Madison Area Lyme Support Group

A few weeks ago I visited a friend to admire her new house. She wasn’t as happy as I’d expected. She told me that a good friend of hers (46) was just diagnosed with ALS. ALS is considered a progressive and lethal disease, without a known cure for it.

Two months earlier, her friend had sudden deterioration of her memory, impairment of cognitive function and lost the use of the muscles in one arm. I’m not medically trained myself, but found this to be a peculiar combination of symptoms for ‘ALS’.

Some clinical tests for other illnesses were checked off, no blood work was done and she was basically sent home to write her will and say goodbye to her young child and husband. Memory loss and the sudden inability to think straight were not included in the diagnosis process.

My friend asked me for some sources about a potential link between Lyme and ALS. I’d like to share these sources with you as well in this current article, as a timely example how knowledge can somehow be ‘forgotten’.

Media coverage

There is a specific reason to write this article now. This week, on October 18, a highly disputed broadcast by Zembla International called ‘deceit or Borrelia‘ seems to be repeated on Dutch TV.

It attacked a specialized German lab, using the edited stories of Danish Lyme patients, who could not get help in their own country.

The patients did not give their consent for the broadcast, and when they realized where the broadcast was heading, they found that they were unable to withdraw their cooperation. This led to a ‘counter’ documentary of their own making, which you can see below.

Tabitha, the first lady who you can see in this documentary, was also told that she would live another six months at most and should say goodbye to her young daughter. Her diagnosis was also ALS.

She found that Lyme was likely the cause of her deterioration in health, got treated for it and stopped the progression of the ‘ALS’. She’s still alive now, although hardly after the damage the original documentary had done to her care plan.

Differential diagnosis

A differential diagnosis is what specialists call ‘detective work’. Clinicians look for symptomatic and laboratory clues, have hunches, order testing and perform exams, and then rule diagnoses in or out, especially when one or more illnesses have similar symptoms or even lab findings.

Part of that detective work is simply doing diagnostics by way of treatment. If a patient does not respond to a treatment for a specific disease, too bad, but then you can exclude it. But if they do, great news! Wouldn’t you think, in case of a lethal condition?

Allan Sheppard’ story, which was featured by the BBC, tells another tale. After the UK medical system NHS kept him in Intensive Care for two years with alleged ‘ALS’ and refusing his daughter to get a Lyme test from another specialized German lab, he is now improving while being treated for Lyme. Despite the UK government trying to stop her.

The story of Eivind Markhus is even more sinister. After he was told he would die from ALS, he had an American lab test his blood and found Lyme to be the real cause of his problems. He also improved after initial treatment and the progression of his ALS symptoms stopped.

Yet instead of spending 150,000 dollar on Lyme treatments, he spent that amount on legal cases, because his Norwegian government forbade him to get treated. He lost both the lawsuit and his life.

Recently, a male Dutch ALS patient (34, with three little children), who had been previously tested – with the standard unreliable serological test – for Lyme in a so-called (ALS) ’Expert Center’, had to learn from a chronic Lyme patient and a Lyme Literate US doctor how to improve the diagnostics.

By buying antibiotics online in New Zealand and taking them for a few days, his body started to produce antibodies for Lyme. So suddenly the test was positive in another (Lyme) ‘Expert Center’, where they apparently don’t know how to do this.

He is now crowdfunding to undergo an experimental treatment, which his insurance refuses to cover as it is not considered ‘evidence based’.

The story of Dr. Martz, who is featured in the award-winning documentary ‘Under Our Skin’ is the icing on the cake. He was told he would die of ALS as well, but found out by coincidence that he actually had Lyme and a co-infection, was treated for both of them and recovered so much he could give lectures in 2011.

Ice buckets

A relationship between ALS / MND and Lyme makes sense, looking at the findings of the 1990 research that was published in the article ‘Immunological Reactivity against in Borrelia burgdorferi in Patients with Motor Neuron Disease’ by Halperin et al.

This study showed that in almost 50% of the 19 people diagnosed with ALS, Lyme was the cause. Once treated, several of these patients improved. In that same year, 1990, the CDC published its first definition about Lyme and described the complex, systemic, multi-symptom and sometimes devastating chronic disease experienced by many Lyme patients – then and still today.

Did anyone ever do a follow-up on this promising research? No. It was simply hidden away and Halperin chose to become a co-author of the 2006 IDSA Lyme Guidelines instead, which maintain that ‘Lyme is a mild disease that is hard to get, easy to treat and hardly ever becomes a chronic condition’. Any possible connection with ALS or any other of the serious and previously acknowledged debilitating or even deadly conditions was no longer mentioned. Any long-term health issues are reasoned away, using semantics rather than ‘evidence based’ science.

These 2006 IDSA Lyme Guidelines have become worldwide policy, even though they were removed from the National Guidelines Clearinghouse and named as a case of bad ‘evidence based’ guidelines by the Institute of Medicine in 2011. To this day, both the CDC and WHO wholeheartedly support them, regardless of the hundreds of scientific publications that dispute them.

