Lyme Disease is the fastest growing vector-borne disease in the United States and is an epidemic throughout the world. It can be found in every state and on every continent with the exception of Antarctica. You have a much greater chance of contracting Lyme Disease than West Nile Virus yet it doesn’t get nearly the amount of attention. I will not go into detail about how and where you can contract it as this post is more about my experience with the disease. I will, however, provide links to more information in my next post tomorrow.
Although I’ve been living with Lyme Disease for at least 19 years, I was not aware of it until a little over 2 ½ years ago. Like most people, I knew very little about Lyme Disease and what I did know was pretty inaccurate. I’ve decided that the least I can do during Lyme Disease Awareness Month is share what I’ve experienced for almost 20 years.
Writing about my struggles is far from easy. I don’t like to appear vulnerable and, although I will freely share my personal business with complete strangers sitting next to me on airplanes, it is much more difficult for me to discuss my personal struggles with several hundred of my “friends.” By posting this, I am not in search of pity or even exercising my right to be self-indulgent. I just want to get a few things off my chest and educate people about a very real threat in the hopes that I can prevent even one person from going years without a proper diagnosis.
Lyme Disease, and especially Chronic Lyme Disease, is brutal. It holds your body and your life hostage. It is both mentally and physically exhausting, painful and confusing to live with Lyme Disease.
What I actually have is called Multiple Chronic Infectious Disease Syndrome (MCIDS). At least most people have heard of Lyme Disease, so I will call it that. The truth is that very few of us that go undiagnosed for years have just the Lyme spirochete (corkscrew bacterium that can drill its way into every organ and tissue) which is called Borrelia Burgdorferi. Most of us also have at least one other co-infection (ticks often carry more than one bacteria) such as Bartonella which I also had but think I may have eradicated. In addition to bacterial infections, we may have a plethora of viruses that have reactivated. For example, I had mono (Epstein Bar virus) at age 12. It lay dormant for years until my immune system was so compromised that it was able to reactivate and cause swollen glands and additional fatigue issues. There all sorts of other viral and bacterial infections you can have with Lyme Disease. I won’t go into detail here but suffice it to say, our immune systems are completely ravaged and the bacterial and viral infections are able to take over. Some people just have achiness but some of us have our Lyme Disease turn into Neuroboreliosis which is a disorder of the central nervous system that can cause some very challenging issues with memory and behavior. Every single system in our body can be affected which is unlike any other disease I’ve ever heard of.
I was diagnosed in October of 2012, but I have been symptomatic since September of 1994. I woke up in Istanbul September 15th and could not get out of bed. It was Yom Kippur, the Jewish Day of Atonement, and I remember joking with my boyfriend at the time that I was atoning for my sins. I was stricken with what seemed like food poisoning or possibly dysentery. We were supposed to travel to central Turkey via bus that day, but I broke out in a cold sweat every time I tried to stand up. Although we did leave the next day, I was not feeling much better and, in fact, never recovered to my previous health.
I was not planning on going back to the States for another 8 months, so I tried to take the best care of myself that I could. I was plagued with viruses, ear infections, and horrible abominable pain that continued to get worse. By mid October I was settled in at the Kibbutz in northern Israel I would call home for 4 months. I was relieved to no longer be living out of a backpack and to have a place to call home, but wasn’t feeling much better. By the winter of 1995 I had moved to Prague to live with my boyfriend. That is where my most painful and enduring symptom would begin – migraines that would start at the base of my skull and felt like someone was stabbing me with a pick ax. I also started having this really odd feeling where my head would be throbbing/buzzing and everything would sound a little muffled.
When I finally got back to the States, I moved home with my parents and starting making the rounds to the doctors and trying to get answers for my symptoms. In addition to my growing list of symptoms, I had acquired an inguinal hernia from lugging around a huge backpack for a year. After that surgery, I got progressively worse.
I saw neurologists, infectious disease specialist, gastroenterologists, internist….They ran all sorts of test. My favorite one was where I had to defecate in a pail for 3 days. Yes, I kept it in the refrigerator and it did have a lid. No one had any answers. One doctor told me that I should find a therapist to talk about my feelings because they couldn’t find anything wrong with me. Maybe I was just depressed or stressed out. Yes, I was flippin’ depressed and stressed out! I felt like someone was taking an ice pick to the base of my skull, I was constantly dizzy and I couldn’t think clearly! Not to mention my hair was falling out in handfuls at the ripe old age of 24.
I started just popping the pills that the neurologist gave me. I really didn’t think that it was possible to have a constant migraine, but since they didn’t have anything else to offer, what choice did I have.
My dad had been seeing an acupuncturist/herbalist who had helped him. I started seeing him, too. He told me to stop eating wheat, dairy and sugar and drink some disgusting herbs. (Let me just say, 1995 was not an easy time to be gluten, dairy and sugar free. 2013 – it’s not so bad). Gradually I got to the point where I could spend more time out of bed. I was still popping pain pills like they were candy and more often than not, they really only scratched the surface of the pain. But I had to pay off my debt from my year abroad. I had to find a room to rent and move out of my parent’s house. So, I popped those pills and made it work.
