The Donald Trump of Infectious Diseases?

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
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The Donald Trump of Infectious Diseases?

Post by hv808ct » Sat 3 Oct 2015 17:34

“Most serious undiagnosed health threat in existence.” John Caudwell.

Really? A common bacterial infection that is responsive to common antibiotics, is non-fatal, non-communicable, and seasonally- and geographically-restricted? Apparently, he’s never heard of avian influenza, TB, malaria, AIDS, hepatitis C or bacterial meningitis (as in the African Meningitis Belt), to name but a few examples.

Many people think that if they had tons of money in the bank, their problems would be solved. However, UK billionaire John Caudwell has found that not to be the case. His son has suffered serious psychiatric issues for years that only recently have been connected to Lyme disease. And it turns out that John Caudwell himself and many other members of his family have been found to have Lyme disease as well. He argues that if an entire family can be infected, the disease must be both sexually transmitted and passed from mother to child in utero, and — furthermore — that it could be the root cause of multiple other illnesses including ME, Alzheimer’s and multiple sclerosis.

I think this is yet another reminder that one can have a lot of money and still remain profoundly ignorant of many things, which is to be expected. You can’t know everything about everything. And that’s why it’s important to employ common sense and seek out professionals who do known things that you do not. Apparently, Mr. Caudwell has decided to forgo these important steps. I’m sure we’ll eventually discover the name of some “Lyme literate” quack taking care of Mr. Caudwell’s kids, and maybe even the name Igenex will appear in Mr. Caudwell’s narrative.

Mr. Caudwell’s adventures in Lymeland are just a billion dollar reminder of why we continue to hear so much nonsense—online, at least—about LD and chronic LD: rich, white people care about it.

As proof, one need only scroll through the photos of the last Lyme gala in Greenwhich, CT ( ... 435687.php)

Or read the article about LD at Slate.Com:

Dec. 9, 2014
There’s one inescapable reason why the chronic Lyme controversy won’t go away: Rich people care about it. One of the biggest “risk factors” for chronic Lyme disease is wealth. Indeed, some infectious disease specialists jokingly refer to chronic Lyme as a “disease of affluence.” That’s partly because diagnosed, medically substantiated Lyme disease is also a disease of affluence. Deer ticks are common in rich suburban areas, like those around New York City. Demographic information from medical studies shows that patients suffering from Lyme disease, as well as those who think they have chronic Lyme, earn far above the national average. Patients in a 2012 study of chronic Lyme had a mean income of nearly $140,000. In a 2014 chronic Lyme study, 28 percent of participants had household incomes above $100,000, which is nearly twice the U.S. median.

Or even read through the stats collected by Aucott in Maryland:

Aucott JN, Rebman AW, Crowder LA, Kortte KB. Post-treatment Lyme disease syndrome symptomatology and the impact on life functioning: is there something here? Quality of Life Research. 2013;22(1):75-84. doi:10.1007/s11136-012-0126-6.

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Re: The Donald Trump of Infectious Diseases?

Post by X-member » Sat 3 Oct 2015 18:51

Now I'm very curious about which income you have, hv808ct.

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Re: The Donald Trump of Infectious Diseases?

Post by Martian » Tue 8 Dec 2015 14:57

hv808ct wrote:Many people think that if they had tons of money in the bank, their problems would be solved. However, UK billionaire John Caudwell has found that not to be the case. His son has suffered serious psychiatric issues for years that only recently have been connected to Lyme disease. And it turns out that John Caudwell himself and many other members of his family have been found to have Lyme disease as well. He argues that if an entire family can be infected, the disease must be both sexually transmitted and passed from mother to child in utero, and — furthermore — that it could be the root cause of multiple other illnesses including ME, Alzheimer’s and multiple sclerosis.
That quote can be found here: ... existence/

It's a post about a recent appearance of John Caudwell on the British program ITV This Morning:
John Caudwell on Lyme Disease

Published on 29 sep. 2015

John Caudwell talks on ITV's This Morning about his family's horrendous experience with Lyme disease, and how he plans to improve awareness, testing and treatment.
From time 3:00 in the video John Caudwell is mentioning Klinghardt:
Dr Klinghardt, who's a long established clinician in this field, said that he had never had a single patient who suffered from Alzheimer's, ALS, Parkinson's disease or MS who tested negative for the Borrelia, one of the co-infections of Lyme disease. Never, one!
So that confirms what I wrote in this LNE topic: Re: British billionaire's family stricken.

John Caudwell seems like a nice guy, who genuinely wants to help, but unfortunately he is following false prophets. Due to this he may do more harm than good by spreading questionable information. Hopefully he will soon learn this.

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Re: The Donald Trump of Infectious Diseases?

Post by Starfoxsixty4 » Sun 10 Jan 2016 21:17

Hey there. I don't know who you are, but I wanted to reach out, to just give you an alternative perspective on Lyme stuff. I'm sorry this is long, and I also emailed it personally to you, but I just had to write it.

I'm Chris, I'm 33 and I live in New York. I am a musician, an artist, a science lover and thinker. I'm secular (in fact, almost anti-theist) and I have no patience for pseudo science, conspiracy theories, and the like. I've lived in many places, including LA, Virginia, NY, and Salt Lake City and have developed a keen eye for socially-inspired, superstitious philosophies of different groups.

I was a hard worker. I had perfect SATs and perfect grades. I studied commercial music and jazz piano in college, went on to be signed to a label in LA, and eventually toured the world (I had a mini hit in Japan). As the indie/alt rock industry started to change, I was in advertising in NY and was finally making adult money...for literally one year of my life, I made over 28,000 in a year. For the first time. Before that, I was always working one crappy side job or another while working hours a day writing music. I've written thousands of songs, its my life, my art and love. I was always broke as hell. Because I got lucky and someone at a famous ad agency in NY loved my band and hired me, after two years of pitching ad music I finally won some huge campaigns and made an average-to-low income for the first time, but to me, I was living like a king. I could afford new microphones and a decent Korg keyboard.

I'm just setting up my personality. I'm obsessed with naturalism, objective reality. I was in doubt about lyme for months when I first had nervous system issues and never ending flu symptoms. I too thought I was living in a world where such diseases were impossible, and it was more likely that rednecks were being hypochondriacs. I hate superstition. I thought my way out of christianity as a 12 year old. I was brought up to never call in sick, I'm the kind of guy that would just pop a sudafed and drag in to school or work if I had a cold.

OK, without boring you on my hellish journey through lyme disease the last two years, I want to paint you my current situation. I can fill you in on all the details if you need them, but for the sake of this message, I ask you to believe that I'm competent, intellectual, open-minded..... and I believe strongly that I am infected with lyme disease. I can fill you in on the details if you need, but I just want to paint you a picture of my current situation. And remember, two years ago: living my dream, finally successful after a decade of struggle as a musician, and zero health issues. ZERO. I ran daily, I worked out and loved it.

Here's my life now: I wake up in the morning with a feeling of a hangover (no drinking anymore, of course). I wonder if its 3 AM, nope, 8:30. I wonder how I'm going to make it through today. My wrists and ankles twitch in protest (charlie-horse-like muscle spasms). My neck, just above the site of the tick bite two years back, feels strange, tight and painful... there's been a new sensation of squirming happening too (please, you may be calling my competence into question this very moment, again, just assume you can trust me like a good friend. We probably would be if we knew each other. I'm describing this as straightforward and real as possible). I stand up, dizzy, steady myself. My vision swims - this dizziness and visual strangeness continues through the day, although it lessens after an hour or two of being awake.

My ears are making high pitched noises. Sometimes, my left ear makes an even lower pitched sound, sometimes my right. But always, the high pitched whine is there. I'm starting to not notice it anymore, but when I listen, its there (again, youre thinking, like many docs Ive seen, well this guys a musician..... remember, I've asked, for the sake of this message, just trust me. Its not an effect from loud music. I know my ears intimately as a mixing engineer and producer, I've always been obsessed with ear plugs - I buy them in bulk. I got frequent hearing tests and had perfect hearing, and all these symptoms showed up at the same time as my many many other neuro and flu-like lyme symptoms. OK, ok, I'm going to stop justifying every possible symptom and just assume you can believe me from here on out.)

The pain is in my tummy, and throbbing in my head. I don't really notice the headaches anymore. I try to get going, after some coffee and meditation and reading for two hours I finally feel like I'll be able to drag myself into work. I teach music in queens. I take the antibiotics and supplements that I have no idea if they're even working. Keep in mind, however, when Ive given up the antibiotics in protest, weeks later I cant even move or get out of bed..... clearly there is a pathogenic element to this. And it feels like a disease. A person knows when he is sick - again, just gotta trust me here. Or, ask my girlfriend/partner - she could probably convince you better.

I am tired all the time. Not tired, like depressed or fed up, it feels like a flu and a hangover and like someone beat me over the head with a frying pan. Its hard to focus and finish things.

My singing voice, my life, my bread and butter, has all but disappeared. Its a very neurological thing, to sing. Its very hard to summon the energy to sing, and even then I sound different. Seeing an ex girlfriend lately, she ran up and embraced me, and then frowned, looked sad, and said.... "you sound different, your voice is different." My playing and songs have become slower. My gait has become different, I struggle to keep balanced.

Speaking of my mother and father, because lyme is such a controversial disease, everyone just assumes I'm full of crap. Do you have any idea how nightmarish that is? Think about it. Think about being held down in every aspect of life by this obviously pathogenic weight, and not even getting credit for it. Think about the daily struggle to go to work and still barely being able to afford medicine or my bills. My only saving grace is my girlfriend, who believes me 100% - shes been through angioma, a brain condition which causes seizures - for years before the seizures started, she had a scary feeling, and everyone just thought she was full of it - until, of course, she was writhing around unconscious on the floor. She got a simple brain surgery procedure and its fixed now..... but I think its why she didn't judge me when everyone else, even old friends and family, did. We started a relationship, and now she's seen every aspect of this disease. I woke up this morning to her in tears... she said I was twitching and writhing in my sleep. I have intense dreams, unlike any I've ever had - they are full color, visceral, nightmarish and they are full narratives - they go on and on with consistent characters, its nuts. About every night. I didn't dream often after being 12 years old.... now its every night. I've lost significant bladder control, libido is all overt the place (some weeks I'm over horny and some weeks I'm an asexual little frog). Cold and heat treat me like a 90 year old man. I shiver uncontrollably in brisk conditions. I have strange bumps and red lines (a symptom of bartonella..... very well documented) appear on my back. I have strange red bumps on my ankles. Small cuts don't seem to heal very well. Two years ago, a cut was healed over in like a day. I felt like Wolverine from X-Men..... I often bragged about my super healing ability.

Read the history of AIDs, dude. People aren't good with disease, especially when its hard to see on the outside. Especially when its the outsiders getting it. You said its a rich persons disease, I just wanted to give you the truth of my situation. I'm broke and scared. I don't know what to do. I don't recognize this world, where it seems like people would rather hold it against victims than help them, in line with whatever their bias is. I want to propose a bias to you - we've been sold a new religion - that we're living in the future, in an age where these kinds of infections are a thing of the past. We're being sold that times are better than ever, that we've finally 'made it'. I want to remind you that these are the times in human history when things truly go to hell in a hand basket. Evolution and nature is ever-vigilant. Vector borne disease has been a surprise every time.... humans realize it after its too late. Vector borne disease is a big deal. I'm telling you, through years of science research and learning, through years of thinking, philosophy, and books on disease history..... nature finds a way. It has a unique opportunity right now. It suppresses the immune system, and stays clinging on in the blood of humans - a population, by the way, which has superseded any vertebrate species in the history of the world. A population which interbreeds and intermingles with each other globally, on a scale never before seen. We support more species of life than any other animal has, ever. This is a unique, novel situation.

I hate psudeo science, and many of the lymies really get to me with their BS remedies, rife machines, snakes oils, nonsense. As far as I'm concerned this is a textbook example of bias on both sides. But I've seen teenage girls in wheelchairs, wise older men losing wives. These aren't the kind of people that have any motivation to fake or exaggerate. I HATE telling people I'm sick. I had two bosses begging me not to leave. I was their most promising new writer, this was everything I worked for my whole life. I lost my two bands in NY who were almost done with new records. I am nothing but an unbridled passion for success, music, and science. I've lost everything. Why? What has whining about being sick got me? I'm broke and my own family won't talk to me, because its so awkward and no one knows who to believe or what to do. Why? Why would I do these things? I would give my right leg to be rid of this thing. I'm not kidding. It wouldn't even be a hard decision, I'd whip of my pants and say, someone get me a bottle of whiskey.

This is a nightmare, man. And its real. And I'm broke as hell, so don't represent this disease like a rich disease, in some strange attempt to create more bias against it. Is it really a case of mass delusion on a level never seen before? Now I ask you - if we're a humanitarian culture, why isn't mental illness just as big of a medical problem anyway? Its keeping people from living their lives, they still suffer profoundly. The claim of Lyme being psychological is not a justification for hate or flippancy. Where's the love gone? I mean it. I've been to so many doctors who, when I walk in with my claims of Lyme disease, are already rolling their eyes at me. Do you have any idea how much that hurts? Do you have any idea how much I just want to figure this out and get on with my life?

The bias is real, and on both sides..... but take it from one science guy..... I'm convinced this is a novel vector borne disease, with the ability to suppress the immune system. I suspect it also has the ability to release neurotoxins. I think it works with bartonella to infect blood cells. I feel like my whole body is in this weird low energy state.

I want you to notice that your only recourse is to call into question the validity of the sources - to question the people. That isn't science, or love. Disease is an ever-evolving, ever inventive monster.


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Re: The Donald Trump of Infectious Diseases?

Post by Starfoxsixty4 » Sun 10 Jan 2016 21:59

PS - noticing some writing issues. This was a stream of consciousness and not well edited. Sorry for any repetition or bad edits.

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Re: The Donald Trump of Infectious Diseases?

Post by nnecker » Sun 10 Jan 2016 22:18

Please Star,fill us in with the details.

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Re: The Donald Trump of Infectious Diseases?

Post by Starfoxsixty4 » Wed 13 Jan 2016 4:31

Sarcasm? If so, thanks, you genuinely made me feel bad.
I admit it was verbose, but I did apologize.
Instead of focusing on bullying, who's cool, etc, focus on what I was saying.
This disease sucks. I think novel diseases are probable. Bias is hard. But I swear to christ this is real and makes lives basically unlivable. The point of my message was to include context and show I'm a naturalist, science-based artist, with a genuinely fucked day-to-day.
Sorry for the awkward emotion, the awkward disease, the awkward writing. Its all I'm capable of.
I think if people learned to love each other, lots of bias could be resolved.

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Re: The Donald Trump of Infectious Diseases?

Post by nnecker » Wed 13 Jan 2016 13:56

Starfoxsixty4 said:

I can fill you in on all the details if you need them.
So,fill them in.You're the one that offered to do so.

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Re: The Donald Trump of Infectious Diseases?

Post by Starfoxsixty4 » Wed 13 Jan 2016 18:00

Yes.... I assumed you were being sarcastic as I wrote a novel full of details. Apologies.

The details I'm leaving out are just the idiotic and cartoonish journey into the wanderland of lyme. From a tick bite I started getting strange symptoms.... like not being able to find words when speaking. What? Weird. I put it in the back of my mind. I had started a new advertising music job in New York city. And being around people was a very strange experience.... I started getting a low grade social phobia. After a year, my ears started making all kinds of noises. Pulsatile tinnitus... I thought I was stuck in that hell, but luckily it went away after a week, but it comes back now and again, annoyingly.

I was healthy by the way. And like 29 at the time.

Doc to doc. I felt like lyme people were exaggerating. I didn't think I had it. I hate snake oils and rife machine type magical cures, and its all they seemed to talk about. My step mother claimed to have lyme, and she is a redneck hypochondriac. I was convinced I was living in an age where mystery in pathogenic disease just wasn't a thing. Then came the night of terror when I felt tingles and spasms all up and down my arms and legs and figured it was my last night on the planet....

Seven doctors, people. Ready for their genius diagnosis? First one said, drink more water. Um. Second one said allergies and gave me a nasal steroid. Now the evidence seems to say that can make it worse. Third doc (ear nose throat) at least admitted, 'I don't know'. Around this time, I was starting to suspect lyme. The tick that bit me was not a deer tick, but it left a bump (I had got this checked out a year earlier, and docs said, no big deal they leave a bump sometimes. Friggin brilliant.)

I went to neurologists and infectious disease doctors with info on lyme and my tick bite. I was met with disdain and flippancy. Such hateful little rich men in white coats, giving me this eye-roll look. They actively disbelieve in chronic lyme (I know there was a recent discussion on the technical term). I fought with insurance, tried IV antibiotics, I'm in debt up to my eyeballs, and nothing has seemed to work. I still owe assholes, none who really helped me, some who made my condition worse, lots of money.

You find out that people get awkward, including your own family and friends. Luckily my partner is a true friend and soulmate, but I'm always trying to pretend not to be a sick grump. I found a "llmd" who is semi-shady but at least treats lyme with experience. That's the best I can do?

It's such a real thing. I've seen the dismissive attitude. It isn't science or medicine. My issue is actually much bigger: what happened to scientific wonder and hope? We're living in an age of cutting edge technology - in America, anyway, disease of all kinds has been increasing in numbers. Why is this not a national movement? We got to the GD moon. We just took close up pictures of Pluto, an object 5 billion km away (which is incredible by the way) but we can't see into our own bodies in real time? We can't get closer to solving some of these mysteries?

I would love to see a new scientific movement in the US. Fundamental knowledge about biology and evolution - this is what will pay huge dividends. I believe in humanity - but we have to look at reality, science is the tool for the job. I hate being stuck between two groups who seem profoundly anti science. I've come to realize that skepticism is healthy, but something about lyme makes people disbelieve it. I really think we were sold a bill of goods that we are in the future. A lot of people felt victorious to see Obama in the White House, and a lot of people subscribe to the internet being a glorious technology that has superseded all others and will automatically work everything out. Its just not true. We need to dig deeper, we can solve these things. I'm honestly confused because it seems in everyone's best interest to put huge resources behind novel and creative new disease finding/fighting technologies. These bugs have no ability to reason. We do ( theory anyway). I noticed the prez said we need a "moonshot" goal for cancer - which I liked hearing. But I haven't heard any mention of lyme from any mainstream politician, and when anyone mentions it, its treated with kid gloves. Look how safe and sterile our society has become. Lyme is treated as an offense to our mainstream philosophy. In reality, its a humanitarian disaster on a scale not seen since AIDS.

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