John Caudwell on Lyme Disease
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- Опубликовано: 1 окт 2024
- 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.
29 September 2015
/ thismorning
I completed a study of a 62 year old woman with dementia yesterday 9/30/2015.The 23 page report (rich in actual Images of Borrelia burgdorferi and Miyamotoi Borrelia ( 2 different species) mirrors the results from my initial work with 5 Harvard University Brain Bank Alzheimer's cases- which also showed two strains of Borrelia in the autopsy brain tissues.Link: www.dropbox.com/s/s5qqoxv5stq0455/Final%20Report%20DW%20Blood%20Study%20%28%20dementia%29.pdf?dl=0
thank you John Caudwell for speaking up for those of us who don't have the platform such as yourself. You are a hero in the Lyme Community around the world. Not just in the UK, but everywhere. Thanks to your words, I believe a big change will be coming our way. The millions of us affected with Lyme disease and it's co-infections, that have misdiagnosed, undiagnosed for years and years, we say THANK YOU... thank you and god bless you and your family.
+Dannielle Thatcher Amen
What a wonderful human being this is and both of them.. thank you sir from the bottom of my heart ..thank you thank you
Thank you John Caudwell. Thanks for fighting for us.
Mine started out with panic attacks and agoraphobia. Thanks so much John for wanting to help. I was misdiagnosed with MS in 1995 and it has been quite difficult to have many willing to listen.
+Leslie McBain Mine too! It was so weird!! I was never the most social guy in the world, I'm an artist - but I was having strange difficulty looking people in the eyes. Two years ago, I was a musician working for television in New York. I felt like king of the world. Now, I have nothing..... broke, sick, grumpy, usually a sort of paralysis/fatigue that makes anything but tv difficult..... . Lost everything, spent all my money so doctors could put me through MRI machines and tell me to drink more water.
@@ChrisMMMMerritt I'm so sad. I hope you have gotten the much needed help. I understand.
It's important to note that not everybody who has Lyme disease, gets a bullseye rash.
don't just listen to the video, which is a must listen, read the comments below as well if you are struggling with lyme disease or symptoms you think might be
The only comment I would say here is that many persons with Lyme that has become chronic patients will not test positive even to the two tiered testing. The immune system is depleted when borrelia takes up residence, and it weakens the bodies response, so that if you have chronic lyme the body may not be able to produce the antigens to show that they borrelia is there. Plus, there are 300 strains and we tests for one. I tested 5 times prior to finally showing a positive after supporting my immune system and body for 4 years. Testing should be imperative, but also a question are of symptoms and habits should be added to further pinpoint. The issue of lyme is much bigger then lyme itself and today's lyme and usually there alongside multiple co infections, which also may not show up accurately on testing..
Thank you so much Mr. Caudwell! I was sick 14 years and was misdiagnosed bc of the horribly inaccurate CDC tests. Other tests are better, but we need much more investment in research for Lyme and other tick born disease testing so that so many hundreds of thousands in the UK and US alone are not missed every year.
We need lobbying as the number one priority!! I agree 100%. But we need it to be very aggressive (CDC and NHS are extremely recalcitrant) and focus not just on more testing, but employing better tests and researching to develop better tests and treatments. This may take more than a few million in lobbying. Please hammer them! You could end so much suffering.
I would also respectfully, but strenuously urge, no, *beg* you to spend heavily on research (after priority number one of lobbying to force NHS and CDC to do their jobs is planned and money started to be spent- no reason you can't do both :) )
Justin,
Your story sounds much like mine, I was also sick and undiagnosed for 15+ years. Thank you for your comment, you seem like an intelligent, well-informed person, which I appreciate very much! I look forward to viewing many of the videos you have on your channel.
-Noelle
I have been ill for over 20 years. I was recently diagnosed with Lyme disease. My tests were negative for Lyme BUT I scored 98 points on Dr. Horowitz's little quiz. The doctor who diagnosed me knew immediately what was wrong because he practices in a state where Lyme is very common. I've had many problems since my kids were young but no one ever put all my symptoms together until I could no longer function. I cannot get care even if I had money. My insurance won't cover it. If my test is negative, it doesn't matter what my symptoms are. Mainstream medicine says I don't have it. So I am treating myself with natural antibiotics and vinegar and honey, and a zapper. I have had the syndrome one gets from killing off too many bacteria too fast where I could not get out of bed unassisted. Now I know what speed to treat myself so that doesn't happen again and am doing pretty good. It will take years for me to get well, but if I live long enough, I will get well.
you can fix a lot sir, you have billions, you can help a lot
As a child psychiatrist in the United States I admire and am grateful for Mr. Caudwell's desire to make the medical community much more aware of how common Lyme Disease is throughout the world, and the need to support research to fight this potentially devastating illness. It is much more common than most physicians realize and there is unfortunately a great divide in physicians understanding of this illness. It is not just the Public Health Service in the UK that has to change but medical awareness all over the globe including the US. I hope that Mr. Caudwell considers using his resources to bring together the disparate medical factions to work on real research to overcome this affliction rather than being bogged down by biases within the medical community. People are better served when those with divergent opinions work together to discover where the truth really lies. Few have the financial resources or interest to initiate change. But to be blessed with this ability, allows one the freedom to create an international group of experts to work together to make a real change in medical thought and peoples lives. Lyme is truly like another illness caused by a spirochete, syphillis, which was known as "the great imitator" because it could present in so many different ways e.g. skin lesions, painful urination, dementia, psychiatric symptoms etc. Something needs to be done.
There are too many innocent victims of the "Lyme Wars."
Rosalie Greenberg, MD
+Rosalie Greenberg MD Thank you so much for this excellent comment, Dr. Greenberg!
To echo Justin Reilly, thank you for your comment!
+Noelle Pritchard Barkley
Noelle, It is sad that so many people have to suffer because of the lack of recognition of the devastation lyme disease and other tick borne illnesses can create. I strongly believe the more one learns about one's illness the more it helps the individual get good treatment. I have a local TV show in the U.S. called Kids First with Rosalie Greenberg M.D. and episodes are available online at www.kidsfirstrgmd.com. There you can learn a bit more about lyme, co-infections, as well as PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders After Strep)
infections, which relates to another infection that can be linked with psychiatric symptoms. I strongly believe knowledge is power. That is why scientists of many different backgrounds need to work together so that we can learn how overcome these potentially devastating medical illnesses.
Rosalie Greenberg, M.D.
This illness stole four years from my life, I've seen it ravage so many other lives. People who were afflicted with this illness or now someone personally need to continue to share their stories and shed light on this world's greatest hidden health epidemic.
how are you doing now? any relapsing?
i was bit 6wks ago and developed the classic bulseye rash, which cannot be mistaken for anything else , but because the tests are so inaccurate my test came back negative for Lyme. I am now taking a small course of antibiotics but fear its not enough. If i hadn't asked for the medication the doctors weren't even going to treat me. Its a total joke. There has never been a single recorded case anywhere in the world where a person has tested negative for Lyme disease after being diagnosed with Parkinson's, or MS. There are a few more but i can't remember there names. These are all diseases that so far have no known cause. Well to me its obvious that lyme is a direct cause OMG i can't believe they haven't picked up on this already.
Would love an update as to where John and family are at.
Does anyone know of any Lyme literate experts in the nhs who understand the 10-15% (usually the more serious cases) of people who have negative igg and positive igm, that private blood tests can pick up and nhs can't. Especially one who will accept a positive blood test and a private doctor from England who has confirmed the Lyme disease and coinfections, then put be able to put on nhs medical notes.
Any guidance appreciated 💚
Thank you for speaking out on this John. When I listen to your son's story it is soooo close to mine. Back in 1991 I started getting panic attacks out of the blue, I became agoraphobic and twenty years later I still live with generalized anxiety. Now though its in my joints, brain and Im sure almost every organ as I have every symptom you can think of. Back in 1991 when I get sick, in the same month two of my kids started having seizures, swollen joints and my other daughter who had a tick in her head got diagnosed with Cat Scratch Fever, which now I know is Bartonella. Not one doctor diagnosed any of us with Lyme disease until I finally got a diagnosis in 2005. Two of my kids are ok but my youngest daughter and I go on to be chronically ill. I hope your family can find treatments that will help them. God bless you all!
Wonderful, Mr. Cauldwell! Absolutely the correct way to go about it, with the NHS... They MUST do the work. My thoughts are with your son and the rest of your family, I wish all of you the best. Thank you for giving a voice to Lyme Disease in the UK, here in the US I have all but given up hope for any true action to be taken, the problem is so enormous. Somehow, I feel as though your involvement is cause for hope... Respectfully, NKP
Caudwell must be very careful in thinking that just "testing" folks will find those with Lyme disease; current tests, like he said are not very good. Positive test of Lyme doesn't mean you have the disease and a negative test doesn't mean you don't have it. It is a clinical diagnosis, taking into account all the symptoms/manifestations as well as the tests. If there were a simple answer, we would already have solved it.
I went ~22 years undiagnosed and then spent better part of 6 years being treated, mostly antibiotics. Lyme disease doesn't necessarily kill you, but you wish, sometimes, that you had died. The symptoms are indeed horrendous for some people.
Keep up the pressure on the medical community to do proper testing and find a better cure!! There are way too many folks suffering from this insidious disease.
Yeap , people who don't have Lyme sometimes think we're over reacting , but it's is complete and utter Hell. It WILL make you wish you were dead at least once . It's THAT bad
My family has also been devastated by Lyme. In fact I found out 20 people have been bitten on my block alone & some came down with Lyme with the typical story of going from doc to doc. I do my own microscopy & I find the bacteria in my blood. You can check my RUclips video "My horrific lyme disease blood" to see the spirochetes in my blood.
+Borrelia Tamer EASY cure located in Vancouver BC. 4 family members have had it for a year. We spent THOUSANDS looking for the cure, read every document and watched every film. We were cured 100% 3 years ago within 3 weeks.
+Scott D. I am very interested in, and need to know how you did this. I have late stage... 25 yrs of Lyme. Thank you
+TheTruthseeker1954 Just email me at b1lzkw73@hotmail.com..I sent a person with Lyme for 37 YEARS! He no longer has Lyme now!
Jim Edwards, I had just one week of antibiotics. Months after that I was using homeopathy daily and still got a negative result, i.e. no antibodies found. The only person I have met who had a positive test for antibodies was symptom free while his family were all very ill but with no antibodies . If you take antibiotics , sure , biofilms will form. If you take something else to break down the biofilms you will need several different antibiotics to kill the bugs which then emerge.
Very good interview with How Lyme Disease has affected your family. The Health care system needs change. Educating doctors and training is what ILADS.org does. Doctors in any country should be allowed to prescribe long term antibiotics without loosing their license. Health Insurance Coverage should be provided to help cover the high costs of treatments. Like many Lyme Disease sufferers around the globe...you too have had to educate Yourself on this disease while so many front-line doctors are still in the dark. Thank You so much for helping to get this disease recognized. The best of health for you and your family members.
What he sais is so true also here in the Netherlands, almost all chronic Lyme patients have not the money to be helped. Most of the doctors here are not willing even to help because they are affraid for an unknown "something". So the patients (including me) are forced to accept the Lyme with all the terrible things that come with it :(
TESTING CENTER IN THE UK - YES!!!!! the UK desperately needs this
YES!!! Lobbying - the same is true in the US. We have got to get lobbying groups. I am grateful for your thoughtfulness in how to move forward.
I am a 25 year old who was misdiagnosed bipolar and M.E. for 7 years, only just been diagnosed as having lymes disease. My life over this past 7 years has been hell, i have lost most my young 20s to this disease, and dont want to loose any more time. I am not very well off for cash so i imgaine as a british citizen the road ahead is going to be tough. Thank you for raising awareness John. It means a lot
I am reaching out to the Caldwell family in England. Thank you for speaking so articually on lyme disease for your son and family. As a family in the US we have battled lyme and several co-infections using every antibiotic and other treatments since 2001. However, 5 years ago I went to Paracelsus Klinic in Lustmulhe Switzerland and my daughter was treated by Dr. Thomas Rau. Before she went she was in a wheelchair, neurologically challenged, headaches, polyneuropathy, etc. She is now working full time and most importantly has her life back. Please research Dr. Thomas Rau's videos on U tube or contact them directly.
Thank you for highlighting the disease on TV!!!
Good luck to your son and family
Is John thinking of PAYING for the doctors with his BILLIONS ?.....I WOULDN'T THINK SO 🤔....
I've got it...I know it, I'm constantly exhausted, foggy, attacks of panic, blurred vision and just thought I was struggling after abuse and chronic exhaustion My cats sleep in my bed after playing outdoors......
I need testing.
Wow, this is great. I'm so sad that so many people are so sick from Lyme. I have heard of a new test that doctors can have in their offices. The Sofia 2 Lyme f/a. You can get results within seconds! I imagine it would be very expensive but so worth it. I found out I have Lyme from getting Zytoscans. I could never figure out all my many health problems despite eating healthy and exercising. I need to find a blood test which is very accurate. I always read they are not. I would like to have it mainly because friends and family don't see to believe me. I know I have it. But it is very sad and hard to be on your own fighting Lyme when people you love may not even believe you. But I am working with a natural health professional and seen a functional health doctor. Super expensive. My dad passed from Alzheimer's and both of his sisters have it. I have the Alzheimer's gene. Two copies. So it is extremeley important for me to get the Lyme under control. I'm 59 so time is so important. This is such a good video and I hope this man John has made some headway in this area.
I've had multiple embedded ticks and just want to say you do not always have to have a bullseye rash or any rash at all, but most often it's a different appearing rash, depending I suppose upon the bacteria present within the tick?
