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

[kungfudao]

True. But in the study under discussion, I'm not sure I trust their finding of internal consistency. They just don't say nearly enough about their methodology, especially regarding blinding and determining if a band is positive or negative. I suppose in this particular case, it also would have been nice if they had included the actual visual images of the results.

The Western Blot being positive is only a bench mark set by the cdc.If the markers are there that is significant,.especially certain markers. I believe it was Pediatric lyme Doctor Charles Ray Jones that said,"the bench mark set by the CDC is the equivalent of asking a woman that is pregnant to test positive 5 times before acknowledging she is pregnant.

 

[kungfudao]

It hasn't been refuted once.



What evidence do you have that any of that leads to a more accurate or reliable test?

Thanks for the feedback. This is why I'm thinking that empirical treatments are more realistic. Assume something is true, treat for it, it doesn't work, try something else.

Sounds bad to me.



That claim is just not supported by the evidence. Personally, I'd leave this doctor. Good luck.

Esther12 can you please reference the double blind study you are referring to.

 

[Esther12]

Esther12 can you please reference the double blind study you are referring to.

Those quotes from me didn't seem to refer to any particular study.

There was some discussion of this blinded assessment of IgeneX's urine testing: www.amjmed.com/article/S0002-9343%2800%2900701-4/abstract

 

[kungfudao]

One of the initial studies on Borrelia infections states that they had arthritis,
Up to 10% of children in some areas had Borrelia, this is presumably in one year. So in several years the infection rate could be nearly 100%
Another publication talks about neurological and cardiac implications of Borrelia infection.
My cousin died recently from what I suspect was Lyme Disease< I am aware of many Lyme Deaths in Australia. My br in law is a cardiac surgeon and recently had 5 bypasses, but he refuses to even consider the possiblity of infection!!
A neighbour went to hospital for a "safe" heart operation, but 10 days later she was dead due to an infection!!
After requesting bacterial tests a relative is still waiting 9 months for the results.
The hospitals here are useless, I have countless stories of negligence

I am sorry for your loss, my whole family has Chronic Borreliosis, Me, my two sisters, my dad and Mother who died in 76 which I now suspect was from suppression of the Immune system as a result of Lyme. I believe my father was infected at one very traumatic point in his life, who then passed it onto my mother and she had three children who all all were problematic growing up and became chronically ill as adults. As far fetched as this may sound to some holdout people who think the IDSA and CDC are our trustworthy friends, all of this is medically documented in the pathology of lyme disease.
(I am new to this group, I cant copy and paste until I have so many posts)
I highly suggest for you to show to your Br in law, and any other doubters: Or just people who want to be more educated. U tube
Pathologist, "Dr Alan Mac Donald, on human Borrelia deaths at the NorVect conference"
"Dr Alan Mac Donald, Pathology of Lyme Disease 1-2 and 3"
"Dr Alan Mac Donald , Alzheimer's and Lyme disease".

 

[kungfudao]

Those quotes from me didn't seem to refer to any particular study.

There was some discussion of this blinded assessment of IgeneX's urine testing: www.amjmed.com/article/S0002-9343%2800%2900701-4/abstract

Thanks, One thing I really like about Igene-x is the testing for co infections,specifically the Fish test.
Of course I'm not crazy about the whole Idea of two tier testing. Any time I see Alan Steere,A big red flag goes up for me as he always seems to be at the center of dis information promoting post lyme syndrome. But more importantly I think the real topic is,Chronic Borreliosis, which has a lot of new research, which I already posted on page 8.

 

[Esther12]

Thanks, One thing I really like about Igene-x is the testing for co infections,specifically the Fish test.
Of course I'm not crazy about the whole Idea of two tier testing. Any time I see Alan Steere,A big red flag goes up for me as he always seems to at the center of dis information promoting post lyme syndrome. But more importantly I think the real topic is,Chronic Borreliosis, which has a lot of new research, which I already posted on page 8.

