Healthsee The Full Today Series On How Women Are Treated Or Mistreated At The Doctor’s Office
For women who have Lyme disease, the struggle can be especially difficult, given the complicated nature of the disease.
“The problem with Lyme disease is that there are so many different strains,” said Dr. Andrea Gaito, a New Jersey-based rheumatologist who specializes in treating Lyme disease. “One person can have it and have headaches, someone else can have joint pain, someone else can have palpitations. And none of these are specific to Lyme. There’s no Lyme test that’s 100% accurate. Unless you have a tick in a baggie, literally, and a bulls-eye rash, there’s sometimes a delay in diagnosis.”
Moving Forward With Chronic Illness
Today Tait works as a writer and speaker. Her first book publishing in August, The View from Rock Bottom: Discovering Gods Embrace in our Pain, chronicles her journey with her health and how it impacted her faith. Writing gives her the freedom to work from home, but she’s well aware that for many years the financial burden has been on her husband, a software developer.
They recently took a rare vacation to Mexico. It was the first time theyd been on a plane together since their honeymoon more than a decade ago.
Tait has days when she feels strong enough to attend a speaking engagement at a church or play with her kids at the park. But she also has days when she struggles to move her body and relies on her cane.
For Tait, the hardest part is knowing that she would, in all likelihood, be completely healthy today had she just been diagnosed sooner. And the scariest part is knowing that it was all out of her hands.
I was asking for the right tests. I was saying the right things. I was showing up constantly and saying, This isnt working, Im not well. But eventually you start to doubt yourself, when you hear enough times that maybe its all in your head.
Now that she has answers, she can at least begin to move forward.
A Long Journey Of Pain And Misdiagnosis
Tait estimates that she had Lyme for about 15 years before she was diagnosed. She thinks she was bitten by a tick as a teen in Californias Bay Area, where she grew up. In high school, she was a dancer. Suddenly she was getting injured more than usual joints coming out of their sockets and ligaments tearing after doing normal routines. During class, she was exhausted and having trouble concentrating. Her grades started to slip.
Looking back, its now clear I was neurologically starting to not be myself, she said. But when youre a teenager, a lot of it is just attributed to, Youre a teenager!
Tait, who was thin with a bubbly personality, recalled one doctor telling her she was too pretty to be sick.
Eventually she was diagnosed with depression and prescribed an antidepressant.
In college, Tait started to experience seizures and was diagnosed with epilepsy.
My fatigue was getting worse, she said. I was dropping out of classes left and right and I would get sick constantly. Thats where this weird sort of self-fulfilling prophecy came in: I was depressed. But I wasnt sick because I was depressed. I was depressed because I was sick.
But once they put epilepsy down , at least I had turned a corner where they had a label on something, Tait continued. Then would just add things You have fibromyalgia and you probably also have chronic fatigue syndrome. But they didnt tell me how to fix it. Everything was, Try antidepressants because we dont really know.
Don’t Miss: Arizona Lyme Disease Treatment Center
Can You Have Lyme Disease And Not Know It
Ask the Lyme Doc series explores some of the most commonly asked questions about Lyme disease and other tick-borne illnesses. Individuals can have Lyme disease and not know it for years, mistakenly attributing their symptoms to other illnesses or being misdiagnosed. This edition explores the question: How long can you have Lyme disease without knowing it?
There are several published papers that address the question: Can you have Lyme disease and not know it? Logigian and colleagues described chronic neurologic Lyme disease patients who were ill for up to 14 years prior to being diagnosed. Their symptoms included fatigue, poor memory, a sleep disturbance, headaches, lightheadedness, and joint pain.1
Fallon and colleagues described Lyme disease patients who had been misdiagnosed on average for 2 years with a psychiatric disorder. They were initially presumed to suffer from paranoia, dementia, schizophrenia, bipolar disorder, panic attacks, major depression, anorexia nervosa, and obsessive-compulsive disorder.2
Another study by Fallon found that Lyme disease patients with Lyme encephalopathy were ill an average of 2 years before being diagnosed.3
Cases with persistent Lyme disease symptoms
How long can you have Lyme disease and know it?
Klempner described individuals who were ill an average of 4.7 years before they enrolled in a Lyme disease clinical trial, sponsored by the National Institutes of Health .5
Related Articles:
References:
Getting Tested For Lyme Disease
Lyme disease is often misdiagnosed or entirely missed at early stages. As mentioned above, this can allow the disease to develop into more severe and/or chronic Lyme disease down the road. This is why its so important to get an accurate diagnosis as early as possible.
There are a few factors that influence a persons ability to get a reliable diagnosis. One is the timing of the test. Because even the most accurate Lyme disease tests detect antibodies, not the pathogens themselves, its important not to get tested too early after possible exposure. If you test too early with conventional tests, you may not have enough antibodies yet, and the test results could be negative even though you do have an infection. However, there are tests that specialize in early detection IGeneX offers one, the IgXSpot test.
Its also important to recognize that there are at least 18 distinct types of Borrelia that cause Lyme disease, and if your test is only designed to detect one or two types which is unfortunately all too common it will miss infections caused by other types. The most accurate tests for Lyme disease are designed to detect all the different types of Lyme disease bacteria found in North America and Europe.
To learn more about what makes certain types of Lyme disease tests more reliable than others, read IGeneXs blog on the most accurate test for Lyme disease.
Can a tick be tested for disease?
Don’t Miss: Is There A Human Vaccine For Lyme Disease
What Should You Do If You Find A Tick
-
Don’t touch the tick with your bare hand.
-
Use a pair of tweezers to remove the tick. Grab the tick firmly by its mouth or head as close to your skin as possible.
-
Pull up slowly and steadily without twisting until it lets go. Don’t squeeze the tick, and don’t use petroleum jelly, solvents, knives, or a lit match to kill the tick.
-
Save the tick. Place it in a plastic container or bag so it can be tested for disease, if needed.
-
Wash the bite area well with soap and water and put an antiseptic lotion or cream on the site.
A Note On Travel History
We have published blogposts before now on the importance of keeping a record of your travel history, and this is so important when thinking of Lyme Disease, because it is so much more prevelant in certain areas of the world where ticks inhabit. Lyme Disease may not be the first diagnosis to enter a Doctors mind until one of these areas is mentioned, and using a symptom checker like Isabel can bring up a different set of possible diagnoses depending on the country entered. For example, changing the region from North America to the Caribbean will bring up altered suggestions, as demonstrated in these two screenshots. Being aware of your travel history could save vital time in reaching the correct diagnosis for many diseases including Lyme Disease.
Recommended Reading: Do You Have To Fast For Lyme Disease Blood Test
What Are The Treatments For Lyme Disease
Lyme disease is treated with antibiotics. The earlier you are treated, the better it gives you the best chance of fully recovering quickly.
After treatment, some patients may still have pain, fatigue, or difficulty thinking that lasts more than 6 months. This is called post-treatment Lyme disease syndrome . Researchers don’t know why some people have PTLDS. There is no proven treatment for PTLDS long-term antibiotics have not been shown to help. However, there are ways to help with the symptoms of PTLDS. If you have been treated for Lyme disease and still feel unwell, contact your health care provider about how to manage your symptoms. Most people do get better with time. But it can take several months before you feel all better.
Could I Have Lyme Disease
For the animal owners amongst you, ticks are an all too familiar problem at this time of year. Found in woodland and areas with overgrown vegetation, they start off as small spider-like insects, virtually invisible to the human eye. Ticks cant fly or jump but they can climb onto your clothes or skin if you brush against them. Once latched onto flesh, be it animal or human, their bodies quickly balloon with the blood theyve sucked in before eventually dropping off some days later as an engorged, grey ball. But as ticks are very small with a painless bite, you may not even realize you have one attached to your skin. Hard to believe then that such a tiny creature can be the carrier of a potentially devastating disease. While some ticks are completely benign, increasing numbers, especially in parts of Europe and the US, are infected with the Borrelia bacteria which goes on to cause Lyme Disease.