I spent the next 15 years with daily migraines, sleep issues, faulty comprehension, and a lot of achiness that I just chalked up to aging (albeit I was in my 20s). If you ran into me during this time, you may or may not have known what I dealing with as I became an expert at hiding it and finding ways to compensate. I would smile and pretend like I wasn’t on the verge of throwing up and the pain in my neck wasn’t as if someone was drilling a hole in it. I had a “Fragrance Free Wedding” because I would become violently ill around perfume. (Most of us with Chronic Lyme have issues with strong smells and bright lights). I had planned to go to grad school but I was sick all the time and I just didn’t see it being feasible. I felt like my life was on hold. The only time during those 15 years I didn’t have any migraines were my two pregnancies. I knew that people with auto-immune diseases often went into remission during pregnancy, but I didn’t really put it together. I figured it was just evidence that my migraines were hormonal and that the extra progesterone during pregnancy was the cause of the lack of migraines.
Lyme is cyclical and there were times that were better than others. I even managed to get semi-healthy and do a couple of triathlons during that period. But the relief never lasted very long.
When my second child was less than a year, things started getting REALLY bad. My limbs literally felt like they had weights on them and I would get horrible vertigo when I stood or tried to walk up my stairs. I pulled myself out of bed several times a night to nurse my son and when morning came, I was a complete mess and could barely get out of bed. The pain in my neck was so bad that I often couldn’t turn my head unless I turned my entire torso. I had what many people call fibromyalgia: a migratory, unrelenting achiness. Other times the achiness was all over as if I had the flu. The migraines were brutal, as usual, but the scariest part was that I was losing my memory. I had absolutely no short term memory and memories and details that I used to old dear were gone. I could not form sentences or come up with the right words and I was making silly mistakes with work and life. My husband thought I was messing with him because I would start a sentence and then just stop talking. I could not remember what I was saying or the words that I needed to put together. I would say things like, “You know that thing. Um, we put the kid in it and he eats.” “The Highchair?” my husband would ask incredulously. It was as if I was really high but with none of the good parts. I was constantly confused and worried that I might have early onset Alzheimer’s.
I also had no ability to control my reactions and I could not understand the anger that I was feeling. Someone would upset me and, I am not exaggerating here, I would get so angry that I wanted to kill them. I would wake up in a pool of sweat several times a night. Sometimes, during the day I would start sweating profusely and have to rip my clothes off. This happened in the car a few times. That went on for longer than I care to think about. I was in survival mode and just kept thinking that I had to focus on my family. But you can’t really be a good parent when your health is so compromised, so I finally made an appointment with a new doctor.
I still remember the utter fatigue and despair I felt that first day I met her. It was May 24, 2010. I had tried MDs and they had no suggestions or ideas for me so I decided to try a Naturopath. She spent an hour and a half with me and (although she’s totally an impatient Eastcoaster) patiently listened to everything I said. When I told her all of my symptoms she said, “It sounds like Lyme Disease”. I had heard a little about Lyme before but was sure this wasn’t what I had. I didn’t remember being bitten (this is very common as over 50% of people don’t remember being bitten and over 50% don’t get the rash often associated with Lyme). She did a standard test for Lyme (can’t remember if it was the Elisa or the Western Blot) that quite often comes back with false negatives. That’s a huge issue with Lyme Diagnoses. Most often, it has to be a clinical diagnosis because the tests are horrible and give false negatives more than half of the time.
Since the test came up negative, she let it go because I was so resistant. I wasted another 5 months trying all sorts of other options to boost my fatigue and help with pain management. But my doctor was pretty certain and kept encouraging me to test with another lab, Igenix. It was very expensive but tested for many more strains of Borrelia as well as co-infections.
It came back positive for Bartonella and Borrelia Burgdorferi (Lyme). I only had a couple bands that looked positive for Lyme but the CDC requires 5 bands. This would mean by the CDC’s standard that I do not have Lyme. However, LLMDs (Lyme Literate MDs) know that the CDC’s criteria does not accurately assess if a person really has Lyme as it’s possible their bodies are so compromised that they are not able to make antibodies. Not only that, there are quite a few strains and the main tests that are used don’t even test for all of them! It’s also quite rare to have a co-infection without Lyme. There are several other tests that led us to the diagnosis, such as a measure of natural killer cells (CD57) which help fight infection. I won’t get into that, but let’s just say I have so few of the natural killer cells that I should probably name them. It is uncommon to have a low CD57 unless you have a major virus like HIV or a major bacterial infection like Lyme Disease. I knew I didn’t have HIV so everything seemed pretty cut and dry and I decided why not treat.
I should mention that I was not a fan of antibiotics. Ever since my 20s, whenever I took them I would get very ill. Little did I know that this was actually evidence that the antibiotics were working and killing my Lyme (which I didn’t know I had). What I was experiencing was a herxhimer reaction. “Herxing” occurs when dead bacteria are killed and release their endotoxins into the blood and tissues faster than the body can handle it. It can cause some crazy inflammation and pain. For the first year of treatment, I still felt horrible, albeit not quite as horrible. It was hard to tell if the antibiotics were working and causing the herxing or if it was just more Lyme symptoms.
In addition to antibiotics, we had to boost my immune system with an anti-inflammatory diet, vitamin shots, pushes and IVs, supplements, detoxification and what little exercise I could tolerate.
Although the oral antibiotics did help with my Bartonella (now when I get angry, I no longer feel the urge to kill someone with my bare hands), I plateaued so we decided to move on to Bicllin (penicillin) shots. My gut was such a mess that we thought we’d have a better chance bypassing it all together. After a few months of the shots I FINALLY started to get some relief. It only took 17 years.
Tomorrow I will discuss what it means to have Chronic Lyme Disease and all of the controversy surrounding it.