• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

msf

Senior Member
Messages
3,650
Duncan, I wouldn't take the study too literally. I haven't read the whole paper, but it seems to me that circular logic is once again at work: we tried our test in an area where we know they have little Lyme, and came up with lots of positives, so they must be false positives! And we know the area has little Lyme because we used the test to determine the number of people with Lyme...

So, in this case, circular and contradictory! A true IDSA study then!
 

Esther12

Senior Member
Messages
13,774
So Esther, you are against clinical diagnoses when they confirm Lyme, as in the original poster's case, but not when they rule out Lyme, as in the study I quoted. Once again I fail to see the logic of your position.

I think that you've misunderstood my position. I'm concerned by the inaccurate information in the first post, and feel that there is reason to be cautious about a clinical diagnosis of Lyme from a doctor who makes unsupported claims about testing. I hadn't meant to make any judgement about the use of clinical diagnosis in the paper you cited, and thought you were just posting it to highlight a potential problem with mainstream testing. I only had access to the abstract.
 

msf

Senior Member
Messages
3,650
Ugh, we've already been through that - you don't even know that he made any such claims! That's what I mean about bias!
 

Esther12

Senior Member
Messages
13,774
Ugh, we've already been through that - you don't even know that he made any such claims! That's what I mean about bias!

I don't know that he made such claims, but as I said:

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

Senior Member
Messages
3,650
If it was your advice a patient was using to make judgments about a doctor's suggested course of action, then I think it's fair to assume that something has gone badly wrong.

So, a quick recap:

1. someone asked for advice about a clinical diagnosis of Lyme.

2. You told him to leave that doctor without asking any questions about said doctor.

3. You then contested a claim that was not relevant to the issue at hand, namely whether mainstream tests are less sensitive than alternative tests.

4. I pointed out that you hadn't answered the question at hand, which was whether the patient should trust the clinical diagnosis of Lyme. I also pointed out that you didn't know that the doctor had made any claims about mainstream vs alternative testing.

5. You didn't respond to the first point, and then, rather than admitting that you should have asked the poster whether his doctor had said that about testing, you tried to imply that, even if the doctor hadn't said that, the very fact that the poster seemed to believe that meant that the poster shouldn't see any Lyme doctor (this is the only sense I could make of your remark).
 
Last edited by a moderator:

Esther12

Senior Member
Messages
13,774
If it was your advice a patient was using to make judgments about a doctor's suggested course of action, then I think it's fair to assume that something has gone badly wrong.

So, a quick recap:

1. someone asked for advice about a clinical diagnosis of Lyme.

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

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.

2. You told him to leave that doctor without asking any questions about said doctor.

Sounds bad to me.

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

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

3. You then contested a claim that was not relevant to the issue at hand, namely whether mainstream tests are less sensitive than alternative tests.

[Not sure what that refers to]

4. I pointed out that you hadn't answered the question at hand, which was whether the patient should trust the clinical diagnosis of Lyme. I also pointed out that you didn't know that the doctor had made any claims about mainstream vs alternative testing.

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.

5. You didn't respond to the first point , and then, rather than admitting that you should have asked the poster whether his doctor had said that about testing, you tried to imply that, even if the doctor hadn't said that, the very fact that the poster seemed to believe that meant that the poster shouldn't see any Lyme doctor (this is the only sense I could make of your remark).

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.

I do think that your summary is misleading.

If you think it's ridiculous to claim that "there is no evidence that alternative tests are more reliable than mainstream ones" then please just explain what evidence there is that you think shows alternative tests are more reliable than mainstream ones.

I guess you could argue that there is some BAD evidence, but I think it's fair to be dismissive of poor quality evidence of the sort that has a history of misleading people.
 
Last edited by a moderator:

msf

Senior Member
Messages
3,650
Hmm, you think my summary was misleading, but you substantiated it by cutting-and-pasting each point I was referring to (3 refers to your second comment in this thread).

I don't think it is fair to be dismissive of poor quality evidence, since it is only poor quality in your opinion. It is not poor quality in the opinion of most ILADS doctors, who know slightly more than you about Lyme, so how about pointing this out?
 

Esther12

Senior Member
Messages
13,774
Hmm, you think my summary was misleading, but you substantiated it by cutting-and-pasting each point I was referring to (3 refers to your second comment in this thread).

I cut in the quotes as that seemed a more useful approach than just having your views of other's posts.

