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The quack science of the Department of Veterans Affairs and Institute of Medicin

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Mark,

I definitely agree with the essence of your op-ed article. I can't agree

with you on quite everything because I understand how the medical system

" works " , or rather doesn't work for those of us who received the anthrax

immunization. (I am—or at least was once—a part of the health care system,

although not the VA.) We very much seem to be on the same side politically

if my impression of " OpEdNews.com " is correct, so I won't pull my punches in

assigning blame where I believe it belongs.

I independently read several of the papers the IOM study refers to. The

12-Sep-06 IOM study is technically correct, but (this time) it's not the

fault of the IOM but the fault of the papers it reviews. ( " Garbage

in—garbage out " applies here.) Most studies of Gulf War Syndrome (GWS)

concentrated on Gulf War I (GW I). I'm not sure how many servicemembers

received the anthrax shot then, and what version they received. If they

received the pre-1990 version, they likely may not have gotten sick from it,

because the crucial change in the manufacturing process (the addition of

nylon filters) didn't occur until some time in 1990. In addition,

pyridostigmine and depleted uranium may have contributed much more

significantly to the illnesses of those who served in GW I than did the

post-1990 anthrax immunization. This is speculation on my part, but it

could explain the inability of otherwise capable researchers to find a

single syndrome.

Since then, the government has gone to great lengths to prevent researchers

from doing any research on those of us who received the post-1990 version of

the anthrax immunization. (I received my anthrax shot on 24-Sep-93, with

neither my knowledge nor consent. I got it the same time as I got my last

typhoid booster, so I can pin down the date precisely. My anthrax shot

didn't make it into any of my available medical records, but my typhoid

booster did.) The result is that we have no good, reliable studies on any

of us who have what I term the " Anthrax-Immunization-Related Autoimmune

Syndrome " . The government could open itself to huge financial liability if

the facts of AVIP or its predecessors became public knowledge. The

electorate would then of course demand good scientific studies of those of

us who received the anthrax shot. Congress would have to either amend the

Federal Tort Claims Act to permit us to litigate under it (currently barred

by the 1950 FERES opinion) or introduce special legislation to compensate

us. The last thing the government wants is for the fact that it performed

medical experiments on us without our knowledge or consent, much less

coercion and punishment for those who refused, to become public. They would

demand absolute prohibition on uninformed and unconsenting medical

experimentation on members of the Armed Forces of the United States. (At

present, the law provides for presidential exemption. That amounts to no

protection at all for us, especially with respect to the current occupant.)

But I digress.

Practicing physicians rely on scientific information published in the

medical literature for our knowledge. Significant variations from what we

know that can be documented (usually by physical examination, laboratory,

x-ray, or other such subjective findings) will spur us on to think of other

possibilities, but only if we recognize them. In response to your assertion

that you're allergic to fluorescent lights, your physicians should have

asked you what you meant by that (what symptoms you experienced) if you got

the same sort of symptoms in sunlight, other conditions that might be

present in an environment that included fluorescent lights, and anything

else your answers to those questions might have triggered. (The first thing

that occurred to me when you mentioned that is whether you might have

discoid or systemic lupus erythematosus, acquired acute intermittent

porphyria perhaps from lead toxicity, or something else that made you

sensitive to ultraviolet light. If you tested negative for all those and

Dermatology and perhaps Rheumatology couldn't have diagnosed you, only then

would I have considered referring you to Psychiatry.)

The problem is that frequently medicine relies on what in the engineering

world is known as " Hebbian " learning. (That refers to the relatively

unsophisticated Hebbian artificial neural networks.) A particular pattern

triggers a particular response. The absence of a pattern triggers either

conflicting responses, nonsense responses, or no response at all. (I'm not

defending it, simply explaining it.) This is the reason that in certain

situations, computers (actually much more sophisticated software neural

networks) outperform physicians in diagnosing particular diseases.

The better physicians ideally rely on putting things together from their

knowledge of physiology, biochemistry, and such. Unfortunately, even for

them, specific diseases sometimes take several visits over an uncomfortably

long time to diagnose. The reason is that there is a significant amount of

variability in the ways individual patients manifest specific diseases, so

diagnosis requires several observations over time to know what is " real " and

reliably present, and what is " noise " . Some diseases manifest themselves

very slowly, adding to both the patient's and physician's frustrations.

The problem with the VA is that many patients have a perceived financial

incentive to be diagnosed with more—or more severe—diseases. This tends to

bias physicians into dismissing complaints they can't easily explain.

The VA itself has been significantly underfunded for the last six years,

even though the last six years have seen a significant increase in demands

for its services. This forces the VA to tighten its belt with respect to

how it spends its money, even to the point of cutting back on needed

testing. (It's best not to get me started on The Last Six Years, even

though I probably owe my having received the anthrax shot in late 1993 to

President Clinton's contemporaneous obsession with gays-in-the-military.)

