Re: In Praise of Lyme Activists

a_weisman_at_yahoo.com
Date: 12/29/04 

Date: 28 Dec 2004 21:46:33 -0800

zipzip wrote:
> a_weisman@yahoo.com wrote:
>
> >
> > >Countless cases of Lyme that would never have
> > >been diagnosed on Steere's watch, thousands of lives that would
have
> > >been ruined, have been diagnosed and treated successfully.
> >
> > Yes with the standard treatment as they always have been. However
> those
> > who don't succeed on the standard Steere Yale treatment course are
> > still as f%^%ED as ever. Probably worse.
>
> the previous statement is completely fallacious and you know that.
> period. and i'm not pointing fingers, benevolently or malaciously,
at
> steere or klempner or any "llmd" per se.

Allow me to clarify:

I meant that the patients who fail Steere's standard treatment are
"still as f%^%ED as ever" BECAUSE what greatclod is saying is FALSE.
Notwithstanding his claim of the great successes of Lyme activists, it
is HARDER to get long term abx, IV at all, and there are fewer and
fewer "llmds" around.

I do NOT mean to endorse the standard treatment protocol EXCEPT to the
extent that it does OSTENSIBLY work for the large majority of patients,
and by that I mean probably 80%+ (leaving the unfortunate 10-20% who
become chronic and do NOT respond to tho "standard" treatment endorsed
by Steere, Yale, IDSA etc.).

I would also place an important caveat on the above statement, and that
is what I mean by OSTENSIBLY. I mean that OSTENSIBLY they are "cured"
HOWEVER we do not know whether the disease is actually
bacteriologically "cured" and if they are not there certainly is the
possiblity that the disease becomes sub clinical, dormant or latent and
might reemerge later, presenting perhaps with neurological symptoms, or
arthritic symptoms or neuromuscular symptoms, i.e., "late stage" Lyme
symptoms. And this might be difficult to diagnose because this presents
atypically vis a vis a classic Lyme infection (*if there is such a
thing) meaning that instead of seeing a tick bite, rash, flu symptoms
possibly accompanied by bell's palsy, high degree heart block and/or
even meningitis, the presentation is of "later stage" symptoms and thus
the clinician might not quickly (or ever) consider Lyme disease.

Now what is far less clear is the efficacy of longer term antibiotic
regimens in the 10-20% who failed the "standard" treatment. I agree
that longer term treatment is called for (although the first thing to
consider is whether the diagnosis is correct and whether it is
complete; are there, perhaps, co infections complicating the picture?
And/or some other health condition in addition to or instead of Lyme?).
However, there may be many causes of treatment failures using the
standard regimen and longer courses of antibiotics might or might not
be helpful.

I do believe that longer courses are often helpful.

I'm not sure how long is enough. I do know that many Lyme patients
reach a point where the long term antibiotics don't seem to be helping
them anymore, and trying different antibiotics or antibiotic
combinations doesn't seem to help either. And at that point the issue
may be that the long term treatment is causing problems (such as
systemic yeast infections) or at least not helping. That doesn't mean
the patients aren't really suffering; it doesn't even mean that there
is no persisting infection. What it does mean is that there may be an
end to the efficacy of antibiotic treatment well short of "cure."

And it is true that there are lots of Lyme patients under the care and
treatment of "llmds" aka "non IDSA treating doctors" who just don't get
better even on endless aggressive high dose antibiotics.

And that is the truth.

That's one reason that Lyme patients in droves turn to the nuttiest
remedies of great desperation: ICHT, foreign "clinics", RIFE, Colloidal
silver, Hulda Clark's zappers, Klinghardt, you name it. That's because
the abx aren't working at some point.

> many many people have been "cured" or put into a healthy state of
> remission with long term abx protocols. that much is certain and
> undeniably true.

Well I believe that some Lyme patients who have failed the "standard
treatment" have benefitted from long term treatment. There might be
some who are "cured" or in long term remission. And MANY are greatly
improved.

What the %s are and what the optimal course is, or the optimal
treatment in terms of drug choice or duration remains to be seen. It
might be that there is no such thing and that treatment needs to be
highly individualized. And that might be becacuse of the strain of
infection, or multiple strains simultaneously; the unique genetics of
the patient; other health conditions including but not limited to
tickborne coinfections; antibiotic resistance might be occurring; cyst
forms, and other pleomorphisms; etc. (the list of possibilities is
quite long).

> for those that do not repsond to long term abx protocols they are in
a
> bad state. they fall into the ambigously termed "post lyme syndrome"
> which Steere last wrote, in 2004, "should be treated as if it were
> Chronic fatigue syndrome or Fibromyalgia (sic)" :

Why the (sic) there? It looks to me like fibromyalgia is correctly
spelled and one usually uses "sic" to indicate an error such as a
spelling error in the original quoted text so that the reader doesn't
think the error is YOURS and so that you are accurately reproducing the
original.

Anyway, who cares what Steere says on the topic? His statement
certainly glosses over the nuances and myriad possibilities.

>
http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=15085185
>
> the previous statement by Steere CERTAINLY begs the question of
whether
> patients previous diagnosed with Chronic fatigue syndrome or
> Fibromyalgia diagnosis should be re-evaluated and treated as lyme
> (thought that has a contingent problem of diagnostic serology, which
is
> anothe argument entirely).

See if I were to quote you from above I might say "anothe (sic)
argument entirely." That would be a proper use of "sic"

Anywho, again there are other possiblities than simply retreatment for
Lyme. It might be a coinfection. Or some other health condition. Or
lots of things. And yes, retreatment or longer term treatment,
combination treatment, different drug choice treatment all should be
considered and perhaps tried.