I don't think it is fair to be dismissive of poor quality evidence, since it is only poor quality in your opinion. It is not poor quality in the opinion of most ILADS doctors, who know slightly more than you about Lyme, so how about pointing this out?

I'm not interested in appeals to authority anyway, but it seems particularly odd to appeal to authority in defence of alternative approaches to Lyme.

Better to look at the evidence, and then discuss and debate it. If you want to argue that there is good evidence that alternative testing is more accurate than mainstream testing I'm happy to listen to what you have to say.
 

msf

Senior Member
Messages
3,650
Oh, and one more time, because you obviously find this hard to understand: the relative sensitivity of 'mainstream' and 'alternative' tests is not germane to the topic of this thread, which was whether the original poster should have confidence in a clinical diagnosis of Lyme. Asking whether the poster's doctor believed 'alternative' tests to be more sensitive would have been germane, so of course you failed to ask this and just went off our own agenda.
 

Esther12

Senior Member
Messages
13,774
This was the OP:

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

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.

It wasn't "can Lyme be diagnosed clinically, and if so how?"

I don't think there is any point in debating with you, because you don't seem to understand basic logic or objectivity - unfortunately, some people may not have had enough exposure to your posts to realize this.

I'm sure that your incisive picking apart of my posts will now provide ample warning. Good work.
 

msf

Senior Member
Messages
3,650
Did you answer any of the questions in the OP? Remember, questions are the ones with question marks at the end.
 

Esther12

Senior Member
Messages
13,774
Did you answer any of the questions in the OP? Remember, questions are the ones with question marks at the end.

The second and third questions followed on from information I pointed out was inaccurate. In response to the first question I said: "Personally, I'd leave this doctor. Good luck."
 

msf

Senior Member
Messages
3,650
No, they didn't, as I have pointed out several times, the relative sensitivity of the two sets of tests does not affect the following questions - if you read it carefully, the question actually means this: none of the tests for Lyme are sufficiently sensitive, so does this mean everyone keeps testing until its positive?
 
Last edited by a moderator:

Esther12

Senior Member
Messages
13,774
if you read it carefully, the question actually means this: none of the tests for Lyme are sufficiently sensitive, so does this mean everyone keeps testing until its positive?

I only read the words that were written.

Does this mean everyone keeps testing until it's positive?

I don't think that even those who argue that IgeneX's testing is worthwhile would want to try to defend the claim that

Standard tests are only 30%, and IgeneX is only 90% accurate.
 

Esther12

Senior Member
Messages
13,774
In Australia the doctors are finding that with the ME/CFS people, just about everyone has Lyme Disease
It will turn out to be the same in the US and elsewhere

If there were good evidence that were true, it would be a major breakthrough. Unfortunately, lots of alternative doctors have been making these claims over the last couple of decades, and no good evidence to support their claims is ever presented. It is almost certainly just quackery stemming for poor quality testing I'm afraid.
 

Valentijn

Senior Member
Messages
15,786
It is almost certainly just quackery stemming for poor quality testing I'm afraid.
It's way past time for you to support your statements. Please cite to reputable sources demonstrating that 1) mainstream testing is accurate, and 2) alternative tests are inaccurate.
 
Last edited by a moderator:

Esther12

Senior Member
Messages
13,774
It's way past time for you to support your statements. Please cite to reputable sources demonstrating that 1) mainstream testing is accurate, and 2) alternative tests are inaccurate.

I posted the old study testing IgeneX's testing under blinded conditions, and that's the only such assessment of IgeneX's testing I've found: http://www.amjmed.com/article/S0002-9343(00)00701-4/abstract . We already discussed a study which assessed some mainstream testing under blinded conditions - and I've never made any claims about mainstream testing other than it being of some value and there being no evidence that alternative testing brings any advantages. I'm more interesting in criticising the claims made about alternative testing than saying how wonderful mainstream testing is - this is also a simpler argument.

Do you think it's acceptable for doctors to be telling patients that "with the ME/CFS people, just about everyone has Lyme Disease"?
 
Last edited by a moderator:

Valentijn

Senior Member
Messages
15,786
Do you think it's acceptable for doctors to be telling patients that "with the ME/CFS people, just about everyone has Lyme Disease"?
That's what a forum member is claiming, not a doctor.

And I'm not sure how much you can get from the abstract of a paywalled article. Personally, I find it to be quite useless unless I can read all of it.
 
Last edited by a moderator: