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May is Lyme Disease Awareness Month
It is also Fibromyalgia, Ehlers-Danlos Syndrome, Multiple Chemical Sensitivity Month and many more health challenges that I have or can relate to.
So I thought I'd compile a bunch of what I hope is helpful information to you.
Do you know how to properly remove a tick?
Here are the do's and the don'ts.
1. DO: Grab the tick as close to your skin as possible with tweezers or a tick remover kit. https://amzn.to/4jEUBv2
2. DO: Pull firmly upward. If any part of the tick's mouth barbs or head is left there, pull them out with tweezers.
DON"T: Squeeze the tick, put chemicals such as nail polish remover or Vaseline on it or burn it with a match. The Borrelia lives in the tick's saliva and guts and these things make the tick regurgitate it's contents into you increasing chance of infection. https://www.aafp.org/pubs/afp/issues/2002/0815/p643.html
3. Wash area with soap and water and if you have peroxide or alcohol pour over area.
4. You can send the tick in for testing at different labs. Ticks carry many diseases, not just Lyme and you can pick what you want it to be tested for. Here are instructions on how to send in the tick.
5. Keep an eye out for symptoms. Less then 50% of people who get infected with Lyme disease will get a "bull's eye rash", so you can still have Lyme if you don't have the rash. You might also develop flu like symptoms, a fever, body aches, neuro symptoms like brain fog or confusion.
Acute Symptoms and Rash pictures
Children's Symptoms
Dog's Symptoms
6. Learn about what co-infections might be reported in your area. Many doctors will dismiss Lyme if they see it was a dog tick, or any kind of tick that is not a deer tick, but many different ticks pass many different kinds of co-infections. You can get infected with multiple infections all at once with ticks.
Read more about co-infections here.
7. A Bull's Eye Rash, should you get one is 100% diagnostic of Lyme disease. If your doctor won't treat it, go to a different doctor. Also if you have symptoms you will need to be treated. Lyme tests are very inaccurate, especially in the beginning of an infection because your body has not made the antibodies to fight the infection yet, and that is what Lyme tests test for, the antibodies, not the infection itself. There are labs such as Igenex that specialist in tick borne infections. https://igenex.com/
Learn more about testing here https://www.lymedisease.org/lyme-disease-test/
Have fun this summer and be safe!
Here are some maps... but remember cases are underreported and there are cases of Lyme in every single state and every single country other than Antarctica. IF you have some good maps for your country please share them and I'll get them added to this list. I try to use dog maps because they are more accurate then the CDC maps because they don't have an agenda. But if you would rather see the CDC info just google the infection and CDC to see their maps.
Canine Lyme Cases across the US
Map showing Bartonella cases across the US https://www.researchgate.net/.../A-Map-showing-the-total...
Ehrlichiosis Maps
Babesia
A Global Lyme and Invisible Illness Website/Non Profit led by Karen Smith and myself
European Centre for Disease Prevention and Control tick maps
Did you know that Lyme disease tests are very inaccurate?
Well, they are.
The problem with this method of testing is that these tests measure a patient's antibody response, they don't directly test for the Lyme bacteria. In the first four-to-six weeks of Lyme infection, most people have not yet developed the antibody response that the test measures so are likely to test negative even though they have a Lyme infection.
And it gets more complicated than that. Read more about the Western Blot testing here. https://www.lymedisease.org/lyme-disease-test/
There are labs out there that specialize in Lyme testing such as Igenex but your insurance is not likely to cover it. https://igenex.com/
Don't take my word for this, here are some articles and research papers on the subject of Lyme testing inaccuracies and which tests are better.
LYME SCI: Analysis shows standard Lyme testing is highly inaccurate
Is Lyme Disease Testing Really That Bad?
Lyme Disease Test Effectiveness
From AI
These antibody tests have poor sensitivity in early Lyme disease (35-50%) and inadequate sensitivity in some of the later stages of Lyme disease (e.g, 75-89% in neurologic Lyme disease).
Lyme disease tests, particularly the standard two-tier serologic tests, can be inaccurate due to several factors:
1. Timing of Testing and Antibody Development:
Early Infection: Serologic tests, like the ELISA and Western blot, rely on detecting antibodies produced by the body in response to the Lyme bacteria. These antibodies may not be present or detectable in the early weeks of infection (window period), leading to false negatives.
Antibody Response Variability: The immune response to Borrelia burgdorferi (Lyme bacteria) can vary between individuals and even within different stages of the disease, impacting the test's ability to detect the infection reliably.
2. Test Sensitivity and Specificity:
Sensitivity Limitations: Tests may fail to detect Lyme disease in some infected individuals, especially during early infection or with certain clinical manifestations.
Specificity Issues: Cross-reactivity can occur, meaning antibodies formed against other microbes or conditions (e.g., syphilis, other tick-borne diseases) might mistakenly react with Lyme antigens, resulting in false positives.
3. Test Variability and Standardization:
Interpretation Challenges: Western blot test interpretation can be subjective, and different laboratories may use varying criteria, leading to inconsistent results.
Use of Unvalidated Tests: Some laboratories offer unvalidated tests or employ non-standard interpretation criteria, which can produce inaccurate results and should be avoided.
4. Presence of Co-infections:
Tick-borne co-infections (e.g., anaplasmosis, babesiosis) can complicate diagnosis and treatment, and Lyme tests might not detect these other infections.
5. Limited Scope of Current Tests:
Current tests primarily focus on detecting antibodies to Borrelia burgdorferi, the most common cause of Lyme disease in the United States, but may not detect other Lyme-causing Borrelia species prevalent in other regions.
Direct detection tests, like PCR, which look for the bacteria's DNA, have low sensitivity, particularly in blood samples, because spirochetes might not be present in high enough concentrations.
In Summary:
Lyme disease testing can be inaccurate due to limitations in sensitivity and specificity, challenges with antibody detection in early infection, variability in testing protocols, and the presence of other tick-borne infections.
