Re: Pat Smith and the Reign of Error

On May 22, 2:52 pm, the 3rd Man <derdrittemann2...@xxxxxxxxx> wrote:
On May 22, 3:12 pm, chronichel...@xxxxxxxxx wrote:


Personally, I am trying to keep an open mind about whether "chronic
Lyme" exists or not. Assuming that I was correctly diagnosed,
something continues to drive a recurrence of symptoms with me. And
episodic...I recently relapsed after almost eight months of being
"clean". I have been doing this act for about ten years, now. I have
been trying to exercise my *** off...to remove any possibility of
just atrophy...or lethargy, psychologically-driven anything...and I
can tell you that the symptoms returned suddenly and with little
warning. I had been feeling great, was not stressed at all...in very
good spirits and outlook.

In other words, seems damned real to me.

That's my point precisely, that I still could see a situation of
relapsing nature. However, from a biological point of view I don't see
how it is possible that someone would go on antibiotics for months
with out any improvement (well obviously unless is an antibiotic that
doesn't have any effect on the bacteria). Actually what I hear most
often is the "excuse of a herx reaction" (so in reality many are
actually feeling worst). I can't think of any other bacterial
infection that behave this way. Again not to say that in some
instances the use of long term antibiotics is warranted. but I'm not
aware of any situation were a patient (with a bacterial infection)
would have to wait months to see improvement. Now in terms of I.V
versus orals, to me is pretty much of a scam. I could even understand
I.V in situations when the load of bacteria is so high that there is a
sense of urgency, which would be probably short term followed by
orals. Specially considering this is a slow growing bacteria.


Whether this is bacterial or merely inflammatory...to me, doesn't much
matter (on a very personal level). What it means is that I am fairly
severely limited in daily living activities. And...these symptoms
appeared first early in the illness...that is, the ones that just
reapppeared.

My take on that is the same, and my story is similar as well. The
issue is that it may just not be only inflammatory but it could
involve imbalance of neurological pathways ( but both the immune and
neuro systems are intertwined). Meaning (IMHO) that just treating
inflammation is not the answer.

But part of the perception problem, I think, lies in the simple lack
of recognition on the part of some in the activist community that the
existence of these symptoms are really not being denied.

There are a variety of other possible explanations, though, including
permanent damage, or the awakening of some other disease process
incidental to the original infection.

Exactly, and some (a lot) of quacks are taking advantage of that.
Since Lyme can cause everything and anything.

What I think is a legitimate issue...on the part of the chronic
advocates...is that the IDSA would remove antibiotics from them and
not provide viable alternative therapies...at the same time insisting
that the numbers of the chronic population are relatively small. If so
few people are affected, then why worry so much about the overuse of
antibiotics? Even if the purpose is simply to reduce inflammation?

I think the fear is actually the health of the patients due to the
side effects of drugs. Specially, when you see so many physicians, NP,
chiros etc used it as a money making scheme. I agree, they should
provide alternative therapies and give it the appropriate significance
(i.e. so people don't have to struggle when they apply for
disability). I don't think they are opposed to the use of antibiotics
as anti-inflammatory, they just believe they are better ways to go
about that. Again, I don't think is just an issue of inflammation, a
better approach maybe is immunomodulation (which also abx can help
with). If you noticed, the Klempner study wasn't about whether chronic
lyme existed or not, but about whether the use of long term
antibiotics was beneficial for those patients with persistent
symptoms.


I think the rigidity of the response on the part of the mainstream is
a legitimate and puzzling problem...and it seems, at times, to be
indicative of an attitude that is almost mechanical in nature, and
indifferent to human suffering.

Yes, and that's why I feel that letting the politicians know about
that is important.


What's interesting is that in Marie McQuhae's case their parents are
convinced that her daughter has chronic lyme, and they alluded to
their certainty based on test results from american labs, I'm going to
go out on a limb and guess that these results were from labs such as:
Igenex, Fry, or Bowen.

Yes. And I will tell you, that even though I am a pretty good sized
guy... over six feet...(athletically built, no shrinking
violet)...just because of the damned diagnosis I have been subjected
to the same "malingerer" treatment by mindless medical professionals
who are more interested in getting to the next patient, processing the
next unit...than in truly healing and helping.

I would imagine that women are even more vulnerable to this type of
"treatment".

Yes true, I'm 6 and used to be very athletic. I have a real issue with
a lot of Drs and even scientists. However, because of that (and just
like you), I haven't fallen for irrationality.

And...I suspect that there is a part of everyone that simply doesn't
WANT to believe that your life can be so completely destroyed by the
bite of a bug so small that it is nearly impossible to detect...they
can't believe that someone can become so ill...because they would
rather NOT believe that.

I'm not sure that is the reason, malaria is transmitted by a mosquito
and that doesn't imply that Drs don't believe it can make someone
really ill. Is more a matter of not having something tangible,
something definitive like death (extreme) for example.

In other words, even if the approach was wrong, I still think that
this whole campaign is beneficial. At the very least I have heard from
other physicians their interest in this phenomenon and most of them
agree is not chronic lyme but are intrigued with this whole
controversy. At least one expert in I.D back in Connecticut has been
very interested in finding out why this all came about and he agrees
is not a matter of just a few people with psychosomatic symptoms.-

Yeah. Problem is, though...that other physicians, some I have
encountered, are also visibly leery of the entire issue, only vaguely
understanding what is going on with it...and seem to have an almost
compulsive urge to deny fairly even the most straightforward and clear
cases...and would rather treat Lyme patients as psych cases.

Yes but I believe those are the ones who would be skeptical any way.
Meaning that this whole controversy haven't necessarily polarized them
(or maybe it has).

I am going to assume that this is largely due to the zaniness
surrounding the issues...and a direct impact of some of the more
strident "activist" voices.

But the real "system" issue...the big, structural question...is, I
would propose, whether it is at all advisable for patient groups to be
so forcefully inserting themselves into a debate of
professionals...whether laypersons should be able to weigh in on
matters reserved for highly-trained professionals and professional
societies.

Simply, whether, we should be politicizing a debatable question of
scientific fact and evidence. I think if I were a physician, I would
be very troubled by the IDSA affair, and what appears to be an attempt
of patients to seize control and over-rule the judgment of
professionals.

Surely, the answer to his is ultimately, a firm and resounding , "no'.
A situation where the patients diagnose themselves and prescribe their
own treatment? Tail wagging the dog, isn't it?

And what I objected to with the Blumenthal thing...is that I don't
think a lawyer/politician necessarily makes a better arbiter of the
matter. You don't want a career politician playing self-serving games
with this.

Of course, I always thought this was more as a political stunt than
anything. I wouldn't be surprised at all if he runs for governor of
CT.

It really has to be left to medical professionals...in my opinion...to
sort out. Even if it takes time and people are injured by the delay.
The soundness of the entire healthcare system is more important.

Seems to me that the underlying medical question...what is really
shaping the whole debate...is a struggle between the role "evidence-
based" treatment versus empirical observation within the parameters of
medical practice.

To my layperson way of thinking...there is a danger in restricting
therapies based solely on the lack of existing "proof" at the
moment...especially when there is a real possibility that further
research may, someday provide the very proof that was previously
lacking.

What I still don't understand, is why physicians would be so
inflexible in their approach in the case of an emerging disease about
which they may not understand critical factors.

Yes. me neither.

But...as I have said before, I don't get to vote...and shouldn't.

Anyway...

.

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