Sarcoidosis Answers for Physicians, Nurses and Patients

Here at SarcInfo, between 2002 and 2004, we identified the cause of Sarcoidosis, and successfully trialled a curative antimicrobial therapy. During 2005 and 2006 the US FDA designated the antibiotics Clindamycin and Minocycline as Orphan Products in the treatment of Sarcoidosis, and studies are ongoing elsewhere.

For information about this breakthrough, please post your questions at the current study-sites of the Autoimmunity Research Foundation.
 
This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but most of this site is now out-of-date.

 

** Patient Tutorials **

 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?"

 Weaning from Prednisone

 Protecting your eyes in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Hypervitaminosis D Symptoms    The SarcInfo F.A.Q.

Medical Abbreviations          CBC Radio Show

Protocol Phase 1-First 3 months

  

** Papers for Physicians **

Antibacterial Therapy induces Remission 

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

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

The NIH ACCESS Study finds Sarcoidosis does not go away - Click here to see, and print, the brochure


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 Facial Palsy and vestibulocochlear sarc, anyone?
Author: Caroline (---.win.org)
Date:   08-22-02 09:38

Hi all,
a little background: my youngest brother has been experiencing tinnitis and balance issues. his doc's initial thought was Meniere's -- he was sent for a MRI and during or before this test mentioned his older sister has neurosarc. later, he had only been home about 5 minutes and they called him back for another MRI with contrast. they detected a lesion in his brain. diagnoses? unsure maybe MS. or something else maybe along with Meniere's. (my neuro sx. began well before the pulmonary and the lesion on my brain was possible MS).

now, my question: i know that neurosarc may interfere with the VIII cranial nerve. the symptoms are the same as Meniere's. it can even cause Meniere's like attacks, balance issue, tinnitis and eventual hearing problems. does anyone here have any hearing problems related to sarc and this nerve? if so, how were you diagnosed, treated, prognosis as far as going deaf, what doc do you see for treatment, ENT? a lot of questions but any insight would be much appreciated.

if they do diagnose sarc. i will be sending all the D3 info but for now I am so worried for him.

thank you -- caroline from MO
 
 Re: Vestibulocochlear (hearing) sarc anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-23-02 07:19

Caroline (from MO),
1,25-dihydroxyvitamin D abnormalities are not limited to Sarcodiosis. They also occur in Rheumatoid Arthritis and most other inflammatory disorders. The D abnormalities are apparently genetic, and it is safe for you to assume that anybody within your immediate family (the genes seems to be passed down the mother's side) is very likely to have Hypervitimanosis D

Some of the symptoms you are describing sound awfully like this. certainly balance problems, tinnitus and nerve and facial palsy are all known to be caused by a disordered 1,25-dihydroxyvitamin D metabolism.

Please make sure they do the tests for 25-hydroxyvitamin D and 1,25-dihydroxyvitamin D ASAP to try and eliminate this possible cause.

..Trevor..
ps: Neuros generally know nothing whatsoever about D metabolisim, I suggest you get your GP or a D.O. to prescribe the tests.
 
 Re: Vestibulocochlear (hearing) sarc anyone?
Author: Caroline (---.win.org)
Date:   08-23-02 10:11

hi trevor!
thank you so very much for your reply. i just copied your answer and sent it to my brother. when you mention facial palsy, my oldest brother had bells palsy seveal years back. there has to be something in my family! the only common denominator envionmentally is our dad was a firefighter and we went to the 'practice burns'. mom and all her relatives didn't make it past the mid-fifties.

now i am worried about my adult kids and grandkids. my middle son. 32, has arthritis. he had a work injury to his shoulder and had scope surgery. the doc was amazed at how much arthritis was present for his age. his hips and knees also hurt. i will be having a talk with him. i have been so self-centered i am ashamed of myself. i guess i was only absorbing the information as it pertained to sarcoidosis, and me.

i know this is a sarc forum but maybe we all need to take a hard look at our family ties for conditions such as this. maybe i am the only one who hasn't?
heartfelt thanks trevor, caroline from MO
 
 Re: Vestibulocochlear (hearing) sarc anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-23-02 10:36

Caroline,
When your Neuros look at you askance and say that Facial Palsy has nothing to do with Sarc, tell them that in France, where they treat Sarc and TB as entities, Palsy has been recognized as resulting from granulatomous inflammation for decades.

Here is a link to a reference in Pubmed about palsy and vit D intoxication. I have the original article in French, and will happily send it to your Neuro -lol

..Trevor..
 
 Re: Vestibulocochlear (hearing) sarc anyone?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   08-30-02 01:24

Caroline,

You mentioned facial palsy, a sarcoidosis symptom often mentioned on this board, and vestibulocochlear sarcoidosis in regards to your family. The way these are related is that facial and vestibulocochlear are the names of 2 of the 12 cranial nerves. Click on them in the Roman Numeral list in this image and you can see how close together they are, and what each controls. The cranial nerves are often called by their number (i.e., seventh cranial nerve) instead of their name.

To exit the skull, these cranial nerves pass through a narrow bony passage. Here is what it looks like for the vestibulocochlear nerve. Any swelling from inflammation or infection can cause the nerve to press on the skull's hard surface and interfere with nerve function.

Problems with the seventh cranial (facial) nerve may be called Bell's Palsy. If the word "palsy" sounds confusing, it came from a corruption of the French word “paralysie” which means “paralysis.” This article explains that sarcoidosis may increase the odds of facial paralysis occurring and recurring. Here is a view of the seventh cranial nerve in the face. You may better understand how the seventh cranial nerve affects the face by studying this image of the facial muscles. Scroll down on this site for a picture of how facial palsy can affect the appearance of the eyes.

The answer seems obvious: work on getting rid of the inflammation. I know your brothers will appreciate the information on vitamin D and sunlight you are sharing with them. You may already know the information I posted here, but I thought it might help your brothers.

Belinda
 
 Re: Facial Palsy and vestibulocochlear sarc, anyone?
Author: Diana Pargeter (---.cache.pol.co.uk)
Date:   04-22-05 04:57

Belinda,

I have wondered for a while exactly why my eyes are slightly lop-sided. The configuration is almost exactly like the picture in your last link above. However, I am interested as to why the picture is labelled "Facial Paresis: Right. Widened palpebral fissure". I understand that the palpebral fissure is the distance between the eyelids, and since it is her right side that is larger the label is in a correct. However, on myself, it is the other side that has pain, and is the one that I have always assumed has the paresis and is the "faulty side". Have a copped it in different ways on both sides?

Diana

Symptoms 30 years incl tremor & arm weakness, paraplegia, cardiac problems, SOB & joint pain. 3/03 25D 7.2, 1.25D 30 (ratio 4.2); 3/04 25D 4.8, PTH 49; 7/04 PTH 20. Av BP 80/50. 6/25/03 Diovan then 11/11/03 Benicar 40mg every 6hr. 100mg Mino.
 
 Re: Facial Palsy and vestibulocochlear sarc, anyone?
Author: Cosmic-Al (---.blueyonder.co.uk)
Date:   09-06-05 17:21

I would like to dd that I have been living with facial pain/ TN for approx 3 years. My origional diagnosis was Nuro Sarc

To pur a smile on your face, I saw a consultant Privatly at Queens SQ London a speciaist in Nuro and TN, the resolution from the consultation was I as taking too many codine! and it cost me £250 for the complement of the visit into Lndon

I also have been confirmed that I have hearing loss, and the consultant told me i would need a hearing aid in 10 years, but fortunatly with 7 years to go there doesn't seam any more detoration, only when the other half has a grumble!

I also have something going on with my sinuses as they are regualarly blocked up, and I am sure they are all linked.

One way I have found that does work to manage the pain is by administering a stickey plaster with a seed inside it. I press on this regularly and it really works. It is an accupuncture point and is situated where the 1st and 2nd ar piercing on the ear lobe would be. You can get these seeds pre prepared and they are called Verocca seeeds. Worth a go. Wish I knew then insead of spending £250 for a consultation that was worthless

regards Cosmic-al
 
 Re: Facial Palsy and vestibulocochlear sarc, anyone?
Author: Mary G. (---.ard.bellsouth.net)
Date:   09-07-05 07:47

Hi Caroline - I just posted this in the other SarcInfo forum, but I also have allot of family problems, that I now believe to be all connected.

Me - Sarcoidosis
My Son - Hypoglycemic, IBS, Acid Reflux, Anxiety
His Dad (My Late Husband) - Died from Amyloidosis, a major deadly inflammatory disease
Stepson (My Late Husband's son) - RA
My Mom - FMS and I suspect Sarc, IBS, Acid Reflux, Anxiety, Depression, etc.
Her Dad - FMS (but they didn't have a name for it then)
My Sister - FMS, IBS, etc.
My other Sister - Mild FMS
3 Brothers - FMS
3 Nieces - Nearly incapacitated with FMS (Does it get worse with each generation???)


After reading the MP sites for the last several months, I have no doubt that the info provided here is right-on, especially when we read of these family histories!

Mellie-2002-Cough. 2004-IckyEyes, PainJoints/Feet, FatigueMuscles/Body, Swollen Nodes/Glands/Eyes, Thirst/Dry Mouth, Heart Palps, Mental Confusion/Fog, Wobbly. PRE-MP. Synthroid (thyroid removed in '95); Tylenol; Willow Bark or Aspirin. Outside NOiRs.
 
 Re: Facial Palsy and vestibulocochlear sarc, anyone?
Author: Lottie (---.proxy.aol.com)
Date:   09-08-05 03:59

Mellie,

Most of what you have listed are probably, in fact, Th1 illnesses just like Sarcoidosis is.

In another thread you stated that your present husband is diabetic. Diabetes 1 and 2 are both Th1 illnesses. RA is also a Th1 illness, and there are quite a few RA patients on the Marshall Protocol.

FMS is actually a group of symptoms as IBS is. They actually aren’t illnesses, and many people with Sarcoidosis have had a diagnosis of one or both of them prior to, or after their diagnosis of Sarcoid.

There is a great deal about FMS here…
Fibromyalgia-Did I spread infection to my spouse?

And, information about the diseases that the MP can treat is here.

Is the MP an Applicable Treatment for my Disease?

If any of the people that you have listed are interested in confirming that they have a Th1 illness that the MP can treat, all they need to do is to have their D-metabolites tested, and post them here on SarcInfo or at MarshallProtocol.com for analysis as to whether the MP can treat their illnesses.

D METABOLITES TESTS

Perhaps, at least those that you are living with, and you are cooking for, will join you on the MP and regain their health as well.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
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This is an archive site, membership and posting are no longer allowed.

Historical perspective on Sarcoidosis:


  1. The John's Hopkins Vasculitis Center: Prednisone Side Effects (incl. PHOTOS and PHOTOGRAPHS)
  2. Steroid-Treated patients Have higher risk of Cardiac problems
  3. "Evidence Growing That Inhaled Steroids, Like Steroid Pills, Can Cause Bone Loss"
  4. "Corticosteroids contribute to the prolongation of the disease by 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. Prednisone Improves Symptoms but not Lung Function in Sarcodiosis
  8. There is no conclusive evidence that corticosteroids affect the development of irreversible pulmonary damage
  9. Clinical Guideline For Treatment Of Arthritis Pain
  10. Angiotensin II receptor on BALF macrophages from Japanese patients with active sarcoidosis

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