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

[celeste]

I started abx treatment, empirically, 4 years ago, after 26 years of an ME/CFS diagnosis. I was so ill at that point, that treating was an easy decision, as I had absolutely nothing to lose. It made sense, clinically. I didn't have access to any testing at that point.

Treatment is tough, but I've gradually been making good progress over the past 4 years.

This year I tested through Armin labs and tested Elispot LTT positive for Cpn, Borrelia, Yersinia and Ehrlichia. So many years of being infected by bacteria which can surpress the immune system, though, mean I still test negative for antibodies.

I have no regrets at all about treating empirically.

 

[msf]

Esther, your bias (we've all got one, but it's best to try to adjust for it) led you into a fallacy: you said that there is no evidence that alternative tests are more reliable than mainstream ones. This is a very controversial issue, and to say there is NO evidence is just silly, but even if that was true, it wouldn't mean that the mainstream tests ARE reliable. And if you remember, the original poster's question was whether he should go ahead with treatment for a clinical diagnosis of Lyme, presumably because he tested negative for Lyme on whatever tests he had done. So you failed to answer his question.

To do so, you would have needed to ask the poster which tests they had had done, and then given your opinion/offered some evidence for the reliability of THAT test, and then asked the poster whether they had had any of the characteristic manifestations of Lyme disease, whether they had been bitten by any ticks, etc. Another good question would be about the doctor who had diagnosed the poster - which Lyme organisation do they belong to? Do they have a good reputation? Did they mention the specific symptoms that led them to make the diagnosis?

Next time, it might be a good idea to actually try to answer the question rather than just go off on your own agenda.

 

[Daffodil]

My son was desperate and in the same boat. He did 73 days of Doxcycline and Rifampin, it made him much, much, much, much, much, much, much worse. Don't do it!

if you get that much worse, doesnt that pretty much mean you have it?

 

[heapsreal]

Also mycoplasma , chlamydia pneumonia and cell wall deficient bacteria are all hard to test for.Sometimes after a clinical examination, it can be worth a treatment trial of abx as its probably going to give one, more answers than most tests do..

Until testing is 100%, i think a treatment trial is worth a shot.

 

[Esther12]

Esther, your bias (we've all got one, but it's best to try to adjust for it) led you into a fallacy: you said that there is no evidence that alternative tests are more reliable than mainstream ones. This is a very controversial issue, and to say there is NO evidence is just silly, but even if that was true, it wouldn't mean that the mainstream tests ARE reliable. And if you remember, the original poster's question was whether he should go ahead with treatment for a clinical diagnosis of Lyme, presumably because he tested negative for Lyme on whatever tests he had done. So you failed to answer his question.

"but even if that was true, it wouldn't mean that the mainstream tests ARE reliable"

And I never argued that it would mean that.

"to say there is NO evidence is just silly"

Happy to look at anything you think is meaningful evidence alternative testing is more reliable than mainstream testing.

To do so, you would have needed to ask the poster which tests they had had done, and then given your opinion/offered some evidence for the reliability of THAT test, and then asked the poster whether they had had any of the characteristic manifestations of Lyme disease, whether they had been bitten by any ticks, etc. Another good question would be about the doctor who had diagnosed the poster - which Lyme organisation do they belong to? Do they have a good reputation? Did they mention the specific symptoms that led them to make the diagnosis?

I disagree. I think that if a doctor claims that "only 30%, and IgeneX is only 90% accurate", then regardless of whether one has had a bullseye rash or not, one should not pursue treatment with that doctor, who cannot be trusted.

Next time, it might be a good idea to actually try to answer the question rather than just go off on your own agenda.

My answer was:

Sounds bad to me.

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

There's published research showing the Elispot LTT to have a 10% false negative rate and a false positive rate on par with the mainstream tests (1-2%), using samples known to be positive or negative based on serology. I think that qualifies as "evidence", and it has been discussed on this forum repeatedly.

Maybe I've missed a new study, is there any study which has compared alternative and mainstream testing under blinded conditions and found alternative testing to be more reliable or sensitive? When I last looked in to this there was not.

 

[duncan]

This may be the wrong question, and wrong for many reasons.

I will just focus on suggesting what may be a more appropriate question: What are the strengths and weaknesses of the different Lyme diagnostics?

@Esther12 , your position, in context, seems to assume conventional diagnostics are good, or at least, better, than some or all "alternatives". That is a dangerous assumption when you're dealing with a medical community where many key researchers either hold/held interests in the various diagnostic test providers, or have a vested concern in maintaining the status quo of those metrics.

