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Medical Forum / Diseases and Disorders / Arthritis / August 2006

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Looking for a specialist in systemic sarcoidosis

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paul chinaski - 03 Aug 2006 01:57 GMT
My grown son has systemic sarcoidosis, with gastric and joint
involvement, and now perhaps also neural involvement.  He did have some
past lung involvement but none currently.  The sarcoidosis specialists
seem to focus on pulmonary sarcoidosis and are at a loss when it comes
to the broader picture.  Does anyone know of a specialist in systemic
sarcoidosis anywhere in the Mid-Atlantic states?  (We are in New
Jersey.)  Should we try the Mayo Clinic?  Even their web site seems to
treat sarcoidosis as only a lung disease.  Thanks for any advice.
vickie b. - 03 Aug 2006 04:25 GMT
> My grown son has systemic sarcoidosis, with gastric and joint
> involvement, and now perhaps also neural involvement.  He did have some
[quoted text clipped - 4 lines]
> Jersey.)  Should we try the Mayo Clinic?  Even their web site seems to
> treat sarcoidosis as only a lung disease.  Thanks for any advice.

Paul just wanted to let you know that prayers and thoughts are heading
your way.  My husband had this several years back but we're in the
midwest.

Vickie B.
ironjustice@aol.com - 03 Aug 2006 19:30 GMT
> My grown son has systemic sarcoidosis, with gastric and joint
> involvement, and now perhaps also neural involvement.  He did have some
[quoted text clipped - 4 lines]
> Jersey.)  Should we try the Mayo Clinic?  Even their web site seems to
> treat sarcoidosis as only a lung disease.  Thanks for any advice.

They've linked sarcoidosis to iron .. problems .. in the body.

<<snip>>
disruption of normal iron metabolism
<<snip>>

http://tinyurl.com/ejufv

Pulmonary diseases, such as infectious pneumonia, chronic obstructive
pulmonary disease, cystic fibrosis, sarcoidosis, interstitial lung
disease, acute respiratory distress syndrome, bronchogenic carcinoma,
and sepsis, involve a similar disruption of normal iron metabolism and
oxidative stress in the lower respiratory tract.

----------------------------------------------------------------------------------------------------------
Hemochromatosis is an iron loading disease.

<<snip>>
Infiltrative diseases of the thyroid include systemic sclerosis,
hemochromatosis, sarcoidosis, chondrocalcinosis and amyloidosis
<<snip>>

Amyloid goiter in a case of systemic amyloidosis secondary to
ankylosing spondylitis.
Cohan P, Hirschowitz S, Rao JY, Tanavoli S, Van Herle AJ
J Endocrinol Invest. 2000 Dec ; 23(11): 762-4

Infiltrative diseases of the thyroid include systemic sclerosis,
hemochromatosis, sarcoidosis, chondrocalcinosis and amyloidosis. Only
rarely does thyroid amyloidosis result in clinically palpable goiter.
Classically, amyloidosis is associated with tuberculosis, rheumatoid
arthritis, multiple myeloma or inflammatory bowel disease. Only rarely
does clinical amyloidosis develop in the setting of ankylosing
spondylitis. We describe a case of amyloid goiter in a patient with
ankylosing spondylitis-associated amyloidosis.

--------------------------------------------------------------------------------------------

If you look in this study they mention .. iron .

<<snip>.
iron mediated oxidative stress
<<snip>>
.
Ghio AJ, Roggli VL, Kennedy TP, Piantadosi CA
Sarcoidosis Vasc Diffuse Lung Dis. 2000 Jun ; 17(2): 140-50

BACKGROUND: In many patients with sarcoidosis, the granulomas contain
inclusion bodies within giant cells. Many giant cells contain
crystalline oxalate that chemically coordinates iron on the surface of
the crystal. If this iron is incompletely coordinated and capable of
redox cycling, then oxalate might contribute to granuloma formation in
the lung. METHODS: Using human tissues, isolated alveolar macrophages
and respiratory epithelial cells, we measured the ability of calcium
oxalate to sequester iron, stimulate cytokine release and cause
granuloma formation. We then studied the effects of in vivo oxalate
instillation on pulmonary granuloma formation over 3 to 6 months in
rats. RESULTS: Calcium oxalate present in human sarcoid granulomas
sequesters significant amounts of iron and ferritin. In alveolar
macrophage cultures, oxalate accumulates iron and stimulates ferritin
production and giant cell formation. In cultured respiratory epithelial
cells, calcium oxalate increases the release of two interleukins (IL),
IL-8 and IL-6, involved in granuloma formation by 8 to 10 fold within
24 hours. Intratracheal instillation of calcium oxalate crystals into
the lungs of rats is associated with pulmonary iron and ferritin
accumulation and organic carbonyl formation consistent with sustained
oxidative stress. These exposures were accompanied by influx of
alveolar macrophages, giant cell formation, and a granulomatous
response in the lung. CONCLUSIONS: These results support an association
between calcium oxalate deposition in the lung, iron mediated oxidative
stress and formation of some of the granulomas of sarcoidosis.
----------------------------------------------------------------------------------------------------------------

