Q: How do you get Lyme?
A: Lyme discovered only 30 years ago, really is still in its "research" infancy and what was once believed to only be carried by the Deer Tick, is now believed by many LLMD's (Lyme Literate MD's) to be carried by all biting insects. So, not just ticks carry borrelia burgdorferi (lyme disease), this was recently confirmed, a case of Lyme was transmitted by the bite of a mosquito. Ticks, mosquitoes, biting flies and more live everywhere, even our own backyards. It is believed to be passed congenitally, if your mother was carrier you can be born with it. Sexually, possibly through all bodily fluids and even blood transfusions.
Mainstream MD's only know to look for the classic "bulls eye rash" that can follow a bite. This bulls eye rash in most cases (up to 85%) goes unnoticed or it may never develop or it may develop in area not easily seen.
Ticks can be as small as the period a the end of this sentence. They cannot jump or fly but are inclined to climbing and will climb your body unnoticed and burrow into areas such as your hairline, armpit, scalp or other inconspicuous areas. How would you ever notice a tick this size (.) ?
Q: How serious is Lyme Disease?
A: It is imperative to understand that tick borne illness is very real and can be disabling and can even kill in rare cases. If not treated promptly, appropriately & aggressively it can become chronic and harder to treat . Because the immune system in patients with Lyme is usually impaired, untreated Lyme disease can eventually lead to other health issues.
Ticks carry more than just borrelia burgdorfi (Lyme) bacteria called co-infections, Babesiosis, Ehrlichiosis Bartonella and Mycoplasma. Each of these bacteria's have their own set of symptoms. They can be dangerous as well and each must be treated along with Lyme treatment. If left untreated you may never get well. Mainstream MD's never test for the co-infections, most not knowing they even exist.
Lyme is a "smart" bacteria. Shortly after entering the blood stream it quickly enters the CNS (Central Nervous System). Because of its corkscrew shape, it prefers and travels better in tissue. It can "camouflage" itself by entering healthy cells, going unnoticed by the immune system, therefore it is not attacked. It can sense a hostile environment (antibiotics) it can change shape and form "cysts", where it can be "safe" from most antibiotics.
Q: How do I know if I have Lyme Disease?
A: It is not uncommon for a person with Lyme Disease to go misdiagnosed or undiagnosed for very long periods of time. Many stories of lyme patient's will tell you they saw many, many MD's and specialists and none could diagnose them. In many cases, patients report seeing at least 10 doctors and have suffered for months or years. This is precious time and money that mainstream MD's waste because they have no understanding of this disease. Some MD's may tell you Lyme does not exist in your area, when the truth is, it has been found in all 50 states.
Even though there are as many as 75 symptoms of Lyme, pain seems to be the common denominator with most Lyme patients. Do you have multiple symptoms? Do you have symptoms that are hard to describe? Lyme Disease should be considered with any illness having pain with multiple symtpoms. Lyme is misdiagnosed everyday from everything from Fibromyalgia, anxiety, depression, ALS to MS.
Q: Is there a reliable test for Lyme Disease?
A: Mainstream MD's rely fully on a blood test that is NOT diagnostic and is very unreliable. (Please see Resources for links with indepth explanations). The blood test given at commercial labs was devised by the CDC. The Centers for Disease Control and Prevention (CDC) surveillance criteria for Lyme disease were devised to track a narrow band of cases for epidemiologic purposes. As stated on the CDC website, the surveillance criteria were never intended to be used as diagnostic criteria and was never meant to define the entire scope of Lyme disease. This 2 step test is estimated to be approximately 30% accurate, meaning it is 70% unreliable! 7 out 10 cases of Lyme are overlooked or misdiagnosed due to this test.
There are private labs (such as Igenex) that specialize in tick borne illness and their testing can help to confirm a diagnosis. Labs such as Igenex, also are able to test for the co-infections, this is imperative for a complete and accurate diagnosis. Tick borne specialty labs have a reliability rate of approximately 70%. But the bottom line is that Lyme should never be based on any blood test and has always meant to be a clinical diagnosis based on symptoms. The problem with diagnosing Lyme based on symptoms, is that there are rarely two Lyme pateints with the same exact symptoms. There are such a wide array of symptoms, MD's most of the time cannot figure out what is going on. If you have seen many doctors and had many tests and all have come back normal, Lyme Disease must be seriously considered.
Q: What are the symptoms of Lyme Disease?
A: There are unlimited combinations of symtpoms and rarely can you find 2 people who have lyme with the same exact symptoms. Lyme can come on slowly over months or years or with a bang. Often patients report a "trigger" and suddenly or over time becoming sick. Triggers can vary from anything as simple as breathing paint or other everyday household chemicals to getting a vaccination or the most commmon, a cortisone injection.