Plus, well, those conventional diagnostics are plagued with their own limitations.

It's seldom advisable to engage in a pissing contest over which product is worse (as opposed to which is better). It certainly doesn't bode well for the consumers when such comparisons are made. Unfortunately, I fear that - generally speaking - this is precisely the type if contest we are speaking about here.

Here's a question: Which Lyme tests are responsible for the greatest number of harmful diagnoses - either false positives or false negatives - keeping in mind that over 300,000 are diagnosed with Lyme in the US alone every single year, and over $500,000,000. worth of Lyme tests are performed.

 

[Ema]

Maybe I've missed a new study, is there any study which has compared alternative and mainstream testing under blinded conditions and found alternative testing to be more reliable or sensitive?

There's no such thing as alternative testing.

They are all doing the SAME testing...namely ELISA, Western Blots and LTT type tests.

Some just do it better than others - not perfectly, but better.

And that is clear and supported by the facts.

 

[Esther12]

Here's a question: Which Lyme tests are responsible for the greatest number of harmful diagnoses - either false positives or false negatives - keeping in mind that over 300,000 are diagnosed with Lyme in the US alone every single year, and over $500,000,000. worth of Lyme tests are performed.

Unfortunately, we don't have any good evidence on this. There's almost no good evidence on any of the alternative testing. (Also, possibly it would be fairer to look at percentage of results leading to harmful/missed diagnoses).

Nonetheless, we have had decades of alternative doctors claiming that a large percentage of patients with CFS-like symptoms really have Lyme and that alternative testing shows this to be the case. In all this time, we've had no good evidence that there claims are true, despite the fact that if it were true gathering such evidence would be relatively easy. I've seen a lot of patients waste their time and money on these tests and interventions and I feel bad about that. I've also seen a few report recovering, although it's difficult to know if that's anything more than what we see with things like the Lightning Process.

There's no such thing as alternative testing.

They are all doing the SAME testing...namely ELISA, Western Blots and LTT type tests.

Some just do it better than others - not perfectly, but better.

And that is clear and supported by the facts.

I did spend a lot of time looking in to Lyme testing and treatment a few years back. Once I realised it was fairly clear that the alternative testing/analysis was not useful I stopped spending so much time looking in to it. If you have any good evidence that IgeneX's testing is better than mainstream testing/analysis then please let me know what it is.

 

[Valentijn]

Maybe I've missed a new study, is there any study which has compared alternative and mainstream testing under blinded conditions and found alternative testing to be more reliable or sensitive? When I last looked in to this there was not.

There is no accurate mainstream testing. The closest thing to it has a 50% false negative rate. Using that as a basis for comparison would be meaningless. If a test with a 50% false negative rate was used as a standard, any test which is actually more accurate would seem to give a high rate of false positives, even though it would just be picking up actual cases missed by the current mainstream tests.

For research purposes, the best approach is to compare traditionally cultured blood samples with known positive or negative status to the new testing method. Culturing is very accurate, but also too expensive and time-intensive to use in routine Lyme testing. To the best of my knowledge, the traditional culturing for Lyme is not available commercially to patients or their doctors, and is rarely used in research as well.

The study I mentioned is from 2012, and I have posted about it repeatedly. Or are only newer ones valid for some reason? It's at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474945/ . IgM and IgG serology (not culturing) from an unaffiliated lab were used to determine accuracy. False positive rate is given in Table 1 as 1.3%, and false negative rate is given as 10.6%. The results of these tests are generated automatically - it is not done by the researchers, so I'm not sure how blinding would be applicable.

 

[duncan]

One question needs to be what resources are being invested to build better TBD diagnostics. Relative to Lyme, better at diagnosing it sooner in early stage, qualifying stages, distinguishing old infections from new, and - arguably most important, at least for some - distinguishing active infections from resolved.

Some times, it is the providers of new methods that hold the most promise...Isn't this the way of the world in many businesses?

Most of the diagnostic tests research efforts coming out of the NIH these days are for acute testing, i.e, more sensitive/specific testing earlier.

Accordingly, a fix to the broad dilemma doesn't seem imminent from traditional sources.

So, unfortunately, when anyone is trying to get a handle on whether they have Lyme, for the time being, they may feel a need to look over more than what mainstream Lyme has left on the table.

 

[Never Give Up]

if you get that much worse, doesnt that pretty much mean you have it?

