First off, let’s get some terminology out of the way.
Lyme disease – also known as borreliosis, is an infectious disease thought to be caused by a microscopic organism called borrelia. Lyme disease is notoriously difficult to diagnose. However, classic symptoms include sudden-onset fever following a tick bite, the tell-tale “bulls-eye” rash, and migrating joint pain.
chronic Lyme disease – also known as post-treatment Lyme disease syndrome, is the presentation of lingering symptoms (or appearance of new symptoms) following the resolution of a case of Lyme disease.
IDSA – The Infectious Diseases Society of America is a medical association with a focus on infectious diseases. IDSA makes clinical practice guidelines for the treatment of infectious diseases, including Lyme disease.
CDC – The Centers for Disease Control and Prevention is a federal agency of the United States responsible for “protecting public health.”
ILADS – The International Lyme and Associated Diseases Society is a medical association that advocates for a wider recognition of chronic Lyme disease. Furthermore, ILADS makes its own treatment guidelines for chronic Lyme disease.
LLMD – A Lyme literate medical doctor is an unofficial self-designated title that some medical professionals choose to describe themselves. LLMDs typically follow the ILADS guidelines to some extent, and they are known to diagnose chronic Lyme disease.
So imagine for a moment that you are sick. Very sick. You are extraordinarily fatigued all the time. Not just “I’m tired” fatigued, but the sort of fatigue where you literally spend hours trying to talk yourself into standing up to go to the bathroom because you have to pee but you’re so exhausted that it seems better to hold it in rather than expend the precious energy needed to walk 20 feet. You’re tired all the time, but you cannot sleep. In addition to the extreme fatigue, you also cannot seem to think straight and you experience mood swings that leave your few remaining friends walking on eggshells around you. Working a job is next to impossible, so chances are you lost yours a while back. And when you go to your doctor you’re told that there’s nothing wrong with you and it must all be in your head. This is a taste of the experience of chronic Lyme disease. Of course, the symptoms are widely varied, and there is no official, standard definition for chronic Lyme disease, and so many who have this affliction may experience vastly different symptoms.
Lyme disease can be difficult to diagnose. Although there are other vectors, ticks are one of the most common. So sudden-onset fever following a tick bite is a good indicator. Add to that a “bull’s eye” rash, and you’ve got a pretty clear case of Lyme disease. However, reportedly, not all cases of Lyme disease ever present these tell-tale symptoms. Without a clear route of infection and a bull’s eye rash, Lyme disease is difficult to differentiate from many other mysterious diseases such as chronic fatigue, fibromyalgia, and multiple sclerosis. In fact, many of the symptoms are overlapping with these other conditions So the next step is to use medical tests to determine if Lyme disease is likely. The problems here are many. For one thing, apparently few doctors will order these tests or even suggest the possibility to patients, particularly in areas with low incidences of confirmed Lyme disease. But then there is the issue of the accuracy of the tests for Lyme disease. While the CDC maintains that the tests are accurate by at least 65% (a number that seems very low to begin with,) other organizations state that the tests are next to useless because of their inaccuracy.
Now, if a doctor has clinical evidence and/or test results suggesting Lyme disease, and if the doctor is reasonably Lyme literate (which seems to be a big “if” in many areas,) then in most cases such a doctor would follow the IDSA treatment guidelines. According to the IDSA guidelines the recommended treatment is a three-week course of antibiotics. In many cases this seems to work. But sometimes it doesn’t. And that’s where it gets even more complicated.
The tests for Lyme disease test for the presence of antibodies. In a person who has been infected it is expected that the antibodies will continue to be present even after the infecting bacteria have been successfully killed. Put two and two together and you quickly realize that there is no way to test to determine if a treatment has been successful other than the absence of symptoms. The trouble is that after a three week course of antibiotics most doctors will consider that the disease has been successfully treated regardless of presenting symptoms.
According to the CDC reports, there have been an average of 24,000 confirmed new cases of Lyme disease every year in recent years, and the numbers have been trending upward since 1977 when the disease was first identified. (Incidentally, since I wrote this, the CDC has issued press release that they are going to modify their number of confirmed cases to 300,000 a year! I’m not even going to publicly speculate about what could have motivated this extreme change in numbers.) The CDC further reports that as many as 20% of those treated for Lyme disease will continue to have symptoms, something that the CDC calls post-treatment Lyme disease syndrome. Add to that all the unconfirmed and unreported cases, and you’ve got a whole lot of chronically sick people who are receiving little to no support from any official channels.
With so many sick people and with the obviously short-sighted IDSA guidelines it should come as no surprise that there would be all sorts of angry responses. The responses range from lobbying groups to conspiracy theories suggesting that Lyme disease is a bioterrorism agent leaked from the government laboratory on Plum Island.
And then there is ILADS. ILADS challenges the CDC’s claim that there is no such thing as chronic Lyme disease. ILADS encourages sick people to get a second (or third or fourth) opinion and to ignore negative test results. ILADS also advocates for long-term uses of antibiotics, a highly-controversial practice that the CDC expressly advises against. The National Institutes of Health (NIH) has sponsored four studies examining the efficacy of long-term antibiotic use for Lyme disease. Two of the studies found no discernable difference in outcomes between short-term and long-term antibiotic use. The other two studies found that long-term antibiotic use offered no greater outcomes in terms of Lyme disease but did create other problems such as drug-resistant infections and even death in some cases. And so it is that the CDC and ILADS are two sides in what has come to be known as the Lyme wars, with lots of sick people as casualties.
LLMDs typically have waiting lists many months long. Insurance companies usually cover little to nothing of the expenses of visiting with LLMDs or following their treatment protocols. So visiting LLMDs turns out to be very expensive. But many people turn to this option because all other medical professionals have failed them. The trouble, aside from the expense, is that there is no way to have confidence in the diagnosis of an LLMD. By definition there is no real definition for chronic Lyme disease. ILADS suggests ignoring test results. And just about any symptoms can be chalked up to chronic Lyme. LLMDs are in the business of diagnosing Lyme. So from my perspective a diagnosis from an LLMD is largely worthless.
Truth be told, a good number of LLMDs do seem to help some people get well again. However, there are no studies to demonstrate the efficacy of their treatments. So we are left to “take their word for it.” But the LLMDs’ words don’t mean much because the truth is that even they don’t have good information unless they are following up long-term with every one of their patients – which they are not. And it isn’t hard to find patients who have taken the six months (or more) of various antibiotics, antifungals, and all the other “anti-”s only to find themselves sicker and poorer to boot. So while I’m not questioning the intentions of many LLMDs, I do question the efficacy of what they do.
Like many things, I suspect that the truth of this whole thing is found somewhere in the middle rather than at the extremes. It seems rather obvious that the IDSA and CDC are dropping the ball and failing to provide real help to people. They are leaving a lot of people in the lurch. At the same time, ILADS and LLMDs are capitalizing on this situation. Because IDSA and CDC have failed to provide any sort of practical definitions that have applicability to the real world, ILADS and LLMDs can get away with diagnosing a disease (chronic Lyme disease) for which they provide no real definition and for which they offer no tests whatsoever.
In the spring of 2010 I lived in the woods in New England. I slept on the forest floor. I pulled tens of ticks off of myself daily. And then I had a sudden-onset fever followed by a bull’s eye rash. Then I had several months of migrating joint swelling and pain. The next two years I couldn’t sleep, I was extremely fatigued, my digestion failed, and I had extreme mood swings. I was angry and irritable for no reason. I was depressed. I lost 40 pounds after already being slightly underweight. Due to a distrust in the medical system and an aversion to pharmaceuticals coupled with extreme anxiety, I never went to see a doctor. But I did try every “alternative” approach I could. I tried various dietary modifications. I tried many different herbal protocols. I fasted. I sweat. I even sank so low as to try and “zap” myself healthy with a small electronic device. But I remained sick. I was convinced that I had chronic Lyme disease.
Then I started eating 5000 calories a day, including plenty of protein, fat, and carbohydrates. And miraculously, I felt well. Not all of my symptoms disappeared overnight. But most of them did. I put on 50 pounds. I had energy enough that I built two cabins. I could carry my kids around and toss them up in the air. I found myself sprinting spontaneously on occasion!
For reasons that are too complex to describe, I stopped eating as much after some months. I switched to an ideological diet that most closely resembled a low-carb paleo diet. And I started feeling terrible again. I lost weight. I lost energy. No matter what I tried, I just felt sick.
After far too long sticking with that restrictive diet, I finally had sense enough to re-evaluate. I measured my resting pulse, and found that it was 50 bpm. My basal temperature was 96 F. I had problems with frequent urination. My hands and feet were cold. I had food sensitivities. I had all the signs of low metabolism. And so I decided to do the only sensible thing, and start eating large amounts of food in an unrestricted fashion once again. Unsurprisingly, once again I felt better and better as I continued to eat enough.
So what am I suggesting here? Am I suggesting that all people with “chronic Lyme disease” are really suffering from nothing more than low metabolism – that they can all heal completely by eating lots of food, including all macronutrients? No. Of course not. That would be naive and insulting. But I am suggesting this: that improving metabolism is a sensible first step and is likely to help no matter what, even if it does not prove to be the solution to all the problems. Certainly individuals should do whatever they believe is best – be that seeing a doctor or not, using pharmaceuticals or not, using herbs or not, etc. But improving metabolic function is compatible with just about anything else that a person may or may not do. As such, it makes a lot of sense to take some steps to improve metabolic function. Plus, it’s relatively cheap and easy!
You can find plenty of advice for improving metabolism elsewhere on this site, and so I won’t attempt to summarize it all here. But I will offer you my own personal top recommendations for improving metabolism and feeling better overall.
Relax your body. Stress of any kind, typically built upon anxious thoughts, starts a chain reaction of stress responses in the body, eventually adversely affecting metabolic function. When you notice that you have anxious thoughts or feel any stress, focus on relaxing your body. What I’ve noticed is that it is darn near impossible to relax thinking by focusing on it. But it is amazing how relaxing muscles in the body seems to relieve anxious thoughts. My suggestion is to just notice where you hold tension in your body, and consciously relax those muscles over and over for as long as necessary until you can relax without trying. Do you hold your jaw tight? Is your tongue relaxed? What about your shoulders? Is your forehead furrowed? What are you doing with your belly? Are your feet tensed? Just notice, and relax one muscle at a time.
Question your thoughts. If you notice that you are feeling stressed about something, question whether you can truly be certain about your beliefs regarding whatever it is. The truth is that we can never be certain. And so be willing to perceive other, less stressful, possibilities.
Pay attention to your breathing habits. If you are a mouth breather then work on breathing through your nose. Nasal breathing not only filters and warms air, but it also provides the benefit of creating nitrous oxide (NO.) NO is a vasodilator, which means it is a relaxant. In other words, nasal breathing is a natural stress reliever. Also, notice if your breathing is relaxed or if it is forced. The anatomy of breathing dictates that natural breathing uses a muscular contraction (of the thoracic diaphragm) on inhale and is completely relaxed and passive on the exhale. If you force the exhale then relax instead. And if you notice that you rely on auxiliary breathing muscles such as shoulders, chest, or neck, then relax those muscles. The more relaxed your breathing, the easier it is to relax more fully.
Eat food. Lots of it. If you’re sick it logically follows that you need extra energy to heal. Food provides that energy. If you don’t eat enough you make it impossible to heal. I expect that an average adult needs probably 3000+ calories a day. Obviously that number will vary depending on size, sex, age, etc. But if you’re eating significantly less than 3000 calories then chances are you need to eat more. And more is better in this case.
