Documentary: Undercover in German Lyme Clinics

[msf]

I have another question for those who watched the doc: which test did they have done, the LTT Elispot or the more recent one? I´ve forgotten the name, it might be Lymespot.

 

[mattie]

LTT Elispot

 

[msf]

Also, did the program makers try to find out how closely the tests were related to this test?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474945/

The exact relationship between all the T-cell tests on offer has never been clear to me, and the answer may shed light on the discrepancy between this report and the study I linked to above.

 

[msf]

I would have thought it would have been interesting (and good journalism) to have both that one and the Lymespot done at BCA lab, since the Lymespot was supposed to supercede the Elispot by dint of the fact that it could purportedly tell the difference between present and past infection.

 

[Advocate]

My daughter had 13 positive or equivocal test results from several different U.S. labs for Borrelia burgdorferei and other tickborne infections. She did not have a bullseye rash.

For two years she was treated by an ILADS doctor who specializes in treating Lyme Disease with state-of-the art antibiotic cocktails, along with alternative treatments. She had a PICC line for several months.

At the end of two years, she was worse than when she started. She is now bedbound about 23 hours a day, and suffers tremendous pain from tendinosis, possibly caused by the fluoroquinolones she was given.

 

[Orla]

My daughter had 13 positive or equivocal test results from several different U.S. labs for Borrelia burgdorferei and other tickborne infections. She did not have a bullseye rash.

For two years she was treated by an ILADS doctor who specializes in treating Lyme Disease with state-of-the art antibiotic cocktails, along with alternative treatments. She had a PICC line for several months.

At the end of two years, she was worse than when she started. She is now bedbound about 23 hours a day, and suffers tremendous pain from tendinosis, possibly caused by the fluoroquinolones she was given.

Gosh that is terrible.

 

[msf]

This seems quite pertinent: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5014924/

 

[duncan]

This seems quite pertinent:

I believe Aucott thinks persistent symptoms are a result of an immune system gone haywire, e.g. an autoimmune disorder triggered by, or an artifact of Lyme. I think Mark Davis is of that opinion as well, although I'm not definite. I've spoken to Aucott, but not to Davis.

They may be right.

Nevertheless, I feel the onus is on those suggesting an immune dysfunction to first prove persistent symptoms are not a function of ongoing Bb infection, and I do not believe this has been done definitively or even adequately..

There is much room for new insights and better clarity into many, many different facets of Lyme disease and other TBDs.

 

[bertiedog]

Several former KDM patients here got worse because he immediately put them on abx for Lyme.

I would think that is because you are destroying the gut microbiota and latest research has shown that it serves an amazing number of essential functions in the body, for instance making neurotransmitters or at least helping them to communicate, let alone modifying immune function, probably helping the HPA axis to function and also it is now implicated in autoimmune illnesses.

Pam

 

[duncan]

I would think that is because you are destroying the gut microbiota and latest research has shown that it serves an amazing number of essential functions in the body, for instance making neurotransmitters or at least helping them to communicate, let alone modifying immune function, probably helping the HPA axis to function and also it is now implicated in autoimmune illnesses.

Damned if you do, damned if you don't...

 

[Hip]

I may have him wrong, but I feel Hip may warn you against going to Augsburg say, because they will just give you a Lyme diagnosis, and instead advise you to go to see Dr. Chia, who will just give you an enterovirus diagnosis.

I am not suggesting anyone should "prefer" one infection over another. Pathogens are not fashion items, where you chose the one that best matches your eye color! You need to find out which infections you have, and treat accordingly.


Lab tests are important, but it also helps to think like an infectious disease specialist in these situations, and not just rely on the tests (especially dubious lab tests): John Caudwell said that his entire family of were all "struck down" by illnesses, presumably triggered by some pathogen. So that "struck down" statement suggests they were all healthy at one point, but then were suddenly struck down quickly, maybe over a year or so.

So you would want find a pathogen that can easily infect a whole family within a short time, as apparently occurred with Caudwell's clan. This is how infectious disease specialists think: they consider the pathogens that fit the pattern of infection.

Borrelia, as we know, is not contagious by normal social contact; so for members of his family to be healthy at one point, and then suddenly struck down at more or less the same time by Borrelia, that's seems pretty improbable. Borrelia cannot do that. So you need to consider pathogens that can. That's the sort of detective work that good infectious disease specialists will employ.

 

[dadouv47]

I would think that is because you are destroying the gut microbiota and latest research has shown that it serves an amazing number of essential functions in the body, for instance making neurotransmitters or at least helping them to communicate, let alone modifying immune function, probably helping the HPA axis to function and also it is now implicated in autoimmune illnesses.

Pam

That's exactly why he's now only giving heavy abx for people with active infection.

 

[duncan]

John Caudwell said that his entire family of were all "struck down" by illnesses, presumably triggered by some pathogen. So that "struck down" statement suggests they were all healthy at one point, but then were suddenly struck down quickly, maybe over a year or so.

