Top Lyme Questions for Deanna

Deanna suffers from severe Chronic Lyme Disease. Like other patients in her condition, she is home-bound and not capable of working while the disease and its co-infections wreak havoc on her body. There are many ways you can help. Please go to the dedicated How You Can Help page for more information.

The short answer is that health insurance companies are not obligated to cover medical expenses beyond the first few weeks of diagnosis because current IDSA (Infectious Disease Society of America) and CDC (Center for Disease Control) guidelines imply that Chronic Lyme Disease is not a legitimate long-term illness. It’s a tragedy for all Chronic Lyme Disease victims… one that causes financial hardship if not ruin, prolonged physical and emotional suffering, and even death from complications amongst those who cannot afford the necessary long-term treatments. For further reading, please refer to this excellent Insurance Denial Article.

Related Links:
Dr. Burrascano’s Senate Hearing Testimonial
The Great Lyme Debate
The Dirty Truth About Lyme

Even if one were able to qualify, the monetary compensation would be but a fraction of the medical expenses for the treatment of Chronic Lyme Disease and its co-infections.

“Lyme Disease” is a general term used to describe all aspects and stages of the bacterial infection (Borrelia burgdorferi). Some people even use the words loosely to imply its co-infections, though it is not technically correct. The term “Chronic Lyme Disease” is used by Lyme-literate doctors and experts in the field to describe the long-term (i.e. persistent) stage of the disease if it was not caught and treated during the first year of infection. It is a progressively worsening condition, if misdiagnosed and left untreated, which leads to serious life long consequences… physically, emotionally and financially. The chronic stage of this disease is something that has not gained sufficient media and public attention to date and, as a result, causes unnecessary long-term suffering (and even death) for many new victims each year due to lack of knowledge or denial.

Related Links:
Dr. Burrascano’s Senate Hearing Testimonial
Under Our Skin (Highly-Rated Documentary)

Much of the media information focuses on tick bites. However, transmission may also occur via spiders, fleas, mosquitoes and potentially other insect bites. Like other blood-transmitted diseases, Lyme can be passed on from mother to child, as well as through blood transfusions and infected organ donation. It spreads via blood to tissue, organ, joint, bone marrow and the brain. Other bacteria often accompany the Lyme bacteria (known as “co-infections”) and these can be just as debilitating, and sometimes even deadly. Do not donate blood or organs if you have ever had Lyme disease.

The first, early symptoms will usually manifest as atypical weakness, fatigue, and lack of energy, flu-like symptoms, tremors, nausea, sometimes joint and muscle pains, headaches, numbness in arms or legs along with hundreds of other symptoms. Note that skin rashes do not appear on everyone after a bite (less than 40% get a rash!) Many people never even recall having been bitten. Prolonged exposure to Lyme can be misdiagnosed as a number of common autoimmune diseases such as multiple sclerosis (MS), lupus, chronic fatigue syndrome, fibromyalgia, Parkinson’s and others.

Related Links:
What To Consider If Bitten?
List of Possible Symptoms
Lyme Disease Checklist

Only if caught early on. The longer one waits for treatment, the less likely they can be cured. Early detection is key! Until a cure for Chronic Lyme Disease is found, the best hope is to get into remission. Chronic Lyme Disease is also called Persistent Lyme Disease or Long-term Lyme Disease. It is important to become familiar with the symptoms of this fast spreading disease and insist on the right kind of testing through a Lyme-literate doctor (LLMD) as soon as there are any signs or symptoms of having it, or if you have been misdiagnosed with an auto-immune disease.

If you have any suspicion of having even a few symptoms of the disease, it is important to insist on the right kind of testing. Beware that the standard lab test hospitals and most doctors will order for Lyme do not come back positive even though you may have Lyme! Insist on getting tested through IGeneX or Advanced Laboratory Services. If symptoms have been present for a while, order an additional Lab Corp CD-57. Note that there have been over 300 types of Lyme disease found thus far by researchers and numerous different species of co-infections. There is no such thing as just having Lyme disease unfortunately, and co-infections, parasites and viruses come with Lyme disease. About 50% of Lyme patients have Babesia, 70% have mycoplasma, and 90% have Bartonella. Some of these co-infections take six or more lab tests to come back positive. For Bartonella testing, Galaxy Diagnostics is highly-recommended.

Related Links:
Testing Overview by IGeneX
Reasons Why Standard Testing Can Miss Lyme Detection
See Items 6 & 10 on in this Page for CD57 & LTT Tests

Although most people associate tick bites with just Lyme disease (i.e. Borrelia bacteria), the reality is that several other diseases are commonly transmitted along with Lyme. In North America, the most common of these co-infections are:

• Babesia

• Bartonella

• Ehrlichia

• Coxiella

• Mycoplasma

• Viruses (HHV-6,CMV,EBV, Borna, XMRV)

Treatment time and complexity increase as more of these intruders are present simultaneously.

Related Links:
ILADS Treatment Guidelines
Dr. Burrascano’s Highly-Respected Guidelines

If you review the answer to the question concerning what symptoms to look out for, you’ll see that Lyme can trigger characteristics of many different illnesses. Therein lies the risk of not detecting it early on and therefore the danger of letting it mature into its long-term, presently incurable chronic form.

As mentioned in the How You Can Help page, the treatment costs for Chronic Lyme Disease are staggering and they are not covered by insurance. Unfortunately victims with little or no financial resources are often left to face their own demise. Today’s modern society does not provide a safety net for patients with Chronic Lyme Disease.

Of course, the obvious answer is to take precautions not to get bit or infected by other means in the first place. Thereafter, it is imperative to catch and treat the Lyme infection as early as possible(!) before it progresses into its persistent chronic stage that is not curable with today’s medical knowledge (though remission is possible). That is why it is important to become familiar with the different early symptoms (for Adults; for Children) and be ready to suspect the possibility of infection if they manifest unexpectedly. Remember that standard tests that typical primary or infectious disease doctors and hospitals order today are inadequate! Seek a Lyme-literate doctor (LLMD) and review the recommended tests listed earlier on this page (IGeneX or Advanced Labs), especially if the symptoms persist. Also remember that Lyme infections happen in conjunction with co-infections which need to be identified as well since they may require different medical treatment protocols than those used for Lyme (Borrelia).

Further Prevention Information:
Top Ten Tips To Prevent Chronic Lyme Disease
Things We Wish We Had Known About Lyme Disease

A great starting point is the Lyme Education page in this site which provides relevant links to carefully researched information. The Blog Posts under the Lyme Education category provide valuable additional insights.