John Caudwell

[Sidereal]

Then we need to know if the ME outbreaks in the 20th Century were caused by Lyme.

Are you referring to ME cluster outbreaks like LA County General, Royal Free in London, Incline Village etc.? Those outbreaks cannot possibly have been caused by a bacterial infection like Lyme which is spread by tick bites and is not airborne or spread through casual person-to-person contract.

 

[Valentijn]

Are you referring to ME cluster outbreaks like LA County General, Royal Free in London, Incline Village etc.? Those outbreaks cannot possibly have been caused by a bacterial infection like Lyme which is spread by tick bites and is not airborne or spread through casual person-to-person contract.

At the LA outbreak, I recall hearing that vaccines were being trialed, using fluids from people which might have been contaminated with something. I don't recall the details, however.

It also might be the case that multiple triggers are needed. So people need to have pre-existing Lyme infection, then get hit with a normally spreading virus.

 

[Sidereal]

At the LA outbreak, I recall hearing that vaccines were being trialed, using fluids from people which might have been contaminated with something. I don't recall the details, however.

As I understand it, some of the early polio vaccines were contaminated with simian virus 40. The LA outbreak was described along the lines of atypical polio.

 

[charles shepherd]

Debate on Lyme Disease testing in the UK enters The Times letters page:


Tick-borne disease

The only form of transmission of lyme disease is inoculation by ticks, a leading expert says

Sir, You report that the founder of Phones4U and his family have been given a diagnosis of lyme disease (Sept 23). Lyme disease is not an epidemic disease or a contagious disease; nor has there been any evidence of congenital transmission or transmission through breast milk. The only form of transmission is inoculation by ticks. A positive blood test may indicate that a person has been bitten by a lyme disease-infected tick although the patient has not developed overt lyme disease. Positive tests may persist for many years, even after treatment. There is no need to send specimens of blood for testing in the United States, as diagnostic methods in the UK are available and are comparable. Most cases of lyme disease, with the exception of lyme arthritis, tend to be self-limiting and respond to short courses of antibiotics. Industrial doses of antibiotics given over long periods do not promote further cures. Some rare cases with neurological and psychiatric presentations may be related to the after-effects of tick-borne flavivirus encephalitis. Physicians will always seek to find an organic cause for unexplained and unpleasant physical and psychological symptoms; sadly lyme disease is very rarely the cause.
David J M Wright MD FRCPath
Director (1982-2000) of the Lyme Disease Reference Laboratory, formerly at Charing Cross Hospital, London W6

 

[duncan]

David Wright? Never heard of him.

Didn't take long for the denials to start.

 

[Yogi]

Added to the main Lyme forum but very relevant for ME as the BBC Radio 5 Live refers to ME/CFS.

John Caudwell raising awareness of his family and himself being diagnosed with Lyme. He is doing great advocacy work!

A number of references to Lyme being mis-diagnosed with ME.

http://www.bbc.co.uk/programmes/b06d9vyv

http://www.bbc.co.uk/programmes/p033w8cm

The times that ME/CFS and Lyme is discussed on Radio 5 Live link above:

9m - John Caudwell main interview and refers to misdiagnosis and "doctor says you got ME, Fibromyalgia etc..." and himself had ECG shown arrhythmia and getting symptoms of mild ME symptoms 3/4 years ago.
41m - Conversation with London School Hygiene Tropical Medicine doc
1h 07m - Reading out messages
1h 28m - Caller said NHS disputed private sector positive Lyme disease test and diagnosed with CFS instead.
2h 20m - Caller tested positively in private sector test and getting better but was ridiculed by NHS doctors.

 

[Valentijn]

There is no need to send specimens of blood for testing in the United States, as diagnostic methods in the UK are available and are comparable.
David J M Wright MD FRCPath

I think he forgot to mention that the false negative rate is also extremely high in the mainstream tests on both continents

 

[Valentijn]

2h 20m - Caller tested positively in private sector test and getting better but was ridiculed by NHS doctors.

Even if they're right and it's not Lyme, it's completely absurd and inappropriate that they won't listen to patients who are doing much better during or after taking antibiotics. They come off looking like hardliners who will never be swayed by any proof or argument, and in the process they destroy any trust or respect they might otherwise be afforded.

How can anyone talk to people like that about anything? It's blatant hostility toward patients, and of course patients are then forced to seek testing and treatment elsewhere.

 

[Antares in NYC]

Debate on Lyme Disease testing in the UK enters The Times letters page:


Tick-borne disease

The only form of transmission of lyme disease is inoculation by ticks, a leading expert says

Sir, You report that the founder of Phones4U and his family have been given a diagnosis of lyme disease (Sept 23). Lyme disease is not an epidemic disease or a contagious disease; nor has there been any evidence of congenital transmission or transmission through breast milk. The only form of transmission is inoculation by ticks. A positive blood test may indicate that a person has been bitten by a lyme disease-infected tick although the patient has not developed overt lyme disease. Positive tests may persist for many years, even after treatment. There is no need to send specimens of blood for testing in the United States, as diagnostic methods in the UK are available and are comparable. Most cases of lyme disease, with the exception of lyme arthritis, tend to be self-limiting and respond to short courses of antibiotics. Industrial doses of antibiotics given over long periods do not promote further cures. Some rare cases with neurological and psychiatric presentations may be related to the after-effects of tick-borne flavivirus encephalitis. Physicians will always seek to find an organic cause for unexplained and unpleasant physical and psychological symptoms; sadly lyme disease is very rarely the cause.
David J M Wright MD FRCPath
Director (1982-2000) of the Lyme Disease Reference Laboratory, formerly at Charing Cross Hospital, London W6

So much demonstrably WRONG information in that statement.
This David Wright is of the school of thought that claims Lyme is just "a disease of the knees." Every other life-altering and debilitating symptom of Lyme may be due to "the aches and pains of normal living."

These people make it very, very difficult to refrain from typing some serious profanities...

 

[duncan]

One almost gets the impression from this alleged Lyme expert that someone thinks they all got infected roughly around the same time.

Is this said during any interview? My take away is the son showed symptoms first many years ago. Each member of this family could have gotten infected over the course of several years, at different times and locations, from the bites of different ticks. Where I come from, entire families being infected is not as unusual as some might think. Just ask Pam Weintraub.

Does anyone know the history and prevalence of Lyme infection in his area of the UK? I'd be curious about canine reports as well.

Incidentally, there is nothing saying they all share the same species of Bb infection.

Also, is this Wright person suggesting that because tests in the UK and the US are comparable, that is a GOOD thing?

 

[Antares in NYC]

Even if they're right and it's not Lyme, it's completely absurd and inappropriate that they won't listen to patients who are doing much better during or after taking antibiotics. They come off looking like hardliners who will never be swayed by any proof or argument, and in the process they destroy any trust or respect they might otherwise be afforded.

It's so much easier to tell your patients that "it's all in their heads." After so many years dealing with Lyme & ME/CFS, I have come to the conclusion that a considerable percentage of doctors don't know much beyond their years in med school, don't care, or give a disproportionate attention to golf over your health grievances.

"Psychosomatic" is the magic word that relieves bad doctors from further caring about your case. Who has time to catch up with the science when there's so much golfing to do? Those new Callaway drives in the consult are not just for show, people!

 

[maryb]

Nice response to the letter.

http://ihateticks.me/2015/09/30/false-claims-about-lyme-disease-published-in-the-times-newspaper/

 

[duncan]

Brilliant!

(Now I don't feel so bad for not being familiar with Mr. David Wright's name.)

 

[Antares in NYC]

Nice response to the letter.

http://ihateticks.me/2015/09/30/false-claims-about-lyme-disease-published-in-the-times-newspaper/

Brilliant response. That's how it should be done. Overwhelming response with facts and data, which are on our side, let's not forget.

 

[digital dog]

Please forgive my ignorance about lyme but do you think that perhaps some people get a tick bite and do not recover due to a genetic vulnerability?
I've written to Caudwell three times now.
I think he will help all of us in one way or another.

