Diagnosis, Treatment, & Misdiagnosis
Obtaining a diagnosis is the biggest challenge for those infected with Lyme and other tick-related diseases. The first point to understand is that the diagnosis of Lyme disease is a clinical diagnosis. But this is often not the case. There is not one specific test that you can take that will tell your physician conclusively, whether you have Lyme or do not have Lyme. This is why the CDC says not to use the blood tests alone to determine a diagnosis, as many doctors will do. You may be told that you may have Lyme, have a Lyme test and then in 5 days be told the test was negative and that you don't have Lyme. You then get treated for some other condition. Now what do you do if you are really suffering from Lyme or a Lyme-Like-Illness? The problem here in the South is that there is not enough experienced doctors who know what to look for, in terms of Late-Stage/clinical symptoms. The other issue is that there are some who do not believe the patient could not be infected with Lyme (political issues maybe?) and will try to find every other possible diagnosis to explain your illness (see Lyme Stories). If you do get a Lyme diagnosis it is only because you are persistent in asking questions, you have gone to the right doctor, your symptoms are very discrete towards Lyme (classic EM rash) your tests have come back positive and your doctor has exhausted all other possible explanations for your illness. This process may take a great deal of time and cost the patient many thousands in medical costs and travel expenses, in order to be successfully treated. This is why It's so important to catch and treat Lyme disease in the earliest phase. Another problem with the standard Lyme disease blood tests is that they have not changed in nearly 15 years, even though technology has improved greatly. The current tests were designed around 100 or so patients who had Lyme disease less than 1 year. Those who have Chronic or Late-Stage Lyme may not show the same antibodies and thus test negative when compared to the same CDC accepted standards of 1994. Ask yourself why are we still using the same tests and guidelines the CDC used then? The answer to this question would give you some insight into the political aspects of this disease.
If you are lucky enough to have the classic Bull's-eye rash, diagnosed with possible Lyme disease (or another tick disease) and treated with adequate antibiotics, you have a good probability that you will fully regain your health. Unfortunately, most patients with Late or Chronic Lyme may never recall a tick bite, are misdiagnosed with another disease or go undiagnosed completely. This site's main goal is to educate residents and help those residents who may be infected, educate themselves and get the proper diagnosis they deserve. Please note - not everybody who has unexplained symptoms, chronic problems, or those who may think they have Lyme disease, will actually have a tick-related disease. But since most people with chronic or long term sicknesses have nothing to lose by investigating this possibility, we advise everyone who thinks they could have a tick-related disease to look at Lyme and possible co-infections as a diagnosis. Doctors in the South do not usually give enough attention to these diseases when it may be the root cause of your illness. You are the one who is sick and you are the one who knows your body the best. You are the one who has the most to gain and equally, the most to lose. It is up to you to help guide your doctors and actively participate in your medical diagnosis. Get a second opinion if you are not satisfied with your doctor's decision or convinced you have what your doctor states. For example, a patient was recently told by a respected doctor that he could not possibly have Lyme disease, that there has never been a documented case of Neurological Lyme in the state of North Carolina and that MS was what he was suffering from. However, this patient did his own research and challenged this diagnosis, educated himself and was later diagnosed and treated for Lyme disease. 8 months later he went back to this same doctor and while he never did an apology, the doctor did agree that all the evidence pointed to Lyme disease. Examples such as this are frequent from Late-Stage or Chronic Lyme disease patients.
There are many different tick related illnesses found in the Carolinas For example, North Carolina leads the nation in Rocky Mountain Spotted Fever (RMSF) as there were 665 reported cases in 07 with two recorded deaths so far in 2008. Facts to keep in mind are:
- Not every person recalls or knows they were bitten by a tick. This can be due to the location on the body of the bite or the fact that the tick injects a chemical at the site which makes the bite unnoticeable or felt by the victim.
- Not every person will get the "Classic" Lyme rash or any rash at all. Without the rash, many doctors will not diagnosis Lyme or a Lyme-Like-Illness but scientific studies have shown that no rash may occur in nearly half the cases.
- There are some doctors who do not believe Lyme disease actually occurs in the Carolinas and therefore will never diagnose or treat a patient for Lyme disease. They will not even consider a possible co-infection (tick-related disease). Some doctors (or practices) will not see a patient if they mention the reason for the visit is for possible Lyme disease. This may be due to the North Carolina Medical Board being very aggressive towards doctors who treat Lyme patients following the Jemsek case in 2007. Rather than deal with the potential conflict, these doctors avoid patients altogether. Both Duke Hospital and UNC Hospital both were this way when contacted for appointments in late 2007. However, currently they will review your case history and see patients they deem acceptable (a NC resident relayed her recent account of her visit to Duke's Infectious Disease Clinic and was told by the doctor she saw "there is no Lyme disease acquired in North Carolina" - July of 08).
Now that you understand the issues associated with being diagnosed in the South, the next step is to keep detailed records of your symptoms and be ready to give your doctor as much information that you can, pertinent to your illness. The more information, such as symptoms, family history, possible causes, etc., the better your doctor is able to make an educated diagnosis. There are many symptoms of Lyme disease but the following list is one of the best we've seen. Copy the list and mark which ones apply to you. Bring this list with you during your doctor's visit. The following information is borrowed from www.canlyme.com
The classic rash may only occur or have been seen in as few as 30% of cases (many rashes in body hair and indiscreet areas go undetected). Treatment in this early stage is critical.
If left untreated or treated insufficiently, symptoms may creep into one's life over weeks, months or even years. They wax and wane and may even go into remission only to come out at a later date...even years later.
With symptoms present, a negative lab result means very little as they are very unreliable. The diagnosis, with today's limitations in the lab, must be clinical.
Many Lyme patients were firstly diagnosed with other illnesses such as Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis, Gastroesophageal Reflux Disease, Fifth Disease, Multiple Sclerosis, scleroderma, lupus, early ALS, early Alzheimers Disease, crohn's disease, ménières syndrome, reynaud's syndrome, sjogren's syndrome, irritable bowel syndrome, colitis, prostatitis, psychiatric disorders (bipolar, depression, etc.), encephalitis, sleep disorders, thyroid disease and various other illnesses.
The one common thread with Lyme Disease is the number of systems affected (brain, central nervous system, autonomic nervous system, cardiovascular, digestive, respiratory, muscular-skeletal, etc.) and sometimes the hourly/daily/weekly/monthly changing of symptoms.
Coinfections may bring a mix of their own symptoms and testing issues.
Laboratory Testing for Lyme
While Lyme disease is a clinical diagnosis and we have said from the start how inaccurate the Lyme tests are known, most doctors will perform one (both in some cases) of the laboratory blood tests for Lyme if the patient does not have the classic EM rash (the rash alone will normally generate antibiotic treatment and not require a test). One important point to remember is that antibiotic treatment alone, if not adequate and strong enough, will be ineffective. Depending on your doctor, you will either have the ELISA test or go straight to the Western Blot. Lyme wise doctors usually do not perform the ELISA and will go straight to the Western Blot. Both are performed using a sample of your blood. Given the problems with the tests, an accurate result may depend on which laboratory does your testing. Specialty labs claim to offer higher accuracy over non-specialty (LabCorp, Quest etc.) labs. While this site believes the patient should have all bands reported in the Western Blot test (allows your doctor to make a more accurate diagnosis) some non-specialty labs do not do this. You either get a single "positive or negative" test result. Since all bands are worth knowing, these labs may miss patients who have the disease because they do not show all reportable bands. Of the 10 bands reportable, any one band showing positive may be significant to your doctor and in your diagnosis.
It needs to be mentioned that there are other types of tests for Lyme disease used today (PCR for example) that do not look for antibodies in the blood but they will not be addressed in this site. It is also difficult to test for many tick-related diseases as STARI and many of the co-infections either have no available test or can be difficult to detect.
Work with your doctor and see what is recommended. Ask yourself if it's worth 200 dollars to have a specialty lab do your tests (you may get reimbursed for all or some of this money through your medical insurance company)? Since your health is the most important element at this stage, most believe it is worth the money. But this is your decision to make. No recommendations are made by this site as whether to use a routine lab or specialty laboratories. Here are two frequently used: