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
Symptoms Of Post Treatment Lyme Disease
- Include severe fatigue, musculoskeletal pain, & cognitive problems
- Can significantly impact patients health and quality of life
- Can be debilitating and prolonged
Our research indicates the chronic symptom burden related to PTLD is significant. Although often invisible to others, the negative impact on quality of life and daily functioning is substantial for PTLD sufferers.
The chronic symptom burden related to Lyme disease is considerable, as shown on the left side of the graph above, and statistically significantly greater than the aches and pains of daily living experienced by the control group, on the right.
What To Expect When Starting Treatment
|The bad days are the days where you learn to understand that treatment is actually worse than doing nothing to combat your symptoms in the first place. Bad days will lead you to question your own sanity but you can’t lose control here. This stage is critical to get through. There is one important thing to remember with bad days and that is they’re worth it. It may be hard to see when you’re in such a debilitated stage of recovery but you’re actually killing off spirochetes. These little guys don’t go without a fight and they make that very clear on your worst days.|
|On a good day, you’ll question yourself as to whether you have beaten the disease or if you even ever had it in the first place. Don’t get cocky here. Your body is still flooded with the spirochetes and you happen to be experiencing a day when they’re in hiding or your body is just up to par as far as detoxing. A good day may turn into many good days but don’t tempt yourself to carry on with old habits here. You must remain vigilant of the dire situation because once you up your dose of antibiotics, reality will set right back in.You will quickly be reminded that your body is in a fragile state and that you’ve been fooled. Your bad days are going to be when your herx is at its worst. Bad days can linger for a few days or all the way up to a couple weeks.|
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Ongoing Symptoms Of Lyme Disease
A few people who are diagnosed and treated for Lyme disease continue to have symptoms, like tiredness, aches and loss of energy, that can last for years.
These symptoms are often compared to fibromyalgia and chronic fatigue syndrome.
It’s not clear why this happens to some people and not others. This means there’s also no agreed treatment.
Speak to a doctor if your symptoms come back, or do not improve, after treatment with antibiotics.
The doctor may be able to offer you further support if needed, such as:
- referral for a care needs assessment
- telling your employer, school or higher education institution that you require a gradual return to activities
- communicating with children and families’ social care
Page last reviewed: 05 July 2021 Next review due: 05 July 2024
Can Lyme Disease Be Prevented
Not all cases of Lyme disease can be prevented. But you can help protect your family from tick bites. If you go into an area where ticks live, be sure to:
- Stay in the middle of the trail, instead of going through high grass or the woods.
- Wear closed shoes or boots, long-sleeved shirts, and long pants. Tuck pant legs into shoes or boots to prevent ticks from crawling up legs.
- Use an insect repellent.
- Consider treating clothing and gear with permethrin to repel ticks. When used properly, permethrin is safe for all ages. But don’t use it on clothing or other material a child may suck on or chew.
- Wear light-colored clothing to help you see ticks more easily.
- Shower and wash hair after being outside to remove ticks before they attach.
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Emotional & Spiritual Healing
One of the first doctors I worked with once diagnosed with lyme told me that if I did not address the emotional / spiritual side of being chronically ill, that I would never get better. I wasnt really sure what this meant but started exploring how I could incorporate healing in this area. I dove deep, within and with various modalities and some of this may seem out there, but it worked for me. This part of your journey Is very individual so you need to dig deep and find what works for you as well.
Hyperbaric Oxygen Therapy For Lyme Disease
Hyperbaric oxygen therapy involves exposure to 100 percent oxygen at a high pressure. Its often in a room called a hyperbaric oxygen chamber to promote wound healing.
There isnt much research about the effectiveness of hyperbaric oxygen therapy for Lyme disease. But a 2014 case study from Taiwan reports that it treated Lyme disease in a person who hadnt responded to antibiotics. Still, more large-scale studies are needed to understand whether its an effective treatment.
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Treatment For Chronic Lyme Disease
Sometimes, people go through treatment for Lyme disease but their symptoms donât go away. If this lasts over 6 months, itâs known as chronic Lyme disease or âpost-treatment Lyme disease syndromeâ .
Doctors still arenât sure why some people get PTLDS. Some believe that getting Lyme disease may cause damage to your tissues or immune system. Others believe itâs because the bacteria that causes Lyme hasnât completely gone away.
There is little evidence that taking more antibiotics at this stage will help. They may actually be harmful. Instead, your doctor will focus on treating the symptoms youâre still having. This will be different for everyone. Some people could benefit from a medicine that relieves fatigue, while others may need a drug that can help with headaches or very sensitive skin.
Your doctor could also have you try a treatment that helps people with chronic fatigue syndrome or fibromyalgia.
More research is needed to figure out how best to treat PTLDS. Itâs something that can be frustrating. Just remember: Many people who have this condition do start feeling like their old selves after a few months.
What Do I Do If I Find A Tick On My Skin
Dont panic. Use fine-tipped tweezers to grasp the tick as close to the skins surface as possible. Pull up with steady, even pressure. Be careful not to squeeze or twist the tick body. Sometimes parts of the tick remain in the skin. You can leave them alone or carefully remove them the same way you would a splinter. Do not use heat , petroleum jelly, or other methods to try to make the tick back out on its own. These methods are not effective.
Wash the area where the tick was attached thoroughly with soap and water. Keep an eye on the area for a few weeks and note any changes. Call your doctor if you develop a rash around the area where the tick was attached. Be sure to tell your doctor that you were bitten by a tick and when it happened.
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Q How Can I Speed My Recovery And Provide The Best Chance Of Getting Well
A. Recovering from Lyme requires more than killing germs with herbal anti-microbials or prescription antibiotics. In my experience, a person must take steps to correct many problems caused by Lyme that suppress the immune system. To improve immune function, it is essential that a person follow my Lyme disease treatment guideline: The Ross Lyme Support Protocol.
To support the immune system and to recover from Lyme:
- use an adaptogen to help the immune system deal with stress,
- correct hormonal imbalances,
What Causes Lyme Disease
People get Lyme disease when they are bitten by an infected tick. Ticks live in areas with a lot of plant life, such as wooded areas or fields. They sit near the top of grassy plants and low bushes. They wait there for people or animals to brush up against them. Ticks can crawl on your clothes or body for up to several hours or more before attaching to the skin.
Ticks can attach to any part of your body. They are usually found in hard-to-see areas, including the armpits, groin, or scalp. An infected tick needs to be attached to your skin for 36 to 48 hours before it passes the bacteria on to you.
People who spend time in outdoor areas where ticks are common are at higher risk of getting tick-borne diseases.
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Lyme Disease Is A Bacterial Infection Transmitted By The Bite Of An Infected Tick When Nicole Greene Was Bitten She Had Never Even Heard Of Lyme Disease Here Is Her Story
Sometime in the summer of 2001, a tiny tick found its way into Nicole Greenes hair. It burrowed through her thick curls to her scalp and dug itself in. She didnt notice it. She never felt a pinch, a tweak or an itch. She only discovered the unwelcome hitchhiker by accident while pulling her unruly hair into a pony tail. I felt something on the right side of my head, she says. A friend who was with her pulled the tick out and flushed it down the toilet. I never even saw it, Ms. Greene recalls.
She soon forgot the incident, unaware that this tiny creature, barely bigger than a sesame seed, had left behind an enormous problem: Lyme disease.
After struggling with pain and constant sickness for more than a dozen years, Nicole Greene says her Lyme disease is under control and she’s not afraid to feel optimistic.
Named for Lyme, Connecticut where the disease was first identified over 50 years ago, Lyme is a bacterial infection transmitted through the bite of a black-legged or deer tick. Currently, its the most common insect-borne infection in the United States. The Centers for Disease Control and Prevention significantly upped its estimate of cases in the US to over 329,000 new cases of Lyme disease each year. That number is 10 times higher than the 30,000 plus confirmed cases reported annually to the agency.
Who Gets Lyme Disease
Anyone bitten by an infected deer tick can get Lyme disease. Most U.S. cases of Lyme disease happen in Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, Virginia, and Wisconsin. But Lyme disease is also found in other parts of the U.S., Europe, and Asia.