> when these patients "fail" a month of antibiotics, and are labeled
with
> "post lyme syndrome" then what?

Yes. Then what? It certainly isn't clear what the right thing is and
there's no certainty to achieving succesful treatment then. Of course,
longer term treatment is often justified and worth a try rather than
leaving a crippled disabled miserable patient with no hope and not even
giving them a chance. But the best efforts might still fail.

My original point is simply that, notwithstanding the grandiose claims
of overwhelming "success of Lyme activis[m]" made by notsogreatclod,
those patients are really as F%^%ED as ever, or worse even.

Part of that is the fault of Steere and Yale and their ilk.

But part of it is also the fault of the failure of Lyme "activism" and
patient advocacy; along with the failures of the "llmds" aka "non idsa
treating doctors" whose actions have arguably made things worse not
better.

> it is specifically claimed that "post lyme syndrome" is an autoimmune
> like disease and, it should be treated as such.

There may be aspects of "autoimmunity" as part of the picture though I
agree with our friend greg gerber that it is really a low level
persisting infection triggering an ongoing inflamatory response of the
immune system that is destructive to the term "autoimmunity" and in
fact I really don't think the classic theories of "autoimmunity" are
very persuasive, well thought out, or backed up by much at all in terms
of science.

I think greg's theory is much more right. And not to take credit from
greg, his view is not original but I do think that it is right and is
growing in acceptance.

>it should not be
> treated like Chronic fatigue syndrome or Fibromyalgia, which is
treated
> by shysters and their arsenal of cox-inhibitors, beta blockers, off
> label use of kutapressin (which has been recalled by the
pharmaceutical
> supplier for that reason) and gabapentin drugs...

To be fair, the chronic fatigue doctors were struggling and trying to
do their best for the patients. It is ironic that CFS is now an
"accepted" diagnosis whereas it was once as controversial or more so
than Lyme is now. Remember it was pejoratively called the "yuppie flu"
and patients were dismissed as hypochondriacs and the CFS doctors were
treated as pariahs and quacks like the "llmds" aka "non idsa treating
doctors" are today. And CFS had its own Steere, Sigal, Shapiro rolled
into one (Stephen Strauss) and their own fights with CDC and NIH.

> let alone the chiropracters, herbalists, rife machines and all that
> unregulated, but billion dolllar business, supplement junk.

Desperation medicine. Including those who turn to the author of a book
by that name, who in my opinion is not much better than the klinghardts
of the medical world.

> rather these patients should be treated with proven autoimmune
> modulating drugs like plaquenil (see lupus, ra), minocycline (ra, and
> now being used in trials for MS and a similar cell wall inhibiting
abx
> for autism), or flagyl (see chrons)...

Maybe. Maybe not. Maybe none of the treatment modalities that we
possess today is at all adequate. Mixed success at best with Lyme
patients and patients with other diseases too.

> or IV gamma globulin...

I'm not so sure about that. Experimental for "autoimmune" drugs and
potentially dangerous. And not a great track record of success for
"autoimmunity" OR Lyme patients.

> but if the insurance companies don't want to pay for IV rocephin or
> zithromax for short terms they DEFINITELY don't want pay for IV
> gammaglobulin (unless the feds support emybronic stem cell research
to
> make red blood cells and gamma products in the lab and, in turn, the
> fat cats are making good money and filling their coiffers in bermuda
> and not paying taxes).

Well it is certainly not a proven treatment for Lyme or other health
conditions and most insurance contracts exclude experimental treatments
particularly when those treatments don't have a real good track record,
are potentially dangerous and are expensive to boot.

> if you REALLY read the stuff the "conservative lyme camp" has
> postulated and purported in the last few yeras they are really
burying
> themselves into a logical hole which they are eventually going to be
> buried in with dirty lies covering their coffins of foolheartyness.

Can you be specific? How so? What are the logical inconsistencies that
you think will bury them?

I'm not saying I disagree. I'm interested in what YOU are referring to
as it might provide interesting fodder for further discussion.
Seriously and sincerely, I might wholeheartedly agree, but you need to
be less general and much more specific.

> Fauci and the NIH are the most at fault, more so than anyone else for
> encouraging these shenanigans (while being on the payrolls of all the
> big pharmaceutical and insurance companies at the same time... see
>
http://www.latimes.com/news/nationworld/nation/la-na-nih22dec22,0,751...

Well yes and no. I don't think it is a grand conspiracy by any means.

Here is a link which works to that article by the way:

http://www.latimes.com/news/nationworld/nation/la-na-nih22dec22,0,7519657.story?coll=la-home-headlin

And the article doesn't talk about insurance industry ties; it does
talk about ties to big pharma, which in this case would mean that NIH
and its conflicted civil serveants would have an interest in
recommending drugs that the companies they work for sell. Which isn't
the case with Lyme; it is the opposite--they're recommending no further
treatments.

> talk about goverment negligence and incompetence for the community at
> large. what a shame. what a shame. it's truly criminal.

Yes the permissive conflicted culture sucks.

Even worse now religious right politics is driving decisions, such as
on stem cell research.

> in conclusion your pomposity and latter argument are false, plain and
> simple.

I'm not sure this was directed at me or the notsogreatclod but in any
event I hope that I have clarified my position. If this was directed at
me, I hope that the clarification explains to you what I meant, and I
can understand that it wasn't clear from what I wrote before.
Cheers, happy holidays and a happy new year zip!