British billionaire's family stricken

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
paulieinct
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British billionaire's family stricken

Post by paulieinct » Sat 3 Oct 2015 22:09

Misdiagnosed for years, British billionaire speaks out:

http://www.dailymail.co.uk/news/article ... amily.html

Could be a turning point.

Curious that the denialists have been quiet about this. Given that Caudwell's son has suffered from severe mental illness for years, you'd think that the denialists would be quick to label him a "Lyme loony", a phrase they enjoy throwing around................

duncan
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Re: British billionaire's family stricken

Post by duncan » Sun 4 Oct 2015 4:06

I suspect the denialists are weighing the options. It's arguably not a good spot they are in right now.

This gentleman has a huge amount of cash at his disposal, and it's not just he who has Lyme; it's his family. He may make a fight out of this, and he seems to have the grit and incentive and assets to do so.

If the denialists screw this one up, the whole world may be incentivized to watch thanks to a huge and capable PR campaign generated by an angry - and "1%" wealthy - patient.

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ChronicLyme19
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Location: NY, USA

Re: British billionaire's family stricken

Post by ChronicLyme19 » Sun 4 Oct 2015 23:12

One of his recent Facebook posts:
https://www.facebook.com/johndcaudwell/ ... 37?fref=nf
#‎lyme‬

I have said this before but I am constantly amazed by how caring for others you Lyme community are! It's as if Lyme puts an increased sense of humanitarianism into people.
I do manage my own page because I want to grow knowledge and I do try to read most of your messages!
I am constantly learning and simultaneously trying to work out how to help.
I am sorry that I can't reply- I would love to but there are endless tragic stories
I am also so sorry that at the moment I can't help individuals even though my heart bleeds for you.
What I can do Immediately is raise awareness and hopefully this will gain the attention of the politicians and the health service.
I am so delighted that this awareness has helped so many of you already whilst of course recognising that the help is barely the tip of the iceberg in terms of what is required.
The next stage is to try and pursuade the authorities to take this a lot more seriously.

I need to hire a chief executive to lead this fight with me and to put together a charity with the aim of curing Lyme disease sufferers!

Many of you renowned doctors have offered to help and for that I am very greatful and I will be in touch
For the moment I have a trusted doctor and team but also my son is confined to bed and can't travel.
I am sure we will get together as my fight gains momentum!
I will tackle this problem and make a difference but the only way to make the huge difference that I would like to is to change the attitude in the ‪#‎NHS‬
For the moment most of my time goes on trying to heal my sick family especially my long suffering son!

Finally I have many charitable causes but Lyme will be one of my main ones until it is properly recognised and treated!

Thank you all for your very kind support
Half of what you are taught is incorrect, but which half? What if there's another half missing?

Martian
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Location: Friesland, the Netherlands

Re: British billionaire's family stricken

Post by Martian » Mon 7 Dec 2015 18:24

I had paid little attention to posts about the British billionaire John Caudwell who is raising awareness about Lyme disease lately. But I encountered some posts about him elsewhere and then decided to read some articles and posts about him in the past few days.

Note that hv808ct also started a topic about him here: The Donald Trump of Infectious Diseases?

Here's another article: http://www.telegraph.co.uk/news/celebri ... sease.html
Phones4U billionaire John Caudwell 'devastated' after whole family diagnosed with Lyme disease

Self-made billionaire John Caudwell speaks about the disease which has affected him, his ex-wife and three of his children


By Sophie Jamieson

8:53AM BST 22 Sep 2015

The billionaire founder of Phones4U has revealed that his whole family have been struck down by the potentially deadly Lyme disease.

Earlier this month John Caudwell told the Telegraph of his 20-year-old son Rufus’s long struggle with the disease, which started with “panic attacks, serious agoraphobia and a terror of sickness” before being correctly diagnosed in February.

Now Mr Caudwell has admitted that he, his former wife, Kate McFarlane, and their two daughters, Rebekah, 35, and Rhiannon, 27, have all tested positive for Lyme disease as well.
Some things in his story struck me, the first being that allegedly John Caudwell, his ex-wife and three children all have Lyme disease. That's quite unlikely, but not impossible. Maybe there is a good bases for the diagnoses, but what I noticed is that 5 family members were tested and all tested positive, and it seems a lot of weight was given to this, as if it was enough to establish the diagnoses. It isn't as simple as that, and "tested positive" is also way too vague. What kind of test(s), IgM and or IgG, what bands in case of blots, etc., it makes a world of difference and it should be used in combination with other evidence.

