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

[Esther12]

By attacking alternative tests, you seem to be insinuating that FDA-approved tests are good.

I think that this is a problem.

I do think that there's good evidence that mainstream testing is of some value but I'm largely agnostic on the debates around exactly how useful and what problems there may be with it. I know that I'm not willing to do all the reading and work necessary to keep up to data on all the areas of controversy and uncertainty here. Even if mainstream testing was of no value whatsoever, that would still not mean that alternative testing was any better and I do think it's a mistake to try to argue for the value of alternative testing by just criticising mainstream testing.

Picking apart Hinduism doesn't validate Christianity.

 

[duncan]

TBD diagnostics are a disaster. This is true regardless from which camp they emerge. Period.

Much as is the case with ILADS, a benefit of alternative test providers is that they are trying to improve on a very bad situation. Their efforts speak to an insane deficit.

Still, all new tests, and all old tests, need to be proven.

One just hopes for an impartial and competent prover.

 

[Esther12]

Much as is the case with ILADS, a benefit of alternative test providers is that they are trying to improve on a very bad situation. Their efforts speak to an insane deficit.

It's not like they're just in the lab, working on tests, then doing the sort of blinded assessments the could show value. They've been selling alternative tests for Lyme for decades now, and we're still lacking any good evidence of their value.

I do feel that it's a mistake for some people to go on talking about alternative Lyme testing as if it's a newly discovered frontier in science, and great evidence of it's value will be along any moment.
eg:

I think we will have to wait for more research to be published before people like Esther are convinced and we can say, I told you so!

If there's no good quality research showing the value of alternative Lyme testing in three years time will people then decide to stop recommending others spend their money on it? If not, how much longer? Fifteen years? Thirty?

If there was a test that was positive for a high percentage of CFS patients and a low percentage of healthy controls, then it would be easy to show this under blinded conditions and this would be an important breakthrough.

 

[msf]

Esther, if you think KDM and his patients are all satisfied with any ´result´ then you don´t really understand his approach. It´s not as if KDM suddenly decided that most of his patients have Lyme, and then went out and found tests that confirmed that. Rather, he found that many of his patients were testing positive for Lyme on many different tests, some ´standard´ and some ´non-standard´ (calling these tests ´alternative´ is misleading). He then followed the science, as a good doctor should.

Really, I think there are only three possibilities here: either many of his patients have Lyme, and other TBIs, or there is something wrong with the immune system of these patients, and this causes the false positives, or Lyme and other TBIs were the trigger for the patient´s illnesses, but are no longer active.

It is very unlikely to be the second, because why would the immune system only cause false positives for TBIs? So it must be the first or the third, so either way Lyme and other TBIs cannot be ignored, since they are either the direct or the indirect cause of many of the symptoms collectively known as ME.

 

[Esther12]

Really, I think there are only three possibilities here: either many of his patients have Lyme, and other TBIs, or there is something wrong with the immune system of these patients, and this causes the false positives, or Lyme and other TBIs were the trigger for the patient´s illnesses, but are no longer active.

It is very unlikely to be the second, because why would the immune system only cause false positives for TBIs? So it must be the first or the third, so either way Lyme and other TBIs cannot be ignored, since they are either the direct or the indirect cause of many of the symptoms collectively known as ME.

It is also possible that lots of healthy controls would be positive too. That's what needs to get sorted out. That's what we need good quality blinded assessment of testing for.

 

[msf]

You think that a lot of healthy controls will be PCR positive for Lyme and other TBIs? I think that´s as unlikely as the second possibility I outlined.

 

[Esther12]

You think that a lot of healthy controls will be PCR positive for Lyme and other TBIs? I think that´s as unlikely as the second possibility I outlined.

I think it's quite possible that that the testing which finds lots of CFS patients have Lyme will also find that lots of healthy controls have Lyme - regardless of the nature of the testing. The only blinded assessment we've had of alternative testing from IgeneX showed that it was totally unreliable. PCR was leading to false positives for XMRV, so these things are possible.

 

[msf]

Yep, but Lyme ain´t XMRV, no matter how much you wish it was.

 

[GcMAF Australia]

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.

Esther dont you realise that we are just stringing you along

 

[GcMAF Australia]

I think it's quite possible that that the testing which finds lots of CFS patients have Lyme will also find that lots of healthy controls have Lyme - regardless of the nature of the testing. The only blinded assessment we've had of alternative testing from IgeneX showed that it was totally unreliable. PCR was leading to false positives for XMRV, so these things are possible.

Indeed many "healthy" people do have Lyme
We know that, Lyme researchers know that: but they dont know that.
How do you define healthy??
We know all your arguements, it is not as if we have not considered them!!
It is well known that at least 5-10% of the so called "healthy" people are carrying Lyme deep within their body just waiting to pop out when convenient. It is well known that Lyme is a parasite that has some interest in keeping its taxi alive. Well, well known except by the deniers of Lyme.

 

[Esther12]

Esther dont you realise that we are just stringing you along

Time for you to unleash your killer argument imo.

