Lyme Disease Information
DISCLAIMER: This information is general in nature and is not meant to substitute for the advice provided by your own physician or other medical professional
According to the CDC, at least 30,000 people/year are infected. Most will not receive proper diagnosis or care. Until November 2009, I was one of them. Now I am treating my Lyme, educating myself, and working to raise awareness, one blog post at a time.
Lyme Disease is primarily transmitted through the bite of infected deer ticks, and is caused by the spiral-shaped (spirochete) bacteria Borrelia burgdorferi. Lyme Disease is widespread through the United States and around the world. While it fairly easy to treat at the onset of infection, if left untreated it can infect multiple organs and systems of the body and cause a wide variety of seemingly unrelated symptoms ranging in severity. The proper treatment of chronic Lyme Disease is widely misunderstood by the medical community.
For more information:
Basic Information About Lyme Disease, by the International Lyme and Associated Diseases Society
B. burgdorferi can cause infection of a multiple organs and cause a wide variety of seemingly unrelated symptoms. It can manifest differently in each person, and can lie dormant for years, making it hard to diagnose.
Immediately following a tick bite, many people will get a bullseye rash, called erythema migrans (EM). However, fewer than 50% of Lyme patients actually recall seeing a rash. The bite may also be followed by flu like symptoms (fever, headache, body aches). The rash will usually expand and clear over the course of a few weeks, and symptoms may disappate. Just because the rash goes away and symptoms may reduce does not mean the bacteria is gone. It is possible for an infected person to have no symptoms, or display just one or two, making it difficult to diagnose.
If Lyme is not treated immediately through antiobiotics or other treatments at the onset of infection, bacteria will remain in the body and move through various organ systems. Symptoms of late stage/chronic Lyme Disease may include some or all of the following:
- Facial twitches, muscle tremors or twitches
- Joint pain and inflammation, muscle pain, with pain often migrating around the body
- Headaches and neck pain
- Digestive irregularities and discomfort
- Endocrine issues (hormone imbalances, thyroid problems)
- Menstrual irregularities
- Increased chemical, light, or sound sensitivity
- Increased seasonal and food allergies and intolerances
- Short-term memory loss, spaciness, brain fog, and cognitive difficulties
- Depression, anxiety, panic attacks, or increased mood disturbances
- Tingling, numbness, or zingy feeling in limbs, hands, and feet
- Cycling of symptoms (symptoms that come and go)
Lyme Disease is very complicated to diagnose because:
- Lyme bacteria are not always detectable in the whole blood, even in active disease. The bacteria like to hide in the tissues of the body.
- Every patient responds differently to an infection. A patient may exhibit only a few or very many symptoms.
- Antibodies may only be present for a short time, making them hard to test for.
Therefore, test results - even those run with the most sensitive methods - can often come back negative even if a person has the infection. A diagnosis of Lyme must be made through careful assessment of test results, clinical history, and symptomology. It is vital your care be managed by a Lyme-literate doctor, who has in-depth knowledge of how the disease behaves.
Testing for Lyme Disease
There are multiple ways to test for Lyme Disease, but an ELISA immunoassay and a Western Blot immunoassay are the most common. Both measure the presence of specific antigens in the bloodstream. Most doctors who are unfamiliar with Lyme will use the ELISA assay, which is generally a very inaccurate test. In fact, the accuracy rate for an ELISA immunoassay has been found to be only 45%, according to a study by the College of American Pathologists. The most accurate method of testing for Lyme Disease is a Western Blot. It allows for visualization of a patient's antibodies and is generally more sensitive and specific than the ELISA. Read a thorough explanation of the Western Blot method and result analysis here.
If your physician does not work with a lab that uses a Western Blot test, there are independent laboratories available through which you can request your own Western Blot test kit.
State of the art testing laboratory for tick-borne illnesses. Anyone is able to request test kits and shipping materials free of charge. To get the lab processed, however, you will need an authorizing physician/care provider to sign the test requisition form, have blood drawn by a lab, and send it through the mail per the kit instructions. Prepayment is required at the time the specimin is sent to IGeneX for processing. They do not accept insurance. The test results will be sent to your authorizing doctor. See the IGeneX website for full information.
Finding a Lyme-Literate Doctor
If you suspect you have Lyme Disease, it is vital to find a Lyme-literate physician (LLMD) to authorize and review diagnostic tests, assess your symptoms, and prescribe antibiotic therapy or other herbal therapies if necessary. You may also find help in a Lyme-literate Naturopathic Doctor; they will be able to prescribe herbal therapies, as well as antibiotics depending on state licensing. Most general practitioners do not know how to appropriately diagnose or treat Lyme Disease. Due to the controversial climate around Lyme Disease treatment, many Lyme-literate doctors prefer to keep a low profile. This makes finding a LLMD challenging, so it is important to use reputable sources, such as these, to find care providers.
Go to the Flash Discussion. Click on "Seeking a Doctor" under Questions and Discussions. complete site registration, and post a new topic seeking a doctor by state. A site administrator will contact you with information.
Go to Doctor Referral, and complete a free site registration. You will be allowed to search by zip code or state/city/zip, and narrow your options as desired. A list of LL doctors will be provided to you and can be emailed to your address. Allows three search queries per 30 days.
Contacting ILADS is also a method for getting a physician referral. Use their website or call them at 301-263-0776. ILADS is the "gatekeeper" for most Lyme-literate physicians in the USA, and holds trainings for physicians and other care providers on appropriate Lyme Disease treatment methods.
Additional Support & Resources
ILADS is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme and its associated diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.
Social network and online support group for Lymies by Lymies. Features forums, chat rooms, and various interest groups.
Minnesota support group, features regular meetings, information sessions, and activism.
The Lyme community is rich with bloggers! Check my Blogroll & Links page for a list of my favorite Lyme bloggers.