Next thing is that Caudwell now believes the disease could be congenital or transmitted person to person, and therefore he thinks it could be affecting millions in Britain, it could be an epidemic. In one article it is stated that he is almost certain that his family were not all bitten by ticks. However, I think that's less unlikely than the assumptions he is jumping to.

I am very curious what Lyme experts Caudwell and his family have been seeing and speaking with, where their blood was tested and with what kind of tests, and what treatments they're receiving. It would not surprise me if these are "experts" that are associated with the ILADS.

Martian
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Re: British billionaire's family stricken

Post by Martian » Mon 7 Dec 2015 23:36

Source: http://www.independent.co.uk/news/peopl ... 72826.html
But Mr Caudwell insisted that one American Lyme disease specialist has stated that “he’s never had a single patient with Alzheimer’s, Parkinson’s or multiple sclerosis who didn’t test positive for the Borrelia bacterium.”
I think that statement was coming from Klinghardt and can be found in the documentary film "Under Our Skin". See the following quote:

Source: http://articles.mercola.com/sites/artic ... ntary.aspx
Under Our Skin: The Untold Story of Lyme Disease

October 13, 2012

By Dr. Mercola

(...)

Dr. Klinghardt stated in one of our interviews that he's never had a single patient with Alzheimer's, ALS, Parkinson's disease or multiple sclerosis who tested negative for Borrelia. Those are all diseases with no known cause. Could Lyme disease be the missing link? And if it is, why hasn't there been a stampede of researchers in pursuit of the truth?
Of course there are no publications in PubMed about this, so these statements can't be checked, we just have to take Klinghardt's word for it, even though it is quite implausible that all those patients were seropositive for Borrelia.

The questionable information from Klinghardt has been discussed on this board quite a lot:
http://www.lymeneteurope.org/forum/sear ... ardt&ch=-1

Bottom line: Klinghardt is not a reliable source of information about Lyme disease. Mr Caudwell should better check his sources.

Martian
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Location: Friesland, the Netherlands

Re: British billionaire's family stricken

Post by Martian » Tue 8 Dec 2015 1:49

Source: http://lymediseaseuk.com/2015/11/18/aon ... onference/
AONM Lifting the Veil 2 Conference

On Sunday 15th November 2015, a conference was hosted by The Academy of Nutritional Medicine (AONM) in London featuring some of the best brains in the Lyme disease community.
On that page is a photo of the conference on which can see Mr Caudwell on the table together with Schwarzbach, Klinghardt and others. I already mentioned the dubious Klinghardt in my previous post.

Then the other dubious guy, Mr Schwarzbach. He used to work with Carsten Nicolaus at their Borreliose Centrum Augsburg (BCA) and it's BCA-clinic in Germany. Later they founded InfectoLab, which is now known as BCA-lab and run by Carsten Nicolaus, while Armin Schwarzbach set up his own lab with the name ArminLabs. Or something like that, it's hard to keep up with them. They offer several dubious treatments and they are very expensive, costing patients thousands of Euros/Dollars. For testing on Lyme they often use the ELISpot. They have built up a name in Europe and beyond in the past few years. They are seen as experts and because of that they see a lot of patients, not just from Germany, but also many from outside Germany.

For further info about these ILADS-associates see:
I think these are the type of "experts" Mr Caudwell and family are getting their information from, and perhaps even their diagnoses and treatments. And so are many more. But who cares?

Enough time wasted here in Lymeland, I am off to doing useful things again.

Martian
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Re: British billionaire's family stricken

Post by Martian » Mon 14 Dec 2015 1:44

It's getting curiouser and curiouser...

Source: http://www.dailymail.co.uk/news/article ... ticks.html
Can billionaire John Caudwell's bombshell theory be right? Phone tycoon reveals ELEVEN of his family now have crippling Lyme disease and he believes it's passed on by other people NOT ticks

  • Lyme disease can devastate vital organs, the brain and the immune system
  • John Caudwell says it is 'one of the most dangerous illnesses to mankind'
  • Two of his former partners and four of his children have been diagnosed
  • He believes it isn't only passed by ticks, but also during pregnancy or sex

By Sarah Oliver For The Mail On Sunday

Published: 23:46 GMT, 12 December 2015 | Updated: 09:22 GMT, 13 December 2015

From his bedroom on the third floor of a Mayfair mansion, Rufus Caudwell has a view of some of most expensive real estate in London. The son of a billionaire, it could be his playground. Instead, the four walls which surround him are his prison.

Just 20, he cuts an exhausted, shambolic figure in tartan pyjama bottoms and a sleep-creased T-shirt.