It's important that they have some good evidence that the testing they provide is of real value though. Just providing people with 'results' can otherwise be misleading and harmful.

 

[duncan]

@Esther12 , which tests provide real value, exactly? I'm not asking how they have been validated; I am asking which tests currently provide real value, and why you believe so.

 

[Esther12]

@Esther12 , which tests provide real value, exactly? I'm not asking how they have been validated; I am asking which tests currently provide real value, and why you believe so.

I guess that there are different levels of value.

Testing which has shown internal reliability under blinded conditions (ideally from multiple labs) will have shown that it is able to identify something, and distinguish one group of samples from another.

If this testing is also shown to have to strong association with particular symptoms/disease then it has shown it can be helpful for diagnosis (the stronger the association the greater the value).

A super valuable test would be one that could accurately identify the cause of all our ills and point as to guaranteed cures!

Alternative Lyme testing it has yet to show it has reached the first level and I think that's a problem.

 

[duncan]

With all due respect @Esther12 , you haven't really answered my question in a way that is any more precise, or useful, than most currently available Lyme diagnostics generally are.

I do appreciate the irony, though.

Let me try to be a little more specific on my part: Aside from a culture test in a BSK medium of biopsied skin from EM rashes, which mainstream Lyme tests do you think are accurate, and for what purposes can they be reliably employed?

Or are you defining "real value" some other way?

 

[Esther12]

Earlier in the thread there was some discussion of this study, which showed that some mainstream testing showed internal consistency under blinded conditions: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC85863/

There is some good evidence that this sort of mainstream testing is of some value but I don't keep up with mainstream Lyme testing. Quite a few years ago I did take the time to look at the evidence, and then it showed that there was good evidence mainstream testing was of some value, and none that alternative testing was better in anyway. Since then, I've kept an eye out for any new evidence to show that alternative testing is of any greater value than mainstream testing, and none has emerged.

 

[GcMAF Australia]

Earlier in the thread there was some discussion of this study, which showed that some mainstream testing showed internal consistency under blinded conditions: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC85863/

There is some good evidence that this sort of mainstream testing is of some value but I don't keep up with mainstream Lyme testing. Quite a few years ago I did take the time to look at the evidence, and then it showed that there was good evidence mainstream testing was of some value, and none that alternative testing was better in anyway. Since then, I've kept an eye out for any new evidence to show that alternative testing is of any greater value than mainstream testing, and none has emerged.

I dont think there has been to much evidence ublished since 2000 to show that the earth is not flat, nor that the earth goes around the sun.
So what point are you trying to make?
Do you have nothing better to do?
Why would any one bother to publish on this.?
Why would anyone bother to waste their time and money?
Where is all the evidence regarding all other medical claims made by millions of people, including doctors.

 

[kungfudao]

It's important that they have some good evidence that the testing they provide is of real value though. Just providing people with 'results' can otherwise be misleading and harmful.

It's important that they have some good evidence that the testing they provide is of real value though. Just providing people with 'results' can otherwise be misleading and harmful.

https://www.lymedisease.org/lymepolicywonk-was-this-important-lyme-study-hidden-for-12-years/
http://www.lymedisease.org/lymepoli...er-up-baker-and-the-embers-study-revisited-2/
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0029914
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0117207

These Studies are huge, just for starters, Why did it take 12 years for the Klempner makau monkey study to be published. It disproves the Embers Study and was exactly the same as it was used in the human study, But you cant inoculate and biopsy humans. Also it was supposed to be used as a control.It could have changed the whole outlook on the lyme wars and save mass human suffering. People like Wormser & Shapiro and Steere (who all have conflicts of interest) are always talking about the dangers of over use of antibiotic. What about the dangers of giving stealth bacteria steroids,or not treating a horrific Disease.There is no solid proof that the bacteria can't persist. Note1#:The two main references I am using both show that they do persist.Note:2#...2001 Klempner study published...2006 IDSA guidelines published...2012 Embers study published showing Klempner study to be wrong,and that the testing was inconsistent with the Embers study.
Quote:
"All of this brings us back to what Congressman Smith referred to as the “lost decade” of research in Lyme disease. He was referring to the delay in publishing the Embers research trial which found persistent infection in monkeys after treatment using the Klempner protocol. The lack of scientific rigor in the Klempner trial coupled with the delay in publication of the Embers trial has caused the Lyme community enormous harm. Both studies were NIH funded, and, again we are left to wonder why the NIH and Dr. Phil Baker, who headed up Lyme research for the NIH, failed to properly oversee and follow-up on this research. Why aren’t they setting the record straight now that they have the information?

