice cream once in awhile – then, the thing that worked will stop working. I’ll try a bunch of other stuff, something will then work again, and then the cycle will repeat.
My first glimpse of health has kept me motivated to keep trying things, and to keep investigating. Shortly after getting an extensive nutritional panel – a Genova diagnostics 0090 ION Profile which showed that I had developed a number of nutritional deficiencies, including copper, magnesium, and that my neurotransmitter byproducts indicated that my nervous system was in a constant “fight-or-flight” mode – I took a cocktail of methylated B12, magnesium oxide, and vitamin D. At around 45 minutes, many of my cramped muscles started to release. I had 5 days of incredible energy, mental clarity, and an enhanced mood. I couldn’t recall ever feeling that good. Suddenly, I felt normal, and I could understand how people could have the energy to get up and go to a job at an office every day. The memory of “the 5 days,” as I call it, serves as a landmark to guide me, whenever I’m tempted to get complacent with my treatment, or to decide that this is just the way I am.
As has been the case throughout treatment, the cocktail that I took stopped working. Various things along the way have been helpful at various stages. I haven’t yet achieved a “5 days” level of health again, but I have had glimpses, and my baseline health has improved immensely.
No antibiotic treatment
If I had gotten bitten by a tick, and had an acute case of Lyme Disease, I would likely go the antibiotic route, but since I’ve had this illness for a very long time, we have opted instead to treat without antibiotics. The regimen would involve three different antibiotics, for the course of something like a year. I don’t want to take antibiotics for that long, and I imagine I would do irreparable damage to my microbiome, not to mention that the antibiotics themselves would make me feel worse for most of that time.
The philosophy all along has been, instead, to do whatever we can to support the immune system, and help it heal itself. Given some of the nutritional deficiencies I had (likely because of malabsorption), there was plenty of low-hanging fruit.
As mentioned before, my nutritional profile showed that I had a magnesium deficiency. Magnesium deficiency is very common, but it couldn’t be explained by my diet, which included more than enough magnesium. Magnesium is an important component of hundreds of chemical processes within the body, including manufacturing neurotransmitters and digestive enzymes.
At first, pills helped, then those stopped working. Additionally, oral magnesium – no matter which of the many forms – tends to irritate people’s digestive systems, and I was no exception to this.
Then, I started using a magnesium spray, so I could absorb it through the skin. I was shocked at how well this worked. It was my first undeniable encounter with the idea that you absorb nutrients through your skin. My muscle cramps started releasing nearly instantly, and I had to take a nap shortly after applying the oil, especially the first couple of times (a common reaction to magnesium supplementation, for someone deficient). Then, the spray stopped working, my red blood cell magnesium levels were still low, and I still had the muscle tightness that the magnesium had been so effective in treating. (Testing magnesium in the blood serum is useless – your body works hard to keep this in a safe range. You have to measure the amount of magnesium in the red blood cells – which is a somewhat uncommon test.)
Finally, we resorted to injecting magnesium. I was self-injecting magnesium, along with a little lidocaine – because magnesium injections are painful – as much as three times a day. I was also supplementing with Taurine and Glycine, both of which purportedly help store magnesium in the red blood cells.
Blood testing was an imperfect indicator for progress in this. I had a “low-normal” RBC magnesium content of 4.4 (4.0–6.4 reference range), but my body was still reacting very positively to magnesium injections. I eventually tapered off the injections, as I got to know whether my body needed magnesium or not. I haven’t injected magnesium at all for several months, and am confident that I won’t have to again. My last RBC reading was 5.1 on 7/14/2016.
Even though my B12 levels tested “high,” I found B12 indispensable in my recovery. Thankfully, as my doctor was instructing me how to do self-injections of magnesium, she was out of magnesium. She decided to do the injection with B12, since it’s pretty much impossible to overdose on B12. Within 30 minutes of the injection, I was sure we had hit something. Again, my muscle tension was releasing, and when I breathed, I felt like my body was actually absorbing the oxygen (I later realized that I had been suffering from “air hunger,” the feeling, as you breathe, that you’re just not getting enough air).
So, in addition to injecting magnesium, I was also injecting B12, specifically methylcobalamin. Many pharmacies carry cyanocobalamin. The “cobalamin” needs to be bound to something, then your body needs to “methylate” it. Methylcobalamin is “methylated,” which is desirable because some people are allegedly “poor methylators,” meaning they have trouble methylating the cobalamin in their diet. I tested positive for one copy of the C677T variant and one copy of the A1298C variant of the MTHFR gene, which supposedly makes me a poor methylator – though I’ve had trouble finding straightforward information about this.