Other things that might increase a person’s risk include:
- spending a lot of time outdoors in tall grass, brush, shrubs, or wooded areas
- having pets that may carry ticks indoors
- activities such as yardwork, hiking, camping, fishing, or hunting in tick-infested areas
Also Check: What Are The Symptoms Of Lyme Disease From Ticks
Other Natural Treatments For Lyme Disease
The treatments discussed above are only some of the natural treatments that claim to treat Lyme disease. According to a 2015 study looking at the alternative treatments found during an Internet search, other natural treatments people use for Lyme disease include:
- saunas and steam rooms
The investigators noted that theres no research backing up these treatments, any many dont have a logical rationale behind them.
What Is Post Treatment Lyme Disease
Post Treatment Lyme Disease represents a research subset of patients who remain significantly ill 6 months or more following standard antibiotic therapy for Lyme disease. PTLD is characterized by a constellation of symptoms that includes severe fatigue, musculoskeletal pain, sleep disturbance, depression, and cognitive problems such as difficulty with short-term memory, speed of thinking, or multi-tasking. In the absence of a direct diagnostic biomarker blood test, PTLD has been difficult to define by physicians, and its existence has been controversial. However, our clinical research shows that meticulous patient evaluation when used alongside appropriate diagnostic testing can reliably identify patients with a history of previously treated Lyme disease who display the typical symptom patterns of PTLD.
Recommended Reading: Symptoms Of Lyme Disease In Humans After Tick Bite
Solvents Chemicals & Pesticides
I also tested high for solvents and attribute this to living near the freeway in San Francisco and on Wilshire Blvd for years in Los Angeles. We used to get black soot on our patio and we were breathing that in our home to. Always be very conscious of where you are living and dont live too close to freeways or busy roads. Also make sure to have a chemical free home and buy organic to avoid pesticides. Moving away from the freeway and living by the beach as well as all the detox I was doing fortunately cleared the solvents from my body.
It is very important to use non toxic cleaning products and beauty and skin care products as well as we want to limit our chemical exposure while trying to detox and heal.
Eat A Big Healthy And Calorie And Nutrient
|In experiencing every symptom known to man for what seems like forever, youll likely reach a point where any new symptom you experience is automatically attributed to chronic Lyme. While chronic Lyme does have almost every symptom in the book, feeling tired and not well can be found in another.Try the metaphorical book calories and nutrition, and once you do, youll realize how much energy the human body needs to just maintain a temperature of 98.6 degree Fahrenheit when nothing else around it is, let alone heal from chronic Lyme.|
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Later Symptoms Of Lyme Disease
More serious symptoms may develop if Lyme disease is left untreated or is not treated early. These can include:
- pain and swelling in the joints
- nerve problems such as numbness or pain in your limbs
- memory problems
- difficulty concentrating
Some of these problems will get better slowly with treatment. But they can persist if treatment is started late.
A few people with Lyme disease go on to develop long-term symptoms similar to those of fibromyalgia or chronic fatigue syndrome. This is known as post-infectious Lyme disease. It’s not clear exactly why this happens. It’s likely to be related to overactivity of your immune system rather than continued infection.
Lyme Disease Natural Treatment Safety
If you decide to explore natural treatments for Lyme disease, talk to your doctor about the risks beforehand. Natural treatments, just like traditional treatments, can still be toxic or dangerous. But in combination with medical treatment, a complementary approach might improve health.
For example, a product called bismacine contains an injectable form of bismuth. This is a type of metal thats a common ingredient in some digestive aids. But bismacine contains a higher dose of bismuth thats injectable. Injecting a high dose of bismuth can cause bismuth poisoning, which can lead to heart and kidney failure.
Other natural treatments may interact with other medications or supplements you take. Your doctor can help you confirm whether any medications you currently take will interact with treatment youre interested in trying.
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Symptom Management Strategieskeep Track Of What Works And What Doesn’t
A number of strategies are aimed at helping you feel better. Though they do not treat Lyme disease, they can help you manage your symptoms, from fatigue and brain fog to pain and sensory sensitivities.
It may take trial and error and time to find the approaches that help you. A weekly journal can help you track what you try and how it makes you feel.
Keeping Track Of Flare
Having this information on hand will help you identify patterns and learn what works for you specifically to manage Lyme disease.
Lyme disease is still not very well understood. Because of that, finding a healthcare provider who is Lyme literate, or who specializes in treating Lyme disease, is very important. These practitioners have the most up-to-date research and information, and they understand the ways in which Lyme disease can manifest.
You can find these healthcare providers through Lyme disease organizations, or by asking people in support groups or others with Lyme disease.
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