My Personal History of Lyme Disease 4,1 My Experience with Lyme Disease Adrian Bjornson (October 2012) In May 2009 I experienced a strange sore on my back. Since I was about to take a trip, I went to the emergency room of a hospital. The doctor found that the sore was a cyst containing a dead tick. I was tested for Lyme disease and other tick-borne diseases, and was given 10 days of antibiotics. A few days later, I was told that the tests were Negative. I did not realize that the usual test for Lyme is notoriously unreliable, typically with 40 % false negatives. Besides, tests for Lyme are generally not meaningful within six weeks of exposure. Also, I had the dead tick, which could easily have been tested. I had been having headaches for months, probably because I was drinking too much diet soda with Aspartame. The headaches got worse, with strong vertigo. These symptoms improved considerably when I stopped the diet soda. I did not realize that a headache with vertigo is a strong indicator of Lyme. In September, I was caught in the rain, and chilled. I developed coldlike symptoms, which did not go away. The headache and vertigo got worse. I was tested for a sinus infection, and an inner ear problem, with negative results. Finally, about January, the dizzy, vertigo headache became what I can best describe as a sick headache. I then realized that I must have Lyme disease. I have a friend, a woman in her 50 s, who has had Lyme disease for many years. She recommended that I send a blood test to Igenex Labs, and so I ordered a Lyme test kit from Igenex. My primary care physician agreed to support this test. The results are shown in Table 1 as Igenex Test No. 1. Table 2 gives supporting information pertaining to the tests. These are called Western Blot tests, and consist of two types of tests: IgM represents short-term Lyme (less than 6 months) and IgG represents longterm Lyme. The results were officially Negative, but they suggested that I might have Lyme. My primarycare physician agreed to give me 45 days of Doxycycline antibiotic. I started to feel much better. Then, after 5 days, a strong reaction occurred. One day I slept for 20 hours out of 24. My friend with Lyme had told me to expect this effect. As the Lyme bacteria are killed, they release toxins that produce a strong reaction. Hence this reaction indicated that I probably had Lyme. After that, I gradually improved, but at the end of 45 days I knew I was not fully cured. My doctor refused to prescribe more antibiotics, and sent me to an Infectious Disease Specialist. The Specialist did not test me physically. Instead, he gave a 10-minute lecture, saying that excessive antibiotic use is producing antibiotic-resistant bacteria and is polluting the environment. When he finally let me respond, I asked him about the use of antibiotics by animals. We are working on that problem, he replied. I later discovered that 70% of antibiotics are given to animals.
Table 1: Igenex Lyme Disease Tests Lyme IgM Western Blot Test No. 1 Band 18: Neg. Band 22: Neg. *Band 23-25: Neg. Band 28: Neg. Band 30: Neg. *Band 34: Neg. Lyme IgG Western Blot Test No. 1 Results: Igenex (IgM) Result: Negative CDC/NYS (IgM) Result: Negative *Band 39: Neg *Band 41: Ind. Band 45: Neg. Band 58: Neg Band 66: Neg. Results: Igenex (IgG) Result: Negative CDC/NYS (IgG) Result: Negative Band 18: Neg. *Band 39: Ind. Band 22: Neg. *Band 41: +++ *Band 23-25: Neg. Band 45: Neg. Band 28: Neg. Band 58: + Band 30: Neg. Band 66: Neg. *Band 34: Ind. Lyme IgM Western Blot Test No. 2 Results: Igenex (IgM) Result: Negative CDC/NYS (IgM) Result: Negative Band 18: Neg. *Band 39: Neg Band 22: Neg. *Band 41: + *Band 23-25: Neg. Band 45: Neg. Band 28: Neg. Band 58: Neg. Band 30: Neg. Band 66: Neg *Band 34: Neg. Lyme IgG Western Blot Test No. 2 Results: Igenex (IgG) Result: Positive CDC/NYS (IgG) Result: Positive Band 18: + *Band 39: Ind. Band 22: Neg. *Band 41: +++ *Band 23-25: + Band 45: Neg. Band 28: Neg. Band 58: + Band 30: + Band 66: Neg. *Band 34: +
Table 2: Notes from Igenex Igenex Inc., 795 San Antonio Road, Palo Alto, CA, 94303, tel:800-832-3200 Band Intensity: Negative (Neg.): No Visible Band Present Indeterminate (Ind): Weak Band Positive (+ to ++++): Band Present with Intensity (+1) to (+4) Interpretation Igenex Criteria: Igenex interpretation is based on internal validation studies. By Igenex criteria, IgG or IgM Western Blot is considered positive if two or more of the (*) bands are present. Otherwise, the IgG or IgM Western Blot is considered negative. A Positive Report suggests exposure to B. bergdoferi (Lyme bacteria). Presence or Indeterminate reading for only one (*) band in a negative report may indicate clinical significance. Therefore, for this case, Igenex recommends testing by another method, or retesting in 4-6 weeks. CDC/New-York-State Criteria: By CDC/NYS criteria, IgM Western Blot is reported positive if two of the following