Lyme can lay dormant in your body for years going unnoticed. People are often misdiagnosed with Fibromyalgia, CFS, MS and many other illnesses, before finding out they really have Lyme disease. Lyme can cause mild symptoms, fatigue, headache, muscle aches all which may come and go and many countless other symptoms. Or lyme disease can cause more severe symptoms, severe and painful neuropathy (nerve pain) stabbing, burning, shooting pains, to mental illness. The bacteria can effect every bodily system from the brain to your feet.
Please refer to our Resources link for links to Lyme Symptoms.
Q: How is Lyme treated?
A: Mainstream doctor's believe Lyme Disesae is easily cured with a week or two of antibiotics and if you have any remaining symptoms they will call it "Post Lyme Syndrome". But many believe there is no such thing as "Post Lyme Syndrome". Instead, it is believed that Lyme can become chronic. If you have symptoms of Lyme, a week or two of antibiotics will not "cure" you, in fact there is no "cure" and as long as you have symptoms, LLMD's will insist you must be on high dose long term antibiotics.
Q: If there is no cure what is the prognosis?
A: There are many factors to answering this question. It depends on how long you have had LD, if co-infections are involved, viral co-infections and a host of other factors. Some LD patients compare it to cancer and there are similarities. LD and the co-infections can possibly kill (if left untreated for years) the treatments can be prolonged and excruciating. You hope for an eventual state of remission. . There is no test available to show that once treatment is over that you are "Lyme free". If you have an educated Lyme Literate MD, most LD patient will remain on antibiotics until they are symptom free + 2 additional months beyond that.
It can take time, time and more time to get well, especially if you have been infected for a long time and have other complicating factors mentioned above. An LLMD once said, "LD treatment is not a race, but a marathon". Sometimes, when taken off antibiotics LD patients can relapse and symptoms can return quickly or years later and maintenance antibiotics in some cases are necessary.
Q: Is there help available? Where can I find it?
A: The good news is that there is help available. But you must see a Lyme literate MD. These MD's are virtually unknown to mainstream MD's. Please visit our Resources page for ways to get LLMD referrals in your area. There is a specific link to the Lyme Disease Association that has a doctor referral link. But one of the best ways to find a reputable LLMD is from Lyme patients themselves. Visiting our online support forum can give you a world of information.
Q. What can I expect during treatment?
When you are properly diagnosed and treatment begins with antibiotics, in most cases you will have a symptoms increase called the jarisch herxheimer reaction. When the bacteria of tick borne illness "dies-off" it creates toxins in the body. Herxing (as it is commonly called) is considered a good sign the antibiotics are working and it can be different for everyone. Herxing can last hours, days, weeks, months and some have reported, sporadically for years. The mass majority of Lyme patients will tell you, that you must get worse before you will ever get better. (Please see our Resources link for information on herxing).
Q. How dangerous is it to be on antibiotics a long time?
A. This is something you can discuss with your LLMD, but most will tell you the risk of LD far outweighs the risk of long term antibiotics.
Q. Why don't mainstream MD's understand this disease?
A. There are many theories about this. First would be the test MD's use is unreliable, they have no knowledge or training at all about LD, they aren't aware that LD is nationwide, ticks know no boundaries and not to mention all the other possible ways of contacting LD. There are even "conspiracy theories" i.e., if you aren't diagnosed your insurance won't have to put out thousands of dollars to treat you. Other theories include that the CDC has an unreliable test on purpose so that people will not be put on long term antibiotics, therefore lessening the chance of building antibiotic resistant bacteria called "super bugs". The CDC has campaigned against antibiotic use for years. Whatever the reason, it is a simple truth that in 99% of cases you will not be diagnosed with LD through a mainstream MD and even if you are, you may not receive proper updated treatment protocols.
Q. I have been diagnosed with Fibromyalgia or CFS, could it be LD?
A. Fibromyalgia and CFS might be the 2 most misdiagnosed conditions, next to MS, by your MD. THe possibilities are high that you have LD, if you have been diagnosed with any of these. Although symptoms of these conditions exist and are real, there is a reason. You don't have pain or fatigue without a cause, it is imperative you understand this. Since Fibro and CFS were first diagnosed, bacterial infections have long been thought by the medical community to be a possible factor in their cause. If you need further proof, compare the LD symptoms list to the ever growing Fibro and CFS symptoms list, they are nearly identical. The only problem, MD's treat your symptoms and never tell you the "root" cause. There is always a cause. Please know Fibro, Anxiety, CFS and more are "symptoms" not diagnoses.