New doctor wants to treat empirically for Lyme, good idea?

[kungfudao]

But there is some good evidence of value from blinded assessment.

What tests specifically are you referring to??? Elisa, Western blot What laboratories, specifically Wich ones are mainstream???Also so there is no confusion could you define Empirically treating.

 

[maryb]

What do you think about Vancomycin substituted for the Dancomycin? A friend of mine had IV Vancomycin, her walking was badly affected but after 6 weeks on the IV Vancomycin she was massively improved, and it has remained, she is also on GSE, Natto, Tindizole, maybe Azithro as well, not sure....

 

[duncan]

Hmmm...New data from Monica Embers seems to suggest pulsing may not kill Bb persisters after all...I cannot tell from the abstract, they may have only used doxy.

How will the IDSA deal with persisters in their new Guidelines?

Diagnostics are bad enough. Treatment that ignores persisters potentially may be little more than throwing darts at a board - even with cyst-busters.

 

[GcMAF Australia]

It's not that I particularly like that paper, it's that this is the only evidence we have from the blinded assessment of an alternative Lyme test. I often see it claimed that the current mainstream testing is much more reliable than that for those who have been infected for some time.

I don't think that pointing out the lack of evidence for the value of alternative Lyme testing means that I have any particular insight into how particular patients should be treated. I think that doctors need to be honest with patients about when their recommendations are not supported by any good quality evidence, but that's more a moral than clinical judgement.

There are probably up to a 100 Lyme tests either in use or being developed. How could any one manage to do blind tests of that many.
Who would you test, from which part of the world, which part of the body would you test.
Storing and transporting samples can affect the tests as chemical changes can occur with freezing.
Even the containers used for samples can affect the tests.
Interpreting the tests is not easy even by "qualified" researchers.
Some medical tests cannot even be replicated from lab to lab.
As for honesty of doctors I have seen so much in the medical systems that it beggars belief. They say so much that is scientifically rubbish. The same with hospitals.

 

[kungfudao]

What do you think about Vancomycin substituted for the Dancomycin? A friend of mine had IV Vancomycin, her walking was badly affected but after 6 weeks on the IV Vancomycin she was massively improved, and it has remained, she is also on GSE, Natto, Tindizole, maybe Azithro as well, not sure....

Do you mean Daptomycin ,Iv'e never heard of Dancomycin...My LLMD uses IV Vancomycin and says he gets good results,He was even suggesting I do it, But then this New research paper came out, and my plan changed. so my only experience with Vancomycin is hearsay. Although it sounds similar I'm not sure Daptomycin and Vancomycin are in the same class of antibiotics I'll halve to check.Nattokinase or Lumbrokinase and grapefruit seed extract are good and 3 classes of antibiotics, Sounds like a good combo???

 

[kungfudao]

This was Written by LLMD Dr Richard Horowitz: Quote
Dr Zhang from John Hopkins University just published an important article in PLoS One on innovative drug combinations for the treatment of Lyme disease.
"Of studied drugs, daptomycin was the common element in the most active regimens when combined with doxycycline plus either beta-lactams (cefoperazone or carbenicillin) or an energy inhibitor (clofazimine). Daptomycin plus doxycycline and cefoperazone eradicated the most resistant microcolony form of B. burgdorferi persisters and did not yield viable spirochetes upon subculturing, suggesting durable killing that was not achieved by any other two or three drug combinations. These findings may have implications for improved treatment of Lyme disease, if persistent organisms or detritus are responsible for symptoms that do not resolve with conventional therapy. Further studies are needed to validate whether such combination antimicrobial approaches are useful in animal models and human infection". Research monies and grants are now needed ASAP to test out these drug combinations in clinical practice in order to relieve the suffering of those with Lyme-MSIDS.
http://journals.plos.org/plosone/article…

His Further post:
Dr. Richard HorowitzThank you for helping to move the research along, however human trials can be done with Daptomycin and other antibiotics mentioned in the study before animal studies are finished. Many Lyme patients are sick now and can not wait. I am working with my foundation, The Lyme Navigator Foundation, which is a 501c3 to accomplish this.

 

[kungfudao]

Roughly:

mainstream testing: that which has been assessed under-blinded conditions and found to have some internal consistency and an association with a cluster of symptoms.

alternative: no good evidence of value. Tends to class many more people as 'positive' than mainstream testing. Very often used by those doctors who believe that Lyme explains the symptoms of a large percentage of CFS patients.

You used this research paper by Alan Steere, If I remember correctly showed that Igenex and other laboratories,weren't any more accurate than "mainstream Testing" So does that not go to say that mainstream testing is of no more value than Alternative Testing. There are many problems with mainstream Testing and Doctors.Not once have I heard of a main stream Doctor testing for co infections, or ordering a Cd 57, or looking at the 100 plus symptoms beyond the Arthritic Definition. Would you Trust a Doctor with your life that believed two weeks of Doxycycline would cure you.And if you did the two weeks antibiotics and w ere still sick would you believe you had Post Lyme Symptoms.There are more than 100 research papers Dis proving this,
85% 0f ticks carry co infections "Eva Sapi" Chronic Lyme is a Medical fact. The people promoting mainstream testing ,are the same ones that wont treat you or do any of the above. Here are 27 reasons why laboratory tests fail regardless of the laboratory doing the Testing.
http://www.mentalhealthandillness.com/seronegativelymedisease.html

 

[maryb]

@kungfudao
Yes sorry, of course I meant Daptomycin, thanks for your reply.
I am considering the IV V in September once I've sorted several other things out. Particularly a splint for my jaw, hopefully it will help with the head pressure.

BTW you have a lot of patience with people!!!
I of course don't have any.....have neither the desire nor the energy.
the reason most people come on PR is to seek info,help and support and to offer that to others.

 

[kungfudao]

Hmmm...New data from Monica Embers seems to suggest pulsing may not kill Bb persisters after all...I cannot tell from the abstract, they may have only used doxy.

How will the IDSA deal with persisters in their new Guidelines?

Diagnostics are bad enough. Treatment that ignores persisters potentially may be little more than throwing darts at a board - even with cyst-busters.

Ill check out that paper,most people pulse to save the GI tract and drugs like Flagyl are hard to tolerate.The plos one paper shows Doxy just morphs the bacteria into another form, "mainstream Doxy treatment" But works amazing combined wit Dapto and Cefoperazone.

 

[duncan]

@kungfudao , I hate to refer anybody to this guy's blog, but check out Relative Risk's blog - it offers an expanded write-up of the Ember's study.

Note one of the possible conclusions made by Embers et al: Failure of prolonged abx therapy in some cases could be explained by an inability to ever fully eradicate Bb persisters. It is another in vitro effort, though, and it seems only to examine doxy - but as we all know, doxy is the drug of choice for IDSA Lyme doctrine fans.

 

[kungfudao]

@kungfudao
Yes sorry, of course I meant Daptomycin, thanks for your reply.
I am considering the IV V in September once I've sorted several other things out. Particularly a splint for my jaw, hopefully it will help with the head pressure.

BTW you have a lot of patience with people!!!
I of course don't have any.....have neither the desire nor the energy.
the reason most people come on PR is to seek info,help and support and to offer that to others.

I really don't have patients either ,But I learned , after getting kicked in the teeth by 30 plus mainstream doctors, That I needed to be a part of educating people. People start rambling about things they obviously or admittedly don't know much about, haven't researched or have some kind of interest beyond just basic conversation, I dont expect to change them ,but I think they eventually expose themselves to all the people who are paying attention. I believe that is important to not allow them to walk all over a whole lot of sick people. Eventually the twisted logic will show its ugly head, and doesn't stand up. personal experience is very valuable. There is a reason why any lyme blog you go on is plastered with miles of sick people. Medical Doctors Researchers and scholars change there position on Lyme when they have it. Every Doctor I ever saw that followed IDSA and CDC. made comments like...There's no great mystery here,and went on to ruin my life. When I started doing my own research I ,like most people with chronic lyme, I found a whole other side and the corruption became obvious, It was only IGENEX That did every possibility of testing,and when you ad it all up ...specific markers on the western blot ,even indeterminate, with a positive coinfection,a trial of antibiotics that caused multiple bullseye rashes on whole body, CD-57 test below 10 whole face and head going paralyzed for a period of time ,But went away after trials of antibiotics, people unable to walk getting up and walking again,while on antibiotics...that's not placebo or post lime symptoms. Any way its important to not let people brush off our experience. Its real and only getting worse .Even The cdc says lyme is a clinical Diagnosis.I've had so many traditional MD,s tell me I'm depressed...I ask them What mainstream blood test came up positive that shows I,m depressed. It's a double edged sword. There is no SOLID research showing CFS, Fibromyalgia, Arthritis etc. is not triggered by a bacterial infection. Certainly many things could also be involved,Which is the position of LLMD's.
Any way all we ca do is keep up the good fight.

 

[kungfudao]

@kungfudao , I hate to refer anybody to this guy's blog, but check out Relative Risk's blog - it offers an expanded write-up of the Ember's study.

Note one of the possible conclusions made by Embers et al: Failure of prolonged abx therapy in some cases could be explained by an inability to ever fully eradicate Bb persisters. It is another in vitro effort, though, and it seems only to examine doxy - but as we all know, doxy is the drug of choice for IDSA Lyme doctrine fans.

