SARCOIDOSIS - General Information and FAQs - ABOUT THE MARSHALL PROTOCOL

⁽^filelink⁾
ACCESS STUDY

The NIH 6-year ACCESS study is the biggest study of Sarcoidosis in history.

Because the PubMed abstracts supplied for public consumption do not tell the full truth as to what the ACCESS study actually found, the Autoimmunity Research Foundation has prepared and distributed a brochure highlighting the true ACCESS study findings. An electronic copy is at URL
http://autoimmunityresearch.org/sarcoidosis.pdf

We also have an annotated copy of the full-text online, at
http://autoimmunityresearch.org/access-2yr.htm

You have to understand that ACCESS did not confirm what was already set into the minds of the sarc pulmonologists, and they, therefore, want to forget all about that 'silly science stuff' as soon as possible, so that they can again get back to anecdotal misinformation which has gained credence by repetition and business as usual.

..Trevor..

One of the most expensive and revealing studies ever done on Sarcoidosis, ACCESS 2003, actually reversed the common misconception about Sarcoidosis remission. Sadly, most doctors treating the disease still labor under the remission myth that has been so oft repeated, even given the time for scientific data to get out to the industry. (Here it is 3 years later and the myth still persists.)

Clinical parameters of FVC, FEV1, Scadding stage of chest radiograph, and dyspnea scale between ACCESS enrollment and the two-year follow-up:

Table III:
_____________FVC________FEV1_______CXR_______DYSPNEA
IMPROVED........20.5% (44)...... 21.9% (47)..... 37.7% (81).....19.5% (42)
UNCHANGED...57.7% (124)....56.7% (122)... 41.4% (89)......67.0% (144)
WORSE..............11.6% (25)..... 11.2% (24)..... 16.3% (35)......13.5% (29)

2/3 of their study group saw no improvement

Notice: FVC, FEV1, Scadding stage, and the dyspnea scale remained unchanged over the two-year period in the majority of the patients.

Notice also: Even in the positive-sounding "improved" category for clinical markers, the percentages described were at best "improved." There is no column for remission because nobody went into remission.

If nobody went into remission before 2 years, what about after 2 years?: "Therefore most patients with persistent disease at two years were unlikely to have resolution of Sarcoidosis."

Finality detail worth noticing in the study:
"end-stage pulmonary Sarcoidosis usually develops over one or two decades [17]"
...............

Also read: Pulmonary Reviews.com Trends in pulmonary and critical care medicine, Vol. 7, No. 4 April 2002 ( http://www.pulmonaryreviews.com/apr02/view.html ), publication by two of the ACCESS authors to see their insights:

"One analysis has proved what previous anecdotal reports only hinted at—that sarcoidosis aggregates in families.[1] It found that the risk for sarcoidosis was increased 4.5-fold in parents and siblings of patients with the disease, lead investigator Benjamin A. Rybicki, PhD, told PULMONARY REVIEWS. Familial aggregation was much more prominent in whites than in African-Americans, but an important risk factor in both races, added Dr. Rybicki, Senior Research Epidemiologist with the Henry Ford Health System in Detroit.

"The second analysis revealed that the initial presentation of sarcoidosis varies by age, sex, and race.[2] This finding challenges the widely held stereotype that the patients most often affected are African-Americans and young adults, said lead investigator Robert P. Baughman, MD, Professor of Medicine at the University of Cincinnati."

Joined:	Sat Jul 10th, 2004
Location:
Posts:	17283
Status:	Offline

Posted: Thu Sep 8th, 2005 19:44

^(filelink)

Pregnancy

Pregnancy usually goes to term with no problems. You need to be aware that some of the drug therapies (methotrexate, anti-malarials, Thalidomide, etc. ) normally used for sarcoidosis are contraindicated in pregnancy. Oral corticosteroids increase the risk of cleft palate.

We know that in pregnancy, the placenta manufactures 1,25-dihydroxyvitamin D, primarily in the second and third trimesters and the level of 1,25-D will soar. It is presumably produced to strengthen the immune system of the child, but it significantly overloads the immune system of mothers who are sufferers of sarcoidosis or other Th1 inflammatory diseases. This is in addition to the 1,25-D produced by the sarcoid activated macrophages.

See Pregnancy increases 1,25-D

Studies show that most women (not all) with sarcoidosis report that they feel better during pregnancy. This is probably due to suppression of the immune system by high 1,25-D, lack of bacteria killing and, therefore, no Herxheimer symptoms.

A report about the mother's immune system response during pregnancy may help explain why women with sarcoidosis report feeling better when they are pregnant. Sarcoidosis involves a Th1-activated immune system response. This report explains that the NF-kappaB/IkappaB signaling pathway is down-regulated in T cells in pregnancy, shifting the immune system away from Th1 and toward a Th2 immune response. There are other factors to consider, especially vitamin D and sunlight exposure. We know that these play a role in activation of NF-kappaB and the Th1 immune response.

High levels of 1,25-D can cause increased somnolence, fatigue and symptoms such as joint pain and breathing problems. The 1-25-D (calcitriol) levels increase throughout pregnancy in normal women. The level of 1,25-D is highest in the third trimester and falls soon after delivery in normal women.

Relapse is common post-partum with symptoms often worse than before pregnancy. Your 1,25-D will come down after delivery. If that reduction allows your immune system to function better, you may experience an increase in symptoms due to the Herx reaction.

This study reports that increased serum 1,25-D levels persist through lactation.

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

A healthy person will have 1,25-D manufactured by the placenta during pregnancy, but the manufacture of 1,25-D in the kidneys will be down-regulated to compensate.

The kidneys of a person with advanced Th1 disease have usually lost the ability to adequately down-regulate the 1,25-D levels, as there is too much 1,25-D being manufactured in the inflammation, in the eyes, and in the skin.