In any case, pre-methylated forms of B12 and folate (methylfolate) have been extremely helpful. I did also inject hydroxycobalamin for awhile, with good effects.
At the peak, I was injecting 700mcg per day of methycobalamin. (Larger injections upset my stomach, and smaller injections didn’t seem to absorb.) I’ve scaled back until today, when I inject 700mcg about once per month, and take an oral hydroxycobalamin supplement every other day.
Tests showed that I had a copper deficiency. There are oral supplements available for this that I tried and cannot say they were effective. Since I had learned with magnesium sprays that nutrients do, in fact, absorb through your skin – I tried copper patches, which I used for many days on end, cutting off the adhesive, and reapplying with tape. I was surprised how well they worked, releasing some muscle tension within hours. The most marked effect was their effect on my sleep. Instead of waking up tired, I’d wake up after 7 or 8 hours, ready to get out of bed.
I also started wearing a copper bracelet, but I didn’t notice as marked of an effect as with the patches.
I tested 66 mcg/dL (reference range 70–175) on 11/13/2015, and by 7/14/2016, that had raised to a more normal 86.
I also had low iodine levels. I tried many things, including pills, iodized salt, and painting a patch of iodine on my skin. I can’t point to rapid physical effects that any of them worked better than the others, but I tested 51 mcg/L on 11/13/2015 (reference range 52-109), and by 7/14/2016, I had raised to 93.
As discussed above, I had low levels of CD57 Natural Killer cells, which has been associated with “Chronic Lyme Disease.” This didn’t move much, but I made a ton of progress after following the protocol described in Healing Lyme, using as much as 16 pills per day of Peruvian Natural’s Cat’s Claw. This is one of the many cases where I was skeptical, but then surprised. My levels jumped from 29 uL on 8/13/2015 to a low-normal 74 on 7/14/2016 (reference range 60–360).
Healing the Gut & Microbiome
Many of these deficiencies were probably due to malabsorption from a damaged digestive system, and a weakened microbiome. Scientists still don’t know much about the microbiome, but I can at least share what I’ve observed and tried.
One of the most effective supplements I used early on was Metagenics Glutagenics. It’s main ingredients are glutamine, deglycyrrhizinated licorice, and aloe vera gel. Glutamine is widely believed (known?) to heal the gut, but it alone was never very effective for me. I was skeptical about Glutegenics, especially because of the cost, but it definitely worked. I could feel it soothing a stomach that had been inflamed so long I was hardly aware of it, and I was digesting better. I used it the first 6 months or so of treatment, the idea being that we needed to heal my gut so it could better absorb the nutrition I was taking in.
Probiotics are widely known to not move the needle much in terms of actually influencing the microbiome, but I abided in taking them as prescribed. I don’t remember the exact regimen, but I did, and continue to, take saccharomyces boulardii. I also used Florastor early on. I can’t point to any oral probiotics I take and say that I noticed any rapid correlation to feeling better – which doesn’t mean they didn’t help.
What did help immediately was – brace yourself – probiotic enemas. I was instructed to empty out a fleet enema bottle, put 2 ounces of distilled water in it, and mix in 1/4 tsp of Klaire labs complete powder, 2 opened capsules of saccharomyces bouliardi, 1 opened capsule of Probiomax DF (only available at doctors), and 1 capsule of galactommune. Yep, then I put it all in my butt, kept my legs elevated against the wall for 20 minutes or so, then went to sleep (this is known as a “retention enema” – meaning you, well, keep it in there).
This was during a period of particularly inconsistent digestion for me. My digestive system went from disaster area to a model of health literally overnight. I continued this regimen every night for 30 days. It seemed ridiculous – even more ridiculous than injecting magnesium – but it worked. By the way, don’t do this without talking to your doctor first. You didn’t hear it from me.
In the past several months, I have also started eating lots of fermented foods. These can supposedly actually help your microbiome, because they include both the prebiotics (the food the microbes like), coupled with the live bacteria actually feasting on that food. I keep a box of kimchi in my fridge at all times, and have also taken to making my own beet kvass and sauerkraut with the help of the book The Art of Fermentation. I also briefly tried water kefir grains, but couldn’t keep up the maintenance. Whole Foods now tends to carry fermented foods, but they aren’t available in stores where I currently live, in Colombia, thus me going through all of the effort of making them on my own.
