Despite eating a strict diet and living a clean and natural lifestyle, I’ve had stubborn symptoms that have persisted for a very long time.
Though the joint pain I’d suffered from since I was a preteen was relieved by switching to a “primal” diet, and my energy levels improved, one of the worst of my symptoms is chronic fatigue. Additionally, I have been getting migraines (2-4 per month or more) since I can remember. My 8 year old son, who has symptoms of PANDAS (among lots of other things), is also doing much better with our diet and lifestyle changes, but he is not healed, and his behavior gets much worse if we don’t stay strict with the diet. It has been exhausting and frustrating to fight this fight and feel like we’re not getting anywhere.
Going Down a Rabbit Hole
It was just over a year ago that my interest in Lyme disease was peaked. I read about the symptoms and could check every single one off the list; both past and present symptoms. I had even been bitten several times between the ages of 12-14 because there were lots of ticks where we lived and my dog slept with me. I watched the documentary Under Our Skin, and my eyes were opened even more, and I began to learn just how tricky Lyme is. Testing seemed really overwhelming… I was headed down a rabbit hole and I was in over my head. Unsure of what to do about this new information, I put the idea on the back burner.
A few months later, my son and I went to see a practitioner that a friend recommended because I was ready to get to the root of our problems once and for all, and he had a natural and holistic approach, which I was seeking. I told him from the beginning that I wanted to be tested for Lyme. He suggested we wait because Lyme is expensive and difficult to test for. We did find strep bacteria overgrowth via blood and stool testing, so I went on antibiotics for a month. I felt amazing during that month. I didn’t have a single migraine and I was energetic. It was great.
When I finished the month-long round of antibiotics, the fatigue returned almost immediately and I began to have migraines again. A month or two later, I begrudgingly admitted that whatever relief I had felt from the antibiotics was short-lived and I was back to square one. Even though I knew it in the back of my mind, it was discouraging when our practitioner confirmed I needed to be tested for Lyme.
Testing for Lyme… No Simple Task
Finally, my practitioner and I were on the same page. I needed to be tested for Lyme disease. The next question was what test do we do? The run-of-the-mill tests done by most labs are not sensitive enough to do a thorough test and therefore give a lot of false negatives. The leading Lyme disease testing lab (Igenex) seemed more promising, but the test had to be paid for out of pocket. A couple of months passed as I waited in limbo to figure out which lab to use. I found another lab (Immunosciences) that had very good testing procedures and could test for co-infections simultaneously, and again, would be out of pocket, but insurance *might* reimburse some of the cost. I decided this was the best route, so I ordered the test. The day after the test kit came in, my practitioner called to tell me about a new lab (Medical Diagnostics- MDL) he heard about that files with insurance and would save me a ton of money, plus did a thorough enough test to feel confident in the results.
I spoke with representatives from the lab and ultimately decided that I felt good about their testing, so we ordered the test. I had them test everything: every strain of Lyme, Babesia, Bartonella (these are common Lyme co-infections), mycoplasma, and more. The results came back quickly, which was great. The only problem was how the results are reported.
Here is where I’ll briefly explain how the test works. It’s called a Western Blot. There is a test strip with stripes on it, called “bands.” These bands are numbered, and if certain bands appear on a patient’s test strip, they are considered indicative of Lyme disease. Some labs do not test for all of the bands associated with Lyme, which is why you can get false negatives.
Yesterday my practitioner called and said “Nope; no Lyme, no co-infections. Everything is negative.” I should’ve been thrilled, but instead I was mad. Why all these symptoms, then? He couldn’t tell me. He said “This is a good thing; you don’t want Lyme disease.” Maybe not, but I do want answers. Never one to accept the status quo, I dug deeper. (Apparently it’s very common for a doctor who is unfamiliar with Lyme testing to tell someone they are negative, when they, in fact, are positive. This leaves a great number of people without a proper diagnosis who then go untreated and become sicker and sicker.)
From my understanding, Igenex reports a “positive” result if there is a band present, as well as how strong the band is. MDL, however, only counts a band if it is reaches a certain percentage, over 60% (I don’t know what these percentages indicate, other than how “strong” the band is). Despite many of the bands indicative of Lyme disease appearing on my Western Blot, the test was considered negative because most of them were in the 40 and 50 percentages. I’m not going to pretend I understand any of this. I don’t. I don’t even care to do the research at the moment. What is important is that by most standards, this is a positive test.
So, there it is. After long last, I have confirmed it: I have Lyme disease. I’ve already known for so long that I had all the symptoms, but now I have proof. But it’s really not that big of a deal. Let me explain.
Infection, By Any Other Name
As you may know, our family is currently on the GAPS intro diet (you can read about our experience here). The author of the GAPS book, Gut and Psychology Syndrome, Dr. Natasha Campbell McBride, has a lot to say about Lyme disease:
“Lyme disease is fashionable at the moment, as our medicine goes through fashions all the time; all sorts of problems are blamed on Lyme disease today. Lyme disease is caused by bacteria of the family Borrelia which are transmitted by ticks. The natural hosts for ticks are wild animals, such as deer, squirrels, chipmunks, rabbits and other animals. Borrelia has been in existence for a long time, possibly longer than us, humans. Yet Lyme disease has become so common only recently despite the fact that contact with wild animals is very minimal in our modern urbanised populations. So, what happened? A very big thing happened in the recent few decades: our immune systems got compromised by our modern life-styles and the environment which we, humans, have created. A good demonstration of this is what is happening to the bee population in the industrialised world: the bees are dying out. They are dying out from a couple of opportunistic infections, which they used to be resistant to only a few decades ago. Why? Because their immunity has been compromised by all the spraying of the countryside done by our modern agriculture. We, humans, are no different. When your immune system is not working properly, you become susceptible to all sorts of infections, which used to be harmless.
People who suffer from chronic fatigue, fibromyalgia, peripheral neuropathy, autoimmunity and other degenerative conditions, recently blamed on Lyme disease, are immune-compromised. The fact that Borrelia has been discovered by our science does not mean that it is the answer to these problems: when the immune system is disabled, all sorts of microbes can be at work, many of which we have not even discovered yet. And indeed antibiotic treatment for Borrelia does not eradicate chronic degenerative conditions, despite the fact that tests may show that this bacterium is gone. Very powerful antibiotics are used to treat Lyme disease, often intravenously and long-term. Antibiotics are not harmless! Healthy bodily flora is the most essential factor in keeping your immunity healthy. Antibiotics will destroy that factor very effectively, making your immune system even more disabled, making you even more vulnerable to Borrelia or any other pathogen.
So, if you suffer from a chronic degenerative condition and had a positive test for Lyme disease, don’t rush to have antibiotics. What you need to rush to do is to restore your immune system. Number one intervention is the food you eat! If you have digestive symptoms, follow the GAPS Nutritional Protocol. If your digestion is OK, follow the Weston A Price-type diet. As your immune system starts working again, it will deal with Borrelia and lots of other microbes, which you don’t even need to know about. A good percent of people, who test positive for Borrelia, have no symptoms and are healthy and well. Why? Because their immune systems are working properly! And make no mistake: well-functioning human immune system is infinitely cleverer, than any doctor or scientist! The only exception is a fresh Borrelia infection from a recent tick bite (which was tested and identified as such), which manifested with typical symptoms of a fresh Borrelia infection: erythema migrans (a typical circular skin rash) in combination with flu-like symptoms of fever, malaise and aching joints and muscles. A course of antibiotics in this situation is sensible. While taking antibiotics take all the essential steps to boost your immunity with diet and protect your gut flora with a good quality probiotic. Following the GAPS diet or the WAPF-type diet will restore your immune system long-term.” (Source)
Based on the above information, it is my understanding and opinion that regardless of the pathogen, the most important thing one can do is strengthen their immune system, which GAPS (particularly the intensive intro phase) effectively does. Because many of my symptoms have already been alleviated, I believe I have made pretty good strides in knocking the disease down with the dietary changes I’ve made thus far, namely removing sugars, grains and other starches. Since we’ve been on GAPS intro, my blood sugar has stabilized and I haven’t had any migraines.
Where to Go from Here?
Taking the above into consideration, I am still planning on seeing a LLMD (Lyme literate medical doctor). While I think diet is the number one most important factor in health, I think there is a point when biomedical interventions can compliment diet and speed along healing. I plan to take advantage of that. At this point, I do not anticipate taking antibiotics, which is a commonly-prescribed treatment for Lyme. As the above statement mentions, this is really only appropriate for recent cases. I have had Lyme disease for over 15 years.
Don’t get me wrong. Lyme disease sucks. I have suffered from a myriad of symptoms for more years of my life than I haven’t. My husband has never known me without Lyme disease. I wonder how much it has shaped the person I am, going through adolescence with Lyme disease, not feeling well, always being tired, and dealing with emotional issues that go along with it. Lyme has robbed me of a lot. But, what would be the point in dwelling on that? To me, it doesn’t matter if I have “Lyme” or any other disease or sickness; regardless of the name, the answer is the same: heal the gut; heal the immune system; eradicate disease. So, for now, I’m just gonna keep on keepin’ on.
Any updates on your Lyme journey? How has it been seeing a LL DR?
Thanks for writing on this issue, I suspect i’ve got it too.
I’m doing great, Liz! I’ll be writing about the things that have helped me soon. 🙂
What a fantastic and calming story. I too, know I have or have been infected. 11 years ago in college the bulls eye rash appeared for two weeks. Just as mysteriously as is appeared, it went away. I experience extreme ball and socket, knee and hip pain on my right side. I was told in school it was bed bugs, I got X-rays and was told I had an extra vertibrae. After a decade of yeast infections and pain I finally looked back at the facts and know that I was just misguided by people with little knowledge. I’m going to a doctor for testing along with my husband, who I know I have transmitted the Lyme to. My biggest fear is getting pregnant and my child acquiring it. Other wise, I would simply continue living the way I have been, never tested, never treated.
Stefani @ Crafty Christian says
I have gotten sucked into your blog for the past 45 minutes! Haha. I feel like you and I have been through much of the same problems with autoimmune disease, Lyme, adrenal fatigue… We are also on a healing diet and focusing on boosting our immune systems through food and herbs/oils. It’s so nice to find someone on the same journey! XO
Hi Stefani! Glad to have you! Thanks for reading. <3
Amber V. says
Thank you for sharing! The truth about Lyme needs to get out the shared more often so I appreciate you sharing. I have been sick for 12 years with coinfections/Lyme and was misdiagnosed for many of those. All three of my kiddos were exposed in my pregnancies and have dealt with some symptoms. We continue natural preventative treatment with them & ongimg natural treatment with me.
I did want to mention though with acute cases of Lyme disease that are brand-new only 30% of people get the bull’s-eye rash but I’m the article above it’s reported that people will get the bull’s-eye! Would you mind updating that as it is important to get preventative treatment whether you get a bull’s-eye rash or not when you find a tick for 28 days antibiotics!! Thanks!
It’s wonderful to hear that you and your son are doing well! Blessings!