If you know someone with Lyme disease, the best way to support them is by understanding the disease. Lyme disease affects hundreds of thousands of people every year. It is contracted by coming into contact with a deer tick, or black-legged tick, that carries the Lyme bacteria called Borrelia burgdorferi.
When a deer tick latches onto the human body, it starts searching for a place to embed. Ticks do not bite; they break the skin’s surface and enter the body searching for the bloodstream.
Deer ticks feed on blood. While doing so, they transmit the Lyme bacteria directly into the bloodstream.
What Happens After Lyme Enters the Bloodstream?
Once in the bloodstream, Lyme bacteria start traveling to places in the body where they can hide, like scar tissue around the joints. Lyme bacteria are very intelligent. They can go dormant, hide in the lining of blood vessels, and move against blood flow. This makes it very difficult to get rid of the bacteria from the body.
When the body senses bacteria, it creates inflammation and sends it out to attack the bacteria. Because Lyme bacteria can hide so well, the inflammation is constant yet unsuccessful. This means the body is constantly inflamed, causing swelling and pain to joints, muscles, tissues, and more. The longer a person goes untreated for Lyme disease, the more chronic the symptoms become.
What Are Symptoms of Lyme Disease?
Symptoms in the beginning stages of Lyme disease include headaches, stiff neck, swollen joints, depression, anxiety, fever, and flu-like symptoms. In the second and third stages of Lyme disease, these symptoms worsen. A person may also experience facial paralysis, heart palpitations, dizziness, shooting pains in limbs, nerve pain, and spinal cord and brain inflammation.
Unless a person notices a bullseye rash at the time of the tick bite, Lyme disease often goes misdiagnosed or not diagnosed at all.
Why Can’t They Just Get Treatment for Lyme?
The person you know with Lyme disease wants nothing more than to get the proper treatment. Several problems exist, however.
- Most general physicians use only two tests for testing Lyme, the ELISA, and the Western Blot, both of which are less than 50% accurate. The reason? Because they only test for the antibodies of Lyme disease. When Lyme bacteria go dormant, no antibodies appear. A negative test result does not mean the person doesn’t have Lyme disease. To many doctors, however, it does.
- Without seeing a rash and getting a negative test result, many doctors misdiagnose Lyme disease based on the symptoms. If someone has flu-like symptoms, they may give someone a short round of antibiotics. If someone has depression, they may put them on an antidepressant—medicine for migraines, cream for arthritis or swelling of the joints, and so on.
- Many people do not know some Lyme-literate doctors have advanced methods of diagnosing and treating Lyme disease.
If you know someone with Lyme disease, even if they have been correctly diagnosed, encourage them to seek treatment from a Lyme literate doctor.
What Are Other Ways to Help Someone with Lyme Disease?
A person with Lyme disease must change their lifestyle and learn to live with Lyme disease, which is a condition that can significantly debilitate someone and interfere with their professional, personal, and social activities.
There are things you can do to help no matter what area of your life you fit in. Here are some tips below.
If You Are a Coworker of Someone with Lyme Disease:
A person with Lyme disease may have days or weeks that their symptoms make it difficult to do their best work. During these times, you can support them by encouraging them to ask for reasonable accommodations to make their job easier. Lyme disease may qualify as a disability under the American Disabilities Act. Most employers are happy to make changes, like allowing them to park closer to the building, installing anti-fatigue mats, or allowing telework during flare-ups.
As a coworker, the best thing you can do is understand Lyme disease and offer emotional support. Please encourage them to seek treatment with a Lyme-literate doctor.
If You Are a Friend of Someone with Lyme Disease:
As a friend, simply do for them what you would want to be done for you. Check-in regularly, offer to drive them to work or to run errands, and listen to them. Sometimes being able to talk about the symptoms helps.
Don’t give medical advice or disregard their symptoms. Lyme disease is real, and it can be debilitating. Friendships should last in good times and bad. When your friend has a Lyme flare-up, jump into action. Buy them dinner and drop it off at their home. Schedule a massage for both of you. Attend a Lyme disease support group with them. If there is not a group in your area, start one together.
Keep up to date with advances in Lyme diseases. Schedule them an appointment with a Lyme literate doctor and go with them to the meeting. The best Lyme-literate doctors may be outside the United States. This means you can make it a mini-vacation.
If you Are Family of Someone with Lyme Disease:
First, believe your family member when they tell you they have Lyme disease. Acknowledging your loved one has a disease means so much. It makes them feel as if they are not “crazy.” Other things you can do as a family is to continue to invite them to outings and events. They may not always be able to go, but at least they are included. Help them with chores they cannot complete. Attend support groups together. Love them the same as you would if they didn’t have Lyme disease.
Finally, insist your loved one get treatment from a Lyme literate doctor. If they must travel, go with them. Seeing the best doctor is worth the effort. Make healing your loved one a priority. Never stop trying to help them get the right treatment that can improve their life.