John Caudwell

[justy]

"1.2.2.7 Serological testing should not be carried out unless the history is indicative of an infection. Depending on the history, tests for the following infections may be appropriate:

chronic bacterial infections, such as borreliosis

chronic viral infections, such as HIV or hepatitis B or C

acute viral infections, such as infectious mononucleosis (use heterophile antibody tests)

latent infections, such as toxoplasmosis, Epstein–Barr virus or cytomegalovirus."

http://www.nice.org.uk/guidance/cg53/chapter/1-recommendations#diagnosis

Thanks for looking this up - what does this mean in practice

Depending on the history, tests for the following infections may be appropriate

who here has had a full and thorough history taken by an NHS GP? This is how it worked for me: I said some symptoms, they did some bog standard blood work, nothing shows up, they send me to an endocrinologist who asks me to name my one main symptom, but doesn't take a full history. They do bog standard endo tests, nothing shows up. I go back to GP they say I have depression as there is nothing wrong with me and offer anti depressants.

I go back to the GP with new symptoms. They don't tie them in to the original ones and don't want a long litany from me so send me to see a rheumy...and so it goes on. No proper diagnosis, no history taking. Do GP's even know HOW to take a history?

 

[ukxmrv]

No proper diagnosis, no history taking. Do GP's even know HOW to take a history?

I've had several thorough physical examinations and most of the tests listed (including the NHS Lyme one).

Other people haven't been as lucky . I've read reports of people with suspected CFS having some blood tests with their GP and then being sent to the new "CFS" clinics and then diagnosed by a nurse after no physical examination or a thorough history being taken (along the lines of the ones I have had anyway).

 

[Antares in NYC]

Wow, very impressive. Tons of citations.

I have noticed a really unpleasant pattern in the media -at least here in the States- every time a major news report on Lyme appears in a major media outlet. Allow me to explain:

The next day the report is published or broadcast, someone claiming to be a doctor with alleged expertise in Lyme posts a letter to the editor (which is promptly published) dismissing the existence of Lyme, claiming the patients suffer psychological problems, and then spouting the very demonstrably false IDSA claims, anchored in early 1990s science.

That letter to The Times by that "Lyme expert" is a clear example of this pattern. When Avril Lavigne came out all over the US media telling her harrowing experience battling Lyme (a story unfortunately very familiar to us), we had none other than Dr. Auwaeter going on Dr. Phil and other TV shows to repeat the IDSA mantra.

One of the most despicable cases of this "media war' was the reply to Yolanda Foster's testimonial on her battle with Lyme by The Daily Beast (a popular American online news outlet). Here you had an alleged doctor using a pseudonym (claiming that he feared backlash) openly insulting Yolanda and Lyme patients. You can read the despicable screed here, but it will raise your blood pressure, beware:

Real Housewife, Fake Disease
‘Chronic Lyme disease’ is a controversial diagnosis with no scientific backing, no matter how much celebrity attention it gets.

http://www.thedailybeast.com/articles/2015/01/21/real-housewife-fake-disease.html

I wonder who that nice New England doctor really is...

I think it's clear there's a consistent pattern of carefully orchestrated media responses to deny the existence of persistent Lyme every single time a celebrity comes out. I don't think we should be surprised by this. I would like you to remember some of the many emails -obtained through an official Freedom of Information request- where members of IDSA, NIH and the CDC discussed an "open media war" on those pesky "Lymies." Here's a few samples:

Email from Durland Fish (IDSA) to Barbara J. Johnson (CDC):

“This battle cannot be won on a scientific front. We need to mount a socio-political offensive, but we are outnumbered and outgunned. We need reinforcements from outside out field.”
source

Funny thing: in the reply to that email by Phillip Baker, he actually acknowledges the existence of persistent Lyme that can be treated with long term doses of antibiotics. They acknowledge chronic Lyme in private, but orchestrate a "media war" to deny its existence in public. Why?

Email from Edward McSweegan (NIH) to Paul Mead (CDC):

“And what we have here is a war. Actually, a disinformation war. An insurgency against evidence-based medicine. It’s time to start shooting back.”

source

Nice way to treat the taxpayers, particularly people plagued by a terrible illness that need their help, not their contempt or a "socio-political media war."

So now, when you see those offensive letters to the editor from obscure doctors claiming Lyme expertise, you know it's part of a clearly orchestrated disinformation strategy.

 

[Antares in NYC]

Furthermore, Edward McSweegan has been known to troll Lyme websites and social media outlets to discredit research that does not fit the CDC/IDSA mantra: http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=125768;p=0

He also kept a "hit list" of Lyme activists online, but took it down when he was caught: http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/8/1190?

Your tax dollars at work, folks. Instead of focusing on containing this epidemic or taking care of the very ill people affected by the disease, their number one priority is an open media war on patients and advocates. This is crazy!

Why is this not a scandal all over the media?

 

[duncan]

McSweegan apparently is active, although I do not know that for sure. I THINK I have had exchanges with him while he has been under an alias, but I don't know that for sure, either. At least, I cannot prove it.

However, I don't think that poor guy on Lymenet was McSweegan. I have literally spoken with that guy, and he ain't McSweegan, unless McSweegan can manipulate ANI.

But the unscrupolous manipulation of the press IS ongoing, and it is frightening.

 

[Antares in NYC]

But the unscrupolous manipulation of the press IS ongoing, and it is frightening.

...and it works like clockwork!

Look for a major article or report on Lyme, see the official letter to the editor from some obscure or anonymous doctor the next day, claiming Lyme is no worse than a bad cold. Like clockwork.

 

[msf]

Hey all you Lyme debate fans, did you see that part 2 of Cort´s summary of the recent Simmaron meeting is going to be about Dr. Konstance Knox´s (very appropriate name in the circumstances) findings on TBI in ME patients? Of course, her finding might be that there aren´t any, but hopefully Cort isn´t that much of a tease...

 

[digital dog]

Mail Online TOP NEWS!!!!

 

[ukxmrv]

http://www.dailymail.co.uk/news/article-3258353/Secret-epidemic-s-devastated-family.html

I don't know if it made the print edition (housebound right now)

 

[maryb]

My ex-husband just phoned to tell me about this. The first comment says,

'Its already been in the news before why do we have to read about it again'

this sadly sums up some of the public's attitude to other people's suffering with diseases etc. I'm alright, this is boring.

I tried to reply but the mail page keeps logging me out, haven't got the mental stamina to keep trying. Anyone else do it please, in a nice as way as possible, to the fkg selfish person totally lacking in any compassion or care for the suffering of others.....

 

[justy]

John Caudwell has just announced on FB that a further 4 members of his family have tested positive - that's 9/9!

 

[gregh286]

John Caudwell has just announced on FB that a further 4 members of his family have tested positive - that's 9/9!

Total nonsense. I only seen one person negative.in armin tests. Seems to produce a 95%+ positive test. Nearly all the population walking about with active lyme infection? Be like a scene from the walking dead.

 

[Sidereal]

Total nonsense. I only seen one person negative.in armin tests. Seems to produce a 95%+ positive test. Nearly all the population walking about with active lyme infection? Be like a scene from the walking dead.

It would be an interesting experiment to send, say, 100 samples from perfectly healthy people to this lab and see how many positives come back. The fact that everyone in his family is testing positive makes it less likely that any of them actually have Lyme disease, not more. In any case, even disregarding the other family members' likely false positives, nothing about his son's case (as presented in the newspapers and in the TV interview linked to earlier) points specifically to Lyme disease and everything suggests a fairly typical (albeit very severe) childhood onset anxiety disorder. I'm afraid this looks like a case of a wealthy person being unable to accept that his son has a psychiatric condition & doing a lot of damage in the process with this media blitz by sending patients with unclear diagnoses & no mainstream treatment down the wrong path of alternative medicine bogus explanations & false hope.

 

[gregh286]

I emailed caudwell to send 10 healthy subjects to armin for lyme.
Then you would see whats what

 

[Sidereal]

He certainly has the money to do a nice blinded study on the topic. If he is actually interested in the truth instead of pseudo-explanations, that is.

 

[wdb]

John Caudwell has just announced on FB that a further 4 members of his family have tested positive - that's 9/9!

9 out of 9 seems spectacularly improbable on the face of it, what possible explanations could there be ?

If they all lived together on a deer farm or something that could explain it but I understand they don't live together.

Did they all travel together to a lyme hotspot ?

Is the prevalence much much higher than believed, though even if you take a crazy high rate like 1 in 10 that would still be a 1 in a billion probability of 9/9 ?

Is it contagious or genetic, presumably pure speculation at this point ?

Is the lab producing false positives ?

Did a lyme doctor want a 9x bigger slice of money from the billionaire ?

 

[duncan]

Entire families being infected happens. Look at Pam Weintraub.

Nine out of nine does seem to buck the odds, but we don't know the prevalence story of where these nine were, and what time frames were involved - and even if we did, Borrelia prevalence stats are pretty much a joke. There is just too much data to which we are not privy.

I am also not clear on the testing mechanisms. If I remember correctly, Weintraub's family tested negative, one at a time, until, one by one, their antibodies were provoked and they all tested positive - even by the onerous standards of the 2T. I am unclear how these nine positives were determined.

 

[digital dog]

There are autoimmune illnesses in his family. I wonder if they have cfs and thyroid problems. Hashimotos can cause psychotic episodes when the thyroid is spluttering. Also if he was put on drugs in the past then he could be going through withdrawal which can be extremely inconsistent.
They could all have lyme too but I think the problem gets deeper.

 

[natasa778]

...nothing about his son's case (as presented in the newspapers and in the TV interview linked to earlier) points specifically to Lyme disease and everything suggests a fairly typical (albeit very severe) childhood onset anxiety disorder. I'm afraid this looks like a case of a wealthy person being unable to accept that his son has a psychiatric condition & doing a lot of damage in the process with this media blitz by sending patients with unclear diagnoses & no mainstream treatment down the wrong path of alternative medicine bogus explanations & false hope.

What you say is no different from someone saying that you yourself are simply unable to accept that you have a psychiatric condition, since all your symptoms of alleged ME simply suggest a fairly typical (albeit very severe) false illness belief. You are doing lots of damage by sending other psych patients with false illness beliefs down the road of aternative medicine and away from proper psychiatric CBT treatments and much needed exercise

 

[Sidereal]

What you say is no different from someone saying that you yourself are simply unable to accept that you have a psychiatric condition, since all your symptoms of alleged ME simply suggest a fairly typical (albeit very severe) false illness belief. You are doing lots of damage by sending other psych patients with false illness beliefs down the road of aternative medicine and away from proper psychiatric CBT treatments and much needed exercise

I have to disagree with you there, @natasa778. These situations are not analogous. ME is a recognised clinical syndrome of unknown aetiology. There is no evidence that ME symptoms are caused by false illness beliefs, that's just a hypothesis favoured by some researchers in the field. The true cause of ME is unknown. On the other hand, this man is saying that his son has recognised psychiatric conditions such as anxiety and depression but is choosing to attribute them to a putative Borrelia infection for which he has no evidence except an alternative medicine lab which seems to produce a positive result in almost everyone who sends them their blood sample (and money). He is asserting something for which he has no evidence.