Sarcoidosis Information Discussion Message Board

On July 6th, 2004,an interview with Dr Trevor Marshall was published at ImmuneSupport.com. Information about the Marshall Protocol in CFS, RA, chronicLyme, and other Autoimmune Diseases is available at www.MarshallProtocol.com. Penny's CFS/CFIDS Yahoo Group is found at this link. This study site, SarcInfo.com, concentrates on the immune diseases Sarcoidosis, Lupus,and Rheumatoid Arthritis. SarcInfo.com is an operation of the Autoimmunity Research Foundation.


** Patient Tutorials - Essential Reading **

 Click here to read "WHY DID I GET SARCOIDOSIS? WHY ME? 

  Click here to read "REMISSION IN SARCOIDOSIS"  

 How a Pathologist can see Bacteria causing Sarcoidosis 

"How does Doctor measure my ACE, and my D-metabolites?"

 PROTECTING YOUR EYES in Sarcoidosis

Minocycline Dosage IssuesVit.D and Calcium in Sarcoidosis

Hypervitaminosis D Symptoms    The SarcInfo F.A.Q.

Medical Abbreviations          CBC Radio Show

  

** Papers for Physicians **

Implications for Autoimmune Disease 
(Here is Fulltext preprint)

Antibacterial mechanisms for ARBs 

Antibiotics in Sarcoidosis- The 1st Year 

Rationale for abx in Sarcoidosis 

1,25-D and Angiotensin II

"New Treatments Emerge.."

Jarisch-Herxheimer in Sarcoidosis

   Bachelez study of Minocycline in Sarc  

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

Partial Index of Archived Topics: (click here for Up-to-Date Discussions)