It may be worthwhile investigating the effects of NID / near iron
deficiency ..

http://rheumatology.oxfordjournals.org/cgi/content/abstract/42/12/1550

Who loves ya.
Tom

Jesus Was A Vegetarian!
http://jesuswasavegetarian.7h.com

Man Is A Herbivore!
http://tinyurl.com/a3cc3

DEAD PEOPLE WALKING
http://tinyurl.com/zk9fk
Diane - 03 Aug 2006 23:59 GMT
paul, i just want you to know that i've seen your post. i'm sorry i
have no answers for you but perhaps someone will come along who does.
since you are new to the group, i also wanted to alert you to the fact
that the person signing in as "ironjustice" has an agenda and seems to
believe that all diseases are linked to iron overload. we consider him
a spammer. i just don't want you to be misled.

best of luck to your son,

diane
ironjustice@aol.com - 04 Aug 2006 00:30 GMT
> paul, i just want you to know that i've seen your post. i'm sorry i
> have no answers for you but perhaps someone will come along who does.
[quoted text clipped - 6 lines]
>
> diane

Actually a quick search of YOU .. and 'remicade' .. brings up .. ?

http://tinyurl.com/j343x

Jeez .. that is a LOT .. of posts ..

You .. like .. remicade .. do .. ya .. ?

Sort of like your .. pal .. NinaW ..

Eh ..

I wonder if THIS .. post refers to .. you .. ?

WARNING: Industry is Blogging These NewsGroups to Maintain Their
Monopolies

To : All participants and readers of sci.med, misc.health.alternative,
uk.people.health, talk.politics.medicine

Please be aware that many comments and responses posted to this forum
are not those of casual posters interested in an honest  exchange.  A
number of individuals with ties to industry are engaging an effort to
shape public sentiment about the risks of mainstream  medicine while
denigrating the benefits and validity of natural medicine.  I refer to
these individuals broadly as "Pharma Bloggers."(*)  Pharma Bloggers on
usenet don't promote a specific company or product, as might be the
case with standard "blogging" on a weblog.  Most of these people are
likely to have an association with a PR campaign whose "blogging"
efforts are underwritten anonymously by the media and marketing groups
of industry. They are not difficult to identify due to specific
patterns of behaviour in posting.

Here are a few points to remember while participating in usenet
newsgroups:

1. Pharma Bloggers on usenet use intimidation, mockery, and insults to
silence those who express belief or interest in natural medicine.

2. Pharma Bloggers on usenet attack those who question the
effectiveness of mainstream medicine and defend disease-management
"healthcare" as the only viable form of medicine.

3. Pharma Bloggers on usenet post the majority of their responses
simply to bury the comments of others; they also strive obsessively  to

have the last word.

4. Pharma Bloggers on usenet are much faster at posting than casual
participants; they almost always respond first to a new thread,
question, or observation.

5. Pharma Bloggers on usenet use multiple "bloggers" in a swap-&-relay
fashion to create an aura of the "consensus view" in an effort  to
isolate posters who question the value of mainstream medicine.  You
will see this tactic used more often than any other.

6. Pharma Bloggers on usenet refute numerous quality studies published
in major medical journals showing the benefits of natural medicine
applied in naturopathic healthcare, including nutrient supplementation,

exercise, stress reduction, biofeedback, accupuncture, and other
approaches.  You can find the science supporting a variety of natural
medicine approaches at http://www.newstarget.com.

7. Pharma Bloggers on usenet frequently refer readers to
"quack-busting" websites designed to denigrate natural medicine
approaches and their proponents.  Under the guise of "consumer
protection," the extreme bias of these promoters belies their true
motives and reveals their ties to industry.

8. Pharma Bloggers on usenet extol the virtues of various mainstream
medical treatments, citing "evidence based medicine" and the FDA
approval process.  They ignore iatrogenic studies showing the dangerous

effects of such treatment (ie., more than 100,000 deaths annually), as
well as a 20% recall for all previously approved drugs, and hundreds of

studies showing a disease relationship to use of pharmaceutical drugs
and other toxic exposures.

9. Pharma Bloggers on usenet call for an ADE (Adverse Event) reporting
system for dietary supplements, despite the fact that ADE reporting for

pharmaceutical drugs, according to FDA, is not more than 20% effective.

