During a Herxheimer Reaction symptoms are exacerbated and inflammation increases making the Lyme patient often feel much worse than before they began treatment. A bad Herx reaction is often much worse than the disease itself, and if not handled properly a Herxheimer Reaction can be fatal.
When we last left off, I had not yet received the diagnosis.
“You tested positive for Lyme. You have four out of five markers. I am really surprised because here in Kentucky, Lyme isn’t prevalent.” My doctor was on the other end of the line giving me the results of the Lyme test I took a week earlier.
Whoa! I wasn’t expecting that.
It was October 13th and I began taking the prescribed standard dose of Doxycycline that day.
I watched documentaries and read all the research I could find; as I did my fears grew exponentially. Many folks become disabled and even die from this!! I know a beautiful soul in Texas who went from being a vibrant 30 something year-old to bedridden. She now needs a motorized scooter to get around.
I had come through a long period, two years, of deep depression in which a few times I would have welcomed death. But not now!! I had finally started feeling hopeful and happy again. Then bam! I was broadsided by the Lyme diagnosis. What the hell is that about? Talk about a plot twist, just when I was looking forward to living again mortality was staring me in the face. I had been writing and I worried about dying with my book still inside me. After all I had been through it would suck to die now! Damnit!
I was determined not to let this stupid disease ruin everything for me, not now! I resolved to find a way to get healthy. I intuitively knew that if I could heal Lyme, all the other issues I had, the Hashimoto’s Thyroid disease, the adrenal fatigue and the hormonal issues would all disappear.
A few days on Doxycycline and I felt slightly better, but by the end of the first week, I felt worse.
On October 24th I sent my first message to Vicki at the Kentucky Lyme Disease Association via their Facebook page.
During our conversation she asked me, “What dosage of Doxycycline are you taking?”
“100 mg twice a day, I have a 30 day supply”
“We can’t tell you how much you should have since we are not doctors but I can send you these guidelines. “Advanced Topics in Lyme Disease Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses”. Sixteenth Edition. Copyright October, 2008. JOSEPH J. BURRASCANO JR., M.D.
I read the report and asked my doctor for a higher dose. Initially he was reluctant to increase the dose because it was not within the CDC guidelines. I sent him a copy of the report. After reading it he increased the dosage.
Vicki shared her family’s personal trials with Lyme. She, her husband and son all battled this vicious tricky disease. Her son was so bad at one point that he required a pic line for antibiotics and other intense treatments. She became my go to person when I had questions.
My right knee became exceedingly weak, inflamed and so painful that I could not bend it. I walked like a little old lady, to walk up or down stairs I had to take on step at a time keeping my right knee straight. On October 21st I returned to my doctor’s office for an x-ray on my right knee and back. The x-rays didn’t reveal much of anything, but I later learned from my Lyme Literate Medical Doctor (LLMD) that both the back and knee symptoms were Lyme related. I learned a whole lot more from him over my treatment period.
Three days after increasing the antibiotic I contacted Vicki again.
“Question for you, I increased the Doxycycline a few days ago and now I feel like I’m dying. No exaggeration. I feel terrible. Is that normal?”
“You may be herxing. Make sure you are detoxing.”
“Herxing, what’s that?”
She explained what my doctor had not. The technical definition for a Herxheimer Reaction (i.e., herxing or die off) is the release of endotoxins from the destroyed cell walls of the bacteria responsible for Lyme Disease, Borrelia Burgdorferi, that causes an additional inflammatory response (i.e., debilitating physical and mental state) contingent to the amount of endotoxins released, which is directly correlated to the amount of Lyme bacteria killed (i.e., lysed).
It’s been eight months since I started treatment and during that time I have had several pretty serious Herxheimer Reactions. I felt like I had the flu, but worse. Lyme brain kicked in and I felt like I was totally losing it, like I had a sudden onset of Alzheimer’s. I lost my balance and held onto furniture as I walked through the house. Heart palpitations made me feel like I was having a heart attack. I seriously worried about dying from a heart attack. Lyme affects all organs and systems. Heart failure is not uncommon with Lyme patients.
I met a Canadian woman through Facebook. She and her husband were infected at the same time. They were both so sick they were hospitalized; he died of heart failure weeks after his diagnosis. She was bedridden for two full years and when she finally started to improve, she was re-infected. This time antibiotics did not work and she had to find alternative methods to heal. Finally now, after five years she is back on her feet. Lyme caused her to lose everything, including her husband, her dog that also had Lyme and everything they owned.
As the treatment progressed the symptoms escalated. Staying ahead of the Herxheimer reaction, the bacteria die-off made the process a lot easier.
I retained fluids resulting in severe edema in both legs. My lower left leg was and still is numb. My hands and feet tingled and nerve pain in various areas burned under my skin. My joints throbbed and burned. Left hip pain woke me up at night.
Walking any distance or up and down stairs took my breath away.
In April, six months into my treatment I had a booth at a longhorn sale to sell my jewelry. Folks who hadn’t seen me for a year or more told me how wonderful I looked. Apparently I hid the pain and fatigue very well as I propped myself up while talking to folks.
Before I close this installment I want you to know that you can heal from Lyme, but it may be challenging and may take longer than you expect.
It is now June, eight months since I started treatment and I can finally say that I have more good days than bad. My joints are still achy, but not as bad as before. My eyesight has pretty much balanced out. Other symptoms have lessened. My wrist still pains me, but I know that once this disease is under control, I will feel better than I ever have.
What I found helpful:
- “Advanced Topics in Lyme Disease Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses”. Sixteenth Edition. Copyright October, 2008. JOSEPH J. BURRASCANO JR., M.D.
I’ve given this report to my doctor and everyone I meet who has Lyme.
- Finding a Lyme Literate Medical Doctor (LLMD) to tailor a treatment program for me. LLMD’s are equipped with in-depth knowledge on how to attack this sneaky, evasive, and incredibly hard to treat disease. Lyme bacteria can mutate within the body hiding in biofilm to later surface as other diseases such as Alzheimer’s, ALS, Multiple Sclerosis, Parkinson’s and others (more about that in an upcoming post).
A good LLMD can start you on an in-depth multi-pronged treatment, which can help eradicate the bacteria hiding inside the biofilm.
- Detoxing to stay ahead of the Herxheimer Reaction. I will share my detox regimen in another blog post.
To read the other blog posts in this series click on the links below: