Sarcoidosis is a rare multi-system, auto immune disease that is known for its long remissions and wide variety of symptoms. Sarcoidosis symptoms vary from person to person – no two are exactly alike. It is a granulomatous disease in which inflammation may occur in lymph nodes, lungs, liver, eyes, skin, joints, kidneys, liver and spleen, and other tissues.
Some patients (60%) have Sarcoid for a period of 2-3 years and never have it again, but others have it chronically, some with periods of remission.
CAUSES, INCIDENCE AND RISK FACTORS
The cause of Sarcoidosis is considered unknown, but some areas of exploration on its etiology are:
1) A viral or bacterial infection (Sarcoidosis is not contagious, but resembles tuberculosis)
2) A defect in the body’s immune system
3) An unidentified toxic substance
4) An unknown environmental cause
5) An inherited or genetic cause.
Over 90% of cases involve the lungs and may also involve any other area of the body. Some cases will involve some portion of the nervous system. The disorder involves an abnormal immune system response resulting in deposits of white blood cells and abnormal tissue cells in the affected organs. Sarcoidosis occurs in highly variable groups. The disorder is slightly more common in people 25 to 50 years old, particularly women, but can occur at any age and to either sex.
In early 2002, a group of Swedish scientists published pictures of bacteria from a tick-borne disease that were living and replicating in the granuloma of 30 Sarcoidosis patients. The organisms were from the genus “Rickettsia”. In the USA, these organisms give rise to “Rocky Mountains spotted fever,” while in Asia they cause “scrub typhus”. Other scientists have since found other types of bacteria, which also seem to be involved in sarcoid inflammation.
But granulomatous inflammation does not form in everybody. It seems as though there is a genetic pre-disposition, a tendency running within families that causes this special reaction to the bacteria by forming granuloma. Some scientists recently summarized sarcoidosis in the following sentence: “One or more microbes behaving in a non-infectious fashion in a genetically predisposed individual, trigger the sarcoidosis granulomatous response”.
If somebody is attacked by ‘microbes’ they typically suffer from fever and intense pain, usually for several weeks. The actual sarcoid inflammation is usually not discovered until years afterwards. During the initial attack, the fever is treated with antibiotics. When the fever subsides it is then assumed that the body’s immune system has rejected the microbe, and the patient has been ‘cured’. Unfortunately, in that fraction of the population with the genetic pre-disposition to form sarcoid granuloma, the bacteria continue to live in the granuloma, and the body’s immune system continues to try and reject them. Sometimes the immune system is successful, and the patient goes into “remission”. But sometimes the inflammation continues for the remainder of the patient’s lifetime.
The symptoms of sarcoidosis are highly variable. Any part of the nervous system may become involved. Involvement may be a single nerve, multiple nerves, or generalized. It is often difficult to diagnose Sarcoidosis as signs may mimic diabetes, hypopituitarism, optic neuritis, meningitis, tumors, or other neurologic disorders.
In most cases of sarcoidosis that have no symptoms, the disease “burns itself out,” disappearing with little or no notice to the patient or physician.
TREATMENT
In a majority of patients, the disease spontaneously disappears, and no treatment is necessary. When therapy is recommended, the main goal is to keep the lungs and other affected body organs working, and to relieve symptoms. Drugs called corticosteroids are the most common treatment used in fighting sarcoidosis. Some physicians prescribe steroids when there are no symptoms but just abnormalities seen on the chest x-ray and in lung function measurements.
Treatment has consisted of reducing and relieving symptoms, some cases resolve themselves in time and never experience further symptoms. Corticosteroids such as Prednisone and/or other anti inflammation medications can be prescribed to reduce inflammation. Other medications, particularly those that suppress the immune system, are recommended. Patients with lung involvement may benefit from inhalers, and each symptom can usually be relieved by treating with appropriate medications. Weak areas due to arthritis may require physical therapy and/or appliances to aid mobility and ability to function.
