From: sbharris@ix.netcom.com(Steven B. Harris)
Newsgroups: sci.med
Subject: Re: Please comment on this letter I faxed to my doctor
Date: 29 Mar 1999 03:08:12 GMT

In <36FEE87C.CCCDCD8F@servtech.com> Ed Mathes <emathes@servtech.com>
writes:

>I woul;d appreciate it if you could provide the name/email of the doctor that
>claims he can cure your chronic skull infection.
>
>
>--
>Edward J. Mathes, RPA-C
>N2RQO
>Internal Medicine
>emathes@servtech.com


   A chronic mycoplasma skull infection, don't forget.  Mycoplasma
osteomyelitis-- the diagnosis of the 90's.  Gallium scans are useless.
In-111 WBC scans bounce right off.  ESRs are normal.  Antibiotics are
ineffective!  After a while, the erosian into your brain forces you to
post messages on the net, every day.  Hee, hee!  Who needs the gulf war
to catch one of these mycoplasma thingies.  If it weren't for the
headaches....

From: sbharris@ix.netcom.com(Steven B. Harris)
Newsgroups: sci.med
Subject: Re: Please comment on this letter I faxed to my doctor
Date: 29 Mar 1999 09:20:45 GMT

In <36FF0C94.2CD7375D@servtech.com> Ed Mathes <emathes@servtech.com>
writes:

>>    A chronic mycoplasma skull infection, don't forget.  Mycoplasma
>> osteomyelitis-- the diagnosis of the 90's.  Gallium scans are useless.
>> In-111 WBC scans bounce right off.  ESRs are normal.  Antibiotics are
>> ineffective! After a while, the erosian into your brain forces you to
>> post messages on the net, every day.  Hee, hee! Who needs the gulf war
>> to catch one of these mycoplasma thingies.  If it weren't for the
>> headaches....
>
> I didn't think you were serious...until I did a medline search.  29
>citations!  Most in Turkeys (yes, the bird) with green-liver syndrome.


    Yep.  And in the Gulf war it was seen in turkeys with lilly-liver
syndrome.  That's the horse of a different color you've heard tell
about....

From: sbharris@ix.netcom.com(Steven B. Harris)
Newsgroups: sci.med
Subject: Re: Please comment on this letter I faxed to my doctor
Date: 30 Mar 1999 14:00:46 GMT

In <3702dae0.1712632@news.annex.com> neutrino@annex.com (Daniel Prince)
writes:

>Dr. Tufft also doesn't claim that there is no objective test for the
>condition.  He says it can be detected by a SPECT scan with 1" or
>larger images.  I suppose he could be interpreting normal variations
>in bone as infections when they are not, but if he told me that my
>SPECT scan showed a bone infection, I would try to get someone else to
>look at the scan.


    Good idea.  But bone infections are not generally diagnosed with
SPECT scans.


>  He also has oral surgeons remove the infected bone
>as part of the treatment.  I think it should be possible for a
>pathologist to examine the tissue he removes and determine if there
>was in fact a bone infection.  I would like to read the pathologist's
>reports on several cases before I was treated by him.

    Um hmmmm.



>I think that quacks usually make claims that can't be verified in any
>way.  Dr. Tufft's claims can be verified.  I don't know if they have
>been or not but they can be.

   Ummm hmmmm.  So why are we having this exchange?  I don't give a
flying *&%$ for odd claims that are in principle verifiable, if they
haven't been, yet.  Get back with us when you find out something.



>I have ABSOLUTELY no doubt that 20 years ago more than 90% of all
>doctors would have ridiculed anyone who said that they thought that
>their ulcer was caused by a bacterial infection.

   As well they should have.  The proper answer to "They laughed at the
Wright brothers!" is: "They laughed at Laurel and Hardy, too.  So?"


> Do H. pylori
>infections cause an elevated ESR all the time?

   Not any of the time, so far as I know.  But infected bones do a lot
of things that ought to be seen by things less exotic than SPECT.  They
show up as funny lesions on CT and MRI.  They take up material on
ordinary Tc-99m diphosphonate bone scans.  They light up on In-111 WBC
scans.  They take up Ga-67 citrate.  They cause elevated alkaline
phosphatase (bone isoenzyme).