Error in URL for our ARB paper
Timeline of Herbal Medications
healthcare workers and sarcoid (archive thread)
Neurosarcoidosis, pain - there is a simple answer
Really great info here!
Why do doctors insist on prednisone therapy?
Sarcoidosis/immune or not immune?
** ACE Testing ain't simple... Do it this way...
Enbrel / Sinus / Sleep Apnea
Sarcoidosis and the mines
Healthcare Workers and Sarcoid (active thread)
Sarcoidosis Conf. 30March2002 Cerritos, Calif.
Opioids suggested for refractory arthritic pain
Process of Exclusion/Tuberculosis/Food additives
ACE levels and fibrosis
Dry eyes with sarc.
Granulomas and inflammation
bladder sarc?
Family at higher risk of sarc
Minocycline,Tetracyclines cure sarc skin lesions
Tick-borne Bacteria Causes Sarc in lungs
What are your thoughts regarding alternative medicine?
Parkinson's due to virus or toxin?
Can Lyme Disease tell us anything?
PET scan used for neurosarcoidosis
Dental problems
Sarcoidosis Mythology
Hydroxychloroqine (Plaquenil) kills bacteria
Swedish scientists find new trigger for sarc
ACTH, ACE good sites for understanding.
Sarcoid of the Blood ???
Sarcoidosis and Crohn's Disease
The Debate about an Infectious Origin for Sarcoidosis
Treatment of Tick-Borne Pulmonary Disease
Does your doctor like mysteries?
Are these symptoms the sarcoidosis or the drugs?
The Steps To A Diagnosis
Cough, cough, cough!
If you have Sarcoidosis, you must stay out of the Sun
Struggling for a decent diagnosis
Memory Loss
Joint Pain & Nodules
flea bites/sarcoid?
Useful Blood Tests for Sarc Patients
Sun Can Cause Sarc Relapses
swollen lymph nodes
Fatigue
ocular sarcoidosis
Gallium Scan--Yes or No
Antibiotics
strange sensations
Abdominal Pain and Difficult Swallowing in Sarcoidosis
Thanx for the insight..
assorted eye problems
Pravastatin/Pravachol and sarcoidosis
Retinoic Acid, Vit A and Beta Carotene
Endocrine Disruptors
Depression/state of mind
sarc and bone fractures
Unexplained Gallbladder problem.
kidney sarc
Sarc Targets Non-Smokers?
I am speaking in Downey, So. Calif., July 27th
Cardiac Sarcoid
slow steady decline in PFTs
Systemic drug allergy - Humalin/Humalog?
Fibromyalgia pain shown to be real pain
** Alert-if you take Prednisone, you cannot take Cipro
Sarcoidosis in general
insurance coverage - USA
What's inside your granulomas?
to retrigger sarc
Anyone have Asthma & Sarcoidosis?
Heart Sarcoid
DO NOT POST HERE - archived - Has Prednisone Helped?
Dry Eye Syndrome caused by Prednisilone?
Pleurisy & Pneumonia
Trevor's new paper ...
What Questions to ask a new doctor?
Can Prednisone help me? - what to consider
Muscle Pain & Weakness
1000 messages! Celebrate !!!
Fever and sarcoidosis
Archive - My Vitamin D and ACE test results are back!
sarcoid and DLco level
MRI is clear, but I suffer from neuro, why?
Long suffering (Uveitis)
Skin Sarc, What does it look like?
How does Sarc progress Stage 1 to Stage 2?
1,25-hormone-D3 question
Jaw Pain, Bad Taste, Face Flushing
Lung transplants
U.K. NHS system, and Doctors who just don't get it
Exercise
When should I change Doctors?
What can I do about sarcoidosis?
Sarc and work... Fatigue, sleepyness...
Ibuprofen & Sarcoidosis
Why won't Doctors listen?
COPD with Sarcoidosis
Pain Management
Excessive Perspiration
Lung congestion
Facial Palsy and vestibulocochlear sarc, anyone?
Anxiety
Remission in Sarcoidosis -Our latest manuscript
Calcium Supplements - which should I use?
Archived thread-Doctors and Sarcoidosis-Please do not post here
Sun Glasses
How can I protect my family against getting Sarc?
Bone Loss, Calcium, Magnesium and such...
** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
SARCOIDOSIS CHAT-Bill's on Wed & Luiggie's Thursday
How can we get Sarcoidosis in the spotlight??
Antibiotics reduce Heart Attacks and Death
Spine injury
Why do people get Sarc in different ways?
The 'Snowflake' Disease
back and leg discomfort
Archive of: Herxheimer - worse symptoms as bugs die 7/29/03
Mercola.com publishes 'REMISSION IN SARCOIDOSIS'
Fibroids/Fibrosis and Sarcoidosis
Pneumonitis
Cause of sarcoid
Losing weight and fat storage
Blood Clots
Cholesterol & Sarcoidosis
Active Sarcoidosis
Vioxx Warning & alternative therapies
** Thyroid tests and 1,25-D
** Minocin treats Lymph, Skin & Lung Sarcoidosis
Is InfraRed light dangerous too?
** Alert-Cholesterol Drugs cause Breathing Difficulty **
DO NOT POST: Archived Weaning off Prednisone Posts
Sarcoid in eye, causing loss of fluid
Lymph Node Clearing. Enlarged In The Neck
Sleeplessness, no appetite and severe cough
Vitamin D - when will the level go down?
Need a new Doc - what's the best way to change?
** Bacteria cause Sarcoidosis - Johns Hopkins **
Hand problems, Raynaud's Phenomenon
Do I have sarcoidosis?
neurosarcoidosis
Archived minocycline thread-Please do not post here
- My Sarcoidosis - personal stories and perspectives
** Lipitor, Pravachol, Mevacor, Zocor, Lescol **
** CDC says 60% of Sarc in US caused by TB bugs **
Informed consent, ethics and patient rights
Is Sarc psychosomatic or caused by stress and trauma?
Kidney sarcoid
flu shot and sarc flare?
Is there a Doctor that is really interested in helping?
allergic reactions