Fermented foods immediately reduced my eosinophilic esophagitis attacks, but – as treatment seems to always go – I haven’t noticed as marked effects as of late.
There’s not a ton of measurement available for my microbiome – nor reliable science to go along with it – however, I did a gut microbe analysis with uBiome back on 9/12/2013, more than a year before diagnosis. Most commercial probiotics include Bifidobacterium and Lactobacillus, because, well, I guess those are the good bacteria. That initial test has no traces of either. When I tested again on 7/1/2016, I had at least gained a small amount of Lactobacillus. Still no Bifidobacterium, but that’s usually associated with dairy, and I rarely eat dairy.
Herxheimer reaction and Alka Seltzer Gold
When you kill off borrelia bacteria or other spirochetes, you likely experience a “herxheimer reaction,” which is a reaction to endotoxins released from the death of the bacteria. You can get fever, chills, muscle cramps, and more.
I was told to take Alka Seltzer Gold to reduce these reactions. Like usual, I thought “you’ve gotta be kidding me,” but, it worked. It would quickly reduce joint pain and muscle tension for me. I’m not really clear on how this works, but the unique ingredients are sodium citrate and potassium citrate, which aren’t in traditional Alka Seltzer. Also, Alka Seltzer Gold doesn’t have aspirin, which is good, because sometimes I’d take double doses.
It’s not particularly easy to find, even in the US, but it is sold at CVS, and not Walgreens.
Astragalus Root and Chronic Lyme
I’ve tried to be skeptical every step of the way during treatment, but I’ve consistently been amazed at how accurate some of the knowledge about “Chronic Lyme Disease” has been. One good example is my experience with Astragalus Root.
My doctor prescribed Astragalus Root to me, I started taking it, and wow, did I feel miserable! I had been warned that I would feel worse before I felt better, so I figured I was just Herxing. But, no amount of Alka Seltzer Gold made me feel better. I was fatigued, had no drive or energy, and my eye sockets felt heavy again.
It wasn’t until a couple months later that I discovered the problem. I was reading Healing Lyme, and the author warned not to take Astragalus Root for “Chronic Lyme Disease,” because when the disease is in the advanced states, the Th1 response in the immune system becomes overactive, and Astragalus triggers makes this worse. I stopped taking Astragalus, and rapidly started feeling better. I could have gotten upset with my doctor for prescribing it, but she had done so much better than any other doctor, considering.
Meditation, relaxation, massage, steam room & baths
Many people probably roll their eyes at the thought of many of these things being part of treating an illness, but they have been incredibly helpful for me. As I understand it, the normal detoxification pathways that would expel waste from my body aren’t working as they would normally. So, these practices help my body keep up.
I’ve meditated for years, and sometimes it’s the only thing I can do to reduce the muscle tension. I get especially powerful benefits out of doing 90-minute meditation sessions. I’ll set a timer for 30 minutes, meditate, reset the timer, and repeat for three sessions. It isn’t until that third session that I really get the muscles in my neck and face to release.
When I don’t feel like meditating, I’ll use Andrew Johnson’s Relax app on my iPad.
Massage has also been critical. Over time, massage therapists have noted the extreme tension in my muscles less and less, though it still happens if I get overly-confident and fail to get massages regularly. I try to get one every 1-2 weeks.
I no longer have access to a bathtub, but taking a 20-minute bath with epsom salts 3 times a week helped. I now have access to a steam room, however, which is useful. The heat helps reduce the tension in my muscles.
I also used to do Bikram yoga regularly. I don’t have as easy of access to it anymore, but it was very effective in reducing the tension in my joints and muscles.
I’m still far from 100% better, and I can’t be sure that I’ll ever be eating pizzas or even a sandwich – I’d settle for being able to eat a taco at this point without putting myself in a state of pain and discomfort. Combing through all of the information and treatment options for “Chronic Lyme Disease” has been confusing and frustrating at times, but I’ve had to keep reminding myself that my health is my own responsibility. I have to push to understand what I can, and fortunately my doctor has been open to trying new things.
Remember, none of this is health advice, and your health is your own responsibility. Hopefully my story can help a few people get some ideas of what to talk to their doctors about. Look at all of the clues with a critical eye, find a doctor who will let you question them, and who will explore new treatments. With persistence, hopefully you, too, can make progress with “Chronic Lyme Disease.”
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