Page 2 of 6

Re: A Modest Proposal

Posted: Tue 22 Dec 2015 15:56
by Henry
" People infected with Borrelia - or other TBD's like babesia and bartonella - by definition have explanations for their symptoms."

Your argument is circular. Most --if not all-- of the people you are referring to do not have any objective tests results to indicate that they really are infected " with Borrelia or other TBD's like babesia and bartonella", despite the existence of long-used reliable tests for diagnosing such infections -- which you refuse to accept as being reliable. Under such conditions, wouldn't a reasonable person consider the possibility that their symptoms are due to other causes? I fail to understand how the view you are promoting can benefit such people in the least? You and Lorima have nothing positive to offer -- nothing that can help the people you claim to be concerned about. If you examine the IOM report that I cited, you will find that it is a serious multidisciplinary effort to address a problem (chronic pain) that effects about 30% of the population of the U.S. Francis Collins and the NIH are to be commended for being willing to "step up to the plate" to make a concerted effort in that regard. Surely, you must find that to be encouraging? Or, would you rather not have the controversy end, which then would render you and your views useless?

Re: A Modest Proposal

Posted: Tue 22 Dec 2015 16:30
by Lorima
I think you are conveniently forgetting that Duncan and I (who are not coordinating our comments here) do not have the option of moving on to some other field of controversy, because we are dealing with the actual infection, not just manipulating words. If you had your memory intact, you would know that Duncan is highly CDC positive,and my family LD patients have antibodies highly specific for Bb.

I guess you can argue that we are extremely rare examples, or go to the next step and say that patients who have been treated IDSA-style are guaranteed to be cleared of all Bb. But I don't think the evidence (as opposed to the dogma) supports either of those notions.

I've been thinking about that very appropriate term, dogma. Just as the phrase "a modest proposal" brings to mind a famously outrageous satire that no one could mistake for an actual proposal, "dogma" brings to mind the Roman Catholic Church.

This should give us pause. There are a whole lot of people in all walks of life who were brought up Catholic and even went to Catholic schools. What if the term "dogma" has lingering connotations, to even the lapsed, of something good and virtuous, instead of the secular and Protestant connotation of mindless conformity that disables scientific thought?

I guess I should explore other shorthand terms for blind following, that are less culturally loaded.

Re: A Modest Proposal

Posted: Tue 22 Dec 2015 16:43
by duncan
Well, Henry, first of all, I like to think of whatever the outcome, I am not "useless".

Secondly, you suggesting I've resorted to circular logic is, again, ironic given the history of many supporting current Lyme diagnostic and treatment protocols. Check your history. (although I am still waiting on your claims to be reading the C6 history).

Third, I am 2T positive. Usually have been for over a decade. Moreover, I am C6 positive - and always have tested so since diagnosed. So clearly your "if not all" qualification doesn't hold up to scrutiny. Please explain. While you're at it, please explain how my C6 values could actually RISE for years after treatment?

I have more. However, it would appear you are very busy and don't have time to address some questions or issues appropriately. For instance, it would seem you did not carry thru on researching the C6; you at least did not respond to those posts as I thought you might. You also failed to explain how the 2T can be so accurate when some of its supporters are recommending results be discounted based on geography. So I will keep my points to a minimum till you catch up.

Re: A Modest Proposal

Posted: Tue 22 Dec 2015 17:22
by Henry
Patients who have been correctly diagnosed and treated for Lyme disease often remain seropositive for a long time thereafter. This does not necessarily mean that they are still actively infected. The diagnostic test used are not designed to monitor the efficacy of therapy. Borrelia posses several intergrins on their surface that enable whole cells -- or their remnants-- to bind tenaciously to mammalian cells, where they are still able to stimulate the immune system to make antibodies in the absence of active infection. Under such conditions, it is entirely possible that symptoms may be due to other causes that have nothing to do with Lyme disease. Although antibodies vs C6 were once thought to be characteristic of early infection, such antibodies can be detected in patients with Stage 2 and Stage 3 Lyme disease as well who are positive by 2T testing as well (see recent article that I cited by Schreifer). This is really no different than what occurs with other infectious diseases. For example, when you get the flu, antibodies against that virus are detectable in the blood for long periods of time -- years in some cases-- after the infection has been eliminated. However, there is a difference between the amounts of antibodies detected during active infection and the amounts detected after the infection has been cured or cleared. If quantitative tests were available -- or used-- for the diagnosis of Lyme disease, we would be able to demonstrate the same phenomenon. Obviously continuing to treat for an infection that is not active is not going to make these background antibodies disappear -- nor is it likely to resolve symptoms due to other causes. That's common sense -- not dogma. I think I have said enough on this topic. My comments seem to be falling on "deaf ears".

