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Joannemar

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Sharing from a friend with a link to a post on my blog about him 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
 

notme

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I don't know about others, but I simply can't read a huge block of text like this.
 

dbach

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I tried to read this, but am sorry I have to agree 100% with notme. I hope because of the format I haven't overlooked something vitally important, but from what I did have my doubts. Sorry not trying to critique anyone's contribution but was just an overwhelming format.
Darryl
 

vzandt

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Notme is right. To much information. All I can gather from this is "lyme" "antibiotics". Needs to be broken down if you want us to follow what your trying to say.
 

Joannemar

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I apologise for the text being clustered together and also for the poor quality of the translation. If you want to read cut and paste and do what you like with it. Or just ignore it no problem for me.

I merely thought you might like to hear someone diagnosed with ALS by the Norwegian health care system 12 years ago. Who is still able to stand and does not need a respirator - something quite unheard of in ALS patients.

His treatment was long term antibiotics because he was diagnosed and treated for Lyme Disease.

The Norwegian Health authorities do not accept he has Lyme Disease he tries to explain the inadequacies in Lyme Disease testing which is well documented in every country being that they are antibody tests developed on only one strain B31 which is not even found in nature when there are in fact hundreds of different strains as well as several species here in Europe.

Difficulties reading script is a common problem for Lyme patients too a simple cut and paste and change of spacing, size and font is useful. I have no desire to follow this forum and learn the intrecasies of posting here.

Those who seek answers can do their own research there are several cases around the World who found their ALS/MND to be Lyme and the controversies over testing, diagnosis and treatment of Lyme Disease is an International medical disgrace because it leaves thousands of patients without early diagnosis and adequate treatment.
 

momofsixkids60

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That was a tough read. I read a few lines then left. Came back and read a few more and then left. It took about 30 minutes and I had forgotten what was being said.
 

scotslassie

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It's a bit overwhelming. Even breaking it up and reading it in smaller blocks is difficult. Maybe, Joanne, if you could make a brief statement about the main facts then summarise it we would understand better and be able to answer you. Thanks.
 

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Hi all

This has also been posted on the Alternative therapies thread, and replied to on there. It's the usual stuff about Lyme's and long term antibiotics. Since it's now been promoted to a thread of its own I think it's ok to post my response here also:

"Joannemar

I think, with all due respect, that I probably know more about antibiotic therapy than you do; my lungs are colonised by a multi resistant hyper mutating strain of mucoid pseudomonas aeuruginosa. I have spent around thirty years taking antibiotics permanently, and around twenty five years before that on short term antibiotics.

Of course if I had not done so I would be dead, and I prefer being alive, but my condition and the clinical need for those long term antibiotics can be objectively proven. This is not the case for Lyme's disease. There are substantial risks attached to long term antibiotic therapy, including, for example, going deaf; doctors do not prescribe them unless there are proven greater benefits to outweigh those risks.

Pals have enough problems without adding to them..."

I have antibiotic induced hearing loss; I don't hear bird song, and I have to ask people to repeat things. I could wake up tomorrow totally deaf, which would be horrible but I could deal with it; better deaf than dead has been my motto.

But for Pals to lose the sounds of their loved ones' voices, or the music which has been their life's passion, with no benefit to it would be a tragedy, which is why this sort of snake oil has to be identified for what it is.
 

Joannemar

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Grateful you are clearly ignorant of all the emerging research on Lyme disease. No one knows the optimum period of treatment for everyone and quite clearly it has been shown to persist in mice, dogs and monkeys after short treatment lengths. There are abundant studies that show it persisted in humans after quite long courses of antibiotics.

I am sorry to hear you required such long antibiotic treatment and clearly it is required in various health conditions.

Do not try closing doors for other people they are quite intelligent enough to do their own research and discuss with their doctors.

It certainly helped my friend Eivind and Dr Martz is not the only person diagnosed with ALS who found it to be Lyme disease so clearly there are likely to be more.

As science emerges, constantly, turning IDSA theories around it is good for people to approach things with open minds.
 

HelenL

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There is an ezcellent book on this subject that I highly recommend : Inside the Lyme Epidemic, by Pam Weintraub... I did try some of the Lyme treatment (taking antibiotics then retesting with the Western Blot test) ... alas stillALS in my case.
 

Grateful

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Joannemar

I've responded at length on the Alternative Therapies thread but since you are partially duplicating your posts I will follow suit:

"I'm somewhat surprised by your statement that the forum is not the place to discuss Borrelia; after all, you were the person who introduced it in the first place. Why introduce it if you don't think it is appropriate?

As for your claim that doctors are fed information by the HPA, all I can say is that clearly you haven't a clue as to how doctors are trained, nor how their continuing professional education works. Doctors read medical journals like the BMJ and the Lancet, neither of which has anything to do with the HPA. Clinical trials are reported in medical journals, and there are no clinical trials showing that long term antibiotic therapy works better than short term therapy for Lyme's.

And really, attempting to lecture someone whose lungs are colonised with mucoid pseudomonas aeruginosa about how nasty bacterial infection can be is downright silly, just as suggesting that antibiotic resistance isn't connected to people taking antibiotics is downright silly.

You are touting for business on an ALS forum by claiming that Dr Martz was diagnosed with ALS. This is simply untrue; he has never provided any evidence that he was diagnosed with ALS. He could do so very easily by telling us the name of the neurologist who diagnosed him, but he has never done so.

Let's put it this way; if you can't convince someone who has spent thirty years on permanent antibiotic therapy that a year or two on antibiotics seems like a good idea then you really need to improve the quality of your arguments..."
 

lymewar

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Grateful, what is your problem? Dr Martz is a good friend. He was diagnozed at Mayo!

Do you believe he would lie about that? Are you in the pocket of IDSA or something? I noticed a great deal of moaning in here! you should rather appreciate information from Jo!
 

Barbie

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Wow, Joannemar and lymewar certainly are a couple of friendly posters...just from what I have read here I feel like they are trying to shove a lyme diagnosis and their "information" down everyone's throat.

We've all heard it before.
 

Grateful

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lymewar

Welcome to the forum, lymewar. You are aware, surely, that there is more than one Mayo?

If you run a search on the forum for Dr Martz you will see that his case has been discussed at length over the years, and the fact that he has never identified the neurologist he claims diagnosed him, coupled with the fact that his description of his symptoms seem extremely unusual for any kind of motor neuron disease, have led the people who are intimately familiar with this group of diseases to doubt that he ever had a motor neuron disease, much less ALS.

You do seem to be somewhat unobservant; my posts make it clear that I live in London, England, which explains why I have never heard of the IDSA. It's difficult to be bribed by something you don't know exists.

And I always appreciate information; I'm rather less keen on misinformation. Frankly, given your confidence in Dr Martz I am surprised to see that you have described yourself as suffering from ALS/MND; surely you should have been cured by now if Dr Martz's suggested therapies actually work?

There are a number of regular posters on this forum who have tried the Lyme's treatment; sadly, none of them has ever been cured nor have they experienced any improvements in their condition. They have in some cases spent quite a lot of money, and incurred the risks of antibiotic therapy, for no benefit. They are not moaning; they are simply being honest in the face of an appalling disease. It's a pity that not everybody is as honest as they are...
 

Grateful

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I've gone to Mod land but I entirely agree, Barbie...
 
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