Around him are the tell-tale signs of an invalid’s life. Salt and pepper pots by his bedside suggest meals taken propped up on pillows, there are medicines and natural remedies, wipes and handwash nearby. An Xbox console within easy reach of the bed looks like it gets more use than the guitars stacked in the corner.

On the mantelpiece a few Get Well Soon cards stand open. But getting better soon is a forlorn prospect because Rufus, oldest son of Phones4U tycoon John Caudwell, has been sick for half of his life.

He was diagnosed in February with the little-known Lyme disease which, left untreated, can seriously damage the immune and nervous systems, the brain and vital organs.

At its most dangerous it can cause heart failure, inflammatory arthritis, inflammation of the membrane surrounding the brain and spinal cord, numbness, paralysis, memory loss, depression and anxiety.

Two months ago John Caudwell revealed that he, his ex-wife Kate McFarlane, 59, and Rufus’s two sisters Rebekah, 36, and Libby, 26, had also tested positive for the disease.

Today he tells The Mail on Sunday another six members of his family and their immediate circle, including Libby’s yacht-broker boyfriend Simon Morgan, 28, Caudwell’s former partner of 15 years Claire Johnson and their son Jacobi, at 11 the youngest victim, have received the same diagnosis, bringing the tally of sufferers to an incredible 11 people.
Caudwell says: ‘I am crystal clear this is one of the most dangerous illness to mankind today. Lyme disease is damaging hundreds of thousands of lives.

‘It is a public health scandal, a travesty, a tragedy that people are being left to suffer. The negligence at the top of the Health Service and in the Government is almost starting to border on the criminal and actionable.’

Behind this accusation are two beliefs which both fly in the face of medical orthodoxy about Lyme disease as recognised by Public Health England (PHE).

First, PHE says it can only be caught from a bite by an infected tick, whereas Caudwell is convinced it can be transmitted to a baby during pregnancy, or an adult by sexual contact, and lie dormant inside a body for years before attacking.

Second, PHE says it has no connection to any other conditions – Caudwell is certain there is a link to some of man’s most feared conditions including multiple sclerosis, Alzheimer’s and myalgic encephalopathy (ME, or chronic fatigue syndrome).
Incredible indeed.

Thus, when his ex-wife, their daughters, Claire and Jacobi, and others connected to them, displayed symptoms which can point to Lyme disease – including gut trouble, inflamed joints, fatigue, short-term memory loss and depression – he moved swiftly to get them tested.

Caudwell points out that the blood tests currently available through the NHS for Lyme disease can return a false negative. PHE counters that this is true of many infectious diseases. Nonetheless, the tycoon has entrusted his family and friends to the private Armin Schwarzbach clinic in Augsburg, south Germany which tests for a wider range of bacteria than just the Borrelia burgdorferi on which the NHS makes its diagnosis.

These tests are not supported by PHE which says their value has not been verified. Caudwell begs to differ, saying they give a clearer and more complete picture of the scale of the problem.

‘The official figures for the number of people suffering are colossally suspect and colossally subdued,’ he claims. ‘My evidence is anecdotal, surely it’s down to the Government to be authoritative.’
This confirms my suspicion that the Caudwell family is seeing Armin Schwarzbach. See my previous post.

I wonder if Caudwell realises that tests can also return a false positive.

Henry
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Joined: Thu 10 Nov 2011 18:49

Re: British billionaire's family stricken

Post by Henry » Mon 14 Dec 2015 14:40

I'm sure all would agree that it is very important for the media to present accurate and reliable information when it come to Lyme disease or anything else for that matter as this piece indicates: http://www.aldf.com/wp-content/uploads/ ... aft-10.pdf .

Lorima
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Joined: Mon 29 Oct 2007 20:47

Re: British billionaire's family stricken

Post by Lorima » Mon 14 Dec 2015 19:50

The trouble is, little accurate or reliable information about LD is available in community or academic medicine, as regards diagnosis and treatment. We know that the current tests, treatments, and diagnostic algorithms asserted by the dominant medical experts are inaccurate and unreliable, but because they keep claiming they are accurate, clinical research stalled 25 years ago, with the rationale that since it ain't broke, don't fix it. The ALDF is the worst offender (though Yale, MGH, and Valhalla run close behind).

Well-informed patients and treating physicians are left with no choice but to improvise. Not a good situation, but better than the alternative (going misdiagnosed and mistreated).
"I have to understand the world, you see."
Richard Feynman

Henry
Posts: 1108
Joined: Thu 10 Nov 2011 18:49

Re: British billionaire's family stricken

Post by Henry » Mon 14 Dec 2015 20:15

I see. What about the FDA and CDC? Also, what about IGenex? How do YOU improvise and diagnose Lyme disease?

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