Re: A Modest Proposal

Posted: Tue 22 Dec 2015 17:32
by duncan
Your explanation for the C6 is wrong. I don't even need to address the other speculation.

Re: A Modest Proposal

Posted: Tue 22 Dec 2015 17:50
by Lorima
Re Henry's question about what I'm offering to the sick:

As I said very recently, the most important thing for people with Bb infections to know, is that the conventional medical view is wrong about diagnosis, prognosis, and treatment of LD.

It's a huge step for most educated people to realize how many expressed medical certainties are just make-shift. I call these "placeholder fictions." Unfortunately they sometimes harden into spurious certainty, and then progress in the academic field stops, blocked by an illusory declaration of "mission accomplished."

None of us likes to know this. It is frightening. Doctors really hate it - their sense of professional and psychological comfort, in a scary job, depends on believing they are doing the "right" thing for their patients. (Or at least for public health, as when they deny antibiotics for a probable bacterial infection until they have proof via test results).

If I can help anyone with LD take that big step, toward realistic disillusionment with IDSA's approach, that is good.

I tell them to get Western blots with all bands reported. They can use Stony Brook if they or their MD are leery of a commercial specialty lab.

Because the clinical science is mostly undeveloped, what to do next is problematic. I sometimes talk through a person's illness with them and tell them what I would do in their shoes, but as I said before, this is entirely dependent on the details and can't be fool-proofed. I sometimes tell them it doesn't sound like LD to me-I don't think every case of arthritis or neuropathy is caused by Bb, even among nature-lovers in my hyper-endemic locale.

Anyway, since I'm a PhD rather than an MD, I technically shouldn't be dispensing specific medical advice, and neither should you. I'm not doing it on a mass scale. You are. But we can all talk to our friends, about anything.

Debunking faulty science is part of my profession. That the LD foundational literatures is so wrong that a layman can see it, is your problem, not mine.

In summary, it is very useful to keep explaining why IDSA's approach is not convincing scientifically. It leads to correction of many differential diagnoses from which LD has been prematurely excluded.

Re: A Modest Proposal

Posted: Tue 22 Dec 2015 18:10
by Henry
I understand, Lorima. All the experts on Lyme disease are wrong. How convenient for you and Duncan. That large numbers of people agree that 2 + 2 = 4 doesn't make for a conspiracy except for those who erroneous believe otherwise. It is a reflection of a consensus with respect to the truth based on the best available evidence. Once again, neither of you have anything useful to offer to those you claim to want to help.

Re: A Modest Proposal

Posted: Tue 22 Dec 2015 18:22
by duncan
"All the experts..."?

Remember, Henry: Accuracy counts. You said so. :)

Also, not for nothing, but it was you who was tossing about unfounded "conspiracy" allegations re: Lorima and me.

I am still waiting your answers to previous questions/issues.

Re: A Modest Proposal

Posted: Tue 22 Dec 2015 18:49
by Lorima
To the contrary, it's incredibly inconvenient for me, my family, Duncan, and all Bb infected people who don't match Steere's model, which became a bundled belief system for the medical establishment. I used to trust medical consensus implicitly. Now that I've explored the sausage factory, I'm more careful.

I guess you think that we are just people who like to argue. Do you think we are just pretending to have the real disease to manage, for the sake of having something to argue about? No, I guess you think we are sincerely deluded about these illnesses. That belief is "convenient" for you and your team. Maybe because you manage your beliefs by expediency, you think everyone else does too.

I too was astonished that medical consensus can be so wrong, for so long. You seem to be saying "that couldn't happen here." But it has. And there are plenty of other examples that can be studied, to reveal the various mechanisms by which it can happen.

You've gotten so many facts wrong (including uncontroversial facts), that it's apparent you have to fall back on faith in the consensus. You don't have the intellectual tools to analyze the actual evidence (as opposed to the experts' unwarranted assertions about it.) That's not shameful, just a fairly common human limitation.

Where you err is in assuming because you can't do it, no one can.

Re: A Modest Proposal

Posted: Tue 22 Dec 2015 19:40
by Henry
What are you referring to when you say "Steere's model"?