- by FRED DIAMOND
In the summer of 2021, I decided to learn more about how my partner’s chronic Lyme disease really affected her. It was a journey that has introduced me to thousands of tick-borne illness survivors around the world. It’s been an eye-opening journey.
My understanding of the disease was quite basic, so I took it upon myself to learn as much as possible to be more helpful. Along the way, I learned how difficult it can be to get support from family, friends, and even the medical establishment.
Chronic Lyme disease (or persistent or long Lyme) is a hidden epidemic that is hard to understand unless you have the disease and most people do not understand this mysterious disease. If anything, they may know that it is most likely caused by a tick bite and may cause fatigue, but little more. As a result, many survivors feel alone and isolated. There is limited and conflicting knowledge about treating the disease, so the struggle to get healthy is a constant battle. As a partner, family member, or friend, you must empathize, support, and show interest and care.
Life has changed. Your loved one’s way of functioning is different than before. She may move a little slower, think a little longer, and become tired more quickly. This may be temporary, or not exhibit itself for years. For her to function at her best, lifestyle adjustments may be needed. In speaking with many Lyme survivors, I learned an overabundance of patience goes a long way in helping your partner feel valued and less stressed. Unfortunately, the Lyme world is full of broken relationships, pain, and suffering.
But there is always hope. Amazing lives can be had, and people do often go into remission for many years. Loving relationships can thrive.
Not all people with Lyme disease experience the same exact symptoms. Many feel well for extended periods of time, while others never do. Many get to the point where they can have spectacular and fulfilling lives. Many Lyme survivors, I’ve found, do not want to be treated like puppy dogs, but they do want those who love them to know what they go through. Here are some symptoms Lyme survivors may experience. All these stages may overlap, and neuropsychiatric symptoms can be present even early on. Late-stage Lyme disease symptoms may appear days to months after the initial tick bite and may include but are not limited to:
- Rashes throughout the body
- Arthritis or joint pain and swelling, especially of large joints (such as the knee)
- Dizziness or shortness of breath
- Facial palsy, also known as Bell’s palsy—paralysis of one side of the face
- Heart palpitations or arrhythmia
- Inflammation of the brain or spinal cord
- Intermittent tendon, muscle, joint, nerve, or bone pain
- Severe headaches and neck stiffness
- Shooting pains, numbness, or tingling in the hands or feet
- Chronic Lyme disease
- Anxiety and paranoia
- Chronic inflammation
- Dizziness and shortness of breath
- Dysphonia (vocal cord damage)
- Fibromyalgia
- Hallucinations
- Hearing sensitivity
- Heart palpitations and irregular heartbeat
- Intermittent fevers, chills, and sweats
- Joint pain
- Memory loss
- Multiple-chemical sensitivities
- New food allergies
- Noise Sensitivity
- Numbness and tingling in the limbs
- Rage
- Respiratory infections
- Roving aches and stiffness
- Seizures
- Sore throats
- Stomach pains
- Tremors
- Vertigo
Learning About Lyme Disease
Once I began to study the disease in earnest, I learned that treating and coping with the disease can be all-consuming for chronic Lyme survivors. It can be a daily challenge dealing with the stress, pain, fatigue, and anxiety it causes, and researching ways to ease the pain and the variety of symptoms. I learned I was mostly ignorant about Lyme disease and how certain things affected it. For example, we once lived in a home that backed up to the woods. I loved seeing the deer come to the deck in the backyard. However, she was more cautious due to the possibility of deer ticks. I knew that deer ticks caused Lyme in many cases, but I had no idea the average deer could have between 2,000 and 4,000 ticks on it! I had no real idea at the time how dangerous mold might be to someone with Lyme, as it inhibits detoxing of the Lyme bacteria.
Introduction to Lyme Disease
I had barely heard of Lyme disease when we first met. I don’t even recall if I had any reaction when she first told me. I remember her telling me that she had issues with her adrenal glands on one of our first dates. I don’t think I had given my adrenals any thought until that moment. I have since learned that adrenal dysfunction could significantly trigger chronic illness woes. In addition, adrenal insufficiency can weaken the immune system, making it harder for the body to fight Lyme. I also learned that the Lyme bacteria is very tricky. The actual Lyme bacteria is a spirochete. The corkscrew-shaped bacteria, Borrelia burgdorferi, is the same family as the spirochete bacteria that causes syphilis. It is particularly tough to defeat in that it can affect any body organ, including the brain and nervous system, muscles and joints, and the heart.
It can also cross the placenta, and babies can be born with Lyme disease.
As the years went by, I was proud of my partner’s determination, courage, and strength. However, my happiness was blinded by the fact that although life seemed great, she was silently fighting this insidious disease every day. Fighting Lyme disease can be a never-ending battle. I’ve met many people who have overcome their Lyme disease by using a mixture of traditional medicine and other treatments. Some have been in remission for decades and have lived amazing, healthy, and love-filled lives. Good health, peace, and fun are out there, but you must continue being smart and strong, and do your best to stay as mentally, emotionally, and physically healthy as possible.
As a spouse, partner, or friend, the best you can do is get educated and be empathetic.
Fred Diamond is based in Fairfax, VA and can be contacted via Facebook or LinkedIn. He is the host of the “Love, Hope, Lyme” Podcast. His book, “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know” is available on Amazon. The e-version of the book is always free to Lyme survivors. Reach out to Fred on social media for your copy.