Welcome To The School Of Lyme 6 Tips For Those Newly Diagnosed With Lyme Disease
Every day, I receive emails from people who have recently been diagnosed with Lyme disease. As most of us do when we hear a new medical term or leave a doctors office, these people frantically search the web looking for information. Sometimes they come across one of my blog posts. Then they write with questions about treatment, with requests for finding a good doctor and with prayers that I will be able to offer them some hope. Most of all, they want to know: What do I do to get better?
Because I find myself offering the same responses to many such patients, I thought I would create a School of Lyme For the Newly Diagnosed. Consider this a brief survey course on tick-borne illness, open to anyone who wants to learn the basics of what to do when you get a Lyme diagnosis.
Lesson 1: Its Lyme, not Lymes!
Its important to know the correct name of your disease! Many people mistakenly call it Lymes disease, assuming it was discovered by a Dr. Lyme. In fact, Lyme is named for the town in which it was first detected: Lyme, Connecticut. As for the names of co-infections, those are not as simple, but should still be part of your working vocabulary well get to those in Lesson 5.
Lesson 2: All cases are different
Lesson 3: Find an LLMD
Lesson 4: Get tested for co-infections
Lesson 5: Take probiotics
Lesson 6: Dont panic
Opinions expressed by contributors are their own.
Chronic Lyme Disease Patients Profoundly Debilitated
Many patients with chronic Lyme disease are profoundly debilitated. Investigators of the four NIH-sponsored retreatment trials documented that the patients quality of life was consistently worse than that of control populations and equivalent to that of patients with congestive heart failure. Pain levels were similar to those of post-surgical patients, and fatigue was on par with that seen in multiple sclerosis.
An LDo published survey of over 3,000 patients with chronic Lyme disease found that patients suffer a worse quality of life than most other chronic illnesses, including congestive heart failure, diabetes, multiple sclerosis and arthritis. Over 70% of patients with chronic Lyme disease reported fair or poor health. Similar results have been found in other studies. Many of the symptoms associated with Lyme disease are common in other diseases. The CDC surveillance criteria for confirmed cases specifically exclude most of the symptoms that patients report, including fatigue, sleep impairment, joint pain, muscle aches, other pain, depression, cognitive impairment, neuropathy, and headaches. However, these common symptoms can be severe and may seriously affect quality of life.
Can Lyme Disease Be Prevented
To prevent Lyme disease, you should lower your risk of getting a tick bite:
- Avoid areas where ticks live, such as grassy, brushy, or wooded areas. If you are hiking, walk in the center of the trail to avoid brush and grass.
- Use an insect repellent with DEET
- Treat your clothing and gear with a repellant containing 0.5% permethrin
- Wear light-colored protective clothing, so you can easily see any ticks that get on you
- Wear a long-sleeve shirt and long pants. Also tuck your shirt into your pants and your pant legs into your socks.
- Check yourself, your children, and your pets daily for ticks. Carefully remove any ticks you find.
- Take a shower and wash and dry your clothes at high temperatures after being outdoors
Centers for Disease Control and Prevention
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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.
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.
Common Causes Of Chronic Lyme Flares
One of the most common causes of Lyme flares is called the Jarisch Herxheimer reaction, or JHR. This is a reaction of a patient being treated for another infection with antibiotics. Those, who have Lyme bacteria, or spirochetes, will experience a symptoms flare-up within 24 hours of starting an antibiotic. The infection itself can also be a trigger for a Lyme disease flare-up.
If you have Chronic Lyme and experience a flare-up of unknown origins, here are some things that might be causing your relapse.
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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.
For Chronic Cases Of Lyme Does Iv Igg Hold Hope For Remitting Symptoms And Improving The Quality Of Life
To our knowledge, IV Ig has never been studied in a controlled fashion as a treatment for chronic Lyme disease, although some physicians are using this treatment for patients who are thought to have autoimmune-mediated neurologic sequelae from Lyme disease that persist after antibiotic treatment. There is insufficient data at this point to say whether IVIg treatment will have acute or sustained benefit for patients with persistent symptoms after being treated with antibiotics for Lyme disease. This is an area of research which is worth pursuing. Certainly, given that there is evidence that IV Ig may be beneficial for a variety of inflammatory and autoimmune diseases such as relapsing and remitting multiple sclerosis , myasthenia gravis, pemphigus, polymyositis , dermatomyositis , Wegener’s granulomatosis , and chronic inflammatory demyelinating polyneuropathy, it is reasonable to consider that this treatment may also be beneficial for patients with post-treatment Lyme disease if there is evidence of immunologic dysfunction. This treatment may be especially helpful if there is evidence of autoimmune-mediated neuropathic pain. IV Ig treatment is expensive and not without risks, so such treatment should only be initiated if the potential for benefits significantly outweigh the risks.
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What Is The Best Way To Remove A Tick And What If I Did Not Get The Entire Tick Out
The Centers for Disease Control provides this information about removing a tick: Remove a tick from your skin as soon as you notice it. Use fine-tipped tweezers to firmly grasp the tick very close to your skin. With a steady motion, pull the tick’s body away from your skin. Then clean your skin with soap and warm water. Throw the dead tick away with your household trash. Avoid crushing the tick’s body. Do not be alarmed if the tick’s mouthparts remain in the skin. Once the mouthparts are removed from the rest of the tick, it can no longer transmit the Lyme disease bacteria. If you accidentally crush the tick, clean your skin with soap and warm water or alcohol. Don’t use petroleum jelly, a hot match, nail polish, or other products to remove a tick. View a diagram of how to remove a tick.
I Was Wondering If Lyme Disease Affects Vision
Lyme disease can affect eye sight in a number of ways. If the extraocular muscles are involved as in a cranial nerve palsy, then the muscle weakness may result in double vision. Patients may report that their visual acuity appears to be less or that they have lost color vision or can’t see the full visual field. If there is central involvement of the visual pathways, then some patients may experience a marked sensory hyperacusis such as prominent painful light sensitivity or rarely visual trails. In very rare cases, an unattenuated increase of intracranial pressure from neurologic Lyme disease may result in blindness. Of course, any visual problems should be checked by an ophthalmologist or a neuro-ophthalmologist who can then perform a thorough differential diagnosis to rule out other conditions.
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What’s The Best Way To Prevent A Tick Bite
Ticks can’t fly or jump. But they live in shrubs and bushes and can grab onto you when you pass by. To avoid getting bitten:
- Wear pants and socks in areas with lots of trees and when you touch fallen leaves.
- Wear a tick repellent on your skin and clothing that has DEET, lemon oil, or eucalyptus.
- For even more protection, use the chemical permethrin on clothing and camping gear.
- Shower within 2 hours after coming inside. Look for ticks on your skin, and wash ticks out of your hair.
- Put your clothing and any exposed gear into a hot dryer to kill whatever pests might be on them.
How do you know if you’ve been bitten?
Since ticks are so small, you’ve got to have pretty good eyes to see them.
If you have a small, red bump on your skin that looks like a mosquito bite, it could be a tick bite. If it goes away in a few days, itâs not a problem. Remember, a tick bite doesnât necessarily mean you have Lyme disease.
If you notice a rash in the shape of a bull’s-eye, you might have a tick bite. Talk to your doctor about treatment.
If you have an allergic reaction to ticks, you’ll notice a bite right away.
Achy Stiff Or Swollen Joints
Joint pain and stiffness, often intermittent, are early Lyme symptoms. Your joints may be inflamed, warm to the touch, painful, and swollen. You may have stiffness and limited range of motion in some joints .
Pain may move around. Sometimes your knees may hurt, whereas other times its your neck or your heels. You may also have bursitis . Bursae are the thin cushions between bone and surrounding tissue.
The pain may be severe, and it may be transitory. More than one joint may be affected. Most often the large joints are involved .
People often attribute joint problems to age, genetics, or sports. Lyme should be added to that list, as these statistics indicate:
- One study estimates that 80 percent of people with untreated Lyme have muscle and joint symptoms .
- Fifty percent of people with untreated Lyme have intermittent episodes of arthritis .
- Two-thirds of people have their first episode of joint pain within six months of the infection .
- Use of anti-inflammatory drugs may mask the actual number of people with joint swelling .
Joint pain that comes and goes, or moves from joint to joint, could be a sign of Lyme.
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What To Expect At The Vets Office
If your pet has been diagnosed with uncomplicated Lyme disease, this is what you can expect to happen at your veterinarians office.
- Depending on the type of test used to screen for Lyme disease, a confirmatory test may be necessary.
- Urine protein screening — In general, only dogs who have symptoms of Lyme disease or protein in their urine should be treated with antibiotics.
- Dogs with protein in their urine should have regularly scheduled rechecks to monitor their condition.
Which Areas Are More Likely To Have It
The tick that causes Lyme disease has been moving from the Northeast and upper Midwest into the Southern and Western U.S., Mexico, and Canada. Cases in California and Florida are on the rise. After a drop between 2017 and 2018, the numbers jumped a little bit in 2019.
