WHAT DOES A LYME FLARE-UP FEEL LIKE? ASK THE LYME DOC
Lyme disease is a tick-borne illness that can lead to unpredictable disease flare-ups and remissions. The best know flare-up is called a Herxheimer reaction. A Herxheimer reaction was first identified in patients with syphilis and occurs when the body reacts to endotoxin-like products released by the death of bacteria in the body after starting an antibiotic. A flare-up may occur following a trigger or as part of the illness.
When a Lyme disease flare occurs, patients will notice a return of the symptoms they have experienced before or a worsening of existing symptoms. Some patients may also develop new symptoms. A flare-up can come and go and vary in intensity. What does a Lyme flare-up feel like? The symptoms of a flare-up can include:
- an increase in fatigue
- problems with memory and concentration, sometimes referred to as ‘brain fog’
- extreme sensitivity to bright lights, heat, cold, and noise
- muscle stiffness
- mood changes (including irritability)
- poor quality sleep
- numbness or tingling in hands and feet
- widespread muscle pain
- blurred vision
- general body pain
What triggers a flare-up?
One of the best ways to prevent a flare is to determine what might be causing it in the first place. These causes are called triggers. Triggers for Lyme disease vary by person, but they can include:
- emotional stress (such as a divorce, death in the family, or accidents)
- physical stress to the body (i.e., surgery, physical harm, concussion)
- life stress or stressful events
- infections, colds or viral illnesses
- diets including processed sugars and alcohol
- menstrual period
- lack of sleep
- traveling and/or changes in schedule
- changes in treatment
How do you prevent a flare-up?
There are ways to help prevent a flare-up but most importantly, patients need to listen to their bodies and identify triggers that set off a flare in symptoms. Following are several ways to prevent a flare-up:
- Treat your Lyme disease
- Reduce your stress
- Get enough rest and sleep
- Stay away from foods that make you feel worse, including alcohol and processed sugars
- Learn to pace yourself to avoid doing too much when you are feeling well
- Keep up your health
- Stay hydrated
- Work with your doctor to get your symptoms under control
- Some people find ‘positive thinking’ helpful
- Try focusing on the things you can do, rather than those you can’t
- You might find a mental health provider helpful
Editor’s note. What does a Lyme flare-up feel like? Ask the Lyme doc sponsored by Dr. Cameron
Great read. One of the toughest aspects of this illness(es) is deciphering what is causing what. I did notice trends throughout treatment but it was difficult to completely understand what was causing symptoms. Unfortunately, due to feeling worse, patients often want to either stop treatment or change doctors. I can not count the times I felt this as well. This disease(s) is unbelievable and causing unbelievable suffering. That’s the first thing to remember. The second thing to remember is it takes time. LOTS of time. For us, it took over 5 years of persistent treatment often using 4-5 things simultaneously, as well as copious supplements, dietary changes, and stuff I’ve forgotten or blocked out!
Stay the course! That’s my best advice. Don’t quit at the first sign of trouble. Discuss it with your practitioner but try and learn about the herxheimer reaction, and talk with other experienced patients, which alone can alleviate fear that you are somehow “off your rocker” or your treatment isn’t working.
Now, if you aren’t feeling anything during treatment, that’s a potential problem as well. One of the things I learned from Dr. Burrascano is drug dosage matters. Many doctors do not consider this issue, but I have found it be explain many patients’ lack of improvement. Other times they might have hit a plateau and need to switch up the medications. Since we are fighting stealth infections our treatment needs to also be stealthy and change often.
One personal experience relating to dosage remains embedded in my mind: the pharmacist neglected to tell me that since they were out of a certain dosage of a particular antibiotic, they gave me a different dosage of which I was required to take double the amount to equal what I took previously. So instead of taking 500mg, I was only getting 250mg. Immediately I began suffering with unimaginable PAIN in my shoulder joint. I was a wreck. During this time my PT was offering free Biomat sessions. I went daily and told him to crank it as high as it would go. He covered my entire body – but not my head – creating a “sauna” effect. I either did 30 or 60 minutes of this DAILY and it got me by. After nearly a week of this, I discovered the dosage error and started taking TWO pills which gave me 500mg. Within ONE dose, PAIN GONE! POOF!
This little unplanned experiment taught me much about the importance of dosage. And bizarrely, dosages are often somewhat arbitrarily given to everyone despite their weight and size. Even veterinarians weigh pets to determine dosage! Why isn’t this considered for humans!
So, one of the first things I ask patients who aren’t herxing or noticing any change is what dosage they are taking and if they’ve discussed the dosage issue with their practitioner. Please keep this in mind – I believe this is a major reason why some don’t see improvement or stagnate.