Lyme Disease is a condition you’ve probably heard a lot more about in the past few years. It has been making headlines, especially gaining the attention of those who struggle with unexplained symptoms. Unfortunately, that may be because it’s an increasingly common condition; the CDC estimates that more than 300,000 Americans are diagnosed with tick-borne disease each year.
It’s a disease I’ve dealt with first hand, and I wouldn’t wish it on my worst enemy. Some doctors barely believe it exists or that it’s easily curable. Others think you need to take antibiotics for years, which for me, is hard to imagine. Dealing with Lyme Disease has been incredibly frustrating. It feels like everyone has a different answer, no one knows for sure how to cure it, and the research related to this disease is just as confusing as the rest of the information going around.
A Starting Point
If you’re struggling with Lyme, are newly diagnosed, or suspect you have it, I’d like to share my experience with you. When I was first diagnosed with Lyme, I scoured the web for information. My doctor sent me a small informative book that was only semi-helpful; of course it had the specifics about what the bacteria is called, the common co-infections associated with Lyme, and how to prevent tick bites, but it didn’t tell me what the best course of action was.
I wanted to hear real experiences from people who have dealt with chronic Lyme and co-infections, the people who weren’t diagnosed immediately after a tick bite, the people who have already tried different treatment methods. Those were the people I felt I could trust for advice and could relate to.
Unfortunately, when I began joining social media groups to chat with others who have Lyme, the information I got wasn’t so cut and dry. It was more of the same. One thing doesn’t work for everyone and some of the treatments are straight up harsh.
I didn’t know what to do, all I knew was that Lyme is no joke and the seriousness of the situation was eating at me. I had debilitating fatigue, symptoms of fibromyalgia, splitting migraines, trouble forming sentences and putting words together, abnormal menstrual cycles, OCD and panic attacks, the list just went on and on.
Antibiotics – Round 1!
So on to antibiotics I went. I found a Lyme Literate Medical Doctor (LLMD) through the International Lyme and Associated Diseases Society (ILADS) website. He offered more than one option for treatment, but when asked for his opinion, he thought antibiotics were best at the time.
I tested positive for three co-infections and had symptoms of more, but the testing isn’t completely reliable, so my doc treated based on my history. To put it simply, these microbes are known for traveling along with their buddies, so having one without at least one or two others seems to be a rare occurrence.
Since I also had an active Epstein Barr infection (the virus that’s known for causing mono), I started on anti-viral medication for the first few weeks, followed up by a supplement called Monolaurin.
If you aren’t familiar with Monolaurin, it is an extract derived from coconut oil that has anti-viral, anti-fungal, and anti-bacterial properties. Monolaurin helps break down the outer coating of bacteria, known as bio-film, so it’s a particularly important supplement to take during Lyme treatment.
Luckily for me, the anti-virals didn’t have anything but positive effects! My chronic sore throat was a thing of the past and I finally had some much-needed energy. Then came round one of the antibiotics. This is where things started becoming more difficult. My gut was a wreck. I took the recommended 50-90 billion cfu’s of probiotics per day and the gut symptoms disappeared for a while.
But this was indeed a battle. One between the unfavorable microbes that had moved in uninvited and me. But giving up wasn’t an option in my mind so I continued. After about a month of worsening symptoms (I felt like I had been hit by a bus), I started feeling better. My pain lessened and my energy levels remained somewhat good compared to before. I had less anxiety too, which was a welcomed surprise.
I was put on a supplement called A-Bart which seemed to boost my improvement. I felt like I could finally live a little and go out more often! However, the gut symptoms remained and I noticed bloating after eating, as well as gas (two symptoms I rarely ever had before). Closer to the three month mark of taking the antibiotics, I vomited immediately after taking a dose…
Having read a few books about Lyme during my first round of treatment, I was feeling tugged in different directions. Some of what I read disagreed with antibiotic use for late stage Lyme/tick-borne infections and others promoted it. I wasn’t sure what to think but I was sure that despite all the improvement, I was plagued with new symptoms I hadn’t had.
I decided to quit the antibiotics at this point not only because research itself doesn’t seem to support their use but also because my gut was screaming for me to stop. I couldn’t keep the antibiotics down anymore. It was time to try something different.
A Much Needed Break
If you read too much about Lyme, you’ll want to pull your hair out. That is a fact. As I mentioned before, there are so many differing opinions that even make their way into research articles. It makes it very hard to know what to do or what you should try to get better. Sometimes online groups aren’t much better. Some people do get better from antibiotics and they can use them for years. Others, such as myself, won’t be able to go that route and have to look elsewhere for help.
Certain healthcare professionals think that the bacteria aren’t so much causing the symptoms people with Lyme experience, but instead the immune system itself. These people theorize that instead of fighting to kill the bugs, you should work on your immune system and try to get it to “tolerate” the bacteria (by using a treatment such as Low Dose Immunotherapy) or by strengthening your immune defenses. Some practitioners also believe that the body reacts to the bacteria even after it’s killed off by antibiotics or other treatments, which may explain “Post Treatment Lyme.”
Though I’m no healthcare professional, this idea kind of made sense to me. I wanted to try something different since I felt I could no longer handle constant anti-microbials. Since it was much more affordable, I tried homeopathy. Homeopathy helped, at one time significantly, but the improvements were short-lived. At least my gut felt better! Unfortunately, my symptoms eventually came back with a vengeance and both sounds and light were starting to feel intolerable.
Antibiotics – Round 2!
Much to my dismay, I went back to the LLMD. I felt like I had to. This time I wanted to try antibiotics for a few weeks and then switch to herbals. He wanted me to do at least three months of antibiotics though. Regrettably, I agreed.
The first time around when I got diagnosed and began antibiotics (round 1), I had some improvements that were significant. I felt like I could work for the first time in basically forever. I felt like I had a chance to live normally. But as mentioned, that came crashing down pretty quickly and I felt like I was worse than where I started. This time, I was hoping to get back to that level of initial improvement at the very least.
My LLMD explained to me that the bacteria will basically get a foot up every time treatment is stopped for long enough. I’m guessing that is what caused the symptoms to return after I tried a different treatment approach. Again, I went on antibiotics—this time a different one to start and then two additional pulsed antibiotics after a few weeks.
My all over muscle fatigue and soreness lifted once again. But other symptoms that had returned during my break wouldn’t lift. I’m not sure if it was because I wasn’t on A-Bart this time or if the beginning stages of my homeopathic treatment helped that much before or what the reasoning was. I stayed hopeful though.
Of course, the gut symptoms that came with round one ended up returning during this course of antibiotics. It didn’t matter how many probiotics I took. Eventually, probiotics made me nauseous. Towards month two of the antibiotics, I decided to start treatment for the debilitating anxiety I dealt with. Despite avoiding medications for much of my adulthood, I was at the point where I was willing to try whatever I needed to be able to enjoy life again.
Having suffered from psoriasis since childhood, I hadn’t immediately realized that something was very wrong. I figured antibiotics are likely to worsen psoriasis because of their effect on the gut but soon I realized I was dealing with something different.
My skin began peeling as though I had the worst sunburn in my life. I was flaking everywhere. I often felt short of breath and felt flutters in my chest but I shrugged those off as possible anxiety symptoms or from the much discussed herxheimer reaction (AKA “die-off”). Hives weren’t uncommon for me either and having a history of allergies, I assumed the hives I had every so often were from pollen, dust, or dog hair exposure.
One night I took a dose of the antibiotics and projectile vomited several times. The room felt like it was spinning. My face went pale, my lips blue. I had no idea what was happening. I assumed maybe food poisoning and didn’t immediately link all of it to the antibiotics. Somehow I was able to rest and with the help of my husband, I made it into bed and slowly recovered during the night. It was one of the scariest points of my life and looking back on it, I realize I was stupid for not visiting the ER. I could have died that day.
I was soon given a course of Prednisone, which my LLMD tried to dissuade me from taking. I hadn’t seen the LLMD in person when I spoke with him about another doctor prescribing Prednisone so I don’t really think he understood how bad things were getting. A friend mentioned my skin peeling could be an allergic reaction to a medication and I finally connected the dots.
I took the damn Prednisone! I had to. And it was like some sort of magic. I had so much energy while on it, I felt close to my old self. My skin healed. The only down side was I was left with a minor cough for a few weeks after stopping it and of course my usual psoriasis patches returned later on (but none of the allergic skin peeling, thank goodness!). During this time I avoided all antibiotics because I couldn’t be sure which medication I was reacting to.
It’s A Long Road
I knew I couldn’t just stay without treatment for long periods of time or the same thing would happen again. I’d get worse. Any improvements seen would be lost with time. My LLMD put me on Biocidin LSF and Lauricidin (which is a brand of Monolaurin). A simple, yet powerful combination, which I still take today. It has helped me maintain my progress for the most part and my gut symptoms eventually melted away after stopping the antibiotics.
Now I remain nearly pain free the majority of the time (I do see a chiropractor regularly too, which helps since I have facet tropism (a congenital condition in which the joints are facing opposite directions in one of my vertebra)). My energy levels keep me going throughout the day, whereas I used to need to nap a lot and felt like I was wading through quicksand. Migraines are almost non-existent now. I’m able to speak clearly, finish sentences, and retain information, which was a major issue for me in the past. I can now exercise too and tolerate changes in temperature better than before!
Overall, I am seeing the light at the end of the tunnel and I’ve learned a lot in the process. Now does this mean I am cured 100%? I’m not sure if anyone with Lyme ever is, especially if they were diagnosed late. But I can at least function semi-normally now and be happy.
I know this thing could re-emerge its ugly head in the future but I can confidently say I now know what to do if it does. And the answer isn’t to take antibiotics! Nature has the ability to heal us, if we just know how to use it.
Read. Learn. Make your own decisions. Most importantly, never give up! This is just my experience. Now I’d love to hear yours! Please share your story with me in the comments below.