Seeking To Understand Her Illness
First off, I went online and purchased a few dozen books on Lyme, chronic illness, and anxiety. It was eye-opening! I joined a half-dozen Facebook groups and signed up for mailing lists at LymeDisease.org and other care organizations. I also called everyone I knew who ever uttered the word Lyme.
And I was shocked at what I discovered.
I thought I knew everything she dealt with, but I learned it was a constant battle for her to stay on top of treatments, supplements, and relief tools. Many days, all she could do was try to eliminate the pain, remove the anxiety, and find relief.
Even though I thought I was on top of things, I did not have a clue why certain things were so important.
Here are some things I discovered.
The Chance Of Getting Lyme Disease
Not all ticks in England carry the bacteria that causes Lyme disease.
But it’s still important to be aware of ticks and to safely remove them as soon as possible, just in case.
Ticks that may cause Lyme disease are found all over the UK, but high-risk places include grassy and wooded areas in southern and northern England and the Scottish Highlands.
SINCLAIR STAMMERS/SCIENCE PHOTO LIBRARY https://www.sciencephoto.com/media/263611/view
Ticks are tiny spider-like creatures that live in woods, areas with long grass, and sometimes in urban parks and gardens. They’re found all over the UK.
Ticks do not jump or fly. They attach to the skin of animals or humans that brush past them.
Once a tick bites into the skin, it feeds on blood for a few days before dropping off.
Things To Know About People With Post Treatment Lyme Disease
The information below can help you better understand the unique challenges and difficulties for people who are living with Lyme disease and tickborne illnesses.
1. Symptoms can change frequently. Because some symptoms are related to inflammation, they can vary from day to day. Someone with PTLD may feel up for hiking or playing sports one day, and be genuinely bedridden the next. Not being able to predict how you will feel, or knowing what you will be able to accomplish each day, can be incredibly frustrating.
What you can do: Be flexible and compassionate. Dont accuse someone of faking it, or say, they didnt seem sick yesterday. Try to understand when plans must be altered to accommodate changing symptoms.
2. Some people with PTLD have to watch what foods they eat. Some do not eat sugar, others find a gluten and dairy free diet important to their health. Their bodies may have difficulty processing alcohol or caffeine, and certain foods or beverages can affect their immune system. This makes dining at restaurants, or celebrating special occasions, difficult especially for children.
What you can do: Avoid making fun of someone who needs to make food choices that are atypical for our culture. Even better provide gluten free, dairy free, low sugar alternatives for your guest. Choose restaurants that can accommodate their dietary needs.
- Lyme, Tickborne Diseases & Mental Health Brochurevtlyme2020-04-27T16:54:47-04:00
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An Overview Of Medical Treatment For Lyme Disease
Medical treatments for Lyme disease include antibiotics, herbal antibiotics, and other pharmaceutical drugs besides antibiotics. Combinations of antibiotics are typically used for Lyme disease treatment because the three types of Borrelia bacteria that cause Lyme disease, Borrelia burgdorferi for short, Borrelia afzelii, and Borrelia garinii, morph into different forms that must be targeted with different antibiotics. Antibiotics that are commonly used to treat Lyme disease include penicillins , cephalosporins , macrolides , and tetracyclines .
The natural world is filled with botanicals with antibiotic properties. Herbal antibiotic protocols incorporate many of natures most potent antibiotic plants. Two of the most popular herbal antibiotic protocols for Lyme disease include the Buhner and the Cowden protocols. A few notable herbs in these protocols include Japanese Knotweed , which, in addition to being antibacterial, contains phytochemicals that alleviate Lyme-induced inflammation, and Cryptolepis sanguinolenta, a bitter botanical with potent anti-Borrelia activity.
Several non-antibiotic drugs are also used in Lyme disease treatment, including artemisinin, an antimalarial drug, and low-dose naltrexone , an immune system-modulating drug. You can read more about the applications of LDN for Lyme disease in my article, Low Dose Naltrexone for Lyme Disease Treatment.
Perform Daily Tick Checks
Check your body for ticks after being outdoors, even in your own yard. Search your entire body for ticks when you return from an area that may have ticks. Use a hand-held or full-length mirror to view all parts of your body and remove any tick you find. Take special care to check these parts of your body and your childs body for ticks:
- In and around the ears
- Inside the belly button
- In and around all head and body hair
- Between the legs
- Around the waist
Check your clothing and pets for ticks because they may carry ticks into the house. Check clothes and pets carefully and remove any ticks that are found. Place clothes into a dryer on high heat to kill ticks.
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Say No When You Need To
One form of self-care can be as simple as saying no to activities that you dont feel up to taking part in. People-pleasers often find it challenging to turn down invites or plans with friends and family, when actually, it can be harmful for Lyme disease patients to push themselves when what they really need is rest. Listen to your intuition if you really dont want to go to that party or if you simply dont feel up to doing a favor for a friend, just say no! Others will learn to respect your boundaries since youll be showing people that taking care of yourself is a priority.