bands are present: 23-25, 39, 41. Otherwise, the IgM Western Blot is reported negative. By CDC/NYS criteria, IgG Western Blot is reported positive if five of the following bands are present: 18, 23-25, 28, 30, 39, 41, 45, 58, 66, 83-93. Otherwise, the IgG Western Blot is reported negative. General Comments: Positive results for Bands 31 and/or 34 may be present after Lyme vaccination in uninfected persons. Infection with HSV, EBV, HCV, and/or syphilis (RPR +) may give false positive results for IgM. For IgM, in a sample set of 165 well-characterized specimens with 36% positivity rate, the assay specificity and sensitivity was 96% and 73% by Igenex criteria; 99% and 58% by CDC/NYS criteria, respectively. For IgG, in a sample set of 165 well-characterized specimens with 36% positivity rate, the assay specificity and sensitivity was 96% and 63% by Igenex criteria; 100% and 38% by CDC/NYS criteria, respectively. Diagnosis: Diagnosis should not be based on laboratory results alone. Results should be interpreted in conjunction with clinical symptoms and patient history.
The Infectious Disease Specialist told me that he did not have faith in Igenex Labs, and wanted me to have a blood test by a local laboratory that he trusted. The new test came back Negative. However, this lab did not provide any back-up information. Even though I repeatedly questioned the laboratory, I could not even find out what bands were tested. (I now suspect that this was an ELISA test, which typically has at least 40% false negative results.) After this Negative report, the Specialist informed me that I definitely did not have Lyme and I had never had Lyme. I arranged an appointment with my primary care physician, and asked him to support a second blood test by Igenex. He refused. Since the Infectious Disease Specialist had concluded that I did not have Lyme, that settled the matter. What about my symptoms? I asked. He replied, We will consider other possible causes, but we will not consider Lyme. I shook his hand, and told him that I was getting another primary-care physician. I found a young primary-care doctor, who was associated with a large group of specialists. He suggested that I should see two specialists in his group on Neurology and Infectious Diseases. He agreed to support another test by Igenex. The result is shown in Table 1 as Igenex Test No 2. This test was definitely Positive. My doctor reported that it was his understanding that the Positive result merely shows that I once had Lyme. The 45 days of Doxycycline that I had received should have cured my Lyme, and so I probably did not have Lyme at that time. I suspected that his specialists were the source of this information, and so I decided that it was prudent not to see those specialists. I still use this doctor as my primary care physician. My friend with Lyme disease was able to obtain the name of a doctor who was competent in treating Lyme. With that doctor, I was on antibiotic treatment for two years, and have improved tremendously. I live in Massachusetts. This has the advantage that our state passed a law in July 2010 stating that a medical doctor cannot be penalized for using excessive antibiotics in treating Lyme disease. My Lyme doctor has given me various neurological tests. One simple neurological test is to stand on one foot. I can easily do that now, but originally I could not. My Friend with Chronic Lyme Disease I am retired. I have a much younger lady friend in her 50 s, who has struggled with Lyme for many years, and has provided me with guidance in my struggle. She was officially diagnosed with Lyme in 2008, after 14 years of going to so many medical specialists she cannot count them. She finally learned the cause of her illness from two friends. The first friend said that she probably had Lyme, and should be tested by Igenex, but the test was officially Negative. A second friend sent her to a Lyme expert in Connecticut. He looked at the Igenex test, and saw that it was (+1) for Band 31. You definitely have Lyme, He said, Band 31 cannot mean anything else but Lyme. The Lyme doctor put her on antibiotics to kill the Lyme bacteria. Then came the much longer struggle to repair her badly damaged immune and neurological systems. She was given expensive Inter-Venous Immuno-Globulin (IVIG) treatments, which her health insurance fortunately covered. She is finally getting her body back together, to live the life that God