Recommended Reading: Lyme Disease Test Turnaround Time
Unexplained Pain And Other Sensations
Some people with Lyme may have sharp rib and chest pains that send them to the emergency room, suspecting a heart problem 00090-7/abstract%20″ rel=”nofollow”> 27).
When no problem is found, after the usual testing, the ER diagnosis is noted as an unidentified musculoskeletal cause.
You can also have strange sensations like skin tingling or crawling, or numbness or itchiness 00090-7/abstract%20″ rel=”nofollow”> 27).
Other symptoms have to do with cranial nerves.
- Ear-ringing . Tinnitus can be a nuisance, especially at bedtime when it seems to get louder as youre trying to fall asleep. About 10 percent of people with Lyme experience this (
- Hearing loss. One study reported that 15 percent of Lyme patients experienced loss of hearing .
- Jaw pain or toothaches that are not related to actual tooth decay or infection.
Summary:
How Does Lyme Cause All Those Symptoms
Not every aspect of how Lyme Disease bacteria work is fully understood. I did a simplistic explanation of one function of the borrelia spirochete’s initial action within the body here. There is a lot more going on in the body that leads to this hefty list of ailments.
1. As I noted, one of the first jobs of the spirochete is to release neurotoxins. As the name implies, neurotoxins release toxins into the nervous system, inhibiting communication of neurons through synapses .
When your neurons don’t communicate, this leads to things like memory impairment, paralysis, seizures, neuropathy , and myopathy .
2. Additionally, spirochetes cause our body to produce too many cytokines. Cytokines are proteins who’s job is to fight infection.
In a normal infection, the release of cytokines would pump up, do its job and then reduce again. However, as in my link above, the corkscrew bacteria of Lyme Disease make their way into every organ of the body causing the body to produce cytokines in excess.
Excess cytokine production leads to inflammation which leads to pain and muscle wasting, immune system suppression, disturbed sleep, severe fatigue, thyroid and adrenal problems, problems with body organs and more.
Recommended Reading: Costco Pharmacy East Lyme Ct
Be Aware But Don’t Live In Fear
My children still go into the woods to play.
Do I worry?
Yes, but living in fear of the unknown will paralyze me so I choose daily to trust that God will protect them and I take simple steps to be proactive.
Interested in simple steps you can take for Lyme disease prevention and actionable steps in case you are bitten?
I’ll hope to be back soon with more tips for you so stay tuned.
For further reading, you might be interested in the following which goes into more detail in answering the question of “what is lyme disease” and what can be done to heal from it. It hasn’t been reviewed by either Corah or Adrienne but it has fabulous reviews on Amazon.
Have you been diagnosed with Lyme Disease—or wondered “What is Lyme Disease” or if you have this horrid disease?
Corah Webber is a writer, artist, and mother of 2. She splits her time between homeschooling, doodling in notebooks, researching health problems, and daydreaming. Her passion for health and blogging arose out of her own 18 year struggle with a misdiagnosed health condition that turned out to be Lyme Disease. She dreams about starting an urban farm and going back to school to be a Naturopath Doctor once she is feeling better.
Is There A Blood Test For Lyme Disease
If your doctor suspects that you have Lyme disease, they may order two blood tests. These will look for signs that your body is trying to fight it off. The results are most precise a few weeks after youâve been infected.
These tests are:
ELISA test. This test canât check for the bacteria that causes Lyme disease. It can only look for your immune systemâs response to it.
Once Borrelia burgdorferi gets into your blood, your body begins to make special proteins called antibodies to fight it off. The ELISA test checks for those antibodies.
Although itâs the most common way to check for Lyme disease, the ELISA test isnât perfect. It can sometimes give false âpositiveâ results. On the other hand, if you have it done too soon after youâve been infected, your body may not have developed enough antibodies for the test to detect them. This will give you a ânegativeâ result even though you do have Lyme disease.
Western blot test. Whether your ELISA test comes back positive or negative, your doctor will need to do this blood test, too.
A Western blot uses electricity to split certain proteins in your blood into patterns. This is then compared to the pattern of people known to have Lyme disease.
At least five band matches means that you have Lyme disease. Still, not all labs have the same standards. Thereâs a chance that you could get a âpositiveâ result from one and a ânegativeâ result from another.
- Alzheimerâs disease
You May Like: Symptoms Of Lyme Disease In Adults
The Controversy Of Blood Donation
Admittedly, some tick-borne diseases can transmit to new carriers through blood transfusion. Lyme is not considered a threat for blood-transferred diseases. However, researchers see another potential reason to worry: an increasing growth rate, with up to 300,000 new infections each year.
Lyme disease occurs 6x as much as HIV/AIDS, but with Lyme research receiving less than 1% of the funding given to HIV research, there is simply not enough information on whether Lyme can actually present a threat. This information becomes even more confused when considering the different stages of the disease from its onset to chronic Lyme disease, or Post Treatment Lyme disease Syndrome .
Stage : Early Disseminated Lyme Disease
Early disseminated Lyme disease occurs several weeks to months after the tick bite.
Youll have a general feeling of being unwell, and 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.
You May Like: Bed And Breakfast Old Lyme Ct
Can You Donate Blood With A Lyme Disease Diagnosis
People across the globe are experiencing an unprecedented time of uncertainty as COVID-19 continues to spread. However, this pandemic has also brought about something wonderful: people stepping up to help their fellow citizens. But there are concerns about blood donation. Who is allowed to donate? Can patients with Lyme disease donate blood?
I Have Chronic Lyme And Got Vaccinated For Covid
9/17/2021
Editors Note: While the COVID-19 vaccine has been politicized, this post will not be in any way, but rather objective in why I decided to get the Pfizer COVID-19 vaccine and how I responded to it to help others with chronic Lyme Disease make an informed decision. Also, for the record, Ive never tested positive for COVID-19, nor have I ever had symptoms suggestive of contracting COVID-19.
Also Check: Lyme Disease Support Group Nj
Does Bullseye Rash Automatically Mean I Have Lyme Disease
Misconception: If you contract Lyme, youll develop a bullseye rash. The truth: Theres no guarantee of that particular rash showing up. And without the bullseye, other Lyme symptoms can be hard to piece together. The CDC describes the classic bullseye rash as a “circular red rash with a central clearing that slowly expands.”
Can You Live A Normal Life With Lyme Disease
What do patients say?
Fontaine, a Lyme warrior, says the following: Yes, for the most part. But Lyme is a chronic, degenerative condition a multisystem inflammatory attack that must be intermittently battled on myriad fronts. There will be times of normality and times of distress. Peaks and valleys. Its critically important, then, that you guard your well-being and take good care of your body. Prioritize this and dont feel self-indulgent.
Another Lyme patient said: Think of food as medicine. Become better-informed in this regard, and always be mindful of what you eat. Poor diet, stress and a sedentary lifestyle can wreak havoc. And being attentive to mental health is every bit as important. Be kind to yourself and try to cultivate patience. Attitude and emotions color everything.
Andrea, who has been battling Lyme for over a decade, says: Chronic illness can be highly inconsistent symptoms-wise. Symptoms also vary from patient to patient and therefore can be additionally stressful. Recognizing this will help you move through difficult episodes and forward on your path to healing. I have started writing a blog to track and share my experience. That way I can inform, comfort, and help other Lymies in the online community. I also know of many that keep a private journal, which may be therapeutic in your case. I think, above all, its important not to isolate yourself.
Originally posted 2018-05-04 13:43:34.
Recommended Reading: How Do You Know If You Have Lyme Disease