I believe that Lyme is real, that some people have it, and should be treated for it. I do not believe in continuing a treatment, which is clearly making a person worse, based on a doctor's belief that a person has an infection. At this point I would require multiple positive Lyme tests to consent to it's treatment.

Saying that if it makes you worse, it means you have, it is circular logic. Medical and religious history is littered with such circular logic which benefited some, but certainly not those upon whom it was used.

I shudder to think where my son would be right now had I believed that circular logic.

That experience did, however, lead me into the realm of infectious disease theories about his illness. After studying the subject the subject as well as a person with a 30 year old science degree can, I found an ME doctor and took my son to see him. He tested positive for an active enteroviral infection. He began antiviral, immunomodulators, and POTS meds. He had some symptom exacerbation for about a month, then he started to improve. A year later his quality of life is substantially better.

Had I followed that circular logic of if it makes you worse it proves you have it, he never would have come so far.

I say, if it makes you better, keep doing it.

 

[Esther12]

There is no accurate mainstream testing. The closest thing to it has a 50% false negative rate. Using that as a basis for comparison would be meaningless. If a test with a 50% false negative rate was used as a standard, any test which is actually more accurate would seem to give a high rate of false positives, even though it would just be picking up actual cases missed by the current mainstream tests.

For research purposes, the best approach is to compare traditionally cultured blood samples with known positive or negative status to the new testing method. Culturing is very accurate, but also too expensive and time-intensive to use in routine Lyme testing. To the best of my knowledge, the traditional culturing for Lyme is not available commercially to patients or their doctors, and is rarely used in research as well.

The study I mentioned is from 2012, and I have posted about it repeatedly. Or are only newer ones valid for some reason? It's at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474945/ . IgM and IgG serology (not culturing) were used to determine accuracy. False positive rate is given in Table 1 as 1.3%, and false negative rate is given as 10.6%. The results of these tests are calculated automatically - it is not done by the researchers, so I'm not sure how blinding would be applicable.

I think that the 50% false negative figure is either out of date, or based only on testing early in the infection. Early in the infection the testing is (I think) still pretty poor, but as most of the alternative vs mainstream debate relates to people who've been ill for some time, that's not terribly relevant. If you were using the 50% figure I think that would explain why I didn't understand your point about alternative testing being shown to be more effective. The paper you posted does not seem to support the 50% figure. (I think that's where the confusion was? I could have missed your point?)

You don't need a test shown to be valid in order to compare testing under blinded conditions, as was done with XMRV. The problems with XMRV testing were a pretty good illustration of the potential for problems with a new blood test, and a guide as to how to test the tests.

 

[Valentijn]

Saying that if it makes you worse, it means you have, it is circular logic. Medical and religious history is littered with such circular logic which benefited some, but certainly not those upon whom it was used.

It depends on what the "worse" is. If it's a Jarisch-Herxheimer reaction, then worse does mean you have it, since that reaction occurs in response to spirochetes (most notable Syphilis and Lyme) dying off and releasing endotoxins. But that would involve fevers, chills, hypotension, and maybe some other very specific symptoms. If ME symptoms other than OI were getting worse, that would suggest it was something other than a Jarisch-Herxheimer reaction. And of course, the third category for symptoms would be side-effects of the drugs themselves.

He tested positive for an active enteroviral infection. He began antiviral, immunomodulators, and POTS meds. He had some symptom exacerbation for about a month, then he started to improve. A year later his quality of life is substantially better.

Interesting ... from what I recall, antibiotics can allow fungal infections to flourish because the bacteria aren't as able to keep the fungi in check. Perhaps something similar happens in regards to viruses when antibiotics are used?

 

[Arise]

For research purposes, the best approach is to compare traditionally cultured blood samples with known positive or negative status to the new testing method. Culturing is very accurate, but also too expensive and time-intensive to use in routine Lyme testing. To the best of my knowledge, the traditional culturing for Lyme is not available commercially to patients or their doctors, and is rarely used in research as well.

I was just goint to ask about why these methods aren't used more frequently. I don't know much about lyme but I'm suprised that lumbar puncture doen't seem to be used often?

 

[msf]

Esther, did the doctor say that about the tests though? Or were you just jumping to conclusions as usual?

 

[Daffodil]

I believe that Lyme is real, that some people have it, and should be treated for it. I do not believe in continuing a treatment, which is clearly making a person worse, based on a doctor's belief that a person has an infection. At this point I would require multiple positive Lyme tests to consent to it's treatment.

Saying that if it makes you worse, it means you have, it is circular logic. Medical and religious history is littered with such circular logic which benefited some, but certainly not those upon whom it was used.

