I have Lyme. I’d like to not have it anymore. I also just want cake.
Wondering but not asking? Perhaps you asked and I was too cognitively lacking to give you an appropriate answer, to which you kindly smiled and said “oh I see”, then walked away just as confused as ever. Perhaps you ask my husband how I am doing, and bless his quiet-natured soul as a man of few words, and he just responded with “She’s having a bad day” with no further information (I still love you, D). Perhaps you are completely clueless about the things I talk about regarding my disease and we don’t know each other well enough for a dialogue to happen. Whatever it is, below are probably the top five things ya’ll wonder, if you wonder at all. If not, disregard. I’m sorry for your time.
1. What is Taking SO Long?
I KNOW. I know. I have been taking antibiotics and anti-protozoals in some form or another since Dec 2013. I started IV antibiotics in April 2014. I am STILL doing IV Therapy and it’s Nov 2014. That’s a long time to be soaking in drugs. I know. I envy each and every one of you who feel sick or stuffy and go to your doctor to get prescribed a short 7-10 day course of antibiotics and by day 4 you are feeling better. It seems like a dream diagnosis to me. But to understand why I must repeatedly drip aggressively high doses of antibiotics through the catheter that sits right above one of my heart valves, you must first understand a bit about the little guys we are trying to kill. Several things set Borrelia Burgdorferi (organism that causes Lyme Disease) apart from your average bacterial infection.
So how does this translate into a treatment program that is predicted to last me around two years? Due to their slow growth cycle, excellent hiding and evasive techniques, and biofilm building capabilities, only a small portion of bacteria are killed off each round of antibiotics that I undergo. I must also take 1-2 week breaks in-between cycles to allow my body a break from all of the medications and bug-killing. That is the short version. Add in the sad truth that my brain and nervous system have been invaded by these devilish organisms compounds the difficulties as few antibiotics have the capability to cross the blood brain barrier in therapeutic enough levels to kill the bacteria. It requires long-term dosing and aggressive dosing. Read: I am taking doses high enough to cure an elephant.
2. Why do Antibiotics Make You More Sick Instead of Better?
All of you hear my talk about my Cycles of antibiotics like I am walking the green mile to the electric chair. I’m sure you’ve all taken an antibiotic before. Perhaps it made you a little queasy. Maybe a little tired. Or maybe after a few days you experienced some indigestion – if you know what I mean. Most bacterial infections are killed by antibiotics and eliminated by the body with no other adverse affects. Again, oh how I envy you. However, there are a select few infections that produce a nasty effect when killed called the Jarisch-Herxheimer reaction. Typically, the death of these bacteria and the associated release of endotoxins (toxic substance bound to the bacterial cell wall and released when the bacterium ruptures or disintegrates) occurs faster than the body can remove the substances. It resembles sepsis and usually manifests within a few hours of the first dose of antibiotic and presents as fever, chills, rigor, tachycardia, hyperventilation, vasodilation with flushing, anxiety, increased fatigue, joint or muscle pain, skin rashes, photosensitivity, irritability, paresthesia, dizziness, sleep disturbances, asthenia, muscle cramps, night sweats, hypertension, hypotension, headaches (especially migraines) and swollen glands. Also reported are heavy perspiration, metallic taste in mouth, chills, nausea, vomiting, bloating, constipation or diarrhea, heart palpitations, facial palsy, tinnitus, mental confusion, uncoordinated movement, pruritus, bone pain, flu-like syndrome, conjunctivitis and throat swelling. Physicians may note objective symptoms of a Herxheimer reaction such as elevated creatinine, blood urea nitrogen, liver enzymes, sedimentation rate, gamma globulin or a decrease in white blood cells, hemoglobin, or platelets. The intensity of the reaction indicates the severity of inflammation. It’s the flu on steroids. In severe cases, the Herxheimer reaction can be fatal by causing capillary leak and vascular collapse (think Ebola). With Lyme Disease the Herxheimer reaction tends to be an intensification of existing or new symptoms, especially when the central nervous system or brain is involved. (Yay, that’s me!)
Fun/(Morbid?) Fact: In the infamous anthrax attacks people died because by the time they got to the hospital the anthrax organisms had multiplied to the point where killing them also killed the patient. Although dying from a Lyme Herxheimer reaction is pretty uncommon, it is still a fine line we must dance between effective treatment and safe die-offs. No matter what, you’re miserable.
My experience with the herxheimer reaction has varied. While I have, at one time or another, experienced nearly everything on that long list, I have also had great difficulties due to the fact that my nervous system and brain are basically saturated with Lyme bacteria. Dysautonomia (dysfunction of the autonomic nervous system which controls all of your internal “automatic” reflexes and actions that maintain your homeostatis) has been the biggest difficulty that my Lyme Disease has caused. This manifests as issues with blood pressure, blood pooling, temperature dysregulation, reactions to changes in blood volume, scary symptoms going in to and coming out of sleep, roller coaster heart rates, and reactions to eating food or drinking fluids – my body became a torture chamber essentially. Administration of antibiotics, for me, has resulted frequently in minor encephalitis (brain swelling) causing severe panic attacks (requiring around-the-clock benzodiazepine dosing), seizure activity (requiring anti-seizure medication), severe nausea and vomiting (requiring the usage of three different anti-nausea medications, including Marinol), severe cognitive difficulties (let’s talk about getting lost in my own house or at times being completely unable to talk), heart problems, difficulty breathing, difficulty walking properly, and vision problems, to name a few. Abnormal blood cell counts and liver enzymes have been quite the norm for me as well. And, of course, many a time I have been so weak I’ve had to be carried from one room to the other, believing myself to be near death. I know illness. I am intimately involved with illness and severe bodily dysfunction.
Many think that I am just having reactions to the high doses of medication I am receiving orally and intravenously. This is not the case. Once a particular medication combination has cleared much of the bacteria it was meant to clear, in the place or the form it was targeting, I can take my usual doses and experience no problems. This is always a happy day. It means progress. It also means it is time to change up meds and begin targeting remaining bacteria in a new way, in other forms, or in other places. Then I will begin to experience the Herxheimer reaction again until that particular combination has done its job. Once it has, I can finish my remaining dosage schedule with relatively few issues. The Herxheimer reaction, for me, has been much harder than the actual disease itself. But because of the nature of this bacteria, it is necessary to go through in order to heal. When I am at my sickest from these antibiotics, I am healing. Slowly, ever so slowly, I am starting to experience this reaction with less severity and frequency, along with my symptoms. Eventually, it won’t happen no matter what antibiotic I take. I am getting there. I am getting there by getting sicker. Ironic, isn’t it?
3. Why Can’t You Commit to Making Any Plans in Advance?
Another joy about Lyme Disease is its unpredictability. One of the first things my doctor said to me was “Lyme is different every day, every hour, sometimes every minute”. Boy were they right. But really, having suffered for seven months at that point, I already knew this. I can go from feeling fairly well (all things considered), walking around the house, perhaps being able to cook my own meals and bathe myself, to out of nowhere having a seizure, a cardiac event, or suddenly feeling too sick to even walk. I have suddenly fallen to the floor before with muscle weakness. The weakness can strike like lightening. Flu-like symptoms can strike like lightening. Fevers come out of nowhere. Difficulty breathing can happen any time for me. I never know what each day will bring. So forgive me when I look hesitant to commit to come to your gatherings. I really want to come, I really really do, if that makes a difference.
4. Why do You Need a Special Doctor all of the way Across the Country?
Oh how do I answer this one…
Short version: the CDC and ISDA maintain out-dated guidelines on Lyme Disease testing and treatment that do not consider the loads of recent research suggesting Lyme Disease can persist their recommended 21-day course of antibiotics. They also do not consider that a late-stage of the disease even exists for the poor souls like me who have gone undiagnosed for over a decade. Because 99% of the medical community must follow CDC and ISDA guidelines per their insurance partnerships, they too, do not understand or follow the recent research. Or if they do, they can not acknowledge it out of fear of losing their contracts with the insurance companies they work with.
There are a small number of doctors out there who do accept and treat based on new research that reveals promising results with long-term antibiotic use. However, because insurance companies side with the CDC and ISDA, they, by and large, do not want to pay for anything beyond the standard CDC-recommended 21-day treatment protocol AND require positive Lyme Disease tests relying on an antibody producing immune system. If you read my above paragraphs you know this frequently does not happen due to the evasiveness of this organism. Thus, these few good doctors can not accept insurance in order to avoid medical malpractice lawsuits from insurance companies who may (and have) claim their over-prescribing of antibiotics is not only unneccessary, but a public health risk. Never mind the fact that several bacterial infections are already accepted by the CDC to need long-term antibiotics such as Tuberculosis, Whipple’s disease, etc. And nevermind the fact that these good Lyme doctors are actually getting people well through their treatment protocols. For some reason Lyme Disease still remains in the middle of this medical and political controversy.
I fly to Washington, DC to see one of the best of these few doctors who treats based on current research and not on outdated and insufficient Lyme Disease guidelines. We have to pay out of pocket for most of it. It is just what we patients have to do these days. Perhaps the climate will change in the future… for the sake of all of us as this disease spreads and increases among us.
5. What do you DO all Day?
I detox. When I am not tethered to an IV pole I am detoxing. Detoxing is my full-time job. Detoxing helps to get rid of the toxins my treatment creates as these stinkin bugs die. Detoxing, for me, is the difference between home and the hospital.