The interpretation of the 1,25-D data value during pregnancy will be more difficult. The 25-D levels may also be an aid to interpretation.

Please be aware that ARBs (Benicar) and most of the Marshall Protocol antibiotics cannot be used during pregnancy and lactation.

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

If you are contemplating pregnancy, you should consult your doctor about taking care of your health and treating your inflammatory disease first. If you are already pregnant, you should do everything possible to keep the level of 1,25-D down. This means diligent avoidance of ingested Vitamin D and sunlight/bright lights exposure.

Most sarcoidosis mothers do have healthy babies. This published article on pregnancy and sarcoidosis says,
"If well managed, pregnancy in women with sarcoidosis is usually carried to term with no problem, excepting rare contraindications. There is no specific risk for the embryo-fetus. Fertility is unchanged. Pregnancy can be contraindicated in case of respiratory failure due to heart failure or central nervous system disorders. A vital capacity less than 100 ml or pulmonary hypertension contraindicate pregnancy. Pregnancy should be discouraged during a period of active disease progression., but pregnancy in itself does not aggravate sarcoidosis. A flare up 3 to 6 months after delivery is not unusual."

Regarding cesarian section versus vaginal delivery, consider that sarcoidosis inflammation is known to have an affinity for scar tissue,

You will have to decide if you want to postpone treating your sarcoidosis in order to nurse your baby. These bacteria multiply very slowly so you could base you decision on how well you feel.
Can a pregnant woman be on the Marshall Protocol?

Last edited on Sat Aug 25th, 2007 22:13 by Foundation Staff

Joined:	Sat Jul 10th, 2004
Location:
Posts:	17283
Status:	Offline

Posted: Thu Sep 8th, 2005 20:22

^(filelink)

Familial Aggregation

Familial Aggregation in Sarcoidosis
A Case-Control Etiologic Study of Sarcoidosis (ACCESS)
Am. J. Respir. Crit. Care Med., Volume 164, Number 11, December 2001, 2085-2091

Am I contagious?

Will re-infection occur if my partner or family members are not treated?

Joined:	Sat Jul 10th, 2004
Location:
Posts:	17283
Status:	Offline

Posted: Sat Sep 24th, 2005 18:16

^(filelink)

Cancer Diagnosis in Sarcoid Patients

CANCER and Th1 inflammation

Joined:	Sat Jul 10th, 2004
Location:
Posts:	17283
Status:	Offline

Posted: Fri Oct 7th, 2005 05:38

^(filelink)

Epidemiology

I noticed in some reading that African Americans have almost 4 times the incidence of sarcoidosis as whites

That data is largely erroneous. There is a group of sarcoidosis researchers who get their grants from studying Sarc as a minority disease, and they have a vested interest in see that it remains viewed as such.

An alternative perspective on the ACCESS study data (saying race was not a big issue) can be found at
http://www.pulmonaryreviews.com/apr02/view.html

..Trevor..

......................................

Modern Scandinavians have a lot of fish in their diet. That puts them at a severe disadvantage by comparison with bacteria which have adapted to live in a high-vit-D environment.

Sarcoidosis is a global disease. You just can't compare the incidence rates in poor countries with those in the first world. There are issues of service, and also of the poorer countries having bigger problems to worry about than reporting chronic disease. I deprecate all talk about differences between populations. When it all comes down to it, any differences are quite small, and tell us nothing about Th1 disease, or the impact of Th1 disease.

Last edited on Sat Jan 28th, 2006 05:49 by Foundation Staff

Joined:	Sat Jul 10th, 2004
Location:
Posts:	17283
Status:	Offline

Posted: Wed Oct 12th, 2005 05:22

^(filelink)

Studies reporting Mycobacterium Avium (MAC) as an opportunistic infection in sarcoidosis

Quantitative analysis of mycobacterial and propionibacterial DNA in lymph nodes of Japanese and European patients with sarcoidosis.
Author: Eishi Y, Suga M, Ishige I, Kobayashi D, Yamada T, Takemura T, Takizawa T, Koike M, Kudoh S, Costabel U, Guzman J, Rizzato G, Gambacorta M, du Bois, Nicholson AG, Sharma OP, Ando M
Source: J Clin Microbiol, 40(1): 198-204 2002

Opportunistic infections and sarcoidosis[Article in French]
Author: Girard N, Cottin V, Hot A, Etienne-Mastroianni B, Chidiac C, Cordier JF
Source: Rev Mal Respir, 21(6 Pt 1): 1083-90 2004

Sensitive differential detection of genetically related mycobacterial pathogens in archival material.
Author: Ikonomopoulos JA, Gorgoulis VG, Kastrinakis NG, Zacharatos PV, Kokotas SN, Evangelou K, Kotsinas AG, Tsakris AG, Manolis EN, Kittas CN
Source: Am J Clin Pathol, 114(6): 940-50 2000

Detection of Mycobacterium avium complex in cerebrospinal fluid of a sarcoid patient by specific polymerase chain reaction assays.
Author: el-Zaatari FA, Graham DY, Samuelsson K, Engstrand L
Source: Scand J Infect Dis, 29(2): 202-4 1997

Disseminated cutaneous Mycobacterium avium-intracellulare resembling sarcoidosis.
Author: Epps RE, el-Azhary RA, Hellinger WC, Winkelmann RK, Van Scoy RE
Source: J Am Acad Dermatol, 33(3): 528-31 1995

Joined:	Sat Jul 10th, 2004
Location:
Posts:	17283
Status:	Offline

Posted: Sat Dec 3rd, 2005 16:15

Chemotherapy
(filelink)

Chemotherapy usually brings to mind the drugs used to destroy rapidly growing cancerous tissue. On a very simplistic level, in the past, Th1 diseases like sarcoidosis have been considered to be caused by an "out of control" immune system so some physicians had concluded the same drugs used to stop cancerous cell growth may stop growth of immune cells and damage to major organs.

Drugs used to treat cancer are usually not used on mild cases, but when prednisone doesn't stop aggressive sarcoidosis, physicians who don't know what causes sarcoidosis or what makes it worse may feel desperate to help a worsening patient. In those instances, chemotherapy can be "justified" with our current medical system. The misconception that sarcoidosis has a normal course a few months longer than chicken pox may result in a feeling of panic and gloom when it doesn't go away.

Sadly, radiation therapy, even whole-brain radiation, has also been used in cases of aggressive sarcoidosis. Patients just don't have a clue beforehand that they may be headed in that direction.

As more physicians become aware of the cause of sarcoidosis and the efficacy of the Marshall Protocol, no doubt attitudes and standard treatment will change

Belinda Fenter

Joined:	Sat Jul 10th, 2004
Location:
Posts:	17283
Status:	Offline

Posted: Mon Jan 16th, 2006 00:20

Sarcoidosis patients must avoid ingested Vitamin D ^{avoidvitDlink}

It is true there is a lot of confusion about vitamin D. It's been that way ever since vitamin D -- which is not truly a vitamin -- was discovered in the 1900s. Vitamin D isn't really a vitamin because, by definition, a vitamin is a nutrient necessary for healthy life that cannot be obtained from any source other than food.

Vitamin D is not a vitamin for two reasons:
1) Vitamin D is actually manufactured by the body, and this is by far the overwhelming major source for all humans. Vitamin D is manufactured by the body in response to light or sunshine. That is why it has long been called "the sunshine vitamin." It takes only a few minutes (10-15) minutes of sunshine on the forearm two or three times a week for a person to get all the vitamin D they need. Most people get lots more than that just from driving their car.

2) The end-product of vitamin D, the part put used by the body, is actually a hormone: Hormone D. The hormone was only discovered about 30 years ago, so some physicians may not have been thoroughly trained in the important role of Hormone D, which is much more important than food sources of vitamin D.
Food sources of vitamin D beyond what the body manufactures and uses on its own are stored in fat cells, like other fat-soluble vitamins. Nowdays it is known that the immune and skin cells produce Hormone D without any help at all from the digestive system.

People who have sarcoidosis produce Hormone D in unregulated amounts because sarcoidosis affects the immune cells, and excess production of Hormone D is one result. Research has shown that Hormone D helps granulomas to grow and proliferate, and there has not been any published research disputing that conclusion.

Excessive amounts of Hormone D can make any person feel very ill, with symtoms including fatigue, drowsiness, pain, "brain fog," memory problems, insomnia, sensitivity to light, visual problems, tingling and numbness, headache and nausea.

Including vitamin D foods or supplements in a daily routine will provide additional fuel to make more Hormone D. The warning that people with any granulomatous disease -- including sarcoidosis -- should avoid nutritional sources of vitamin D (including supplements) is found in many sources of published medical literature.

Since people with sarcoidosis are producing so much Hormone D, their stores of the "vitamin D" used to make Hormone D are likely to measure low. That's because the vitamin D is being used at an abnormally rapid rate by the cells converting vitamin D into Hormone D.

That is why it is important to have two blood tests done to determine what is going on. Both the vitamin D (25-hydroxyvitamin D) and Hormone D (1,25-dihydroxyvitamin D) must be tested to determine vitamin D status in people with sarcoidosis. Generally, unless a sarcie has been using vitamin D supplements or products, the vitamin D will be low (due to rapid conversion to Hormone D) and the Hormone D will be elevated.

Levels of Hormone D generally have nothing to do with digestion or calcium levels. Some people with sarcoidosis do get elevated calcium, which is regulated by the parathyroid hormone. Years ago, it was thought that vitamin D alone regulated calcium. Now it is known that Hormone D has powerful and complicated effects on many body functions and cells, including the immune cells and the brain.

Belinda Fenter

Joined:	Sun Jul 11th, 2004
Location:
Posts:	1178
Status:	Offline

Posted: Tue Feb 28th, 2006 03:58

^{skinsarcimageslink}Images of cutaneous sarcoidosis

HAIR AND SCALP
Hair Loss - Alopecia Caused by Sarcoidosis
Hair Loss and Plaquelike Skin Lesions in sarcoidosis (click on Figures 1, 2 and 3 in the article)
Scalp this is a man with a shaved head
Scalp lesions may lead to diagnosis of sarcoid

SARCOIDOSIS ON THE HEAD AND FACE
Red Plaques on forehead
Spots Darker than Flesh on the Face
Swollen eyelids (Lacrimal gland swelling)
Enlarged Lacrimal Gland
Sarcoid Lesion In Lining of Eyelid
Papules (discolored bumps) around the eyes
Annular plaques on Face
Cheek lesion
Sarcoidosis on the nose - lupus pernio
Sarcoidosis of the nose (Lupus pernio)
Lupus Pernio in Sarc
Lupus Pernio Arising from a Tattoo in Sarcoidosis
Intranasal Inside the Nose
Corner of the Mouth
Inside Upper Lip
On the Tongue
Gingival Swelling Due to Sarcoidosis

BACK AND TRUNK
Upper Neck in Dark Skin
Upper Back
Back and flank
Sarcoidosis on the back
Multiple Large Plaques on the Back and Trunk
Lived-red to brownish, deeply infiltrated and markedly elevated plaques of two years (Click on the Figure Numbers in the text)

ARMS AND HANDS
Sarcoidosis Lesions on the arm
Sarcoidosis on the elbow
Palmar erythema and hoarseness: an unusual clinical presentation of sarcoidosis
Red Lesions, Pimple-like
Skin -Colored Firm Plaques that appeared on hands, arms and legs due to Sarcoidosis

LEGS and FEET
Erythema Nodosum
Erythema Nodosum
Sarcoid Plaque on Knee
Large Red Plaque Surrounded by Papules on lower leg
Coarse, scaly skin Acquired Icthyosis

CHILDREN
Child first thought to have atopic dermatitis, diagnosed with sarcoidosis
Several photos of sarcoidosis skin lesions on a 7-year old

SARCOIDOSIS ERUPTION IN A SCAR
Infiltration of scar

PETECHIAE
Pinpoint to pinhead-sized red dots (this image has an animation showing how these lesions don't blanch) that are a result of the rupture of capillaries

IMAGE GROUPS
A collection of photos of sarcoidosis
Erythema Nodosum, papules, small nodules, raised plaques, lupus pernio and psoriasis-like lesions

Joined:	Sat Jul 10th, 2004
Location:
Posts:	17283
Status:	Offline

Posted: Fri Jun 23rd, 2006 19:23

Statins are contraindicated on the MP ^(statinlink)

Myotonia associated with sarcoidosis: marked exacerbation with pravastatin.

Clin Neuropharmacol. 1999 May-Jun;22(3):180-1.

Riggs JE, Schochet SS Jr.

Department of Neurology, West Virginia University School of Medicine, Morgantown 26506-9180, USA.

A 37-year-old man with sarcoidosis developed severe electrical and clinical myotonia while taking pravastatin for hypercholesterolemia. Myotonia associated with sarcoidosis is rare. Pravastatin is associated with myotonia in animals. This case suggests that sarcoidosis and pravastatin, two entities not frequently associated with myotonia, may interact in a synergistic manner to produce severe clinical myotonia in humans.

Joined:	Sun Jul 11th, 2004
Location:
Posts:	1178
Status:	Offline

Posted: Wed Jun 28th, 2006 02:05

Death from Sarcoidosis

According to this 1997 report from the National Institute of Allergy and Infectious Disease, which is on file in the Library of Congress, "approximately one-fourth of the chronic sarcoidosis cases are dying due to respiratory failure, or other pulmonary dysfunctions."

Belinda

Joined:	Sun Jul 11th, 2004
Location:
Posts:	1178
Status:	Offline

Posted: Fri Jul 21st, 2006 22:11

Immunosuppressive and Cytotoxic Therapy for Pulmonary Sarcoidosis

The Cochrane Database of Systematic Reviews recently published their review of the use of immunosuppressive and cytotoxic therapy for sarcoidosis and concluded there is:

Not enough evidence that immune-suppressing drugs are beneficial in the treatment of pulmonary sarcoidosis

"Sarcoidosis is a condition that can affect most of the organs in the body, including the lungs, heart, brain, bones, liver and skin. Patients who have severe disease or those who do not respond to treatment with steroids are often given powerful agents that suppress the immune system in an attempt to control the disease. However, these drugs have severe side effects. There is no evidence at the moment that the benefits of these drugs outweigh their side effects."

The drugs reviewed included methotrexate, chloroquine and cyclosporin A.

Joined:	Sat Jul 10th, 2004
Location:
Posts:	17283
Status:	Offline

Posted: Thu Aug 10th, 2006 04:49

Standard of Care
⁽^carefilelink⁾

There is no "Standard of Care" in Sarcoidosis. The NIH/NHLBI just put out new guidelines which advises against the long-term use of steroids, and which mentions that antibiotics (Tetracycline) have been some use. It is at URL
http://www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_treatments.html

You should print a copy and send it to the Physician. Feel free to include a copy of this message.

Note particularly the words "sometimes for a year or more." There is no concept that any patient should be on Prednisone for extended periods (beyond a year or so). An internal battle amongst the specialists has caused this text to change several times in the past 18 months (the Foundation was the instigator of many of those changes, and we have all the paperwork on file). They all know that Prednisone is not a long-term solution, and that it has significant side effects (count them) but it is all they have to hang their hat on.

If the issue of "standard of care" is ever used to deny treatment, I would be happy to testify in an ethics hearing at the Hospital whose doctors are refusing to treat - testify that there is no standard of care, that there are no studies showing long-term efficacy of any sarcoid therapy (except ours). Mostly the physicians try to use a "concensus statement" as printed validation that a 'standard of care' exists, but the statement they use is old, and was not prepared through any NIH-accepted concensus process. I know that a similar ethics hearing was recently held at the NIH, and that the pulmos lost. I can disclose those details in camera, but not in public.

I doubt they will find a pulmonologist with enough stupidity to try and paint an opposing picture, although some of these sarcoid specialists continue to confound me with their bluster and cover-up. Every one of them knows they bury their failures, yet they try to assuage their consciences by persuading themselves there was no other way.

Sincerely,
Trevor G Marshall, PhD, 31 March 2006

Joined:	Sat Jul 10th, 2004
Location:
Posts:	17283
Status:	Offline

Posted: Thu Aug 10th, 2006 05:31

WASOG politics
⁽^{wasogfilelink}⁾
The pulmonology department at Cleveland Clinic knows about our research, but the sarcoidosis specialist there has apparently rejected it.

You need to understand that for 5 years now, the sarcoid pulmonologists, as a group (they have an organization called WASOG) have done everything they could to throw hurdles into my path. You yourself will have to ask them their motivation for doing that.

Pulmonary Hypertension resolves as folks recover with the MP, but you will have to find a physician who is prepared to help you survive, rather than just trying to prolong life (the specialists are still using the same ineffective treatment concepts which they have used for the entire last half of the 20th Century). It takes guts to go against current medical pragma, and a very cool head. Your choice of physician at this point is very important.

..Trevor..
ps: I myself was told I had 18 months to live. That was in 1978, so don't get too hung up on it. That prognosis was incorrect, just as just about all of the WASOG dogma about Sarcoidosis is incorrect. However, cardiac involvement is serious, and the treatments traditionally used for cardiac sarcoidosis make it very hard to survive for more than about 5 years beyond diagnosis (please ask your Doc about your specific survival prognosis). So that means you don't have a lot of time to sit and twiddle thumbs, if you value your life, and your family.

Joined:	Sun Jul 11th, 2004
Location:
Posts:	1178
Status:	Offline

Posted: Mon Aug 14th, 2006 01:05

Sleep Apnea and Sarcoidosis
^{(sleepfilelink)}

The business of diagnosing and treating sleep apnea has boomed over the past few years. Sleep apnea is the temporary absence of breathing during sleep. People with sarcoidosis or other Th-1 diseases are often diagnosed with disordered breathing (or sleep apnea). This diagnosis should not diminish concern about and focus on treating the primary disease: sarcoidosis.

Sarcoidosis itself can cause obstuctive sleep apnea due to the fact that sarcoid inflammation and granulomas (which are tumors) can obstruct upper airway passages, causing . In addition, use of the common therapy for relieving sarcoidosis symptoms: prednisone, which is a corticosteroid, usually results in significant weight gain. Obesity has been related to sleep apnea and weight reduction can result in some symptomatic relief.

Joined:	Sun Jul 11th, 2004
Location:
Posts:	1178
Status:	Offline

Posted: Sat Sep 2nd, 2006 21:22

Disease Clusters and Husband/Wife Cases
⁽^familialLink⁾

Clusters of the disease have been reported, leading to speculation about person-to-person transmission or a shared exposure to an environmental agent. There have been case reports of familial clustering of sarcoidosis as well as husband-wife disease. A case-control study of residents of the Isle of Man found that 40 percent of the persons with sarcoidosis had been in contact with a person known to have the disease, compared with 1 to 2 percent of the control subjects. Studies have also revealed seasonal clustering of cases in the winter and early spring...

One study reported three cases of sarcoidosis among 57 firefighters who apprenticed together. In the Isle of Man study, 18.8 percent of the cases of sarcoidosis occurred in health care workers (mainly nurses), compared with an incidence of 4.2 percent in the control group.

Risk of Sarcoidosis for First- and Second-Degree Relatives

In a large study involving 10,862 first- and 17,047 second-degree relatives of 706 sarcoidosis case-control pairs, persons with the illness were almost five times more likely than controls to have a sibling or parent with a history of the disease.

Writing in the first of two December issues of the American Thoracic Society peer-reviewed American Journal of Respiratory and Critical Care Medicine, Benjamin A. Rybicki, Ph.D., of the Department of Biostatistics and Research Epidemiology, Henry Ford Health System, Detroit, Michigan, along with 22 associates, reported that the odds of a first- or second-degree relative with a history of sarcoidosis being related to a disease case were 4.6 times greater than those of a control subject.

Joined:	Sat Jul 10th, 2004
Location:
Posts:	17283
Status:	Offline

Posted: Mon Nov 13th, 2006 00:06

⁽^filelink⁾
Cautionary Warning for Members Who May Be Hospitalized

It has come to the attention of the Autoimmunity Research Foundation that there is a serious problem concerning treatment received by seriously ill patients when they are hospitalized.

Sarcoidosis

Sarcoidosis patients are especially at risk.This may stem from the current attitude among pulmonologists who have deemed themselves sarcoidosis experts despite their dismal failure to find a cure. Current literature published by these specialists states that once a sarcoidosis patient’s respiratory function falls below 50%, there is little hope of recovery.

This belief and the reluctance to acknowledge the success of the Marshall Protocol and the insistence on continuing to treat sarcoidosis with various immunosuppressants may lead to inadequate or detrimental treatment during hospitalization for a secondary illness or an apparent exacerbation of the disease.

Immunosuppressants

Because the average doctor knows little about sarcoidosis, patients in respiratory distress, may be given immunosuppressants inappropriately, even in the presence of an acute infection. Patients who are hospitalized may have no choice but to be treated by one of these sarcoidosis ‘experts’, either directly or by consultation.

Misinformed doctors, believing that sarcoidosis is incurable, might consider the patient’s situation to be terminal and not support his/her efforts to overcome seemingly insurmountable odds. Therefore, it is necessary to warn all members with reduced respiratory function that hospitalization could be dangerous to their well-being.

Risks of hospitalization for all patients

Hospitalization exposes fragile patients to additional serious problems such as antibiotic-resistant secondary infections, emboli, medication side effects or other serious adverse events. Compromised patients may not be able to combat these complications.

The following suggestions are meant to prevent the need for hospitalization and provide guidance should you find yourself in an emergency situation.

-Do not minimize the seriousness of your illness to yourself or your family.

-Follow the MP cautiously and slowly to avoid an exacerbation of symptoms that becomes so severe you feel you need to go to the ER or Urgent Care.

-Ask the study site moderators for help as soon as you think you are having a problem.

-Make sure a family member or friend knows how to access the study site should you be too ill to do so yourself.

-Take all known precautions to avoid an acute infection. See My respiratory function is poor. How can I prevent an acute infection?

-Ask your doctor about having a supple of oxygen on hand for an emergency situation.

-If you do develop an upper respiratory infection (such bronchitis, pnuemonia, sinusitis, otitis media) that needs treatment with an antibiotic, insist on a culture and treatment with a fluoroquinoloe (such as Levaquin) until the culture is read so you can continue the Benicar blockade. See My doctor thinks I have an upper respiratory infection. What should I do? (Sinus infection, cold, flu, pneumonia, bronchitis)

-Ask your MP doctor to alert his/her staff to fit you in at their clinic immediately if you should need to be seen by a doctor.

-Ask your MP doctor to call Dr. Marshall for suggestions regarding your care if s/he isn’t sure what to do.

Power of Attorney for Health Care

Be sure any previously made advanced directive (living will or power of attorney for health care) is up to date and that your health care agent (designated decision-maker) is someone you deeply trust and who knows about the Marshall Protocol what your desires are in case you are unable to make them known. If you have not filled out POA papers for health care, your local clinic should have a simple form available (no lawyer is needed). Keep a copy on file with your doctor and one in your possession.

If you find yourself at the ER or Urgent Care:

-Ask the ER physician to call your MP doctor.

-You have the right to refuse treatment to the extent permitted by law and to be informed of the consequences of your refusal.

-You have the right to be involved in all aspects of your care, including treatment decisions.

-If you are incapable, a member of your family or your designated decision-maker should be allowed to participate in these decisions. Make sure they are familiar with the MP guidelines.

-Have someone with you who will be assertive enough to advocate for you.

-Do not attempt to explain the Marshall Protocol, just advise ER staff of the meds you have been taking that were prescribed by your doctor.

-The focus of treatment should be on stabilizing the acute problem with standard methods that will not compromize the MP and which will allow you to return home as soon as possible rather than be admitted to the hospital.

-Question everything and ask your advocate to take notes.

-If oxygen is not offered and you are short of breath, ask for it (assure the doctor oxygen is appropriate to treat sarcoidosis)

-If you need an antibiotic, insist the doctor prescribe a fluoroquinolone (such as Levaquin) so you can go home and continue the Benicar blockade (you may need to discontinue MP antibiotics during the duration of treatment with a fluoroquinolone). See I need to take a different antibiotic for awhile. What should I do?

-Refuse all steroids in any form (oral, IV, injected or inhaled).

-Insist on increasing the Benicar blockade by taking 40mg orally every 3-4 hours and 20mg sublingually (under the tongue) with each oral dose.

-You do not need the ER doctor’s permission to resume the MP when you return home.

See Information for emergency personnel

If hospitalization is suggested, you or your designated decision-maker should:

-Ask for specific reasons why this is necessary.

-Ask if you can receive the same care at home, perhaps utilizing a Home Care service while being supervised by your MP doctor.

-Insist that the referring physician call your MP doctor or Dr Marshall before you agree to hospitalization.

If you find yourself in the hospital, you and your designated decision-maker should know:

-You have the right to refuse any treatment (you may have to sign a waiver). Ask to be allowed time to think it over before you agree to a treatment.

-Insist that no one caring for you is allowed to consult a sarcoidosis expert or pulmonologist or any other health professional about your treatment without your (or your POA's) express written permission. You do not waive your right to privacy under HIPPA and no attempt should be made to bypass that right by hiding your identity. This will prevent doctors from consulting any 'expert' on sarcoidosis who is likely to tell them to discontinue the Marshall Protocol.

-You have the right to know the identity, professional status and professional credentials of health care personnel, as well as the name of the health care provider primarily responsible for your care.

-You have the right to receive an explanation regarding your diagnosis, treatment, medical procedures, and prognosis (what to expect), in terms you can understand. When it is not medically advisable to provide this information to you, it should be relayed to appropriate family members or your designated decision maker.

-Have an assertive person (who will ask lots of pointed questions of everyone) to stay with you day and night if possible.

-Your advocate/s should keep a diary of your hospital stay.

-Insist your MP doctor be part of the consultative process. Ask if s/he has been consulted when any significant decision is made.

-In the event that you cannot make decisions for yourself, your health care agent (Power of Attorney for heath care or POA) can advocate on your behalf. Make sure s/he is familiar with the Marshall Protocol guidelines.

-Make sure the only sarcoidosis expert consulted is Dr. Marshall, Ph.D who has published papers describing both the cause of, and cure for, pulmonary, cardiac and neuro-sarcoidosis. In an emergency, he can be reached 24/7 at 805-492-3693 (PST).

-Insist on being told when anybody outside the team of doctors you or your designated decision-maker have met is given a summary of the case, or consulted in any way.

-Refuse all vitamin D supplementation......in food, IV fluids or tube feedings. Alert staff to any other food allergies.

-Insist that your environment be altered to reduce lighting to 30 lux.

-Treatment during hospitalization should be focused on stabilizing your acute disease exacerbation or infection.

-Immunosuppressants such as corticosteroids (prednisone, solu-medrol, etc., Enbrel (etanercept) , Humira (adalimimab) and Remicade (infliximab) are not appropriate treatments for any patient. Doctors may insist it is the standard of treatment for a sarcoidosis patient.

The success and increasing popularity of the Marshall Protocol is apparently threatening to the specialists who have exercised sole power in guiding the treatment of sarcoidosis patients. Sadly, it seems these specialists are looking for opportunities to demonstrate immunosuppression works, and the MP doesn't. Sarcoidosis patients are at high risk while this attitude prevails.

The following paper will come in handy should you need to bring a doctor up-to-date with the newly documented ineffectiveness of immunosuppressive drugs in the therapy of sarcoidosis. The Cochrane Report http://tinyurl.com/yb8ond

-You should refuse any 'standard treatment' for chronic sarcoidosis because this condition is being treated effectively by another physician.

-It may be impossible to persuade a specialist to allow the Benicar blockade while hospitalized.

-The goal should be to overcome the acute problem in order to be released from the hospital as soon as possible.

-Make your wish to return home as soon as possible very clear. Ask for supportive home services to facilitate this. You may need 24/7 caregivers, oxygen, IVs, nebulizer, etc.

-Demand to continue the Benicar blockade.

-Refuse all antifungals.

-If an antibiotic is ordered insist on a fluoroquinolone until a culture proves a different antibiotic is needed. See I need to take a different antibiotic for awhile. What should I do?

-Know your HIPPA rights. Find out who is allowed to have access to your confidential medical information and how to get that information for your own use.

-You have the right to voice concerns or complaints regarding your experience as a patient. You are entitled to information about the mechanism for the initiation, review, and resolution of any complaints or concerns. If necessary, contact the customer advocate, hospital ombudsman or social worker for help.

Print out these documents and put them in a folder for easy reference. Take them with you if you go to the ER or Urgent Care.

See also:

See Information for emergency personnel

Hints for MCS sufferers who may be hospitalized

Joined:	Sat Jul 10th, 2004
Location:
Posts:	17283
Status:	Offline

Posted: Wed Nov 22nd, 2006 06:00

Letter to the NIH from a long-time sarcoidosis sufferer
(filelink)

Hello, I'm Janet Foutin. I have Sarcoidosis. You might recognize it as the disease that killed Reggie White. Sarcoid death didn't just start or stop with him, either. That said, the NIH currently says that this is not a deadly disease, yet their own study shows that once you have it, it kills in 10 to 20 years. Yet this information is being hidden. The NIH is not telling the public the truth about this deadly disease. They are also doing their best to suppress the information that even low-cost antibiotics can effect a cure. Why?

NIH FOR DUMMIES:
If you read this information from the NIH for patients, you might be lead to believe this disease is no big deal (I did the math in parenthesis):

140,000 Americans suffer from Sarcoidosis. Most live a normal life. 60% (@84,000) recover on their own
30% (@42,000) permanent damage
10% (@14,000) serious damage that can be fatal
A startling statement also posted on this slide show clearly contradicts findings in the NIH Access Study:
"Fortunately, many patients with Sarcoidosis require no treatment. Symptoms are usually not disabling and tend to disappear on their own."
(see reference for full online patient booklet below)

Unfortunately, even the NIH ignored their own well-funded access study when they updated the slide show information this spring (see reference notes below). The expensive Access Study (2-year perspective of patients) indicates somewhat different outcomes for Sarcoidosis patients -- none of the patients showed remission, and most got worse! But you have to actually read the study and look at the data -- not the conclusions of the report to find that detail. (http://autoimmunityresearch.org/access-2yr.htm)

FIND IT ON THE WEB
Another very interesting phenomena is occurring, too. Sarcoidosis patients are finding and demanding health with the Marshall Protocol, which is based on science and research. More and more patients are getting it through word-of-mouth and the Web, and they are not daunted by detracters, either.

Dr. Trevor Marshall, Ph.D. is a skilled bio-chemist that suffered years with Sarcoidosis, even with end stage lung conditions, but would not accept sickness and death for an answer. Building on research by other scientists like Dr. Lida Mattman (1998 Nobel Prize nominee) and understanding available prescription chemical processes in biological environs, he defined the "Marshall Protocol" to stop the disease process. Fully aware of technical publication requirements, he researched and published using ethical parameters. He now has willingly shared these findings --at no charge -- with Medical Doctors and their patients so others could achieve wellness, too.

I, like hundreds of other Sarcoidosis patients, was tired of never getting any better or being fed drugs that do not cure but do cause serious side effects that had actually made my disease worse. I, like hundreds of other Sarcoidosis sufferers (that clearly were not getting any better or going into remission -- with/without traditional treatments), turned to the Web to find information that might lead to an end of my suffering.

Fortunately, I found the Marshall Protocol, examined the evidence, took action, and am now enjoying the benefit if science at its best.

Compared to the rosy picture the NIH paints for patients, Dr. Marshall is not afraid to write this: "Last year 73,000 discrete visitors looked at SarcInfo.com. Not one stopped by to say that their disease has gone away. Each month another 15,000 visitors drop by SarcInfo.com. I am still waiting for the first true case of spontaneous remission to pop up."
http://tinyurl.com/ce2ek

THE OTHER STORY
The NIH distributes power. Many so-called Sarcoidosis centers that receive financial backing from the NIH want to squelch this protocol and have been actively working to discredit Dr. Marshall. The NIH still must take action on hundreds of letters from Sarcoid sufferers who flooded Dr. Zerhouni's email, fax and mail this spring with their testimony of the Marshall Protocol, and their call to accept science over "anecdotal misinformation which has gained credence by repetition."
http://tinyurl.com/bp69b

The NIH, NHLB and major Sarcoid center actions continue to dissuade and confuse well-meaning doctors with baseless criticisms of the Marshall Protocol. All this, while the majority of uniformed patients continue to suffer and die with outmoded but "accepted" treatments.

I encourage you to please look into the facts, look at both sides of the argument and then look at those who have undergone the Marshall Protocol and are living healthy, happy lives after years of suffering. There is a great story and the potential to help speed the progress of truth to those who suffer with Th1 disease.

EXAMINE THE MARSHALL PROTOCOL
I suggest you also look at http://www.marshallprotocol.info to understand the Marshall Protocol. You will find the Marshall Protocol Phase I, links to peer-reviewed medical journal publications by Dr. Marshall, as well as the daily reports of those who are undergoing the Marshall Protocol at this time. You can even contact Dr. Marshall for an interview here: 805-492-3693 or at trevor.m@yarcrip.com.