I shudder to think where my son would be right now had I believed that circular logic.

That experience did, however, lead me into the realm of infectious disease theories about his illness. After studying the subject the subject as well as a person with a 30 year old science degree can, I found an ME doctor and took my son to see him. He tested positive for an active enteroviral infection. He began antiviral, immunomodulators, and POTS meds. He had some symptom exacerbation for about a month, then he started to improve. A year later his quality of life is substantially better.

Had I followed that circular logic of if it makes you worse it proves you have it, he never would have come so far.

I say, if it makes you better, keep doing it.

yes i admit it is faulty logic and i totally understand where you are coming from. i guess i was desperate enough, on deathbed, had tried many treatments for years, etc...so i just decided i will listen to this one doctor, who believes this is caused by intracellular bacteria. i also had to put a lot of my own beliefs aside to do it.....but i had heard a lot before about the theory that autoimmunity in general may be caused by intracellular bacterial infections....so i just went ahead with it. it helped that this doctor has been researching CFS for the better part of 30 yrs, has family member(s?) who are ill, and pretty much works on CFS 24/7.

there is also the fact that although i tested negative for years, even at Igenex, i did test positive with the LTT test. that helped a little.

there are other things that can be done to ameliorate the worsening on antibiotics. one can take a lower dose, try herbals, take immunoglobulin, take anti inflammatories...whatever....but i guess you would really have to believe somewhat in the theory first. in many ways, it is probably harder when its your child than if its yourself you are experimenting with, i am sure.

 

[Esther12]

Esther, did the doctor say that about the tests though? Or were you just jumping to conclusions as usual?

I wasn't there, but if this was the information a patient was using to make judgements about a doctor's suggested course of action, then I think it's fair to assume that something has gone badly wrong.

 

[msf]

So if it was the patient he came up with the figures, then the patient shouldn't allow the doctor to treat him? I don't see the logic.

 

[duncan]

@Arise , all testing for Lyme suffers from limitations. As Valentine noted, culturing Borrelia is expensive and time consuming. Compound that with the fact that it is very seldom accomplished outside of the bull's eye rash - Bb disseminates into tissue, and does not linger in the blood.

CSF exams are also unreliable.

Think of Syphilis. Lyme arguably isn't as bad as Syphilis to culture, or diagnose definitively, but it runs a close second.

 

[Valentijn]

I think that the 50% false negative figure is either out of data, or based only on testing early in the infection. Early in the infection the testing is (I think) still pretty poor, but as most of the alternative vs mainstream debate relates to people who've been ill for some time, that's not terribly relevant. If you were using the 50% figure I think that would explain why I didn't understand your point about alternative testing being shown to be more effective. The paper you posted does not seem to support the 50% figure. (I think that's where the confusion was? I could have missed your point?)

The standard in Lyme testing is to use a two-tiered approach. This is the CDC approved protocol. In the first step, the Enzyme ImmunoAssay (EIA/ELISA) or Immunofluorescence Assay (IFA) is used. If the first test is positive, testing proceeds to the 2nd step, the Western Blot. If the ELISA is negative, testing stops there and the Western Blot is not used.

http://cid.oxfordjournals.org/content/25/Supplement_1/S52.long shows that 65% of the chronic Lyme patients who tested negative on the ELISA also tested positive on one or more of the Borrelia-specific bands on the Western Blot. These are bands which are not known to cross-react with any other infections.

At http://www.cdc.gov/lyme/faq/ the CDC (sort-of) implies that false-negative rates are under 35%:

You may have heard that the blood test for Lyme disease is correctly positive only 65% of the time or less. This is misleading information.

But a correct (true) positive of 65%+ only suggests that false positives are 35% or less, and says absolutely nothing about true or false negative results. They also do not say what the accuracy numbers actually are, and do not cite to any source for their claims. They also do not specify the rates for the first step of the test in isolation, which is where testing usually stops.

Additionally, the CDC has recently increased the estimated number of new cases of Lyme per year by a factor of ten, from 30,000 to 300,000: http://www.cdc.gov/media/releases/2013/p0819-lyme-disease.html

We know that routine surveillance only gives us part of the picture, and that the true number of illnesses is much greater,” said Paul Mead, M.D., M.P.H, chief of epidemiology and surveillance for CDC’s Lyme disease program. “This new preliminary estimate confirms that Lyme disease is a tremendous public health problem in the United States, and clearly highlights the urgent need for prevention.

This would seem to suggest that even some at the CDC believe that there is a major problem with testing and/or reporting.