intended. If she had gone much longer without treatment, she would probably be dead now, or close to it Why did all of those specialists miss the obvious diagnosis of Lyme? An early ELISA Lyme test by a neurologist found that she was Indeterminate for Lyme. Instead of informing her that she might have Lyme, the doctor repeated this ELISA test. The second test was Negative, and so he rejected the Lyme diagnosis. This doctor had high credentials. Subsequent specialists apparently followed this doctor s diagnosis, and ignored the obvious possibility of Lyme. My friend was finally diagnosed with Fibromyalgia by a specialist, shortly before her friend made the correct Lyme diagnosis. But Fibromyalgia is a Syndrome, which means that it is a collection of symptoms, with no known cause and no known cure. It is reported that about 5 million people in our country have Fibromyalgia. There is reason to believe that many of these patients (and possibly most) really have Lyme disease. When one realizes how easy it is to catch Lyme from a tick bite, and how very difficult it is to diagnose and cure it, one should not be surprised if an enormous number of people in our country have undiagnosed Lyme disease. Lyme shares its symptoms with several neurological diseases, including Chronic Fatigue Syndrome, Fibromyalgia, Multiple Sclerosis, ALS (or Lou Gehrig s disease), Parkinson s Disease, and Alzheimer s Disease. If you suspect that you might have Lyme, what should you do? First, you should have a Western Blot blood test by Igenex Laboratory. The test only costs $ 200, but your doctor has to support the test. Next, View the Test Results Yourself. Do not interpret an official Negative result to mean that you do not have Lyme. Even an Indeterminate response on any of the starred bands might mean that you actually do have Lyme. Finally, contact Lymedisease.Org on the internet for more information. Lyme disease support groups are being set up to help Lyme patients find medical help. More and more medical doctors are being trained to give competent Lyme treatment. I give further guidance in 4,0 Introduction to Lyme Disease. Discussion of Igenex Lyme Test Results Blood tests for Lyme do not directly test for the Lyme bacteria. They test the immune reaction of the white blood cells to the Lyme bacteria. My test by Igenex was a Western Blot test. However, most medical labs do a much less sensitive test called an ELISA (or EIA) test. The ELISA test has about 40% false Negatives. Consequently, to be told that you have a Negative Lyme test usually has little meaning. A Negative result does not mean that you do not have Lyme. It merely means that they have not proven that you definitely do have Lyme. Besides, it usually takes about six weeks for the body to build up an immune reaction to Lyme. Consequently, the ELISA Lyme test that I initially received at the hospital ER ward was essentially worthless. The CDC (Center for Disease Control), in their website on Lyme disease testing, specifies a two-step process in testing for Lyme. First, they do an EIA (or ELISA) test. If the first step is negative, no further testing of the specimen is recommended. If the first step is positive, or indeterminate, the
Western Blot test is performed. Results are considered positive only is both the EIA and Western Blot test are both positive. CDC does not recommend skipping the first test and just doing the Western Blot. Doing so will increase the frequency of false positive results and may lead to misdiagnosis and improper treatment. Doctors generally follow the CDC guidelines. CDC bends over backward to avoid a false positive, and thereby achieves a great many false negatives. However, the patient confidently assumes he does not have Lyme if his Lyme test is Negative. The testing problem is further confused by the fact that Bands 31 and 34 are often omitted from the Western Blot test, even though they are the strongest indicators of Lyme. In fact, Igenex is prohibited (probably by the CDC) from including Bands 31 and 34 for patients who live in New York State. If you live in New York State and want an Igenex Western Blot Lyme test, I suggest that you visit a doctor outside your state, and send your test through that doctor. Why do crazy rules like this operate? Bands 31 and 34 were initially reserved from the regular testing procedure so that they could be used for developing a vaccine against Lyme. However, the vaccine was a complete failure; it gave the patients Lyme disease. It is only Specialty labs like Igenex that include Bands 31 and 34 in the Western Blot test, and even they are prohibited from including these bands when testing New York State patients. Most testing labs do a poor job in testing for Lyme, not because they are incompetent; they are forced to follow the CDC rules. The Infectious Disease Society of America (IDSA) At the heart of the Lyme tragedy is the Infectious Disease Society of America (IDSA). They have set Guidelines for treating Lyme that are being used to deny patients effective treatment. They basically claim that 28 days of antibiotic treatment are all that is required to treat Lyme disease. They also claim that there is no clear evidence that chronic Lyme disease exists. These guidelines have been used by insurance companies to deny payment for Lyme treatment, and to attack doctors who use aggressive (and effective) treatment to combat Lyme.