 

[Valentijn]

Nice response to the letter.

http://ihateticks.me/2015/09/30/false-claims-about-lyme-disease-published-in-the-times-newspaper/

Wow, very impressive. Tons of citations. Here's a brief summary since I know we often hate clicking onto other sites and or reading through longer things:

• The doctor is no longer practicing, and went to med school starting in the 1950's, hence would have received no education about Lyme at that time.
• 
  
• The institution he was involved with hasn't existed for 15 years.
• 
  
• According to the CDC, congenital transmission to the fetus of an untreated pregnant woman has been known to occur. Birth defects are also quite common when a pregnant woman is infected.
• 
  
• More recent research suggests the possibility of sexual transmission (though I don't think it's yet been proven to actually occur).
• 
  
• Igenex and Elispot-LTT tests are available in the US and Germany respectively, but not in the UK.
• 
  
• Lyme is often not a self-limiting disease which goes away without treatment (dozens of citations are provided).
• 
  
• A short course of antibiotics is often not sufficient to treat Lyme infections, as Lyme was still detectable afterward. Months or years of antibiotics were found necessary in the dozens of papers cited.
• 
  
• Ongoing psychiatric symptoms following Lyme infection can be due to (the damage done by?) Lyme itself, not necessarily a completely treatable effect of tick-born virus (a case study is cited, but I can't see the full text).
• 
  
• (Last but not least ) "Expert" guidelines endorsed by NICE do actively discourage doctors from looking for an organic cause of disease if CFS has been diagnosed, to avoid reinforcing our supposed false illness beliefs.

 

[maryb]

That's a good summary, thanks @Valentijn , I know sometimes I hate going to links.

This response has caused a huge outcry on the Lyme Facebook pages, he has certainly stirred some angry Lyme hornets, silly man.

I've often thought some people with a medical degree somehow think the rules that apply to the rest of us, if we don't want to appear stupid, ie. do your research before opening your mouth. don't apply to them as they truly believe everything they say should be taken as fact by the plebians....

Maybe its due to the ego that goes with the degree in this country

News for you doc - some of the plebians are becoming better educated than the medical profession :0 love it.

.

 

[digital dog]

I hope Im not stating the obvious here or insulting anyone with lyme, but don't you think that lyme is just the trigger for ME/CFS in the same way as a virus, accident, inoculation, pathogens etc could be?

That people have a vulnerability to ME/CFS and the tick bite reveals this? Perhaps these people would have got ill in due time regardless of whether they'd been bitten by a tick. The fact that Caudwell's family have lyme and are symptomatic indicates that there is a genetic predisposition?

I really believe that a treatment for lyme (or cure hopefully) could help a great deal of people with ME.

Again, apologies for my ignorance.

DD

 

[justy]

I hope Im not stating the obvious here or insulting anyone with lyme, but don't you think that lyme is just the trigger for ME/CFS in the same way as a virus, accident, inoculation, pathogens etc could be?

That people have a vulnerability to ME/CFS and the tick bite reveals this? Perhaps these people would have got ill in due time regardless of whether they'd been bitten by a tick. The fact that Caudwell's family have lyme and are symptomatic indicates that there is a genetic predisposition?

I really believe that a treatment for lyme (or cure hopefully) could help a great deal of people with ME.

Again, apologies for my ignorance.

DD

I don't think you are being ignorant - it's a very good question!

I think some people believe Lyme can cause M.E if it is left untreated for years to wreak havoc in the immune system and organs. I'm sure this is the case with me. The other possibility is, as you say that it is one of many possible triggers. In which case detecting and treating the Lyme, just the same as detecting and treating viruses or hormonal issues in PWME should theoretically bring down the load on the immune system and aid recovery/remission.

On the other hand the Lyme forums are full of people originally diagnosed with M.E/CFS who have gone on to a Lyme diagnosis who have completely recovered - most of those people who recover seem to have been ill for less time, so less time for the pathogens to over run the body and do it's nasty work? those of us who have been ill for longer seem to have picked up multiple issues along the way and treatment is harder, longer and less successful. What if we had know we had Lyme in the beginning? perhaps we would have been like the ones who completely recover?

There is also the possibility that some people have a genetic inability to clear Lyme from the system in the way others do and this leads to long term problems - I have met perfectly healthy people who have tested positive for Lyme - there is the view (Klinghardt?) that Lyme is now endemic in certain places - everyone is getting exposed to it but not all get sick - why?

 

[ukxmrv]

Would be interested to see what NICE does say about M.E and Lyme.

"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