DO NOT POST HERE - Archived - Vitamin D LEVELS in FOOD - Nov 10, 2002 to Feb 13, 2005
Canada & UK approve ARB to reduce Kidney Damage
Archive of UK Sarcoidorians to 14 Feb 2004
Insomnia and Hyperactivity
How to find a doctor open to new research
Values for 25 VIT D and 1,25 VIT D
Newly Diagnosed - Sarc and Neurosarc - What now?
Listen to your body
Archive to 7/29/2003 -ARB therapy-nuts and bolts
preparation for vit d test
Makes you think - an infectious disease
Sarcoidosis and rosacea
Explanation of Biopsy
testing for mycobacterium
New symptoms
I'm waiting for my new sunglasses!
Archived SUCCESS stories- please do not post here
*** Happy Holidays to all my SarcInfo friends ***
smallpox vaccination
Fasting for ACE test
Testing and treatment for children
Association of sarcoidosis with Hodgkin disease etc.
Merry Christmas!
CT Scan Results Question
increased sun sensitivity
Just Diagnosed-confused
Mixed feelings...husband recently diagnosed
Alternate-day dosing for prednisone
Starting with a new doc .. again
Inhaled Steroids and Sarc
Just diagnosed
1,25 dihydroxyvitamin D3 etc etc
Sarc and Olefactory (smell) enhancement
New sarcoid patient
DO NOT POST HERE: Archived Sarcoid symptoms
** Hypercalcemia - High Calcium - Important Request
** Your doctor will not do D-Tests?
Need info for Doc appointment
** Archive of General Questions to 13 Feb 2003
** British Medical Journal publishes piece on Vit D
Archive of general questions to 25 Jan 2003
** Cancer Diagnosis in Sarcoid Patients
myopic migraine
White Blood Cells
Dust and Dirt
Sarcoidosis and pregnancy, etc...
Vitamin D workshop
Warnings:Enbrel, Remicade,Thalidomide
*** How to find the Sarc Microbes in your Biopsy ***
melkerson rossenthal syndrome and sarcoidosis
sarcoid and heart murmurs
Darrian Chapman, NBC Newsperson dies of sarcoidosis
Biopsy/Pathology Report...
Lupus - Request for info
Alternate day prednisone dosing - anyone else tried it?
Profuse Sweating
Is there an Unofficial Protocol/Guidline?
Why is sarc not contagious?
Archive of General Questions to 5 March 2003
Treating Sarcoidosis with Herbs?
sweating
Archive of Vit D and ACE Test Results to 7/29/2003
prednisone used to reduce production of calcitriol
Drug-Induced Lung Diseases
***** MEDICAL ABBREVIATIONS *****
Do not post here: Archived Hypervitaminosis D Symptoms
Archive of General Questions to 15 Apr 2003
Lou Gehrig's, Cancer, other Disease, and Minocycline
Archive of General Questions to 31 March 2003
Prednisone, the false cure
Sarc and Liver Damage
Are ARBs available in the UK?
Sarcoid Specialist doctors - will they welcome the cure?
"Needy Meds" help for those who can't afford Benicar
suffering after food ?
READ ONLY - DO NOT POST HERE: Eye problems
Archive of General Questions to 9 May 2003
Weight, Sarcoid and Minocin
Migraines
**MUST HEAR: CBC Radio- The Bacterial Revolution**
ARB therapy Lead to difficulty breathing?
Recipes Without Vitamin D
pain under nails
Spirochetes & CWD bacteria
Archive of General Questions to 25 May 2003
Minocycline and Benicar and MTX
Request : UK Vit D blood test details
Alendronate use for prevention of osteoporosis in sarc patients
Archived General Questions-Please do not post here
I have the orders for the D Tests
Exercise and Sarc
Archived General Questions-Please do not post here
*** Minocycline approved for Rheumatoid Arthritis **
sarc of the nervous system
Supplements for Improving your Immune System
sarc and fungus?
Vit D 3 Day Cycle Documentation
Candida/Opportunistic Bacteria
ergosterol => beer, wine, yeast extract problems?
Archive of General Questions to 13 July 2003
Need help!
Something definite
anything to do when in remission?
** Children with Sarcoidosis
Archive of General Questions to 12 August 2003
Is my medication correct ???
*** I want Lymphocyte data, please ***
Are these doctors blind so they can't see bacteria?
ACE INHIBITORS
SeaSilver and Sarc
**** SarcInfo Back Online Now ****
I NEED HELP!!
Archive of Vitamin D and ACE Results to 20-Dec-2003
** ARB Therapy - Nuts and Bolts **
** Things to Remember Using Minocycline
** Archive of Herxheimer flare questions to 12May04
NUMBNESS AND SWOLLEN HANDS
Mediastinoscopy
Archive to14may04:Benicar=WOW this works bigtime
**US Dept of Defense Patents Mycoplasma causing Sarcoidosis- Says antibiotics should be used in any therapy
Archive of General Questions to Aug 31, 2003
sarcoidosis and doctors
Cardiac Symptoms
looking for help with undiagnosed autoimmune...
NIH/NHLBI grants for Large-scale Research
What vitamins to take?
Can Bone Loss in the Jaw Be Regenerated?
Archived General Questions - Sept 1 to Sept 15 2004 - Please do not post here
Letters to NIH/NHLBI; give your input on Sarc Studies
Archive of General Questions to 30 Oct 2003
First Time - ?Sarc and Corrective Eye Surgery
Archived Requests for Doctors - Do not post here
Aches and Pains in Sarcoidosis
Doctor Refuses D-metabolite Tests
Skeptical but Hopeful
Archive of General Questions to 10/1/2003
Kathy Griffin Memorial Service 9/22/03
Extreme exhaustion
Please help me with Sarcs .....dosage of Tetrex while on Cortisone ???
Archived General Questions-Please do not post here