It brings to mind a comment that Dr. Stephen Barthold made at the congressional hearing chaired by Congressman Smith:

There is overwhelming evidence in a variety of animal species as well as humans that B. burgdorferi persists without treatment, but the crucial question is does it survive following treatment, and if so, do surviving spirochetes cause “chronic” Lyme Disease or PLDS? These questions cannot be answered by speculative and expensive human clinical trials motivated by firmly held dogmatism."

Next... The antibiotic study...Daptomycin, Cefoperazone, Doxycycline, Completely eradicated Borrelia Burgdorferi in vitro shows several important things.1# It explains why people could still be sick .2# All the antibiotic combinations failed to completely eradicate the bacteria in all its forms accept one triple combo.3# It shows that the Bacteria is pleomorphic and that most antibiotics are only effective on certain morphological phases of the Bacteria. To finish: People that are holdouts on the possibility that Borrelia is a persistent infection are floating on a chunk of ice that is melting away. At some point it could be wise to get off that piece of ice before it sinks. Respectfully

 

[Esther12]

https://www.lymedisease.org/lymepolicywonk-was-this-important-lyme-study-hidden-for-12-years/
http://www.lymedisease.org/lymepoli...er-up-baker-and-the-embers-study-revisited-2/
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0029914
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0117207

These Studies are huge, just for starters, Why did it take 12 years for the Klempner makau monkey study to be published. It disproves the Embers Study and was exactly the same as it was used in the human study, But you cant inoculate and biopsy humans. Also it was supposed to be used as a control.It could have changed the whole outlook on the lyme wars and save mass human suffering. People like Wormser & Shapiro and Steere (who all have conflicts of interest) are always talking about the dangers of over use of antibiotic. What about the dangers of giving stealth bacteria steroids,or not treating a horrific Disease.There is no solid proof that the bacteria can't persist. Note1#:The two main references I am using both show that they do persist.Note:2#...2001 Klempner study published...2006 IDSA guidelines published...2012 Embers study published showing Klempner study to be wrong,and that the testing was inconsistent with the Embers study.
Quote:
"All of this brings us back to what Congressman Smith referred to as the “lost decade” of research in Lyme disease. He was referring to the delay in publishing the Embers research trial which found persistent infection in monkeys after treatment using the Klempner protocol. The lack of scientific rigor in the Klempner trial coupled with the delay in publication of the Embers trial has caused the Lyme community enormous harm. Both studies were NIH funded, and, again we are left to wonder why the NIH and Dr. Phil Baker, who headed up Lyme research for the NIH, failed to properly oversee and follow-up on this research. Why aren’t they setting the record straight now that they have the information?

It brings to mind a comment that Dr. Stephen Barthold made at the congressional hearing chaired by Congressman Smith:

There is overwhelming evidence in a variety of animal species as well as humans that B. burgdorferi persists without treatment, but the crucial question is does it survive following treatment, and if so, do surviving spirochetes cause “chronic” Lyme Disease or PLDS? These questions cannot be answered by speculative and expensive human clinical trials motivated by firmly held dogmatism."

Next... The antibiotic study...Daptomycin, Cefoperazone, Doxycycline, Completely eradicated Borrelia Burgdorferi in vitro shows several important things.1# It explains why people could still be sick .2# All the antibiotic combinations failed to completely eradicate the bacteria in all its forms accept one triple combo.3# It shows that the Bacteria is pleomorphic and that most antibiotics are only effective on certain morphological phases of the Bacteria. To finish: People that are holdouts on the possibility that Borrelia is a persistent infection are floating on a chunk of ice that is melting away. At some point it could be wise to get off that piece of ice before it sinks. Respectfully

Neither of those PLoS studies are relevant to anything I've said here though.

I do have some concerns about some of the 'reassurance' given as part of mainstream approaches to Lyme and the possibility of Lyme infection leading on to long-term problems after treatment with antibiotics. The creation of the PTLS label (or whatever it's being called now) could reflect some awareness of these problems and desire to improve things, but it does seem that politics are affecting the claims and behaviour of some researchers and medical authorities. Just because I'm sceptical of the claims of alternative Lyme doctors doesn't mean I just trust all the claims being made by mainstream Lyme doctors/researchers. tbh, I've not kept up with mainstream Lyme research, so could not tell you if it had improved or got worse over the last five years, but even if it had got much worse, that would not mean that alternative Lyme approaches were any more useful.

 

[kungfudao]

Neither of those PLoS studies are relevant to anything I've said here though.

I do have some concerns about some of the 'reassurance' given as part of mainstream approaches to Lyme and the possibility of Lyme infection leading on to long-term problems after treatment with antibiotics. The creation of the PTLS label (or whatever it's being called now) could reflect some awareness of these problems and desire to improve things, but it does seem that politics are affecting the claims and behaviour of some researchers and medical authorities. Just because I'm sceptical of the claims of alternative Lyme doctors doesn't mean I just trust all the claims being made by mainstream Lyme doctors/researchers. tbh, I've not kept up with mainstream Lyme research, so could not tell you if it had improved or got worse over the last five years, but even if it had got much worse, that would not mean that alternative Lyme approaches were any more useful.

It shows that the standard testing in inaccurate,and it refers to things that are misleading and harmful...Respectfully... note...What you are calling Alternative Lyme doctors ,I call Hands on treating physicians with post graduate credits in Lyme related areas, as one "main stream Doctor"said to me one time "what is a Lyme Literate MD anyway, and then went on to put in my report that I was obsessed with "Lime" ha ha ...for starters they know how to spell it.

 

[Esther12]

It shows that the standard testing in inaccurate,and it refers to things that are misleading and harmful...Respectfully

I only read the abstracts, but neither seems to be assessing mainstream testing. Sorry if I missed something but could you narrow things down a bit for me by quoting something that you think contradicts something I've claimed.

 

[GcMAF Australia]

It shows that the standard testing in inaccurate,and it refers to things that are misleading and harmful...Respectfully... note...What you are calling Alternative Lyme doctors ,I call Hands on treating physicians with post graduate credits in Lyme related areas, as one "main stream Doctor"said to me one time "what is a Lyme Literate MD anyway, and then went on to put in my report that I was obsessed with "Lime" ha ha ...for starters they know how to spell it.

Could not agree more
There are doctors who are dealing with Lyme
and Doctors with their heads in the sand

 

[kungfudao]

I only read the abstracts, but neither seems to be assessing mainstream testing. Sorry if I missed something but could you narrow things down a bit for me by quoting something that you think contradicts something I've claimed.

"What evidence do you have that any of that leads to a more accurate or reliable test?"

Ok I will answer your question, but not in the narrow paradigm that you have laid out. With the goal to be getting all the information you can about the patient as possible..The cdc standard is just a bench mark that is unrealistic. They raised the bench mark at one point because they thought to many people were testing positive for lyme.That's like going to your doctor and they say we've got great news ,your hiv test came up negative...you only showed a little bit. A little bit is significant. Many of the Western Blot Tests dot even show the bands. They just say pos or neg. Next: To require or suggest that in order to be a traditional medical doctor you need to do the Elisa fist and only if that comes up pos ,then you would follow up with a Western Blot. That is insane. Igenex has two more bands than other Western Blots, and many experts scientists and pathologists like Alan Mac Donald say The whole system needs to change...But the clinician needs to get all the info they can. Igenex tests for all the co infections and they have specialized tests like the Fish for Babesia. Advanced laboratory services does a great test by culturing your blood but that only will work if the bacteria is free floating in that sample. They got a bad rap from the cdc saying they were cross contaminating because they were finding Borrelia species not believed to be in the US. they were wrong .After culturing ticks from that region they found that species in tick guts. No apologies were made by the cdc.When you go to Igenex they recommend getting a multitude of tests and if you only have 1 two stared band come up pos ,that would be significant especially when you also have a co infection and you are chronically ill with multi systemic symptoms.That is how a doctor trained in Lyme disease begins to make a diagnosis. If you are chronically ill and keep running into the Traditional Brick wall. than Igenex can test for
(from Website)--------------------------------------------
IgG/IgM and IgM Antibody Serology
IgG Western Blot and IgM Western Blot
Lyme Dot Blot Assay (LDA)
Reverse Western Blot (Confirmation test for LDA)
Multiplex PCR for urine, whole blood, serum, CSF, miscellaneous (ex: Skin biopsy, breast milk, semen)

In addition to Lyme Disease, a co-infection may be suspected for Babesiosis, Ehrlichiosis, or Bartonella. We offer tests for these other tick-borne illnesses. The tests are IFA (fluorescent antibody) or direct tests by PCR. In the case of Babesia, FISH (fluorescent in situ hybridization) is also available. The FISH test detects the ribosomal RNA of the Babesia parasites directly on air-dried blood smears. This test is highly specific for Babesia, unlike the standard test, the geimsa stain smear, which cannot differentiate between malaria parasites and Babesia.

Babesiosis Tests

B. Microti and/or WA-1 IgG/IgM AntibodyBabesia and/or Babesia WA-1 PCRBabesia FISH (RNA)

Ehrlichiosis Tests

Human Granulocytic Ehrlichia IgG/IgM AntibodyHuman Granulocytic Ehrlichia PCRHuman Monocytic Ehrlichia IgG/IgM AntibodyHuman Monocytic Ehrlichia PCR

Bartonella Tests

Bartonella henselae PCR with Whole Blood
------------------------------------------------------------------
Thats how I got diagnosed, after years of suffering and handfuls of Doctors in many specialties.So its not so simple as who has the best Elisa ,or Western Blot.,and it becomes redundant to answer these one liner Questions
Pathologist Alan Mac Donalld Talks a lot about this in his free videos.
Pathology of lyme disease part 1-2 and 3

 

[GcMAF Australia]

Senator Posey discusses how Dr. Bill Thompson and his colleagues hid data connecting autism and the MMR vaccine. Then they agreed to destroy all documents related to the study. Correctly believing this was an illegal act, Dr. Thompson kept copies of all documents and data files.
So who would beleive CDC??
http://www.c-span.org/video/?c4546453/senator-posey-calls-investigation-cdc-fraud

 

[Esther12]

"What evidence do you have that any of that leads to a more accurate or reliable test?"

Ok I will answer your question, but not in the narrow paradigm that you have laid out. With the goal to be getting all the information you can about the patient as possible.

Sounds like no real evidence then? If you're okay with that, then that's up to you, but I do think it's important that all patients advised to pursue this testing are made aware of the absence of evidence of it's value.

 

[duncan]

Indeed, @Esther12 , some could interpret recent laws in some states in the US as insisting clinicians inform patients of that very element - but as it pertains to 2T testing.

I suspect what many may have a problem with is you admonishing individuals about using unvalidated or suspect tests - what you seem to refer to as alternative tests - when, generally speaking, pretty much all Lyme diagnostics are burdened with significant issues. By attacking alternative tests, you seem to be insinuating that FDA-approved tests are good.

Why not just say patients need to do their homework before embracing any tbd diagnostic, and that there is a pressing need for better diagnostics for each Lyme species and strain, and for each stage?