Lyme Disease: The Great Imitator Lyme disease is often referred to as the great imitator because it involves multiple systems and manifests differently from patient to patient. Misdiagnosis as another autoimmune or auto suppression disease is common. Some unfortunate patients visit dozens of specialists over years or decades before being correctly diagnosed and treat- ed for Lyme disease. Only then do many of them finally get appropriate treatment and begin to feel significantly better.
The Importance of Finding Experienced Practitioners Under-treating or misdiagnosing Lyme disease is all too common in our nation’s healthcare facilities because the majority of doctors lack adequate updated educa- tion in tick-borne illnesses. Because of this, doctors often resort to using a flawed lab test for Lyme disease as their primary means for diagnosis. Available testing is unreliable and results far too often show false negatives. Many doctors still follow outdated diagnosis and treatment guide- lines inspired by the outdated IDSA Lyme guidelines which have now been delisted by the National Guidelines Clearinghouse (NGC). Everyone should know that there is more than one set of guidelines to choose from and it is their right to have a say in how their treatment is developed. Finding a doctor experienced in Lyme disease is an important part of getting an appropriate di- agnosis and treatment plan in place before further damage sets in.
The International Lyme and Associated Diseases Society (ILADS) has the most up to date resources to educate the best Lyme- dedicated doctors. Their website at www.
ilads.org offers considerable information on tick-borne illnesses. Their doctor refer- ral service has helped many patients find a knowledgeable doctor in their region.
Two other great online sources for useful information can be found at
www.lymedis-
ease.org and
www.mainelymedisease.org for starters.
Incomplete treatment with antibiot- ics or antimicrobials may only partially knock down the pathogen load which can then disseminate throughout the body after short-term treatment ends. When the Borrelia spirochetes become entrenched throughout the body into non-vascularized tissue, it is more difficult for your body’s own immune defenses or introduced antibiotics to access the persistent invad- ers. The ability of the bacteria to morph into various forms makes treatment more challenging. Multiple antibiotics and antimalarials are needed to target the dif- ferent forms of the spirochetes and other coinfection bacteria. Untreated or persis- tent tick-borne pathogens can emerge and multiply weeks, months or years later from a state of dormancy and cause more and more symptoms with greater severity. At that point, Lyme disease is frequently not suspected because the tick bite occurred so long ago and is often forgotten. Now it may be impossible to eradicate.
What makes continual misdiagnosis
even more tragic is that the odds of curing Lyme disease improve with early diagno- sis and treatment with antibiotics. I even encourage people to request a course of antibiotics whenever they find a tick has attached. You must be vigilant to stop the progression (or start) of the disease before it takes root.
Remission! Then Reemergence Four and a half years of travel to
distant Lyme doctors, who prescribed very complex treatment protocols, rewarded me with total remission. Slowly but surely, after countless ups and downs, I was whole again with no lingering symptoms ex- cept for the physical de-conditioning that resulted from years of “rest.” I was given a second chance at life!
However, after more than a year, my remission ended thirteen months ago with the reemergence of some all too familiar symptoms. I’ve been in progressively more robust treatment to put the evil genie back in the bottle. I’ve learned that, for many disseminated chronic Lyme patients, relaps- es are common and a cure is unlikely until
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