>
>I do not say that I know I have a skull infection.  I say that it is
>something that should be considered.  There is a saying in medicine
>that goes something like:  "When you hear hoof beats look for horses
>not zebras."  I say "When you hear hoof beats and you don't find any
>horses for 26.9 years it is way past time to look for zebras."

    A symptomatic osteomyelitis of 26.9 years duration which does not
show up on CT or MRI is not a zebra.  It is a unicorn.



> If you
>go to the trouble of searching Deja News for my original messages on
>the subject of bone infections, you will see that I am somewhat
>skeptical of Dr. Tufft's claims.


   Well, that makes two of us.  So, again, why are we having this
conversation?

>Being able to ridicule anyone who dares to criticize an MD (or who
>thinks they MIGHT have a disease that you don't want to believe in)
>must be very comforting for you and you do it so very well.

   Why would it be comforting for me?  I have nothing but admiration
for doctors who difinitively diagnose rare and odd diseases.  I have
nothing but contempt for those who waste people's time much with
suggestions of same, until the final results are in.  That sort of crap
just causes anxiety, arguments, confusion, paranoia, and people running
around talking about how they have discovered their own Semmelweiss,
and the establishment doesn't want to wash their hands.  Well, that
must be conforting, too, to think that.  But don't hold your breath.
Whenever you think you found your own Pasteur or Semmelweiss or Barry
Marshall, ahead of his time, it's time to check your pulse.  You
probably haven't.  It's not impossible, but it's not something to go on
about, either.


> I wonder
>if you are as good at correctly diagnosing patients who have rare or
>unusual diseases.

  As good as what?  As good as who?  Get a grip, okay?


> Or is it not important to you that your diagnosis
>be correct as long as it makes you look good?


    It's not even appropriate to talk about who looks good and who
doesn't UNTIL you get the diagnosis, and by a method which isn't in
doubt.  Until then, I'm not going to put up with hot air.  "Aha, Dr.
Harris--- are YOU as good at diagnosing Bartleby's Morbis of the Corbis
Minor, as MY doctor, who says I might have it, is?  I'll bet not."
Gee, I'll bet you're right.  But good luck.

                                           Steve Harris, M.D.

From: sbharris@ix.netcom.com(Steven B. Harris)
Newsgroups: sci.med
Subject: Re: Please comment on this letter I faxed to my doctor
Date: 30 Mar 1999 14:50:58 GMT

In <3701d7c7.918920@news.annex.com> neutrino@annex.com (Daniel Prince)
writes:

>I DID seek medical care shortly after I became ill.  I paid a small
>fortune that I couldn't afford for Kaiser coverage.  All the doctors
>there did was run a few routine tests and tell me that there was
>nothing wrong with me.  After several months it became OBVIOUS that I
>was wasting my time and money and since I couldn't work I couldn't
>come up with the money any more so I HAD to drop the Kaiser coverage.
>
>After that I went to Harbor General emergency room SEVERAL times.
>(One time I waited eight hours in the waiting room) They did NOTHING
>that helped me.  I went to the Free Clinic several times.  They did
>nothing for me.
>
>After I got GR (General Relief which is county welfare) I got Medi-Cal
>(California's version of Medicaid).  I probably went to 30 or more
>doctors before the state decided that they could save money by making
>GR recipients use County Clinics only.  None of them did anything that
>helped me.  I then went to several doctors at various county clinics
>and hospitals.  They did nothing for me.  At this time I also went to
>the MDA clinic many times.  They did nothing that helped me.
>
>After I had lived on GR for 13 years I FINALLY got SSI (15 years after
>I became too ill to work) and so I got Medi-Cal again.  I then went to
>many different doctors before I tried the Cigna HMO which later became
>the Friendly Hills HMO.  They did nothing that helped me.  I probably
>saw 30 or more doctors at Cigna/Frendly Hills.  They did nothing that
>helped me.  I quit the Friendly Hills HMO in late 1997 and started
>seeing other doctors in the Foundation Health/Health Net network.  I
>have had six different PCPs since then (not counting the one I start
>with on 4/1/99).  They did nothing that helped me.
>
>>I would not have waited eight or ten years to seek treatment.
>
>I did NOT wait eight or ten years to seek treatment.  I saw a doctor
>less than two weeks after I became ill.  In the almost 27 years I have
>been ill I have probably been to well over 100 different doctors and
>have averaged 20 or more appointments per year.

    Perhaps you have a disease which hasn't been discovered
(characterized) yet.  I'm sure there are a lot of them, and know very
well I've run across many of them.  What Edison used to say regarding
the idea that we don't know a hundredth of a percent of what there is
to know about ANYTHING, goes just as well for medicine.  But sometimes
it's best to leave it at that.   I'm not saying not to keep looking.  I
am saying it might be better to look a bit less accusitorially, and be
very careful of people who have fixes which involve risky undertakings,
and diagnoses which are supposed to have been missed by other doctors
less brilliant than the guy you're seeing.

   You can with justification make fun of any doctor who says there's
nothing wrong with you.  That is pure arrogance, and may any doctor who
ever dares to say any such thing to any patient (if any there be) be
sentenced by Asculapius to spend some time in the purgatory of an
undiagnosed and undiagnosable illness.  But in medicine, there are sins
of ommission and sins of commission.  I've generally found that the
latter are worse.  If you're not dying after 26 years, it's fairly
likely that whatever you have isn't going to do you in, next month.
But if you keep looking long enough, you will probably be able to find
a *doctor* who will.  Don't say I didn't warn you.


>I went to the UCLA hospital.  They did nothing that helped me.  They
>told me that I couldn't possibly have any physical illness because I
>wasn't running a fever!


   I hope they didn't say that.  If they did, then see my comments
above.  But on the other hand, what is it that you expect of medicine?
If you have no problem that doesn't produce a definitive positive
result on any test (so far), then there you are.  The state of
uncertainty and ignorance is the worst one humans can deal with.  It's
a rare one who can do it for long.  Inductively, however, you'll do
better to be skeptical of those claiming special and forbidden
knowledge in any sphere.  Keep that attitude, and you'll do better,
over all.   You'll miss the modern Semmelweiss, should you happen to
meet him.  But you'll also miss a thousand quacks who'll hurt you far
worse than not washing your hands (and, BTW, if you meet somebody WHO
MIGHT be the new Semmelweiss and all they want you do is wash your
hands, why not do it?  The worst that can happen they are wrong is that
you'll have cleaner hands.  Or more expensive urine <g>).  You can
laugh at the buffoons who think they can tell you that you have nothing
wrong with you.  You can't laugh at somebody who wants to take out a
piece of your skull for reasons that are not generally accepted.  One
set of folks is arrogant and harmless.  The other kind is arrogant and
deadly.  Learn to recognize the harmless fools from the other kind.
By all means try alternative treatments which at worst will cost you a
bit of money but otherwise are probably benign, even if they are
wrongheaded.  Run like hell from anything else.;


>I have had one doctor or another the whole time I have been ill.  When
>I say that I have NEVER received any treatment that helped me it was
>not because I didn't seek medical care or didn't have a doctor.  I
>doubt that I have ever gone more than two months without seeing a
>doctor since I became ill almost 27 years ago.
>
>I have a text file that tells in detail my symptoms and the medical
>"care" I have received up to 10/30/1995 (I haven't updated it since
>then.) I could email it to you if you want.  It is 19,989 bytes long.
>Do you want it?

   Speaking for myself, no.  I would suggest that you reduce it to a
one page outline and a five-to-ten page screenplay treatment, however.
Then, when at last the state of medical knowledge does finally catch up
with you, you won't put anybody off with the shear weight of your past
history.  I'm talking about human nature, here.  There are a lot of
patients like you.  Few doctors want to deal with them, because there
is very little point to it (unless they seek purely symptomatic or
paliative relief).  Trying to fit the square peg of an unknown disease
into the round hole of modern treatment is unproductive and dangerous.
It wastes everyone's time, and it invites disaster.  Do some editing.
Treat your symptoms.  Get on with your life.


>He didn't claim that he could cure me of a chronic skull infection.
>He said that he thought there was a 100% chance that such an infection
>was causing all of my symptoms and that I needed a SPECT scan with 1"
>(or larger) images to be sure.

   A 100% chance, eh?  Run for your life, buddy.  Run.


                                           Steve Harris, M.D.