Hi Sasha
I agree that organic veg help, and I try to eat only organic produce. Sorry that colloidal silver hurt you, I use a spray which may be less dangerous. Homeopathy does help me a lot. Good luck, best wishes, Sue
Lyme disease is devastating. I have 2 family members who caught it about 20yrs ago and are now disabled.
UK is still in the dark ages when it comes to lyme treatment as well as getting proper diagnosis. It truly sad, but hopefully will change. Doctors are totally clueless when comes to identifying lyme and tick borne disease.
Thank you John for sharing how Lyme has effected your family and for spreading Lyme awareness in the UK and the world. I live in California and have battled Lyme for 14 years. Both my son and father also have Lyme disease as well as many of my friends and neighbors. Lyme disease is a world crisis. Thank you again for being a voice for the multitudes who are too sick to advocate for the cause. I started a Lyme awareness FB page where I feature stories by Lyme patients. If anyone would like to share their story please contact me via private message at Lyme Expressions And Fellowship or LEAF FB.
I hope the ball gets rolling on lyme disease. My son was finally diagnosed after so many doctor appts. He was never diagnosed through an md but through an alternative medicine clinic who put his blood under a microscope. He is still going through medical bills because the md says he doesn't have it. He has not only been struggling with the up and down roller coaster but also with people not understanding, medical bills and feeling like he can't be a good father with his children.
A friend who has Lyme sent me this video - while I am very aware of the number of ways the illness affects her life, and the devastation of not being able to receive the treatment, support and even diagnosis she needs from the NHS, it is still heartbreaking to hear this story, and to read of others' experiences.
"it's their responsibility, not mine" - this truth. yes, all well and good asking someone with millions to plough money into starting some sort of testing centre, but what he says throughout the interview - the need for a transformation of the health service, so they recognise Lyme, know what it is, and stop putting thousands of people through needless suffering - is what is going to make a lasting and sustainable change to those who suffer from Lyme, and those who may get the disease in the future.
Money cant buy good health what alot of shxt. The reason john has recovered is because he had money for treatment
Lyme disease from mosquitos, I think nano tech has played a part in this. John should also look up the lead poisoning scandal, which is huge
You can’t get Lyme disease from mosquitos 😂 nano tech?! Seriously??? 😂
Wrote a Lyme disease brochure with the help of 2 Lyme specialists. Will email a copy to anyone interested. God bless, Elaine Wonderful interview !
+Elaine Finn julie.bodtcher@jordandistrict.org
+Elaine Finn Hello.
I would love a brochure: binduspire@gmail.com
Hi Elaine
I would like the brochure you offered on
'Lyme disease
Send to: Serendipityvictoria@gmail.com
thank you for future generations. I don't think it is going to happen in time for me. Australia is only just getting started. It has to get to the public health level before pensioners could even consider treatment. I wonder how your son is going. I had a psychiatric herx on an oral antibiotic combo but it could have been the bicillin IM injections. Dont't push it too far!
17 years I need another LLMD mine quit he has been treating for 30 years my MD won't treat me he keeps texting me with the fall to test and telling me I don't have it is but I've never felt better and they denied ivy treatment when needed it as I have neurological Lyme disease very bad an inadequate treatment I should have had idea long time ago
I’ve been bitten and it’s worrying how it’s affected me - I’ve received antibiotics and worried about my family - these ticks are tiny. Luckily I found the tick but I’m still worried - thank you for this video
Thank you for raising awareness. After 5 years of symptoms, I’m now referred to neurology for investigation. 🙏
Well John I suspect you have more than enough money and hopefully common sense enough to tackle this issue with no government involvement to continue the same old BS that has been bought into by elements of the medical community.
Way to go, John Caudwell! Thank you for pointing out the medical drama surrounding Lyme Disease!!!
Thank you John Cauldwell. I had acute neurolyme from age 36-43. Caught 7 months in. I began a dramatic recovery in 2013 ... I'd be happy to help what finally got me out of Lyme Hell. I'm on FB. Look up Rebound and Reboot: Leaving Lyme Disease Behind.
Iif your still around I would like to know
So true what he's saying about the health system.
will never happen so sad for everyone that's suffering government doesn't give a crap health service on its last legs
My mummy has cfs nothing has made her better she got worse after breast cancer so tired all the time
Terrible disease that has taken 7 years of my life with no doctor/s.
no IV antibiotics ever with Lyme meningitis encephalitis.
Thank you so much for bringing this terrible disease to the masses.
They should try Bemer Therapy...amazing!
Casual call from the prime minister hhaha