Having myself been (and for that matter, still being) on both ends of the

stethoscope, I know the system well enough to be sure I get taken seriously

and worked up effectively. (Well, most of the time. I'll share the story

of my right anterior compartment syndrome and the Incompetent Orthopedic

Resident some other time.) I wish I could share this information, but it's

unique to each person and each problem. The key is to be sufficiently

anxious about the problem so your physician will share your concern,

sufficiently detailed in your description of your symptoms for the physician

to take you seriously, and sufficiently persistent so that if the first two

don't work the first time, they will subsequently. It definitely helps to

have demonstrable physical findings. If you develop one or more of them,

drop everything and get seen by a physician—the VA E.R. is appropriate in

such situations—so you can get the findings documented.

. . .

Digressing yet again, I take special interest in your newly-diagnosed

hypothyroidism, because I was also recently diagnosed with it. Mine was

pure serendipity, in spite of my being Board-Certified in Internal Medicine,

and Board-Eligible in Endocrinology. (I didn't realize how subtle the

initial symptoms are, in all the ways they can minifest themselves, or how

insidious their onset can be.) For some reason, the VA computer flagged me

as possibly having prediabetes, so a VA prediabetes intervention study here

(Puget Sound) sent me a letter asking me to get screened for inclusion in

the study. I was as curious as I was concerned, so I did. I didn't test

positive for prediabetes, but the myriad lab tests they drew (paid for by

the drug company, not the VA) showed me as having a " slightly elevated "

thyroid-stimulating hormone (TSH). When I found out about that, things

started to click. Back in mid April of 2006, I began noticing what I

eventually would have recognized as definite symptoms of hypothyroidism. I

progressed to more of them, as well as to increasing severity of the ones I

already had, in the three months between then and the fortunate discovery of

my having subclinical hypothyroidism. My Rheumatologist told me about it

when I asked about my diabetes-study lab results. He wants to repeat them

next February, so that means no thyroxine therapy for me until at least

then, and more likely until I get into the VA Endocrinology Clinic. As it's

failing, my thyroid is gradually enlarging. Since the incidence of thyroid

cancer in us is four to five times that of the " normal "

(non-anthrax-immunized) population, I expect that by this time next year, my

thyroid and I will have surgically parted company. (I've read everything I

can on thyroid disease, and even splurged on the latest copy of the

Werner-Ingbar thyroid textbook. I'm also reading all the latest literature

I can access from my home computer.)

So I have the extreme good fortune to have a rapidly-failing thyroid just in

time for the cold weather, with no prospect of exogenous thyroxine until

sometime in the spring of 2007. This is going to be an interesting winter!

I also very much envy your thyroxine! I hope you quickly get on the correct

dose for you. Remember that since thyroxine controls metabolism—including

its own conversion and degradation—it'll take a little while for you to

arrive at the correct dose. Thyroxine has a very long half-life—from about

six to nine days—so it will take about six times that long for you to

stabilize after a dosage adjustment. Currently—with the " new " upper normal

TSH reference of 2.5 mIU/L—the recommendation is for you (and me, when the

time comes) to shoot for a TSH of between 0.5 to 2.0 mIU/L. So plan on

blood draws every six weeks for at least the next year, then every six

months afterwards. In addition to monitoring total T4 (TT4), free T4 (FT4),

TT3, FT3, and TSH, you also need to monitor total, HDL, and LDL cholesterol,

triglycerides, Vitamin B12, and if possible, folate and homocysteine. These

should ALL be done at the same time you get your thyroxine and TSH checked.

They're all interrelated, and all VERY important to your overall health.

(If you tell this to your physicians—and I suggest you do—they're going to

want to have my hide. I'll find out for myself soon enough when I have the

same discussion with whatever Endocrinologist has the extreme good fortune

to have me as a patient.)

. . .

Returning briefly to where I began prior to my digressions, we need to

DEMAND that Congress fund high-quality, comprehensive clinical studies of

us, not overseen by the CDC but instead overseen and performed by a

consortium of universities. I don't want " our " study to have the same fate

as the Agent Orange study. When we get those studies, we will have the

knowledge we need to get the care that we need. Until then, we're going to

be stuck in the situation you described, and for the reasons you described.

Excellent article! I wish you both wide readership, and success in

convincing the people who can make a difference.

Fisher, MD

===========================================================================

Those who make peaceful revolution impossible

make violent revolution inevitable.

-- F. Kennedy

===========================================================================

•> The quack science of the Department of

•> Veterans Affairs and Institute of Medicin

•>

•> Here is a link to my most recent commentary, which I hope

•> you all enjoy.

•>

http://www.opednews.com/articles/opedne_mark_and_060929_the_quack_science_of

..htm

•>

•>

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