But it Also proved the existence of persisters and disproved the Klempner study which is the baby for IDSA and CDC's position on post lyme symptoms. Those guide lines would never have been written if it would have been published 12 years prior like it was supposed to.
Duncan I couldn't find the post you were referring me to 'Relative Risk'??? I would like to see what your referring to.Sounds interesting.

 

[kungfudao]

But it Also proved the existence of persisters and disproved the Klempner study which is the baby for IDSA and CDC's position on post lyme symptoms. Those guide lines would never have been written if it would have been published 12 years prior like it was supposed to.
Duncan I couldn't find the post you were referring me to 'Relative Risk'??? I would like to see what your referring to.Sounds interesting.

@kungfudao
Yes sorry, of course I meant Daptomycin, thanks for your reply.
I am considering the IV V in September once I've sorted several other things out. Particularly a splint for my jaw, hopefully it will help with the head pressure.

BTW you have a lot of patience with people!!!
I of course don't have any.....have neither the desire nor the energy.
the reason most people come on PR is to seek info,help and support and to offer that to others.

Actually Daptomycin is used when there is resistance failures with Vancomycin

 

[duncan]

The paper itself is very new, @kungfudao . It was published in the July 27th, 2015 edition of Antimicrobial Agents and Chemotherapy. See "Persister Development by B. Burgdorferi Populations In Vitro", John R. Caskey and Monica E. Embers.

So now you have the Kim Lewis effort. He is the academic leader, unaffiliated with Lyme, who figured out how to deal with MRSA persisters.

You have Ying Zhang out of Johns Hopkins.

And Monica Embers. You will remember Embers - it was her study whose release was delayed for over ten years that was supposed to be the sister study to the Klempner et al effort whose findings were made available in 2001. The Embers study was supposed to be the reality check, as it used primates, on which they could perform actual autopsies. Of course, we all know Klempner pretty much said there is no benefit to prolonged abx, supporting the mainstream mantra that there was no evidence of persistent infection following administration of IDSA-recommended therapy for Lyme. It used human subjects, and arguably the primary metric it employed was a questionnaire.

Ember et al's study was supposed to come out within two years of that, but it never saw the light of day until more than ten years later. When it did, it showed the conventional treatment failed to eradicate all the spirochetes in the monkeys studied. It found spirochetes post-treatment. In what is today considered a seminal study, "Persistence of Borrelia Burgdorferi in Rhesus Macaques following Antibiotic Treatment of Disseminated Infection", was finally published in January, 2012.

Now, on top of Ember's earlier pivotal primate effort, and along with Lewis and Zhang and Ember's most recent publication, there are substantive indications that there may be gaping flaws in some of the assumptions and recommendations within the 2006 IDSA Lyme guidelines.

These findings all point to the possibility - many would say 'fact' - that Bb may at times not be resolved by IDSA-recommended therapy, and I believe may undermine the principal treatment argument set forth by mainstreet Lyme.

I also believe these findings won't make even a dent in current protocol.

 

[kungfudao]

The paper itself is very new, @kungfudao . It was published in the July 27th, 2015 edition of Antimicrobial Agents and Chemotherapy. See "Persister Development by B. Burgdorferi Populations In Vitro", John R. Caskey and Monica E. Embers.

So now you have the Kim Lewis effort. He is the academic leader, unaffiliated with Lyme, who figured out how to deal with MRSA persisters.

You have Ying Zhang out of Johns Hopkins.

And Monica Embers. You will remember Embers - it was her study whose release was delayed for over ten years that was supposed to be the sister study to the Klempner et al effort whose findings were made available in 2001. The Embers study was supposed to be the reality check, as it used primates, on which they could perform actual autopsies. Of course, we all know Klempner pretty much said there is no benefit to prolonged abx, supporting the mainstream mantra that there was no evidence of persistent infection following administration of IDSA-recommended therapy for Lyme. It used human subjects, and arguably the primary metric it employed was a questionnaire.

Ember et al's study was supposed to come out within two years of that, but it never saw the light of day until more than ten years later. When it did, it showed the conventional treatment failed to eradicate all the spirochetes in the monkeys studied. It found spirochetes post-treatment. In what is today considered a seminal study, "Persistence of Borrelia Burgdorferi in Rhesus Macaques following Antibiotic Treatment of Disseminated Infection", was finally published in January, 2012.

Now, on top of Ember's earlier pivotal primate effort, and along with Lewis and Zhang and Ember's most recent publication, there are substantive indications that there may be gaping flaws in some of the assumptions and recommendations within the 2006 IDSA Lyme guidelines.

These findings all point to the possibility - many would say 'fact' - that Bb may at times not be resolved by IDSA-recommended therapy, and I believe may undermine the principal treatment argument set forth by mainstreet Lyme.

I also believe these findings won't make even a dent in current protocol.

Your probably right because were not dealing with honest, but when you combine that with the plos1 complete Eradication using Dapto, Cefoperazone, Doxy, it clearly shows Doxycycline as a monotherapy ,it makes the spirochete morph into planktonic forms and becomes ineffective.
Copy & paste ,hold down left on mouse,drag across what you want to copy, while its blue right click, box opens ,left click on copy, then go back to your post right click and in open box left click on paste.

 

[Esther12]

There are probably up to a 100 Lyme tests either in use or being developed. How could any one manage to do blind tests of that many.
Who would you test, from which part of the world, which part of the body would you test.
Storing and transporting samples can affect the tests as chemical changes can occur with freezing.
Even the containers used for samples can affect the tests.
Interpreting the tests is not easy even by "qualified" researchers.
Some medical tests cannot even be replicated from lab to lab.
As for honesty of doctors I have seen so much in the medical systems that it beggars belief. They say so much that is scientifically rubbish. The same with hospitals.

Each test should be assessed under the conditions that those who designed/use the test claim is best. eg: if they say samples should be stored and transported in a particular way, then that should be done. If they say that the testing is intended for those from a particular part of the world, then samples from there should be used. A lot of these potential problems can be easily overcome imo.

"Some medical tests cannot even be replicated from lab to lab."

That's a serious problem, and indicates that the test is not ready for commercial use imo.

"As for honesty of doctors I have seen so much in the medical systems that it beggars belief. They say so much that is scientifically rubbish. The same with hospitals."

I agree and really want to see higher standards in medicine.

You used this research paper by Alan Steere, If I remember correctly showed that Igenex and other laboratories,weren't any more accurate than "mainstream Testing" So does that not go to say that mainstream testing is of no more value than Alternative Testing.

That paper showed that the Igenex test was unreliable under blinded conditions, finding samples positive and negative seemingly at random. I can't remember exactly what the results for the mainstream testing were in that paper, but they were significantly better.

 

[GcMAF Australia]

Each test should be assessed under the conditions that those who designed/use the test claim is best. eg: if they say samples should be stored and transported in a particular way, then that should be done. If they say that the testing is intended for those from a particular part of the world, then samples from there should be used. A lot of these potential problems can be easily overcome imo.

"Some medical tests cannot even be replicated from lab to lab."

That's a serious problem, and indicates that the test is not ready for commercial use imo.

Sorry I actually meant some of the traditional laboratory tests.
Even vitamin D tests can come under this category as they can be unreliable.
The plastics that are used for samples can affect results. Even different batches of test tubes from the same company can vary.
Storage when refrigerated can affect the samples.
I know from many years of lab experience.

 

[Esther12]

Sorry I actually meant some of the traditional laboratory tests.
Even vitamin D tests can come under this category as they can be unreliable.
The plastics that are used for samples can affect results. Even different batches of test tubes from the same company can vary.
Storage when refrigerated can affect the samples.
I know from many years of lab experience.

I understood you, but then maybe I wasn't clear in response.

There are things which, when changed, may affect the accuracy of testing. We should be trying to be aware of all these things and doing what we can to minimise the danger of them leading to misleading results, for all testing. The differences between labs for commercialised testing (alternative and mainstream) should only be very small unless something is going wrong.

 

[Valentijn]

I can't remember exactly what the results for the mainstream testing were in that paper, but they were significantly better.

33% false negatives on ONE step of the mainstream two-tier test. It's the other (first) step which has the worse reputation for false negatives. They skipped that step in the paper, or did not report on it.

But I don't think many people are using a urine test to diagnose Lyme. At least, not the same one from 10-15 years ago.

 

[duncan]

The dilemma of mainstream Lyme diagnostics can be likened to the doctor who used a two-meter tape strip to confirm who was 21 years or older . The doctor could estimate if someone was over 21 simply by looking at them, by examining them. But, when in doubt, he could bring out that two-meter tape.

Anyone taller than the two-meter strip was deemed at least 21. Anyone shorter had to be under 21. That was the rule. It was a scientific rule because it had been tested in NBA land where most adults were taller than the two-meter tape. So it was a good rule.

It certainly did a good job at preventing most children from being incorrectly identified as being 21 or older. It also frequently helped confirm that persons who were longer than two meters were, in fact, adults.

Unfortunately, many adults aged 21 and older proved shorter than two meters. Afterall, this was not NBA land where the test had been developed. In the town where the doctor practiced, the height of the average woman was less than two meters. So was the height of the average adult male. Some teenagers were taller than two-meters. Many very old people who once measured more than two meters had shrunk and were now shorter than two meters.

This would not have been a problem had the doctor simply learned to listen to his customers, but he was highly suspicious of every one of them. To resolve the problem, the doctor and his peers simply decided to dismiss the results that did not conform to their proposed tape metric, and ignore the complaints from the unruly adults insisting they were over 21.

The bad news was many adults were told they were children. The good news was that the average age of the community was lowered and the need for social security greatly reduced.