They cite Poison Control data to support the view that dietary
supplements are unsafe, yet ignore the fact that the data show fewer
potential adverse reactions from the entire spectrum of dietary
supplements as compared to just ONE popular class of pharmaceutical
drugs, analgesics.

10. Pharma Bloggers on usenet demand stringent regulatory control over
supplements, while ignoring data showing thousands of deaths resulting
from defective regulation of the drug industry.  The real and glaring
failures on the part of FDA to protect the public, and the failure of
Big Pharma to perform long-term safety studies on pharmaceutical drugs
before going to market, are conveniently ignored by these industry
media jockeys.

Comment:  The call for an ineffective ADE reporting system, additional
regulatory oversight, and a classification system that treats nutrients

the same as drugs, is designed to expose dietary supplements to the
market-busting tactics of the drug industry and limit consumer choices
before adoption of natural medicine grows further.  The pharmaceutical
companies are well aware that more than one-third of all Americans are
relying on some form of alternative medicine in an effort to improve
their individual healthcare, and that cuts directly into their profits.

Tip: If you find yourself engaging a poster whose defense of mainstream

medicine is unusually dramatic in tone, or inexplicably vicious  toward

others, and if that response is an attempt to denigrate natural
medicine, you can be sure you have stumbled upon a "Pharma  Blogger."
Unfortunately, there are more of these individuals posting to usenet on

a daily basis than virtually anyone else, which is why I  am posting
this alert.  If you find it odd that so few people on health-related
usenet newsgroups are expressing an interest in natural  medicine, it
isn't because they aren't there, it's because they have been
intimidated into silence.  The Pharma Bloggers have over-run  the
various newsgroups with their industrial brand of dogma, mockery, and
ridicule.  Many casual posters are simply frightened away.   That's a
primary goal of these industry media jockeys, and they are very good at

it.

(*) Pharma Blogger: An individual who uses the Internet and Usenet
newsgroups to: 1) promote and defend maintstream medicine  while
denigrating natural medicine approaches; 2) attack others who express a

preference for natural medicine, or who question the  value of
mainstream healthcare and disease management; and 3) cite a variety of
"junk medical science" funded by industry for the  purpose of
establishing markets for marginally effective, and often dangerous,
medical products and devices.

Who loves ya.
Tom

Jesus Was A Vegetarian!
http://jesuswasavegetarian.7h.com

Man Is A Herbivore!
http://tinyurl.com/a3cc3

DEAD PEOPLE WALKING
http://tinyurl.com/zk9fk
Fire Chief - 04 Aug 2006 01:44 GMT
>  Who loves ya.
>  Tom

That's because your mother hates you.

... Intel on the inside. Idiot Tom on the outside.
paul chinaski - 04 Aug 2006 04:17 GMT
> paul, i just want you to know that i've seen your post. i'm sorry i
> have no answers for you but perhaps someone will come along who does.
[quoted text clipped - 6 lines]
>
> diane

Thanks Diane.  Although I'm new here I am not new to other groups, and
can generally figure out who's who pretty quickly.  I'm still hopeful
someone can come up with a specialist name.
Fire Chief - 04 Aug 2006 07:28 GMT
>  Does anyone know of a specialist in systemic sarcoidosis anywhere
> in the Mid-Atlantic states?  (We are in New Jersey.)

Paul, I can't locate that in the Arthritis Foundation's list of
diseases.  However my wife's TABER calls it a multisystem
disease of unknown etiology.....occurs most often in the
southeastern U.S., is 10 times more common in blacks than
whites, and is more common in women than in men.

Diagnosis is made through a combination of clinical,
radiographical, and histological findings.  Sarcoidosis must
be differentiated from other diseases that cause granulomas,
such as tuberculosis, histoplasmosis, and some other fungal
infections.

Specialists in arthritis may be located at the following URL:

American College of Rheumatology

http://www.rheumatology.org

Left hand side:
  Find A Member
    By State
       By Town

I must have seen 50, 60 or more towns listed in N.J.    I didn't go
into any, but I'd wager there are several hundred in the State.

... Bullsheet:  An advertising supplement in a newspaper.
Nann Bell - 04 Aug 2006 21:50 GMT
>  American College of Rheumatology
>
[quoted text clipped - 7 lines]
>  I must have seen 50, 60 or more towns listed in N.J.    I didn't go
>  into any, but I'd wager there are several hundred in the State.

good point, chief!  Paul, some of the RDs listed on the ACR wevsite also list
their particular interests.  You might be able to locate one with a
sarcoidosis interest that way.  If none of the specify that disease, at least
you can start calling all the offices and asking the staff.  

Signature

Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare

blades49456 - 04 Aug 2006 22:05 GMT
Hi, Paul..  There's a lot of systemic autoimmune diseases with
overlapping symptoms.  With past lung involvement, it might be well to
consider the possibility of a systemic autoimmune vasculitis.