Stage : Early Localized Disease
Symptoms of Lyme disease usually start 3 to 30 days after the tick bite. One of the earliest signs of the disease is a bulls-eye rash.
The rash occurs at the site of the tick bite, usually, but not always, as a central red spot surrounded by a clear spot with an area of redness at the edge. It may be warm to the touch, but its not painful and doesnt itch. This rash will gradually fade in most people.
The formal name for this rash is erythema migrans.
Some people with lighter skin have a rash thats solid red. Some people with darker skin may have a rash that resembles a bruise.
The rash can occur with or without systemic viral or flu-like symptoms.
Other symptoms commonly seen in this stage of Lyme disease include:
Youll have a general feeling of being unwell. A rash may appear in areas other than the tick bite.
This stage of the disease is primarily characterized by evidence of systemic infection, which means infection has spread throughout the body, including to other organs.
Symptoms can include:
- disturbances in heart rhythm, which can be caused by Lyme carditis
- neurologic conditions, such as numbness, tingling, facial and cranial nerve palsies, and meningitis
The symptoms of stages 1 and 2 can overlap.
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Can Lyme Disease Be Prevented
Most people with Lyme disease get the infection during the late spring, summer and early fall when immature ticks are out feeding. In warm climates, few tick bites take place during winter months.
Deer ticks are most often found in wooded areas and nearby grasslands. Theyre especially common where the two areas merge, including neighborhood yards where deer occasionally roam. Ticks dont survive long on sunny lawns. They dry out quickly and die.
Although only about 1% of all deer ticks carry Lyme disease-causing bacteria, there are areas in which over 50% of the ticks carry the bacterium. The diseased ticks are often found in the U.S. Northeast and upper Midwest areas. Ticks also live in coastal areas.
Black-legged ticks can get the infection from animals other than deer. Mice, voles and some squirrels can carry the bacteria.
How can I prevent tick bites?
The following tips can help you avoid tick bites:
Do Some Physical Activity
As hard as it can be to get up and be active in the middle of a Lyme flare-up, its actually in your best interest to do some physical activity regularly. It doesnt have to be a lengthy workout. In fact, even a short walk or swim can get your blood pumping and your heart rate going. Physical activity can do tons of remarkable things for the body, including improving your sleep, boosting your immune system, and lifting your mood. So even though exercise can often feel daunting, try to take on easier activities, such as stretching, yoga, or light weight-lifting to help keep physically active.
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Learning To Be Supportive When Your Partner Has Lyme Disease
The woman I love has been coping with chronic Lyme for many years. For most of the 11 years weve been together, I thought I was doing my best to support her.
However, I came to realize recently that her challenges went further than I had imagined.
My mantra was pay attention and keep her stress-free. Shortly after I met her, she told me she had Lyme disease. I knew that meant she was easily fatigued, often in pain, and sometimes anxious. But she also had good energy, was very funny and beautiful.
I also knew that she had dietary restrictions, which meant we had to find the best gluten-free pizza in town. I knew she was concerned about heavy metals which meant she did not eat fish which might have mercury. It meant she had beef and rice when I had sushi.
I knew she was concerned about going into the basement when we realized there was mold there.
But I had no idea about the challenges she faced with Lyme and the stress she was under until I decided to really understand what her life was like battling this insidious disease.
You see, I pictured her as beautiful, funny, warm, and kind. My family loved her. My friends were happy for me knowing that I had such an amazing, loving, and supportive partner.
But I would always wonder why she seemed guilty whenever I did something for her and why she would often say I was working too hard for her when I had so many other things to worry about.
Who’s At Risk Of Lyme Disease
The risk of getting Lyme disease is higher:
- for people who spend time in woodland or moorland areas
- from March to October because more people take part in outdoor activities
It’s thought only a small proportion of ticks carry the bacteria that cause Lyme disease. Being bitten doesn’t mean you’ll definitely be infected. However, it’s important to be aware of the risk and speak to a GP if you start to feel unwell.
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Letting Healing Take Its Course
Ive come to realize that healing from Lyme is a personal, private, and sensitive process that only the person going through it can figure out. Hopefully theres a good Lyme literate doctor who can help. For many, there are not. Im amazed at how many doctors still do not understand Lyme.
I had often said that her health was one of my two top priorities, since I know it was her main priority. With my business background, I might have treated it like a business process. What are all the steps we need to do to get to healing? But it does not work that way.
As you let the healing take its course, you need to let the person going through it lead the way. They know their body you do not.
No one has ever said they wanted to get Lyme. No one in their right mind would be thankful they have it. No one really wants to be a Lyme Warrior, But until acceptance comes in, healing is near impossible. I have come to realize that her recovery must be on her own terms and all I can do is educate myself and be as sensitive and available as needed.
Recovering from Lyme is a very personal process. Its different for everyone.
Cut Out Caffeine Alcohol And Smoking
Your body needs all the help it can get to fight through a Lyme disease diagnosis. That means you dont want to be consuming anything that can harm your body. Try to limit the amount of caffeine you take in since it can be hard on your body, as well as alcohol . As for smoking, you should cut that habit immediately as it can cause even more serious health problems for you.
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What Is Lyme Disease
Lyme disease is an infectious disease caused by the bacterium Borrelia burgdorferi.
B. burgdorferi is transmitted to humans by a bite from an infected black-legged or deer tick. The tick becomes infected after feeding on infected deer, birds, or mice.
A tick has to be present on the skin for approximately 36 to 48 hours to transmit the infection. Many people with Lyme disease have no memory of a tick bite.
Lyme disease was first recognized in the town of Old Lyme, Connecticut, in 1975. Its the most common tick-borne illness in Europe and the United States.
People who live or spend time in wooded areas known for transmission of the disease are more likely to get this illness. Additionally, people with domesticated animals that visit wooded areas also have a higher risk of getting Lyme disease.
How To Deal With Lyme Skeptics And Get The Support You Need
Weve all heard the saying before: Lyme disease is an invisible illness. Which means most people cant tell how much were struggling by merely looking at us.
Weve mastered the art of smiling despite being in pain, pushing through our fatigue, and showing up to events and outings, even when its to our detriment. Rarely does anyone see the painstaking measures we take to conserve our energy before we interact with others, or the hours and days it takes to recover from a day or evening out with friends, family, or coworkers.
When those around us cant visibly see that we are ill, they may become doubtful that our symptoms are as severe as we say they are. Suffice it to say, weve all encountered those types of people skeptics who question whether Lyme is real, or if were genuinely sick at all.
The question becomes, when it comes to the naysayers in our lives, should we spend our precious time and energy on educating them, or is it in our best interest to walk away? Below are six types of skeptics youre likely to encounter when navigating Lyme disease , plus tips from people who have been there on how to navigate these tricky situations.
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We’re Suffering More Than We Let On
While other symptoms of mine may appear more serious, my most debilitating ones are the constant feeling of a brick wall in the middle of my brain, making the most simple tasks feel overwhelming, and the all-consuming rage that hits me out of nowhere. These are difficult to describe in a way people sympathize with because they don’t involve physical pain, yet they can be so much worse. But people don’t see these symptoms or hear about them, so they assume I’m fine.
People see me as someone who’s keeping it all together. What they don’t realize is that with every work assignment I turn in, every flight I catch, and every tweet I post, I’m suffering inside. If your loved one with Lyme is managing to hold down a job and an active social life, that’s not a testament to how trivial the illness is. It’s a testament to how strong they are.
Many symptoms of Lyme are invisible, which can lead people to doubt that it’s really that bad or suspect us of exaggerating. But trust me: This disease is worse than anyone could exaggerate even if they tried.
Chronic Lyme Disease Survivors Share How They Beat Their Illness
Chronic Lyme disease can be a tricky disease to beat. Unlike short-term, acute Lyme, which most doctors treat with a few weeks of the antibiotic Doxycycline, there is no standard treatment for chronic Lyme. But that doesn’t mean there aren’t people beating it every day. The trick is just to experiment until you find what works for you.
“Don’t be afraid. How you think about this impacts how you approach it, and thus impacts your prognosis,”Kristin Reihman, MD, family medicine doctor and author of Life After Lyme, tells Bustle. “I know because I’ve seen it both in myself and in my patients that a holistic approach which takes into account not only the infections in your body but what you’re eating, how much you’re sleeping, how much water you’re drinking, what you’re doing about past trauma, whether you are surrounding yourself with loving, supportive people all those things matter and are within your control. Optimizing your lifestyle really can empower the immune system to start doing its job again.”
To find out what kinds of solutions work for chronic Lyme patients, 13 people who have either put chronic Lyme into remission or drastically reduced their symptoms reveal what they did.
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Stage : Late Disseminated Lyme Disease
Timing: Months to years after a tick bite
The infection can spread to the joints or contribute to altered brain function, a condition known as encephalopathy.
Common symptoms of late disseminated Lyme disease include:
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Arthritis with joint pain, warmth, and swelling that may be constant or come and go. Lyme disease-related arthritis typically occurs in one joint, usually the knee or another large joint, though it can also occur in more than one joint.
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Concentration issues, brain fog, and memory issues
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Nerve pain that feels like tingling, numbness, burning, or stabbing in the hands and feet
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Anxiety, depression, mood swings, and other neuropsychiatric issues
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Sleep disturbances such as difficulty falling or staying asleep, need for extended sleep, or unrefreshing sleep.
You may also experience a worsening of earlier Lyme disease symptoms.
In some people, Lyme disease can cause debilitating fatigue and sleep disturbances . Lyme disease-related arthritis typically occurs in a large joint like the knee .