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MOTOR NEURON DISEASE/ALS STABILIZED ON LONG TERM ANTIBIOTICS

Posted Nov 24 2012 3:40pm
Sharing from a friend with a link to a post on my blog about him here

The translation is thanks to Google so apologise for errors but you get the idea.

Dear Joanne 
would you please translate this to English? Its a column to have been underwritten wooden i will send to ILADS guys! borreliasyk I've been in 12 years. 

Like many others, I have not been believed that the Norwegian health care system that diagnosed me with ALS. I've driven trial twice. Lost both. This despite the fact that I tested positive on the Western Blot test, tested positive at the Vestfold Hospital and found Borrelia DNA in my blood in 2009. 

I sometimes have a feeling of being involuntary participant in an academic parlor game. It's as if most of the health care system sees this as a game - and not as a prolonged, intense and bitter struggle for life and health. , we have a large group of seriously ill patients who have good reason to believe that a Borrelia infection is the underlying cause - but are banned from using the device with a negative antibody test (often Elisa) as justification. 

In 12 years I have accumulated knowledge about the disease, but it seems that doctors have a monopoly on qualified opinions. Because of their status, they can decide what is the scope for credible evidence to justify saying their opinions. 

If they encounter documentation that goes across their opinions, they may with ease doubt about it. Or so they know not to studies and publications that make their arguments fall through. The latter is probably hard to recognize, so it will be easier to call documentation implausible. 

I refer to the magazine's story about how Borrelia among others Dr. Jon Sundal attended. He was also an expert witness against me in the trial. I'm not looking for the actual content of the program, but there are general attitudes Sundal have, I want to life! 

One tries to persuade public opinion that good western blot tests often give false positive responses, which is incorrect tests based on several numerical markers that identify Borrelia bacterium. Some markers are nonspecific and may cross react with other bacteria, while some markers are specific borrelia "fingerprint" - markers. Mon. require a certain number of markers to be regarded as positive for declaring the test as positive. 

This will make it easier to evaluate the tests. requirement to have a positive test, three of these specific markers. 

The American Health Authority (CDC) has recognized my test as secure positive. micrograms recombinant western blot (immunoblot) containing antigen that captures all strains of Borrelia bacteria. It does not Elisa! . Recommended Vestfold Hospital (SIV's) MIKROGEN recombinant western blot that is the best test.

 The problem is again money. The test is expensive and time consuming. This must be funded! SIV has expertise and a highly skilled specialists! 

Sundal also claims that one must have inflammatory cells in the spinal fluid of having neuroborreliosis. This Slovenian researcher Franck Strle proven wrong. He is with Hunfeld Fingerle Wilske and Stanek among tungtvektekterne in Europa.Også laboratories in Norway have discovered this! Unfortunately, doctors are not updated for this No, absolutely no Norwegian attending their seminars! Only a retired doctor, Per Bjarke. 

False negative tests dominate. Therefore, it is dangerous to allude that Elisa tests are good enough. Lori Bakken conducted a double-blind study showed that not only was Elisa inaccuracies between competing laboratories, but the same laboratory showed different results on the same sample. Only 45 laboratories had a score of 55 percent.

 Another study was conducted by the College of American Patholigists. The result was terrible. It was similar to the same number of false positives as false negatives. Only 45 percent of the 516 laboratories that tested showed the correct answer. It entered that stage I of the disease discovers Elisa 20-50 percent of cases and in stage II / III 70-100 percent, depending on the tests used. 

Some argue that sensitivity in stage II / III is not more than 20-80 per cent. The tests used in the cerebrospinal fluid in Norway today finds no more than 50 percent: 70 percent for garinii and 10 percent for afzelii, which is the most common borrelia strain circulating in Norway due to false negative results are numerous. 


The bacteria manipulate our immune system so that we do not produce antibodies. Antibodies are very late in forføpet. The bacteria can lie in niches inside the cells of the organs where it is hidden from the immune system. The bacterium converted to cyst forms with new antigens that are not found in the tests available today. 

The tests used today are quite specific as false positive is not a big problem. False negatives, however, problematic. This is why clinic and patients' own history is so important in the overall assessment. I think Western blot should be emphasized rather than as indirect Elisa test. The sensitivity has been discussed regarding western blot, but specific band in the test should be a clear indicator of Borrelia infection. 
ANTIBIOTICS For chronically ill have a pulsating regime (periodic time) high doses of ceftriaxone IV has been a success. This was published in the early 90's and was confirmed on MLDA Lyme congress in 2002. treatment should be individualized on both the dosage and length. 
Stricker refers to studies where long-term antibiotic treatment is far better than the standard treatment. Klempners standard (Dr Mark Klem opens conducted a study on the treatment of patients. Though the study had clear deficiencies, it has been accepted as standard. Probably why we have several cases of illness due under treatment) in a month ceftriaxone IV and two months of oral doxycycklin, had little effect on chronic borrelia or come late disease. 
Increased improvement the longer treatment duration was noticeable. This is published in the CID that is a IDSA (Infectious Disease Society of America). Looks like IDSA turns when they choose to publish this. So in these cases must be treated for months and even years with antibiotics. 
Change of combination treatments may be necessary. Must be individualized. It is vital to acknowledge this since late come and chronic Borrelia ill probably have chronic infection combined with additional infections. Therefore, required prolonged treatment. Therefore I genuinely sorry when doctors refuse patients treatment! There is no reason to doubt that prolonged treatment helps some. 
According to statistics I should have been dead 10 years ago! I'm probably the only one in the world who has lived with ALS diagnosis in 12 years, which can stand on their feet and do not need a respirator! Court, the appeal board patient and their experts find it more probable than that I have borrelia. 
Fortunately rescued antibiotics I received in the USA for 03 my life! I had to go. Here at home did not help! Health care is often concerned with the ethical dimension. As I see it, it is the exclusion of Lyme disease patients is the greatest ethical challenge. These patients (assuming they indisputably have very severe disease) are invited ME diagnosis or ALS without other evidence than that it can not be anything else. 
It may NOT be ethically problematic to make treatment studies in this group of patients. They get anyway no qualified help. I will fight for us, as long as there is life in me.
Eivind Markhus
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