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Important Background Reading on Sarcoidosis:

  1. Click here to read "WHY DID I GET SARCOIDOSIS? WHY ME?"
  2. Simplified Summary: "Remission in Sarcoidosis"
  3. What to tell your Pathologist so he/she can find the Bacteria in your Biopsy tissue
  4. Click here to find out how Doc can take the Bloodwork for your D metabolites
  5. Doctor's version: "Remission in Sarcoidosis"

Historical perspective on Sarcoidosis:
(WARNING: some of the papers below are out of date, they are for reference only)


  1. Steroid-Treated patients Have higher risk of Cardiac problems
  2. "Evidence Growing That Inhaled Steroids, Like Steroid Pills, Can Cause Bone Loss"
  3. The John's Hopkins Vasculitis Center: Prednisone Side Effects (incl. PHOTOS and PHOTOGRAPHS)
  4. "Corticosteroids contri delaying resolution"
  5. "No data to suggest that corticosteroid therapy alters long-term disease progression"
  6. Cochrane Review - "Oral and Inhaled Corticosteroids have no discernible effect on lung function"
  7. "An Approach to the Treatment of Pulmonary Sarcoidosis With Corticosteroids"
  8. Systemic corticosteroids: Complications of long-term use
  9. 1996 Recommendations for the Prevention and Treatment of Glucocorticoid-Induced Osteoporosis
  10. 2001 Recommendations for the Prevention and Treatment of Glucocorticoid-Induced Osteoporosis
  11. Steroid withdrawal: the ultimate hormone hangover
  12. Steroid-Induced Mental Disturbances
  13. There is no conclusive corticosteroids affect the development of irreversible pulmonary damage
  14. Pain Management - overview
  15. Clinical Guideline For Treatment Of Arthritis Pain
  16. Angiotensin II receptor on BALF macrophages from Japanese patients with active sarcoidosis
  17. 1,25 Dihydroxyvitamin D3 intoxication in Sarcoidosis
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