Today, 27 years after the Halperin study, people with ALS are routinely not (properly) tested nor treated for Lyme. Instead, friends and families are encouraged to empty ice buckets over each other’s heads to collect money for new research for a new cure for ALS.

The patient stories mentioned above will simply be discarded as ‘anecdotical’ by both mainstream scientists, doctors and policymakers. So will the fact that Lou Gehrig actually owned a house in Old Lyme, Connecticut.

Yet, if these stories are not shared anyway, the knowledge in them will be lost and so is hope for other people like Eivind, Allan, Tabitha, my friend’s friend and their children.

Choices of media channels such as the BBC or Zembla are decisive which knowledge is made available to the public. I asked the editors of Zembla to reconsider broadcasting it again, but have not yet received a reply.

An intellectual ice bucket

Most of these diagnoses are simply words on a form, which either best fit the symptoms or simply fit the codes of the insurances. Almost all of them are based on clinical diagnoses only and can mean a life-sentence to the patients.

Yet they need to prove with 100% certainty that Lyme is the actual cause? How can they do so, with blood tests that produce over 500 times more false negatives than the current HIV tests? Even the ‘experts’ now state that they should no longer be used. 

The intellectual ice-bucket is that one disease (causative agent) can show up as many different ‘disease images’, fooling doctors, patients, immune systems and statistics alike. Although it happened before in history, with Syphilis, many people seem to find this idea hard to grasp.

In this current article I only used ALS, which is considered a lethal and incurable disease to all afflicted, as an example to open up your imagination. Yet I could have also used any of the other 364 known potential misdiagnoses of Lyme as well.

Odds are about 100% that you personally know people who suffer from several of these illnesses, as the list includes MS, Parkinson, Alzheimer, ME, Fibromyalgia, ADHD and so on.

This is why I wrote my book for people like my friend, as it’s much easier for her to see the scope and possibilities than for the people like her friend, who are disabled and so frightened that will tend to believe their medical ‘death sentence’.

Is Lyme always the cause? Most likely not, as with anything in life, but without a 100% reliable test we will never know for sure in how many cases it is. Can it be? Of course it can, in the current climate of ‘lost knowledge’. Here are just a few more examples.

In 1988, the Canadian Department of Health reported several cases of congenital Lyme infection. In 2017: silence.

In 2012, the WHO stated in an instruction about blood donation (p.84) that Lyme Borrelia infection can “occur after the bite of a tick, mosquito or horsefly and can survive blood storage temperatures“.

Did you know? Does your doctor? Not if they don’t stumble upon it in their private lives, as retired MD Dr. Al Miller did. He recently discovered his daughter-in-law (43) was wrongly diagnosed with – again – ALS and that her health improved, after she was (properly) tested and treated for Lyme. Dr. Miller has become very vocal about it.

Change?

Using normal human, scientific or professional logic does not really help to understand the current bias against Lyme as a potential cause for many different illnesses. It simply does not fit the current model.

So change will not come from ‘above’. Throughout history, it never has, because ‘above’ has no interests in changing a status quo. Both the CDC and the WHO are political organizations.

The main insight you may need to fully understand why a severe and widespread disease – or rather pandemic – is so systematically ignored, downplayed or simply denied to exist in the first place, is to appreciate what it means that Lyme is called a ‘political disease’.

This quote might give you a hint: “a patient cured is a customer lost”. That is why a paradigm shift entails more than just ‘finding a cure for ALS’ (or those 364 other diseases) and emptying a next bucket of ice cubes; no matter how well-intended the gesture is.

References

Neurodegenerative and Fatiguing Illnesses, Infections and Mitochondrial Dysfunction: Use of Natural Supplements to Improve Mitochondrial Function. Garth L. Nicolson, Robert Settineri and Rita R. Ellithorpe. Functional Foods in Health and Disease 2014; 4(1):23-65 (page 23 of 65)

Lyme disease-induced polyradiculopathy mimicking amyotrophic lateral sclerosis. Burakgazi AZ1. Int J Neurosci. 2014 Nov;124(11):859-62. doi: 10.3109/00207454.2013.879582. Epub 2014 Feb 7.

Chronic or Late Lyme Neuroborreliosis: Analysis of Evidence Compared to Chronic or Late Neurosyphilis. Judith Miklossy. The Open Neurology Journal. 2012; 6: 146–157.

Dr. Richard Horowitz has a section in his second book ‘How Can I Get Better?‘ (page 282) where he says “Yet, if Lyme disease, co infections and environmental toxins are the sole causes of ALS, I would expect to see even more of these patients coming in with the disease.”

Huib Kraaijeveld

Author of ‘Shifting the Lyme Paradigm‘, chairman of the On Lyme Foundation and founding member of the Ad Hoc Committee for Health Equity in ICD

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**Comment**

Bravo Huib!

Dr. Miller:  https://madisonarealymesupportgroup.com/2017/05/11/dr-al-miller-lyme-disease-series/

https://madisonarealymesupportgroup.com/2017/10/13/dr-miller-a-new-perspective-on-lyme-disease/