I believe the treatments for systemic autoimmune vasculitides is pretty
much the same a for sarcoidosis (not really of that.. haven't checked it
out).

If you care to purse that possibility, the Johns Hopkins Vasculitis
Clinic is first rate.  They don't list sarcoidosis as a vasculitis, yet
I think it likely they would take a referral from your son's current
physician.

Take a look at Churg-Strauss syndrome, Wegener's granulomatosis,
Microscopic polyangiitis etc.  The URL is http://vasculitis.med.jhu.edu/

Cleveland Clinic also has a Center for Vasculitis at
http://www.clevelandclinic.org/arthritis/vasculitis/default.htm

Best wishes, Bruce

> My grown son has systemic sarcoidosis, with gastric and joint
> involvement, and now perhaps also neural involvement.  He did have some
[quoted text clipped - 4 lines]
> Jersey.)  Should we try the Mayo Clinic?  Even their web site seems to
> treat sarcoidosis as only a lung disease.  Thanks for any advice.
Paul T. Holland - 05 Aug 2006 02:37 GMT
you probably already know that a great number of docs who treat this are
pulmonary spec.... but have you checked any of these out:

Johns Hopkins University Sarcoidosis Clinic
5501 Hopkins Bayview Circle, 4B72
Baltimore, MD. 21224
(410) 550-7753

Henry Yeager, M.D.
Dept. of Medicine, Georgetown Univ. Med. School G-104 Kober-Cogan
3800 Reservoir Road, M. W.
Washington, D. C. 20007
(202) 687-8830

www.sarcoidosisnetwork.org
http://www.stopsarcoidosis.org/
http://www.sarcoidosisonlinesites.com/
http://www.sarcoidosissharma.com/pages/8
http://www.sarcoidosisresearch.org/
http://www.sarcoidconnection.com/

Sarcoidosis Awareness Network
1031 Farran Ave.
Chetlenham, MD 20623
301.372.2885
Linda Lanier

i have read articles by:

RAJANI KATTA, M.D., Baylor College of Medicine, Houston, Texas
assistant professor of dermatology at Baylor College of Medicine in
Houston, Tex. She received her medical degree from Baylor College of
Medicine and completed a residency in dermatology at Northwestern
University Medical School in Chicago.

Address correspondence to Rajani Katta, M.D., Assistant Professor of
Dermatology, Baylor College of Medicine, 6560 Fannin, Suite 802, Houston,
TX 77030.

N K Nikhar, MD, Assistant Professor, Department of Neurology, George
Washington University School of Medicine
N K Nikhar, MD, is a member of the following medical societies: American
Academy of Neurology

Lenner R, Schilero GJ, Padilla ML, Teirstein AS.
Department of Pulmonary and Critical Care Medicine, Mount Sinai-NYU Medical
Center, New York, NY, USA.

University of Pittsburgh Medical Center had a sarc. dept at one time, as
did Duke University...

hth

paul

> My grown son has systemic sarcoidosis, with gastric and joint
> involvement, and now perhaps also neural involvement.  He did have some
[quoted text clipped - 4 lines]
> Jersey.)  Should we try the Mayo Clinic?  Even their web site seems to
> treat sarcoidosis as only a lung disease.  Thanks for any advice.
paul chinaski - 08 Aug 2006 01:52 GMT
> you probably already know that a great number of docs who treat this
> are
[quoted text clipped - 55 lines]
>
> paul

Thanks so much Mr. Holland for your time and effort. We'll start
checking out some of the names and facilities you suggest.  /Paul
Harvey R. Stone - 08 Aug 2006 03:17 GMT
> Thanks so much Mr. Holland for your time and effort. We'll start checking
> out some of the names and facilities you suggest.  /Paul

and that makes it all worth while.
Harv
Paul T. Holland - 09 Aug 2006 01:34 GMT
de nada

you might also want to follow up on this one:

http://www.nsrc-global.net/bulletin.htm

i don't know the details, but it's an  investigational study [don't know if
it has concluded] and the principal researcher is/was  in new jersey...page
included an email address and a phone number

here are listings for support groups in nj:
http://www.sarcoidosisonlinesites.com/northeast%20support.htm#nj

also - take a look at:
http://www.aafp.org/afp/981200ap/belfer.html

read down to the bottom - the author of this paper  includes all
forms/expressions of symptoms...

also this one:
http://www.turkishrespiratoryjournal.com/summary.php3?id=375

> > you probably already know that a great number of docs who treat this
> > are
[quoted text clipped - 58 lines]
> Thanks so much Mr. Holland for your time and effort. We'll start
> checking out some of the names and facilities you suggest.  /Paul
 
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