I highly recommend interviews with Meg Mangin, R.N. a member of the research team, and other medical professionals enjoying health from the Marshall Protocol. Nurses, doctors and others have a higher than expected infection rate with this disease, and some doctors are successfully treating themselves along with their patients with the MP.

EXAMINE THE REST
NIH information sites with a textbook historical content of Sarcoidosis are easily found in a variety of places. Of course, you should ask questions of the administration at the Cleveland Sarcoidosis Clinic, which hosted a recent national conference. The medical professionals sessions at that conference basically communicated to those in attendance that:
-There is no cure
-There is no tool to predict prognosis
-Imaging (X-ray, CT) doesn't correlate with disease activity or severity
-Conventional treatments seem effective at first, but they do not stop the patient's "deterioration" and demise
-The main goal is to keep the patient at status quo for as long as possible with drugs and treatments that are known to do additional harm

Their good news, though, was that the NIH has open avenues to access federal research funds for those who persist along these same lines of thought.

By comparison, Dr. Marshall has a different perspective:
-There is a cure
-There is a method to identify the illness and current severity
-Imaging is optional
-It will stop the patient's "deterioration" and demise
-Drugs and treatments are reasonable with low risk of side effects

The bad news is, to date, Dr. Marshall's submissions to the NIH for funding have been denied and dismissed.

THE PATIENT PERSPECTIVE
You should also know that my experience is not unique. I had to go through a number of doctors before I even was diagnosed with this disease, as it pretends to be something else and may take years to discover using traditional clinical evaluation processes. When finally diagnosed in 1999, the predominant option was Prednisone. I quickly realized Prednisone (corticosteroid) was great for a short term quick fix to allow me to breath and walk, but long term it created more problems and actually did nothing to cure me.

Doctors didn't tell me my disease could be fatal, either, they just gave me two slightly contradictory statements: it probably would go away by itself and I might need to be on prednisone for the rest of my life.

But my disease didn't go away and as Prednisone caused many more problems, I self-weaned after 9 months. I didn't return to a doctor for five years in fear of having to take the drug again and hoped that the disease would go away on its own. The disease did not go away, though, and in February of 2005 when it was progressively getting worse, I took action to do something about it.

Knowing the perils of Prednisone, I searched the Web in hopes of finding new information. From an MSN support chat board, I found http://www.sarcinfo.com (the earliest MP site). There I saw the disease accurately described, and found my symptoms clearly explained in simple, but well-founded truth based on science.

I ordered the 2005 conference CDs and changed lifestyle habits to reduce my D exposure through food and light. That helped me to feel better over the next six months as I negotiated fruitlessly with my doctor (who eventually destroyed my hopes with mis-information from traditional sources, ordered only partial blood work, then told me my blood tests showed I was well). I finally found another MD that would treat me using the Marshall Protocol.

Joined:	Sun Jul 11th, 2004
Location:
Posts:	1178
Status:	Offline

Posted: Sun Dec 3rd, 2006 18:06

Why Does the Body Make Granulomas?
⁽^filelink⁾Dr. Gary Kaiser, microbiology professor at the Community College of Baltimore County, explains how and why the immune system produces granulomas:

"The formation of granuloma in infections such as tuberculosis, leprosy, histoplasmosis, and coccidioidomycosis is a cytokine-mediated cellular response. Because macrophages have difficulty in removing the microbes that cause these infections, there is a continuous secretion of cytokines and chemokines that leads to an accumulation of densely packed macrophages around the microbes. The macrophages release fibrogenic cytokines such as TNF and IL-1 that lead to the formation of granulation tissue and scar tissue. The resulting mass is called a granuloma and is an attempt by the body to "wall-off" or localize the infection."

In tuberculosis, for example, a macrophage can usually engulf the tuberculosis bacterium, but then apparently the bacterium has a means for preventing it own death. If the macrophage is not "activated" by paracrines from a specific immune response, the bacteria may remain alive for long periods within the macrophage. In this circumstance, other macrophages surround and wall off the infected macrophages, forming a type of chronic inflammation called a granuloma.

What Goes Wrong?
Macrophages are a type of white blood cell, assigned the duty of killing bacterial invaders. Macrophages are called phagocytes, or "eating cells." In fact, the word "macrophage" means they are the "big eaters" of the immune system. Take a look at the video clip on this web source by clicking on "time-lapse movie" to see how a white blood cell engulfs an enemy. This is what happens to bacterial invaders.

In sarcoidosis, macrophages are highly activated, but not completely effective, so other macrophages surround and wall off the infected macrophages (the ones with bacteria inside them), joining together their cell material to form multi-nucleated giant cells with little or no dead material (necrosis) because the bacteria are still alive.

Death for the Greater Good
Macrophages have to die to kill the engulfed enemy bacteria and complete the phagocytic process. Otherwise, bacteria may be able to live and even replicate safely inside the macrophage and the human host will still be ill. This can be disastrous, considering that the life span of a macrophage may be months or even years. Even slowly-reproducing bacteria might establish a stronghold by living inside macrophages. Bacteria can continue living and replicating inside macrophages within granulomas.

ABC Australia has a three-part series in their "Great Moments in Science" called "Apoptosis" in this link. It explains the natural process of cell death for the greater good and health of the host.

Other Links and Resources:
CELL WALL DEFICIENT BACTERIA AND THE MARSHALL PROTOCOL
What is the basic definition of Th1 inflammation?
Inside the Cell (a tutorial)
Do people with Th1 inflammatory disease have a genetic defect?
How the Immune System Works
Innate and Acquired Immunity
Immunology Syllabus
Inner Life of the Cell video
How Your Immune System Works

Joined:	Sun Jul 11th, 2004
Location:
Posts:	1178
Status:	Offline

Posted: Tue Feb 5th, 2008 20:57