Give up the restrictions. Low carb? Gluten free? Sugar free? Low salt? Vegan? Casein free? Guess what? Unless you have a genuine allergy to a food, you are probably hurting your ability to heal by cutting out foods. Especially if you are starting from a place of compromised digestion function, you need to get calories from easy-to-digest sources. In my own personal experience carbohydrates, particularly sugars, have been extremely important. Salt is also important for me. And many other people report similar experiences. Adequate protein also seems to be helpful when healing. So while I don’t advocate for a high protein diet, I believe that including quality protein sources such as dairy, egg, and various other animal foods is helpful. The bottom line is, eat according to your desires, and give up the ideologies. If you desire starch or sugar then eat starch or sugar. If you desire cheese then eat cheese. And make sure you are eating enough. Often times eating enough is the real challenge, and so you may need to keep track of your calories and find ways to increase calories if you are eating too little. It is extremely unlikely that you will eat “too much.” If you are hungry enough to eat 10,000 calories (or more) in a day then that is not too much. When healing plenty of people do eat that much. So there is no real upper limit. Just make sure you are eating a reasonable minimum, which is likely to be at least 3000 calories if you are healing. (Note that most people will – at least initially – gain weight when they start eating enough after having eaten too little and lowered metabolic rate. Gaining weight in such an instance seems to be mostly inevitable. I understand that many people have a strong psychological aversion to gaining weight. That is a topic for another post.)
Lay off the polyunsaturated fats. I know that I just said to give up the restrictions. And I mean that. So if you truly crave soy oil or canola oil, then I guess you should eat them. But otherwise, ditch them – especially if you were eating them for ideological reasons (i.e. because the experts told you to.) I believe that high levels of dietary polyunsaturated fat suppresses metabolic function. And, frankly, who wants to eat spoonfuls of that stuff? On the other hand, most people genuinely enjoy butter! So consider eating saturated fats in place of polyunsaturated fats if you enjoy them (the saturated fats, that is.)
Those are my recommendations. It’s not a cure-all. Nor is this a comprehensive list of every consideration for metabolic healing. But this ought to provide a good foundation.
The experience of chronic Lyme disease is a real one. But the causes are uncertain. My hypothesis is that some people with chronic Lyme disease (so-called) are really suffering from little more than low metabolism that may itself be the result of a previous Lyme disease infection or from some other (non-Lyme) infection. In other words, Lyme disease (or other infections) may lower metabolism so that even after the infecting bacteria are killed, the person will continue to experience a great many unpleasant symptoms. On the other hand, in some cases it is likely that there may be lingering infections – whether from borrelia or from so-called co-infecting pathogens. It is possible that raising metabolism will resolve some of those infections by itself. In other people the infections may persist after improving metabolism. But in either case, raising metabolism seems like a logical first step. Or, at a minimum, it is sensible to do in conjunction with other treatments.
To be clear, my recommendations are for so-called chronic Lyme disease. If you have reason to believe that you have recently been infected with Lyme disease then that is another issue, and one for which I do not wish to make any recommendations at this time. As I have already stated, I had a very clear case of Lyme disease, and I never chose to use antibiotics. On the other hand, there is a good deal of evidence to suggest that antibiotics often do clear up Lyme disease if caught early enough. I don’t wish to argue for any course of action in terms of recent infections. However, if you have reason to believe that you have or may have so-called chronic Lyme disease, then my suggestion is that as a foundation for any other course of treatment you could hardly go wrong by improving metabolic function with my aforementioned recommendations. It is possible that in some cases this alone will restore health. In other cases it may not, but it may make some improvements. If nothing else, my recommendations are relatively inexpensive and quite unlikely to cause major medical complications whereas long-term use of antibiotics is both expensive and risky. In some cases long-term antibiotics may be necessary. Personally, I would want to rule out other possibilities first.