But most Lyme cases in 2019 were in 15 states: Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New
Jersey, New York, Pennsylvania, Rhode Island, Vermont, Virginia, West Virginia, and Wisconsin. Washington, DC, is also a hotspot.
In 2019, Pennsylvania had the most Lyme infections, with 6,763. New York was next, with 2,847 cases.
In the Southern U.S., where itâs hotter, ticks stay under leaves so they don’t dry out. This means people donât get Lyme from Southern ticks very often because they don’t usually come out to bite.
Even though people only report about 30,000 cases of Lyme infection in the U.S. each year, there are actually around 476,000 a year. The same tick also can spread other diseases, including babesiosis, anaplasmosis, and Powassan virus. Those diseases are also on the rise in the U.S.
Whoâs likeliest to get Lyme disease?
Boys up to age 15 and men between the ages of 40 and 60 are the most likely to get Lyme disease. Thatâs because they tend to play outside and go camping, hunting, and hiking.
Why are there more ticks now than there used to be?
There are several reasons why Lyme is spreading. Some of these are:
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How To Remove Ticks
Tick bites aren’t always painful. You may not notice a tick unless you see it on your skin. Check your skin and your children’s or pets’ skin after being outdoors.
To remove a tick:
The risk of getting ill is low. You don’t need to do anything else unless you become unwell.
What You Need To Know About Lyme Disease
Lyme disease is an infection caused by the spiral-shaped bacteria Borrelia burgdorferi, which is most commonly transmitted by a tick bite.
There are over 300,000 estimated new cases of Lyme disease in the United States each year.
The symptoms of Lyme disease depend on the how long the infection has been present in the body. The first sign of Lyme disease is often an expanding round or oval red “bullseye” rash.
If left untreated, people may develop neurological symptoms and heart problems, and have an approximately 60 percent chance of developing Lyme arthritis.
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Lyme Disease Frequently Asked Questions
If you have not done so already, remove the tick with fine-tipped tweezers.
The chances that you might get Lyme disease from a single tick bite depend on the type of tick, where you acquired it, and how long it was attached to you. Many types of ticks bite people in the U.S., but only blacklegged ticks transmit the bacteria that cause Lyme disease. Furthermore, only blacklegged ticks in the highly endemic areas of the northeastern and north central U.S. are commonly infected. Finally, blacklegged ticks need to be attached for at least 24 hours before they can transmit Lyme disease. This is why its so important to remove them promptly and to check your body daily for ticks if you live in an endemic area.
If you develop illness within a few weeks of a tick bite, see your health care provider right away. Common symptoms of Lyme disease include a rash, fever, body aches, facial paralysis, and arthritis. Ticks can also transmit other diseases, so its important to be alert for any illness that follows a tick bite.
Moody KD, Barthold SW, 1991. Relative infectivity of Borrelia burgdorferi in Lewis rats by various routes of inoculation.external iconAm J Trop Med Hyg 44: 135-9.
There are no reports of Lyme disease being spread to infants through breast milk. If you are diagnosed with Lyme disease and are also breastfeeding, make sure that your doctor knows this so that he or she can prescribe an antibiotic thats safe for use when breastfeeding.
What Causes Lyme Disease
Lyme disease is caused by bacteria transmitted through the bite of the tiny black-legged, or deer, tick found in the Eastern and Central U.S., and the western black-legged tick in the Pacific West. The riskiest months for Lyme disease are May through September, when young ticks are likely to be biting.
In humans, the bacteria may cause flu-like symptoms. If left untreated, it may attack many tissues — including the heart and nervous system — and trigger an immune response that can lead to Lyme arthritis.
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Could You Have Lyme Disease And Not Even Know It
The scary truth about this sneaky illness.
After you get home from a glorious summer hike, you probably do a few things: post photos of the great outdoors to Instagram, take a quick shower, and chow down on some post-workout snacks. But if checking yourself for ticks isn’t a part of that routine, you might be leaving yourself open to Lyme disease. “It happens frequently that people have Lyme disease and don’t know it,” says Andrea Gaito, M.D., a rheumatologist with a private practice in Basking Ridge, New Jersey.
Lyme disease is a bacterial infection transmitted by tick bites, especially those from deer ticks. Approximately 70 percent of deer ticks are infected, says Gaito. And those of you in New York, New Jersey, and Pennsylvania should be on high-alert: Your states have the highest rates of Lyme disease, which is much more manageable when caught early on, says Gaito.
It sounds pretty scary, but there are ways to figure out if you’ve got Lyme disease before it really has its hooks in youor even prevent it in the first place. Here’s what to look out for.