So you would want find a pathogen that can easily infect a whole family within a short time, as apparently occurred with Caudwell's clan. This is how infectious disease specialists think: they consider the pathogens that fit the pattern of infection.

Borrelia, as we know, is not contagious by normal social contact; so for members of his family to be healthy at one point, and then suddenly struck down at more or less the same time by Borrelia, that's seems pretty improbable. Borrelia cannot do that. So you need to consider pathogens that can. That's the sort of detective work that good infectious disease specialists will employ.

"...maybe over a year or so..." would be very much in keeping with Borrelia transmission patterns, particularly in endemic areas. Think Lyme Ct, for example, where many children in a small area were infected. Pastoral areas in particular would be potentially subject to clusters based on tick habitats, theoretically in much less time than a year. I suspect it is not as uncommon as you might imagine for entire families to be infected - as is evidenced in "Cure Unknown" by Pamela Weintraub.

 

[Hip]

"...maybe over a year or so..." would be very much in keeping with Borrelia transmission patterns, particularly in endemic areas.

Do we have any evidence (with the conservative CDC-approved Borrelia tests) that whole families can be infected within a short time frame of a year or so, each independently being bitten by a tick?

Pastoral areas in particular would be potentially subject to clusters based on tick habitats

A quick Google check finds that John Caudwell's country home, where he and his family live most of the time, is Broughton Hall, near Wetwood, Staffordshire. He bought this home 22 years ago. If you put "Wetwood, Staffordshire" into the Big Tick Project UK Map, you find that it's not even high risk area for tick bites (it's medium risk).

 

[msf]

Do we have any evidence (with the conservative CDC-approved Borrelia tests) that whole families can be infected within a short time frame of a year or so, each independently being bitten by a tick?





A quick Google check finds that John Caudwell's country home, where he and his family live most of the time, is Broughton Hall, near Wetwood, Staffordshire. He bought this home 22 years ago. If you put "Wetwood, Staffordshire" into the Big Tick Project UK Map, you find that it's not even high risk area for tick bites (it's medium risk).

Is the timeframe in question right for Enterovirus infection though? Has chronic Enterovirus infection been proven to be transmissible? Or is the latency period sufficient to explain this?

 

[Hip]

Is the timeframe right for Enterovirus infection though? Has chronic Enterovirus infection been proven to be transmissible? Or is the latency period sufficient to explain this?

The enteroviruses linked to ME/CFS (coxsackievirus B and echovirus) can certainly spread during the acute phase of the infection, which lasts around a week. Just how easily they can spread during the chronic phase I am unsure. A doctor who did a lot of research on this was the late Dr John Richardson, who was particularly interested in enterovirus-associated diseases, especially ME/CFS, and as a family doctor, he was able to observe how once an enterovirus had infected one family member, before long other members would also become infected.

In the case of my particular infection (which was likely a nasty strain coxsackievirus B4), this I observed I was still transmitting to other people even after 18 months. And when I transmitted it to someone new, within around a year, that infected person would passed my virus to all the other members of their household (my virus causes pretty characteristic physical and mental symptoms, so it was relatively easy to see who had caught it).

At least blood tests for chronic enterovirus are reliable: provided you use the sensitive neutralization-type antibody tests (such as those provided by ARUP Lab in Utah), then you will have no difficulty in detecting chronic enterovirus infections. Though other forms of enterovirus blood test like PCR are not reliable.

 

[msf]

Sorry, that isn´t even close to proof. I do not see how those who are dubious about the quality of the evidence for Chronic Lyme could accept your arguments regarding enteroviruses, at least in the case of the Caudwell´s anyway.

 

[Hip]

Sorry, that isn´t even close to proof. I do not see how those who are dubious about the quality of the evidence for Chronic Lyme could accept your arguments regarding enteroviruses, at least in the case of the Caudwell´s anyway.

The proof of spreading to whole families is there if you care to follow up on my Dr John Richardson reference. I'd suggest reading the chapter "Familial Consequences of Viral Illness" from his book Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Other Organ Pathologies.

Richardson studied enteroviruses in his patients and their families for close to 50 years.

Enteroviruses are spread from person to person via respiratory secretions like saliva.

 

[Mel9]

Does that include a certain Belgian Dr?
Because i know of many patients treated after using the LTT and other Lyme tests who have had significant recoveries. Most of these people had a longstanding M.E dx.
I know of one patient who went from paralysis and wheelchair bound to walking, kayaking etc. Was this genuine or fake?

By 'fake': do they mean that pathologists are paying someone in the lab to paint in extra bands? That seems a bit fanciful.

 

[duncan]

Do we have any evidence (with the conservative CDC-approved Borrelia tests) that whole families can be infected within a short time frame of a year or so, each independently being bitten by a tick?

Well, sure, and that is just taking what is reported in Cure Unknown. Btw, I was assuming each family member is bitten by a different tick(s). When it comes to time frames, take your average summer months - or less.

Where I live this would not raise an eyebrow. I suppose it's how familiar you are with a dangerous pathogen and its relative risk in your geographic area. But if that risk has not been adequately conveyed, potential victims may be at a disadvantage.