Frequently ask Questions about Lyme and Tick-Related Illnesses
What is Lyme disease?
Lyme disease (LD) is a multi-system bacterial infection caused by the spirochete Borrelia burgdoferi (Bb) and transmitted by ticks. The pathogen was named in honor of the discoverer and a founding board member of the Lyme Disease Foundation, Willy Burgdorfer, PhD, and MD. Research has proven that the bacterium that causes Lyme disease has been in the U.S. for over 100 years. These spirochetes are maintained in nature in the bodies of wild animals and are transmitted from one animal to another through the bite of an infective tick. Humans and pets are incidental hosts to ticks. The body does not maintain a natural immunity to the disease. Thus, a person can be re-infected with the disease on subsequent tick bites.
What are Lyme related illnesses and co-infections found in the South?
STARI (Southern Tick Related Rash illness)
This illness is common in the South and may represent many of the cases or possible diagnosis similar to Lyme disease because of the rash and symptoms it causes its victims. STARI is transmitted by the Lone Star tick, which is very aggressive and readily attacks humans.
Rocky Mountain spotted fever
Also known as tick typhus, Rocky Mountain spotted fever is caused by a bacteria-like microorganism, Rickettsia rickettsii. Rocky Mountain spotted fever rickettsiae are acquired by an American dog tick when it takes a blood meal from an infected animal. These bacteria are not harmful to most wild and domestic animals, but they are extremely pathogenic to humans and dogs. Rocky Mountain spotted fever is normally a disease of wild animals, but people can be infected while camping or hiking in tick-infested areas if they are bitten by an infected tick. In addition, pets may carry an infected tick into the family living area. The disease organisms can also be passed through the egg of an infected tick and from stage to stage in the life cycle. Fortunately, only a small percentage of American dog ticks found in nature are infected. Symptoms of Rocky Mountain spotted fever include headache, fever, chills, aches, pains, and sometimes nausea. These symptoms are usually accompanied by a rash that starts on the wrists and ankles. Because Rocky Mountain spotted fever is cured with antibiotics, a person exhibiting any of these symptoms 2 to 14 days after a tick bite should consult a physician at once. If left untreated, Rocky Mountain spotted fever can cause death.
Ehrlichiosis is caused by several bacterial species in the genus Ehrlichia (pronounced err-lick-ee-uh) which have been recognized since 1935. Human ehrlichiosis due to Ehrlichia chaffeensis was first described in 1987. The disease occurs primarily in the southeastern and south central regions of the country and is primarily transmitted by the lone star tick, Amblyomma americanum. Human granulocytic ehrlichiosis (HGE) represents the second recognized ehrlichial infection of humans in the United States, and was first described in 1994. The name for the species that causes HGE has not been formally proposed, but this species is closely related or identical to the veterinary pathogens Ehrlichia equi and Ehrlichia phagocytophila. HGE is transmitted by the blacklegged tick (Ixodes scapularis) and the western blacklegged tick (Ixodes pacificus) in the United States.
Bartonella (or Cat Scratch disease)
Cat scratch disease (CSD) is a bacterial disease caused by Bartonella henselae. Most people with CSD have been bitten by a tick or scratched by a cat and developed a mild infection at the point of injury. Lymph nodes, especially those around the head, neck, and upper limbs, become swollen. Additionally, a person with CSD may experience fever, headache, fatigue, and a poor appetite. Rare complications of B. henselae infection are bacillary angiomatosis and Parinaud's oculolandular syndrome. Sometimes cats can spread B. henselae to people. Most people get CSD from cat bites and scratches. Kittens are more likely to be infected and to pass the bacterium to people. About 40% of cats carry B. henselae at some time in their lives. Cats that carry B. henselae do not show any signs of illness; therefore, you cannot tell which cats can spread the disease to you. People with immune compromised conditions, such as those undergoing immunosuppressive treatments for cancer, organ transplant patients, and people with HIV/AIDS, are more likely than others to have complications of CSD. Although B. henselae has been found in fleas, so far there is no evidence that a bite from an infected flea can give you CSD.
Babesiosis (say: "bab-e-see-oh-sis") is a rare infection of the blood caused by a parasite that lives in some ticks. Deer ticks typically carry the parasite that causes the illness. Babesiosis Infections are more common in animals than in humans, but cases have been reported in parts of the United States. The areas in which Babesiosis has been reported most often are on the coast of Connecticut and New Jersey and on the islands off of Massachusetts and New York. Symptoms include fever (as high as 104°F), chills, sweating, weakness, tiredness, joint and muscle aches, poor appetite and headache. Some people who have Babesiosis may not have any symptoms. However, sometimes the illness can quickly become serious, and can even cause death, especially in people who have had their spleen removed or have weak immune systems. Babesiosis can affect people of all ages, but most people who get it are in their 40s or 50s.
Tick paralysis is a tick-borne disease affecting both humans and other animals, and is characterized by the sudden onset of progressive, ascending paralysis, starting in the lower body and moving up. Unlike other tick-borne diseases, such as RockyMountain spotted fever, tick paralysis is not caused by an infectious agent (pathogen) but rather, is induced by a chemical imbalance that attacks the nervous system (neurotoxin). This neurotoxin is secreted by the salivary glands of certain tick species as they feed. Tick paralysis is relatively rare, but it can be fatal if the attached tick is not found and removed. The majority of cases occur in children.
Tularemia is the most wide-spread tick-borne illness. It has been reported in all U.S. states, except Hawaii. It is also known as "rabbit fever" because it is usually carried by rodents, rabbits and hares. About 200 cases of tularemia are reported in humans each year in the U.S., almost all of which occur in rural areas of the country. While tularemia is generally transferred through insects such as ticks, it can also spread through inhalation of the bacteria. This does not occur from person to person, but more often through handling infected animals or inhaling airborne bacteria in a laboratory setting. Symptoms of infection may be skin ulcers, swollen lymph glands, sore throat, mouth sores, diarrhea and/or pneumonia. Tularemia can be fatal, and must be treated with antibiotics.
What is STARI?
South Tick Associated Rash Illness or STARI was first discovered in NC in 1996 and can produce the same EM like rash and appear similar to Lyme disease. Named after the doctor who first isolated the bacteria, Dr. Ed Masters, the disease is sometimes called Master's disease. The disease is passed from the Lone Star tick which is very common in both North and South Carolina and can be aggressive in attacking humans. This tick is very hard to see in the nymph stage and is easily recognized by a white or yellow spot on the back of adult female ticks. The male has no distinguishing mark. It is very likely that many reported cases of Lyme disease may actually be STARI. Current tests are unable to detect this bacteria and the rash can be very similar in size and characteristic of the classic Lyme rash. While STARI is not "true" Lyme disease it's still a Lyme-like illness treated with the same antibiotics as Lyme, and deserves the same addition. Symptoms for STARI are similar to Lyme disease but usually less severe. However evidence in recent years indicates symptoms of STARI can be just as severe as Lyme if not properly treated. Few studies are published on this illness and thus the reason little is known about the severity and all of the symptoms. The treatment for STARI is the same as Lyme disease with at least 21 days, and up to 30 days, of antibiotics administered if a rash develops following the bite from a Lone Star tick. Inability to identify the tick shouldn't prevent you from asking your doctor for the maximum length of treatment. If possible, provide the report from Dr. Masters found in the publication section and ask for 30 days of treatment to be safe.
What are the symptoms of Lyme disease?
Head, Face, Neck
5.Unexplained hair loss
6.Headache, mild or severe, Seizures
7.Pressure in Head, White Matter Lesions in Head (MRI)
8.Twitching of facial or other muscles
9.Facial paralysis (Bell's Palsy)
10.Tingling of nose, (tip of) tongue, cheek or facial flushing
11.Stiff or painful neck
12.Jaw pain or stiffness
13.Dental problems (unexplained)
14.Sore throat, clearing throat a lot, phlegm (flem), hoarseness, runny nose
15.Double or blurry vision
16.Increased floating spots
17.Pain in eyes, or swelling around eyes
18.Oversensitivity to light
19.Flashing lights/Peripheral waves/phantom images in corner of eyes
20.Decreased hearing in one or both ears, plugged ears
21.Buzzing in ears
22.Pain in ears, oversensitivity to sounds
23.Ringing in one or both ears
Digestive and Excretory Systems
26.Irritable bladder (trouble starting, stopping) or Interstitial cystitis
27.Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
28.Bone pain, joint pain or swelling, carpal tunnel syndrome
29.Stiffness of joints, back, neck, tennis elbow
30.Muscle pain or cramps, (Fibromyalgia)
Respiratory and Circulatory Systems
31.Shortness of breath, can't get full/satisfying breath, cough
32.Chest pain or rib soreness
33.Night sweats or unexplained chills
34.Heart palpitations or extra beats
35.Endocarditis, Heart blockage
36.Tremors or unexplained shaking
37.Burning or stabbing sensations in the body
38.Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
39.Pressure in the head
40.Numbness in body, tingling, pinpricks
41.Poor balance, dizziness, difficulty walking
42.Increased motion sickness
44.Mood swings, irritability, bi-polar disorder
46.Disorientation (getting or feeling lost)
47.Feeling as if you are losing your mind
48.Over-emotional reactions, crying easily
49.Too much sleep, or insomnia
50.Difficulty falling or staying asleep
51.Narcolepsy, sleep apnea
52.Panic attacks, anxiety
53.Memory loss (short or long term)
54.Confusion, difficulty in thinking
55.Difficulty with concentration or reading
56.Going to the wrong place
57.Speech difficulty (slurred or slow)
59.Forgetting how to perform simple tasks
Reproduction and Sexuality
60.Loss of sex drive
62.Unexplained menstrual pain, irregularity
63.Unexplained breast pain, discharge
64.Testicular or pelvic pain
65.Unexplained weight gain, loss
67.Swollen glands/lymph nodes
68.Unexplained fevers (high or low grade)
69.Continual infections (sinus, kidney, eye, etc.)
70.Symptoms seem to change, come and go
71.Pain migrates (moves) to different body parts
72.Early on, experienced a "flu-like" illness, after which you have not since felt well.
73.Low body temperature
75.Increased effect from alcohol and possible worse hangover
The above list does not cover every possible symptom and if the person is also infected with co-infections or other tick related diseases, some of these symptoms may be altered or modified to the point that they are non descriptive and difficult to classify. Remember that few patients display classic symptoms and the "total" picture should be taken into account when determining if a tick related illness is the root cause. A great example would be the fact that many long term suffers of chronic Lyme can have high levels of metal toxicity. A doctor may notice this and declare that the patient has heavy metal toxicity not Lyme. However, it has been shown that high levels of heavy metals can occur in patients who have had Lyme disease for long periods as their kidneys cannot properly remove the metals from the body. So the question is- do you treat for Lyme or heavy metal? Experienced doctors are aware of this and must address both issues to allow the patient full recovery. Since Lyme can affect almost any organ in the body, some symptoms may not be directly related to Lyme but related to that particular organ being affected by the Lyme bacteria. Lyme disease was the root cause in producing the abnormal readings. One Lyme patient presented high cholesterol, high heavy metal toxicity, abnormal high blood pressure, low testosterone, abnormal triglycerides levels, abnormal liver enzymes, rapid heart rates, and abnormal visual evokes eye tests. Which of these do you treat first? In this case, IV treatments of antibiotics resolved all of these issues (except heavy metal toxicity which was treated separately). Uneducated doctors address individual symptoms versus treating the Lyme bacteria causing these symptoms. This mindset leads to thousands of dollars in unnecessary medical expenses and years of frustration while seeking proper care as health issues escalate. Educate yourself and be diligent in seeking knowledgeable doctors when it comes to your health. The least expensive route is not always the best way to go when your health and welfare is on the line.
Is Lyme disease in the Carolinas?
Yes, but you will get different responses concerning frequency and number of cases in the South. Take a look at this map depicting the number of reported cases of Lyme disease to the CDC. Despite your state's Health Department denial that "true" Lyme disease exists and their use of words like rare or uncommon, many hundreds of patients are being diagnosed and treated in the South. There have been numerous studies performed in both South and North Carolina identifying the bacteria (Borrelia burgdorferi) or Bb from ticks found in both states. The average number of reported cases of LD for North Carolina for the past 10 years is 84 cases. For South Carolina it is much less but residents are still being infected and treated by doctors. Each state reports Lyme disease cases which meet CDC case reporting criteria, but at lower levels than the numbers of patients actually treated for Lyme by doctors (a factor of 10+ is commonly used and recognized by the CDC in terms of underreporting). North Carolina also denies the severity of the disease citing "It's not true Lyme disease" or other statements to this effect. Some doctors refuse to believe there is LD in the Carolinas because of conflicting beliefs associated with the disease, and therefore either will not see a potential Lyme patient or treat someone for Lyme disease if that person suspects they may have the disease. The following is a statement from Dr. Engel, the state of North Carolina Chief Epidemiologist in a letter to a resident "thus I support the vast majority of NC physicians, who, like me, base their practice on scientific evidence. Until we have such evidence, physicians are correct to be skeptical of Lyme disease acquired in NC."
Why may I have to seek treatment in another state?
Most cases of tick-related disease are treated by your local health care professionals. However, treatment of Late-Stage or Chronic Lyme may require months of IV antibiotics and/or years of oral antibiotic treatment. Many patients find themselves having to seek long term treatment from other states which are not as restrictive as North Carolina. Because NC denies the existence of Lyme disease in our state, residents automatically face this obstacle in being properly diagnosed here. The accepted length of treatment in North Carolina is usually 30 days and many doctors will not treat longer. The North Carolina Medical Board brought charges against an Infectious Disease Doctor in 2006. This action caused many doctors in NC to be concerned that the Medical Board may be on a "witch hunt." Doctors do not want to risk their license so some may not treat patients with possible Lyme disease (or in some cases, even see them at all). Patients with Late-Stage or Chronic Lyme may require many months of treatment, normally unavailable in our state. Thus, the resident is forced to make out-of-state doctor visits and incur the additional costs associated with out-of-network doctors and associated travel expenses. Despite the "world class" academic and health care systems within NC, the knowledge base and experience levels of physicians familiar with tick-related diseases is higher in other states which are more familiar and readily acknowledge Lyme is in their state.
How do humans get Lyme and related illnesses from tick bites?
First you must be bit by a tick carrying one of the many illnesses they can carry and the tick must remain attached for a period of time long enough to transfer the infection into the blood stream of the victim. Some studies say 48-36 hours of attachment is required to transmit Lyme disease but less than 24 hours have been cited in a few, less published studies. When the tick feeds on the blood of humans the bacteria within the tick is passed back into the blood of the host and the disease cycle begins. Time is not really of importance since most of us cannot tell the exact time of attachment. If the tick is engorged (full of blood) then it has been attached long enough to transmit a disease. Additionally, if the tick is not fully engorged, it may still pass some bacteria to the victim.
Can I get a tick related infection from receiving a blood transfusion?
"Lyme disease - If this is a chronic condition you cannot donate. If you were treated with antibiotics and completely recovered, you can donate 12 months after the last dose of antibiotics was taken." "Those who have had infections with Chagas Disease, babesiosis or leishmaniasis are not eligible to donate blood."
While not common, it has been shown that Bb, Babesiosis, RMSF and other tick associated co-infections can be transmitted through blood transfusions. To give blood, the Red Cross states that you not give blood if you have a current infection or where diagnosed with Chronic Lyme. The problem is you may be unaware you're infected. Currently, the Red Cross does not test for Bb or some of the infections the blood could contain. Make your own decision on your status and decision to give blood. If you are infected do not donate. See this web site for more info - http://www.lymeinfo.net/bloodtransfusions.html
Where are humans most susceptible to encounter ticks in the Carolinas?
Ticks can be anywhere grass and wooded areas are. One of the most common areas is the transition zone between wooded areas and grass or trails bordering this zone. Ticks can also be in your own yard, in a park, the woods or you can pick up a tick from a pet. Ticks are most active in early spring through the mid-summer and then again in the fall time frame. Black-legged ticks, which transmit Lyme disease, are also active on warm winter days. Walking or running through tall grass, along the sides of hiking trails and anywhere in the woods are ideal locations to pick up ticks.
How can I prevent Lyme disease and other tick-borne illnesses?
Do not change your current lifestyle or avoid nature and the beautiful recreation opportunities in the Carolinas. You do not have to be afraid but you must be aware! Be aware of ticks and the proper steps to take to minimize your exposure and potential to pick up a tick related disease. Dress to keeps ticks from coming into contact with your body. Use tick repellent, do tick checks after possible exposure and avoid areas that are known tick habitats. If you find a tick on you or another person, remove it according to the instructions on this site and be alert for symptoms for 4 weeks.
What should I do if I find a tick on me or a family member?
You should properly remove the tick as soon as possible. Follow the guidelines found on this web site. You do not have to see medical attention as long as you or someone can properly remove the tick. If this cannot be done, then either locate someone who can properly remove it or seek medical assistance. Do not delay the removal longer than necessary as the longer the tick is attached, the more you increase your chance of being infected. Tick removal is simple and all you need is a pair of sharp tweezers, some rubbing alcohol and the ability to get to the site of attachment (some bites are on your back or in an area that assistance is required to remove the tick). Remain calm and follow the instructions. If out in the field, wait till you return home and have access to the proper equipment rather than using your fingers to remove the tick. A few extra hours to do it properly will not usually increase your chances of acquiring an illness but improper removal may force bacteria into your body.
What is the proper way to remove a tick?
Remove a tick from your skin as soon as you notice it and have the correct size tweezers available. Use fine-tipped tweezers to firmly grasp the tick very close to your skin. With a steady motion, pull the tick's body away from your skin. Then clean your skin with soap and warm water. Place the tick in a clean vial with a cotton ball soaked in alcohol or in a plastic bag placed in the freezer. Write the date and location extracted on the bag. By saving the tick you are able to have it tested later should the need arise. Use tweezers with a fine tip as many ticks can be very small in size. If the tweezers tip covers the body of the tick, do not use them and try to located fine tip tweezers. You should avoid crushing the tick's body as you could inject bacteria into your body by compressing the tick's body. Grab the head only when removing the tick. Do not be alarmed if the tick's mouthparts remain in the skin. Try to remove the tick in the sunlight or have a bright light source as ticks can be very small and difficult to see. Make sure you get the entire tick and all of its body parts removed and the site cleaned properly. Clean your skin with soap and warm water or alcohol. Don't use petroleum jelly, a hot match, nail polish, or other products to remove a tick. Always save the tick.
Should I save the tick?
Yes! While the CDC tells you to "throw the dead tick out in the trash" this is not the procedure we recommend. Some state experts or web sites do not mention what to do with the tick but by saving in a plastic bag, this action could become very valuable to you later. Place the tick in a small plastic bag and store in the freezer (you can also place and alcohol soaked cotton ball in a plastic bag with the tick and store in a safe place). Should you come down with symptoms of a tick related disease you may wish to have the tick identified and tested for positive confirmation of an infection, should there be any questions or doubts from your results? Being able to test the tick at a later date may save you time and speed your treatment and recovery.
If I suspect Lyme or a tick related illness what should I do?
Download the symptom checklist located on this site. Keep of detailed record of your medical condition, symptoms or any other items which may assist the medical professional in their diagnosis. See a doctor who is familiar with Lyme and tick illnesses if you suspect you have a tick associated illness. Do not delay seeing a medical professional while waiting to see if the symptoms go away, because in many cases, they will go away on their own, only to resurface later and be more severe and difficult to treat when the disease progresses to later stages. Not only will the disease be more difficult to treat but the associated costs and lost work days can be economically severe.
When should I see a doctor?
If you know you where bit by a tick, remove the tick, save the tick and mark your calendar. If a rash develops at the spot or in another location on your skin within 1 to 2 weeks (sometimes it takes up to 30 days) or if you come down with some of the early symptoms mentioned in the Diagnosis section within 30 days of the bite - see a medical professional. Up to 50 percent of tick victims may not even know they were bitten and will start to have symptoms. If your exposure risk was elevated (hiking a week prior, visiting a park or any other place where you had an increased exposure to ticks, then tell this to your doctor as your symptoms can be tick related. Lastly, if you suspect you have a tick associated illness, know that many of the tests currently used are not reliable enough. A negative test does not mean you have no illness. This is one of the main problems of Lyme disease testing. Monitor your health and keep a log of dates and symptoms. Be persistent and get a second opinion if needed.
Why are there 2 standards of care when it comes to Lyme disease?
Lyme disease is a political disease as much as a medical disease. The IDSA (Infectious Disease Society of America) has performed all the CDC funded research and approved the medical treatment guidelines since the 90s. Their most current study says that Lyme disease (after treatment for 30 days of antibiotics and at most, 60 days) does not exist and that patients are treated successfully at the end of this time. Insurance companies rarely pay for more than 30 days of treatment and lobbyist for insurance companies rally for laws to dictate the length and amount of treatment a doctor can prescribe. Recently, the IDSA initiated a high-power political push to stop the Lyme Disease Bill being presented before Congress which would allow non-bias studies to be conducted on tick related diseases. However, the ILADS (International Lyme and Associated Diseases Society) group and many Lyme aware doctors maintain that they should "treat the patient" and not be held to pre-set time standards. Lyme disease may take many months or even years to cure depending on how long the patient has been infected and how their immune system is able to function and respond to treatment. Every patient is treated differently and no one protocol works for everyone. If you see a doctor or an establishment which follows IDSA guidelines (UNC and Duke Hospital use these guidelines) normal treatment protocol is up to 30 days. However, you may suffer from other co-infections or not be fully cured after this time and continue to suffer many more years till you find proper treatment. Try to locate a doctor who understands Lyme disease and is willing to offer treatment until your symptoms are resolved. This may be harder than you think and many patients are forced to go out of state and pay out-of-pocket fees for proper medical treatment.
What if my doctor does not believe in Lyme disease and dismisses the possibility?
If you think you may have a tick related disease and have the symptoms listed above, go and see another doctor. If you do not have a rash when you see a doctor and may have been infected for some time, insist on the Western Blot test for both IgG and IgM and make sure a reputable lab is doing the testing. The ELISA test is not always sensitive enough to show a positive for Lyme and many doctors go straight for the WB instead. While your doctor may insist on the ELISA first, still ask to have the WB. Also, know that the diagnosis of Lyme disease is a clinical diagnosis, not to be ruled out with a negative test, however many doctors do just that here in the South. If you feel you need to get a second opinion, seek someone who understands and treats tick-borne illnesses.
Why I should insist on being treated following ILADS guidelines vs. the IDSA standards?
The ILADS guidelines offer longer treatment and at higher strengths than IDSA protocol. Many patients are initially treated but the bacteria are not fully eliminated and they will go on to develop late and chronic symptoms - when the disease is much harder and costly to diagnosis and treat. Thirty days of antibiotics significantly increase your success rate of killing all of the possible infections completely. Insist on the maximum length of treatment your doctor will prescribe and at the highest dose you can get. If you develop negative reactions you can always reduce the dosage if required. Link to the guidelines - http://www.ilads.org/files/ILADS_Guidelines.pdf
Is there a laboratory test for Lyme disease?
Yes and no. The normal laboratory tests for Lyme disease are called the ELISA and Western Blot. Both of these blood tests only register if your body's immune system develops antibodies to the bacteria. Neither of these tests can actually detect Bb in your body. If your immune system does not recognize or produce the antibodies to Bb, then you will test negative. There are tests called PCR and DNA tests are available but these are not normally done on patients and are specialty tests that only a few laboratories offer. The CDC approved tests for Lyme disease have not changed since 1994 although there are more sensitive tests on the market today (see testing procedures documents under Diagnosis/Treatment section for more details on the testing).
Is there a difference in which laboratory performs the test?
Yes. The current tests for Lyme disease performed by most doctors require the ELISA test first and if the result is positive or unequivocal, then a Western Blot test is performed. Many Lyme doctors skip the ELISA test and go straight to the Western Blot because of how insensitive the ELISA can be. Even the CDC changed their reporting criteria to allow valid case reports without the ELISA test for 2008. These tests work fairly well if you are infected for less than a year and your immune system can recognize the bacteria. But the longer the bacteria is in your body, the greater risk your immune system will not recognize the bacteria, produce the required antibodies and show positive on one of these tests. The qualifications of the laboratory and the experience of the technician doing the test also play an important role in ensuring accurate test reporting. Since it is up to the technician reading the results to determine which bands may be positive, the experience of this individual is important. Research has shown that the same blood samples, sent to different labs, have produced both positive and negative results. This shows how difficult the WB is to interpret accurately. Choose a lab that specializes in Lyme testing for the best reliability. Most laboratories used by health care providers only provide a score and you are said to be positive if you reach a stated numeric number. Quality labs will test and report each band tested and your doctor can use this report to make the final "clinical" decision on your diagnosis. Knowing which bands are positive and negative is vital to accurate analysis of your test results. Additionally, some doctors may order the correct tests but not be qualified to accurately interpret the results and then not diagnosing the patient.
What is the reliability of laboratory testing and how this affects my diagnosis?
This question is difficult to quantify without published objective data on which lab is more accurate than another. But the one statement accepted by everyone is that laboratory tests alone cannot diagnose Lyme, or if negative, determine the patient does not have Lyme. The tests only support the clinical diagnosis from your doctor. However, a positive test does make the patient and treating doctor know they are on the right track and can aid the doctor in determining the proper protocol of antibiotics for treatment. The point to take away from this question is that a negative test result does not rule out Lyme, but is just one element of the many factors which go into the final diagnosis of this disease. Be aware that many doctors will tell a patient they do not have Lyme based solely on the results of laboratory tests.
Can Lyme disease go undiagnosed or be misdiagnosed as another disease?
Yes. Lyme disease is called the "Great Imitator" as it may present symptoms of hundreds of diseases like MS, CFS, Fibromyalgia, ALS or many other chronic diseases. Most Lyme disease patients will see between 6 - 12 doctors before getting the correct diagnosis. This is one of the goals of this site - to avoid time lost and to assist the patient in asking the right questions and helping the physician to connect-the-dots and determine the correct diagnosis as quickly as possible.
Why is Lyme disease frequently hard to diagnose in patients?
The true stories found on this site describe the frustration and difficulty residents experienced. Their personal stories provide insight into the issues, problems and number of times they were told "there is no Lyme disease in NC."
What happens if someone has Lyme, or a tick related disease, and goes untreated?
Any number of things may occur: 1) the disease may go away by itself (or no symptoms appear again) because your immune system is able to keep the bacteria in check or even kill off the Bb altogether. 2) Your symptoms may go away in a few weeks or months (this is why so many victims wait to see a doctor and then think whatever it was is now gone for good) because as the disease progresses to the next stage more symptoms appear and your body is more infected and a various organs of your body. The treatment now takes longer and is more expensive. A statement that holds true for all tick related illnesses- you want to treat them as soon as you can, with the longest treatment allowed and at the highest dose the doctor will allow you (ILADS treatment guidelines).
Can Lyme disease or other related ticks illnesses be fatal?
Yes, RMSF can kill you in weeks. Lyme disease can kill a patient by affecting different organs and some patients become so depressed that suicide is the only option for them just to escape the suffering. Erricolisous can be fatal if left untreated. Another view is that tick borne diseases are evolving as the environment changes and new vectors and hosts are being discovered that were not considered 10 years ago. The diseases associated with ticks may be changing with the environment and thus produce new vectors, symptoms and challenges to the patient. The CDC says STARI is "mild" but the Dr. who discovered it now says otherwise.
Why should I join a local support group?
Too often patients think they can't make a difference, are unwilling to admit they have this disease considering the controversy, or choose to separate themselves from others suffering with Lyme. Dealing with any chronic illness is difficult, can make you very depressed and feel like giving up on yourself and any efforts to help others. This is the very reason for this site. Our goal is to offer information, guidance and support based on our own personal experiences. Together every one of us can make a difference towards helping future patients.
How do I improve my body's immune system and its ability to fight these bacteria?
Additional supplements are often utilized to boost your immune system and allow your body the ability to fight the bacteria from within. This means products like strong anti-oxidants, Q-10, Alpha Lipoic Acid, vitamin C and B complex, getting regular sleep and reducing overall body stress as much as possible. Exercise is also recommended for those who are able because many patients tend to gain weight due to inactivity, fatigue and depression. Seek assistance from others to find the best system that works for you. There are special diets for Lyme disease that some web sites advertise to cure Lyme but be cautious. You are already spending enough on the essential products and treatment, so focus on good health, reducing stress (Yoga or meditation) church or religious groups and the support of family and friends to help get you through the tough times. Do not try to do this alone. Make sure you tell friends what you are going through and do not try to hide the fact that you have this disease. Your first step to being cured is to accept that you have Lyme yourself, as there are some who refuse to believe it because they don't want to admit they have this disease.
Are there alternative treatments for Lyme disease?
Yes as in any disease, there are alternate treatments advertised. But not every protocol will work for each individual so you need to make your own choices. Antibiotics is always your first choice with immune boosting supplements. There is a Vitamin C and Salt protocol from a European web site that claims to work but this can be a tough regime to follow and painful on the body. There is the Marshall Protocol but this takes a dramatic change in lifestyle, limited sunlight exposure and should be monitored by a physician experienced with this protocol. Again, a long period of treatment is required. To see if you are candidate for the Marshall Protocol, have your Vitamin D profile checked by your doctor and depending on the results, this could be an indicator of which treatment to use. If you search the web you will see many sites claiming to cure Lyme in 10 days or by diet and herbs alone. Do your homework, ask others in support groups what works and make your own decision. There is a list of alternative treatment products and their web sites located in the Links section. Above all, enlisting the guidance of a doctor educated in the treatment of Lyme and tick-related diseases should be your first line of defense.
How can family members assist the Lyme patient during their treatment?
A positive mental attitude by the patient and those around them is essential for recovery. Dealing with any chronic disease may leave a patient depressed and often frustrated. A good support network of family and friends is important. Family members should fully understand the needs of the patient and be educated to assist during the difficult treatment process. During treatment many patients feel worst before getting better. Contact with support groups and those experienced in Lyme treatment can assist the patient greatly during this period.
How can I make a difference for other patients in my state?
Register on our site and let your voice be heard. Join a local support group, NC-TIC or the North Carolina Lyme Disease Foundation. By combining our efforts we can unite as one voice and more efficiently represent our needs to make positive changes in the treatment and diagnosis of tick related illness in the South. Pay attention to information concerning media events, public awareness meetings or rallies to show support for Lyme or tick-related illnesses. This is your opportunity to help future residents and make positive changes in your state. This is the number one reason patients banded together and said we've had enough of the denial and misinformation from our Health Departments and the reason for this site. You can make a difference by educating others about ticks and sharing the information on this site. Talk to your doctors and ask for their views on Lyme. As a resident become informed by researching data and information available to make informed decisions related to your health care.
How long does it take to recover once I have been diagnosed and treated?
Recovery is dependent on the specific disease and length of infection. Every patient is unique and each will respond differently as their body heals. For an early diagnosis of Lyme (or Lyme-like illnesses) a minimum of thirty days of treatment will usually be adequate. But caution is advised as symptoms may continue beyond this period (please see the section of patient's stories). Late-Stage Lyme or Chronic Lyme may take many months or even years to treat fully. In some patients, complete recovery will never occur do the severity of the infection and the damage done from all the years of infection. Steps you can take to maximize your recovery and welfare are to have a positive attitude, follow your doctor's instructions and live as healthy a lifestyle as possible. You will have bad days and setbacks but by understanding that this is normal, you will prevail. Use your friends for their support and if you are inclined, use spiritual beliefs to assist in your treatment and recovery. This may not be an easy task, so seek help from others.
How do I deal with the high medical costs associated with this disease?
Residents seeking help for late or Chronic Lyme disease often face expensive treatment protocols for long term IV therapies. Most insurance companies will support IV treatment for thirty days. However many patients require extended therapies and do not have funds to pay for expenses associated with long term protocols. Stories of patients taking a second mortgage on their home or borrowing thousands of dollars, is common. In the Insurance section of this site, detailed information is provided to assist you in filing claims and getting refunds for medical services. Understanding the details of your insurance policy is vital. It may take months to be reimbursed from your insurance so be prepared to spend many thousands of dollars upfront before being able to get some of the money back. These delays are the result of out-dated treatment guidelines utilized by insurance companies which promotes the need for patients to seek medical treatment from out-of-network providers.
Can animals and pets get Lyme disease?
Yes, just like humans. While it seems that Dogs are more prevalent than cats, both can be infected. There are measures you can take to minimize exposure and infections by following the guidance on the following link - http://www.thepetcenter.com/gen/lyme.html
To view the number of dogs infected with diseases identified by a Vet drug company, see this link - http://www.dogsandticks.com/US-map-lyme-disease-dogs/index.html
Another good resource for pets if found on the North Carolina State University College of Veterinary Medicine link at - http://cvm.ncsu.edu/vth/ticklab.html
Please note the aggressive diagnostic and treatment regimes suggested by our veterinary community when screening and treating for tick related illnesses.