Indeed many "healthy" people do have Lyme
We know that, Lyme researchers know that: but they dont know that.
How do you define healthy??
We know all your arguements, it is not as if we have not considered them!!
It is well known that at least 5-10% of the so called "healthy" people are carrying Lyme deep within their body just waiting to pop out when convenient. It is well known that Lyme is a parasite that has some interest in keeping its taxi alive. Well, well known except by the deniers of Lyme.

Is there any good evidence that alternative/non-mainstream Lyme tests find higher positive results for those with symptoms than those without? If not, why assume that a positive test is related to symptoms?

"It is well known that at least 5-10% of the so called "healthy" people are carrying Lyme deep within their body just waiting to pop out when convenient."

Is there any good evidence that this is true?

 

[GcMAF Australia]

when is a Lyme test actually alternative/non-mainstream??
Who makes up the rules in life? Is it CDC?? The magnificent US government??
Is it written into the US constitution?
Does the rules in the US appply world-wide?
Is the CDC omnipotent?

 

[Esther12]

when is a Lyme test actually alternative/non-mainstream??
Who makes up the rules in life? Is it CDC?? The magnificent US government??
Is it written into the US constitution?
Does the rules in the US appply world-wide?
Is the CDC omnipotent?

We're defining these labels in order to help us understand one another.

On being asked who would count as an alternative Lyme doctor I said:

I suspect that people will have slightly different views on it, and I think it would be difficult to come up with any 'rule', but I'd say that doctors reporting that the majority of CFS patients that they see have Lyme would count according to my view.

 

[GcMAF Australia]

"It is well known that at least 5-10% of the so called "healthy" people are carrying Lyme deep within their body just waiting to pop out when convenient."
Is there any good evidence that this is true?

Of course or else I would not have said it.
Maybe you could look at the papers and look at the background data for healthy people.
I paper says that the rate of Lyme is no higher in Autistic people than in the general population, ie around 3%
so healthy people have Lyme
With even the magnificant (not) CDC claiming 300,000 US people get diagnoxed with Lyme each year apparently no healthy person has got Lyme because the CDC can miracously cure each of those every year!! My god they must be good.
And obviously it is illegal in the US for a healthy person to get bitten by a tick and carry 1 single Borrelia bacteria around for even 1 milli second. This would have course be monitored by the CIA, FBI and the police.
Oh well I guess you can always shoot the ticks and put their heads up on the wall as a trophy

 

[GcMAF Australia]

A mainstream doctor would be some one who has a degree in medicine
and follows the concepts that are adhered to
By definition then any medical improvement is carried out by non mainstream doctors
this would include the use of vitamin C to treat scurvey in the UK navy after many years of it being known.
Also the treatment of ulcers with antibiotics. Of course the original Doctor who looked into this was deregistered.
Of course Galileo was tried by the Inquisition, found "vehemently suspect of heresy", forced to recant, and spent the rest of his life under house arrest. And all he said was the earth rotates around the sun!

 

[Esther12]

Of course or else I would not have said it.

Ideally you'd be able to point to some evidence for the 5-10% claim rather than just tell me that there is good evidence supporting this claim.

Is there any good evidence that alternative/non-mainstream Lyme tests find higher positive results for those with symptoms than those without? If not, why assume that a positive test is related to symptoms? If so, would you be able to let me know where I could find it?

A mainstream doctor would be some one who has a degree in medicine
and follows the concepts that are adhered to
By definition then any medical improvement is carried out by non mainstream doctors
this would include the use of vitamin C to treat scurvey in the UK navy after many years of it being known.
Also the treatment of ulcers with antibiotics. Of course the original Doctor who looked into this was deregistered.
Of course Galileo was tried by the Inquisition, found "vehemently suspect of heresy", forced to recant, and spent the rest of his life under house arrest. And all he said was the earth rotates around the sun!

I'm not trying to use 'alternative' as a slur, but as a label for distinguishing one approach to Lyme from the other. If you want to associate the 'alternative' label with all medical improvement that's fine by me, but has no bearing on the discussion here.

 

[GcMAF Australia]

This site searches most of the science papers
http://www.ncbi.nlm.nih.gov/pubmed
If you type in borrelia sera human there are 1418 results
Of course sorting through these takes time
you can also select the free copies option
here are some


Emerg Infect Dis. 2015 Jan;21(1):107-10. doi: 10.3201/eid2101.140009.
Antibodies against Borrelia burgdorferi sensu lato among Adults, Germany, 2008-2011.
Wilking H, Fingerle V, Klier C, Thamm M, Stark K.
Abstract

To assess Borrelia burgdorferi sensu lato (the cause of Lyme borreliosis) seropositivity in Germany, we tested serum samples from health survey (2008-2011) participants. Seroprevalence was 5.8% among women and 13.0% among men; infection risk was highest among persons >60 years of age. Public health interventions, including education about risk factors and preventive measures, are needed.

Ticks Tick Borne Dis. 2015 Apr;6(3):221-7. doi: 10.1016/j.ttbdis.2014.12.006. Epub 2015 Feb 7.
Human seroprevalence against Borrelia burgdorferi sensu lato in two comparable regions of the eastern Alps is not correlated to vector infection rates.
Sonnleitner ST1, Margos G2, Wex F3, Simeoni J4, Zelger R5, Schmutzhard E6, Lass-Flörl C3, Walder G7.
Author information
Abstract
Seroprevalences were determined by testing sera of 1607 blood donors from North, East, and South Tyrol. In the Tyrols, the continental divide delimitates areas with high seroprevalences of IgG antibodies against Borrelia burgdorferi sensu lato in the North (7.2%) from areas with low seroprevalences in the South (1.5%). To determine Borrelia prevalences in unfed Ixodes ricinus ticks, 755 questing ticks were tested by PCR. Prevalences in nymphal and adult ticks were found to be 19.7% (n=132) and 21.5% (n=205) in North Tyrol and 23% (n=43) and 23.7% (n=376) in South Tyrol, respectively. Sequencing of 46 Borrelia-positive ticks yielded 74% Borrelia (B.) afzelii, 11% B. garinii, 7% B. lusitaniae, 7% B. burgdorferi sensu stricto, and 2% B. valaisiana infections. Distinct genetic clusters could not be delimitated on either side of the continental divide. This study describes occurrence and geographic dispersion of Borrelia spp. in the Tyrols, discusses possible reasons for significant differences in human seroprevalence, and indicates that prevalence of Borrelia in vector ticks is not a direct predictive factor for the local seroprevalence in humans.

 

[GcMAF Australia]

Otherwise I dont know how to answer your questions
A lot of doctors dont publish as they are overwhelmed with patients etc and governments dont always provide funds.
A lot of universities are not set up to examine some of these questions and they often concentrate on getting funds for the research that big Pharmacological companies are interested in.

 

[WillowJ]

Standard tests are only 30%, and IgeneX is only 90% accurate. So a negative lyme test is meaningless.

Does this mean everyone keeps testing until it's positive? At some point you empirically treat it?

He wants me to start with Doxycycline or Minocycline.

I apologize I haven't read the rest of the thread. If your tests are negative, I would go by other things. Did you have a known tick bite? Do you have clinical signs and symptoms that are better explained by Lyme than by other things? If the answer to these is no, I'm not sure you have a case for trying to treat Lyme.

For me the answer to those questions was yes (I also had a positive Lyme test, tho not a diagnostic one), and I tried it, and to be honest the benefit was minimal. And there were some complications. I can't honestly say whether I am better or worse now, for having taken the antibiotics. I went through some very tough months in the middle, and some symptoms that were likely from a tick-borne infection have disappeared. I still have ME, and the ME is worse (though there are additional things that could account for that).

You must do what you think is best. You are the one who will be affected for good or ill. Both the benefits and the risks have the potential to be high, and only you can decide what is a good choice for you. Not your doctor (though you should preferably have one you value the advice of), and not us.

All the best.

 

[kungfudao]

I think that this is a problem.

I do think that there's good evidence that mainstream testing is of some value but I'm largely agnostic on the debates around exactly how useful and what problems there may be with it. I know that I'm not willing to do all the reading and work necessary to keep up to data on all the areas of controversy and uncertainty here. Even if mainstream testing was of no value whatsoever, that would still not mean that alternative testing was any better and I do think it's a mistake to try to argue for the value of alternative testing by just criticising mainstream testing.

Picking apart Hinduism doesn't validate Christianity.

We're defining these labels in order to help us understand one another.

On being asked who would count as an alternative Lyme doctor I said:

I think that this is a problem.

I do think that there's good evidence that mainstream testing is of some value but I'm largely agnostic on the debates around exactly how useful and what problems there may be with it. I know that I'm not willing to do all the reading and work necessary to keep up to data on all the areas of controversy and uncertainty here. Even if mainstream testing was of no value whatsoever, that would still not mean that alternative testing was any better and I do think it's a mistake to try to argue for the value of alternative testing by just criticising mainstream testing.

Picking apart Hinduism doesn't validate Christianity.

This word you keep using Alternative testing ,doesn't even make sense,FDA approval in not a requirement.The testing is not alternative it is another test.Your way of wording things is suspect.
FDA approval is only required for tests that are marketed to other labs. Single lab tests, like those offered by IGeneX and Advanced Laboratory Services (ALS) do not require FDA approval. Instead, federal law requires that they undergo a rigorous validation process established by the Centers for Medicare and Medicaid Services (CMS) and Clinical Laboratory Improvement Amendments (CLIA). CMS and CLIA require developers to prove that their tests are accurate, precise, sensitive, and specific prior to marketing. Both IGeneX and ALS diagnostic tests are CLIA and CMS approved.

https://www.lymedisease.org/lymepol...sts-igenex-the-c6-and-the-new-culture-test-2/