Date:   2/13/2008 3:15:01 PM ( 16 y ago)
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URL:   https://www.curezone.org/forums/fm.asp?i=1110437

http://www.bmj.com/cgi/eletters/335/7626/910#179199

Ria Heslop, Disabled

24 November 2007

As a patient being miss-diagnosed in the UK for over 6 years and left to become disabled by the UK NHS I personally believe the Lyme disease testing in the UK is inadequate. Once diagnosed in the USA with Late stage Lyme disease I then came to realise that no person within the NHS was conversant with treating late stage Lyme disease. Not only are you left to be disabled by a failed UK system you are often then denied your treatment or funding for your treatment - in my case funding was given although no person knew how to manage this treatment. It is to this end that many UK Lyme sufferers have no choice than to fund private treatment in the USA.

Whilst the medical profession are fightling about what is right and what is wrong they forget that there a patient behind this fighting, that needs urgent treatment. One thing doctors are taught in medical schools is to treat the patient, not the test result.

It is mentioned here that UK testing is reliable although, please refer to the following information from my treating USA Consultant, who has over 20 years experience in treating Lyme Disease.

Recent surveys Show as little as 5% of UK General Practitioners know how to diagnose Lyme disease and even this small percentage rely on the characteristic red bulls-eye rash (EM) at the site of the bite although, this is present in less than 40% of patients.

When physicians do consider borreliosis, they often start with a screening test such as an EIA, ELISA, IFA or PCR-DNA probe. If the initial screening test is negative, many physicians tell patients they do not have borreliosis and the testing is stopped right there. Screening tests that are positive are often followed by the Western blot. The blot is a “confirmatory” test, as opposed to a screening test. (Blots are performed for other infections -- it is a type of test, not a test uniquely for the borreliosis bacteria.)

Western blots are accomplished by breaking the Borrelia burgdorferi into pieces, and those parts of the Lyme bacteria are then embedded in a gel. Electricity is used to push antibodies made by the immune system through the gel. Antibodies that are made to attach to certain parts of the bacteria will bind to those exact parts that are embedded in the gel. When the antibodies bind to the parts of the bacteria, a black band is formed, which is then interpreted as IND, +, ++ or +++ depending upon the intensity or darkness of the band. Each part of the Lyme bacteria weighs a certain amount. For example, the tail of the Lyme bacteria weighs 41 kilodaltons (kDa). Think of kilodaltons like pounds, ounces or kilograms. The numbers on a Western blot such as 23, 31, 34 or 39 refer to how much that particular part of the bacteria weighs in kilodaltons. The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93. It’s important to know that screening tests like the EIA, ELISA, IFA and PCR can be negative even when the Western blot (confirmatory test) is positive. Research that supported this at the 1994 International Lyme Borreliosis Conference held in Bologna, Italy supported this. For this reason the screening test are practically worthless, and is why the Western blot needs to be used to “screen” for borreliosis, even though it is a “confirmatory” test. Antibodies are very specific as to what they bind; consequently, in over 700 borreliosis patients’ false positive blot results occurred in only three percent of them, based upon research presented at the 2000 International Lyme Borreliosis conference. Data from those same 700 patients showed that if their Western blots had even one antibody significantly associated with the bacteria, there was a 97 percent chance they would feel better with antibiotics.

One thing doctors are taught in medical schools is to treat the patient, not the test result. If someone has chronic pain, fatigue, cognitive problems, blurry vision and/or neurological problems, and also has a significant antibody on a borreliosis Western blot, that antibody should not be ignored, even if the ‘official’ interpretation is negative or equivocal. Remember, antibodies are very specific to what they bind, and borreliosis may cause virtually any symptom and any disease.

Disease surveillance is close observation of a group of patients with the same disease, and it is one of the jobs of the Centres for Disease Control (CDC). Criteria used for disease surveillance is often different than criteria used to diagnose and treat patients. Surveillance criteria should not be used in day-to-day clinical medical practice. Unfortunately, many patients are told they do not have borreliosis because they do not meet CDC’s surveillance criteria. Surveillance criteria exclude some of the classic hallmark antibodies, such as the 31 kDa band (outer surface protein A or ospA) and the 34 kDa band (outer surface protein B or ospB). In fact, the 31 kDa band is so tightly associated with borreliosis that a vaccine was made from that outer surface protein. In other words, those criteria that exclude the ospA (31 kDa) band should not be used to tell a patient they do not have borreliosis. Common sense should tell anyone that prevalent antibodies like the 31 dKa and 34 dKa should be included in the criteria, not excluded. Remember, research supports that if just one antibody that is significantly associated with Borrelia burgdorferi is present on a Western blot, 97 percent of those patients with chronic symptoms or chronic diseases feel better with antibiotics.

Same day head-to-head comparisons of borreliosis Western blot results revealed that reference laboratories do a better job of finding antibodies against Borrelia burgdorferi than regular laboratories. This raised the obvious concern that the reference labs might be over diagnosing patients with borreliosis. That is one of the reasons why 700 patients were researched. However, the false positive rate was just three percent. This concludes reference laboratories do not over-diagnose borreliosis.

False negative test results, on the other hand, are a much bigger problem, in my experience. Negative Western blots convert to positive in 18 to 24 percent of cases, if four weeks of antibiotics are given, and then the patients go off antibiotics for 10 to 14 days before the repeat Western blots are done. In other words, a false negative Western blot converts to positive in about one out of five borreliosis patients. This is a much greater problem than a false positive rate of only three percent.

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