Understanding a Herx reaction is essential to understanding Lyme disease. It is the key to knowing that the diagnosis is correct. As the Lyme bacteria dies, it releases toxins into your body faster than the body can get rid of the toxins--which causes a major increase in all of your Lyme symptoms (joint pain, muscle pain, headaches, etc.)
As a Lyme patient undergoes treatment and endures a Herx--sometimes called a healing crisis--they need a lot of extra support. It has been compared to chemotherapy because the body is literally being poisoned in order to heal. Herxing can be unbearably painful and can last anywhere from a short amount of time to several weeks.
Unlike chemotherapy, where everyone rallies around a cancer patient and gives them the compassion, support and encouragement they need to get through their incredibly difficult treatments, Lyme patients are often left with little or no support, understanding or compassion. Instead of encouragement, Lyme patients are often met with hostility (especially in the medical field), negativity and disbelief. Even when we are in excruciating pain, we often don't look sick--which, sadly, makes it hard for many people to have compassion.
I have heard a lot--and I mean a lot--of negative things since I received my diagnosis of late-stage Lyme disease. Because Lyme disease is so poorly understood (both in the medical field and among the general public), most people do not--cannot--understand the devastation, the pain, of this disease in its chronic form unless experienced first hand.
I think often of the person who, slightly over a year ago, spewed hateful and thoughtless words to me about my treatment, my children and my doctor. Her poisonous words haunt me to this day, following me around and threatening to make me second guess myself. She hurt me deeply, but I chose to use the pain she caused me for something good--I started this blog to educate others about Lyme disease.
I chose to make my journey public so that others could understand this controversial, politically-charged Lyme disease hell that I, and countless others, are stuck in. Sometimes, though, I feel like people are watching me, waiting for something bad to happen so they can say, "Ha! See, I told you you were on too many medicines!"
Lyme patients get very weary of defending their doctors and treatment plans, and I am no different. Just like a cancer patient finds the best doctor who specializes in treating their cancer, I have researched the best doctor specializing in my disease. My doctor keeps up with the latest research on Lyme disease and the best available treatment options. I have chosen her very carefully and I am in the best of hands. How many of you can say that you truly love your doctor? I can; my doctor saved my life and I am forever grateful for her.
Before I started treatment, I lost the ability to care for myself and my children and I could not cope with the amount of pain I was in. A year and a couple of months after being in treatment, I have made worlds of progress. I can participate in life again and my pain is so much more bearable than it was before I started treatment.
However, my doctor doesn't feel that I am making good enough progress in my treatment for the amount of time I have been on antibiotics. The longest I've been off of antibiotics is two weeks, and the two times that that happened were very difficult and painful. My doctor and I have collectively decided to step up my treatment with intramuscular Bicillin injections--shots to the butt--three times a week, because they cross the blood brain barrier (or BBB).
Crossing the BBB is essential in the case of chronic Lyme disease. Any time Lyme disease has gone untreated for over a year, the Lyme bacteria will have had a chance to disseminate throughout the entire body. Lyme bacteria love to hide deep in tissues; they can and will bore into and attack any organ in the body--the brain included. Oral antibiotics are not able to cross the BBB, so when you attack the Lyme bacteria with oral antibiotics, the Lyme bacteria will run for safety--the brain.
I started oral penicillin this week, and next week I transition to the Bicillin injections. The injections are extremely painful and last several minutes. Any treatment that crosses the BBB causes a major Herx. This treatment is going to be very difficult and I'm going to get much worse before I get better. I'm scared, naturally, but I'm also very hopeful that this treatment will help me go into remission.
Thank you all for all of your love and support. I try my best to focus on the positive and not the negative, but sometimes that's easier said than done. It's hard being stuck in the middle of a controversial disease.