Your doctor may suggest that you take an angiotensin receptor blocker. It turns out that Angiotensin II is not only important to cardiac health and blood pressure, but it’s also an important part of the inflammatory cycle in the granuloma. ARBs are a relatively safe family of drugs that can dramatically ease any discomfort that remains once a sarcoid patient has gotten their Vitamin D under control.
Signs, symptoms & indicators of Sarcoidosis
(Possibly) enlarged spleen
Constant thirst
Constant fatigue
Recent swollen/painful lymph nodes
Vision disturbances
(Very) dry mouth
Enlarged liver
Having a moderate/having a high/having a slight fever
Occasional/frequent unexplained fevers
Air hunger or sudden shortness of breath
Chronic/recent productive cough
Chronic/recent nonproductive cough
Joint pain/swelling/stiffness
Rashes
Conditions that suggest Sarcoidosis
Counter Indicators
Hyperparathyroidism
When hyperparathyroidism is present, the likelihood of elevated serum calcium being caused by other conditions is obviously reduced.
Neuritis/Neuropathy
A “pins and needles” sensation or numbness has been caused by sarcoidosis.
Sarcoidosis
Counter Indicators
Absence of sarcoidosis
Risk factors for Sarcoidosis
Mycoplasma Infection
From time to time there have been reports of autoimmune disease succumbing to tetracycline antibiotics, but many have assumed this was due to coincidence, or to some ill-defined ‘anti-inflammatory property’ of the tetracyclines. But now the inflammation of Sarcoidosis has succumbed to antibiotics in two independent studies. This review examines the Cell Wall Deficient (antibiotic resistant) bacteria which have been found in tissue from patients with Sarcoidosis. It examines how such bacteria can infect the phagocytes of the immune system, and how they may therefore be responsible for not only sarcoid inflammation, but also for other autoimmune disease.
Proof positive of a bacterial pathogenesis for Sarcoidosis includes not only the demonstrated ability of these studies to put the disease into remission, but also the severity of Jarisch-Herxheimer Shock resulting from endotoxin release as the microbes are killed. Studies delineating the hormone responsible for phagocyte differentiation in the Th1 immune response, 1,25-dihydroxyvitamin D, are discussed, and its utility as a marker of Th1 immune inflammation is reviewed. Finally, data showing that the behavior of this hormone is also aberrant in Rheumatoid Arthritis, Systemic Lupus Erythematosus, and Parkinson’s, raise the possibility that these diseases may also have a CWD bacterial pathogenesis. [Autoimmunity Reviews, Vol 3, No 4, pp 295-300]
Hypercalcemia
Sarcoidosis, or “sarcoid” for short, is a disease where the body’s immune system is over activated for unclear reasons. Sarcoid can often go many years before being detected, and is often found by accident when a chest x-ray is obtained for some other reason. Other patients can have symptoms such as cough or shortness of breath. Sarcoid often resolves spontaneously and therefore treatment is not always necessary. If a patient has symptoms the disease is usually treated with steroids. The cause of sarcoid is unknown. How sarcoid causes high calcium is not known, but is probably due to the same two ways that cancer causes increased calcium. This disease is very rare. [www.parathyroid.com]
Japanese descent
Sarcoidosis of heart muscle (myocardium) is much more common in the Japanese than in other races and is the leading cause of death from sarcoidosis in Japan.
Some/possible clubbing of digits or clubbing of toes and fingers
Counter Indicators
Absence of clubbing
Sarcoidosis suggests the following may be present
Mycoplasma Infection
From time to time there have been reports of autoimmune disease succumbing to tetracycline antibiotics, but many have assumed this was due to coincidence, or to some ill-defined ‘anti-inflammatory property’ of the tetracyclines. But now the inflammation of Sarcoidosis has succumbed to antibiotics in two independent studies. This review examines the Cell Wall Deficient (antibiotic resistant) bacteria which have been found in tissue from patients with Sarcoidosis. It examines how such bacteria can infect the phagocytes of the immune system, and how they may therefore be responsible for not only sarcoid inflammation, but also for other autoimmune disease.
Proof positive of a bacterial pathogenesis for Sarcoidosis includes not only the demonstrated ability of these studies to put the disease into remission, but also the severity of Jarisch-Herxheimer Shock resulting from endotoxin release as the microbes are killed. Studies delineating the hormone responsible for phagocyte differentiation in the Th1 immune response, 1,25-dihydroxyvitamin D, are discussed, and its utility as a marker of Th1 immune inflammation is reviewed. Finally, data showing that the behavior of this hormone is also aberrant in Rheumatoid Arthritis, Systemic Lupus Erythematosus, and Parkinson’s, raise the possibility that these diseases may also have a CWD bacterial pathogenesis. [Autoimmunity Reviews, Vol 3, No 4, pp 295-300]
Sarcoidosis can lead to
Neuritis/Neuropathy
A “pins and needles” sensation or numbness has been caused by sarcoidosis.
Sarcoidosis could instead be
Recommendations for Sarcoidosis
Cetyl-myristoleate
No scientific clinical studies have ever been done on the effects of CMO when taken by sarcoidosis patients, but a few patients have felt that it was helpful. If there are arthritic symptoms present also it could be worth a try.
Therapeutic Fasting
A small study carried out in the Balkans suggested some therapeutic benefit could be attained for patients with sarcoidosis by therapeutic fasting for those with the early stage of the disease (duration less than one year). [Ter. Arkh. 1996; 68(3): pp.83-87]
Address to the Republican Scientific and Practical Conference, Saint-Petersburg, Russia (Year unknown). [Abstract of a paper entitled Efficiency of Fasting Therapy in Patients with Sarcoidosis of the Lungs by Baranova, O P; Ilkivich, M M; Novikova, L N; Sess, T P; Nikikonov, L N.]
The authors applied fasting therapy following the method developed by the Research Institute of Pulmonology to treat 52 patients with sarcoidosis of the lungs (below as the SL). The duration of the fasting period was 14 days in average. By the end of the fasting improved general state was reported for 75% of patients, they ceased to complain about weakness, coughing, short breath, and arthralgia. In the one third of the SL-1 patients without prescription of corticosteroids, the sizes of the lymph nodes of the mediastinum were visible as reduced at the roentgenograms.
For the half of the SL-2 patients, the lungs outline on the roentgenograms became more distinct, the dissemination of the seats and sizes of lymph nodes in the mediastinum decreased. The comprehensive roentgeno-functional and radio-nuclide investigation testified to the positive dynamics of the indices of the regional ventilation and pulmonary perfsion in 61% of SL-2 patients and 19% of SL-3 patients after the fasting.
After the treatment was over, in 6 and 12 months this above positive dynamics was retained. The majority of the patients (68%) displayed a marked tendency towards the normalisation of the indices of the immune homeostasis. The remote results of the fasting were traced in 17 (from 52) patients: in a year positive dynamics was marked in 14 (from 17) (82%); the stabilisation of the pathology took place in 2 more patients, and in one patient only the SL recurrence was noted.
The authors think that fasting is recommendable in the SL-1 as a monotherapy, in the SL-2 as a monotherapy or combined with further usage of corticosteroids, in the SL-3 it can be used to diminish side effects due to corticosteroids and to stimulate their endogenic synthesis. The attendant pathologies, like obesity, peptic ulcer and hypertension, serve as additional indications for fasting therapy.
Antibiotics
Benefit may be obtained by using an antibiotic that is capable of attacking the bacteria which are living in the soft tissue and granuloma. The antibiotics that have been most successful against this type of bacteria are the tetracyclines. Minocycline has been proven effective in sarcoidosis. A dual regimen of low-dose Azithromycin plus Minocycline is especially effective.
The Autoimmunity Research Foundation announced at the beginning of October 2005 that its Phase 2 clinical trials had confirmed antibiotic-resistant bacteria as the cause of sarcoidosis, the deadly disease that took Reggie White’s life, and that applications for designation of three antibacterials as “Orphan Products” have been filed with the Food and Drug Administration.
The foundation has been conducting Phase 2 trials for the past three years, working with dozens of individual physicians and specialists to establish both an understanding of the pathogenesis, and of effective anti-bacterial dosing regimes. More than 200 of its patients have subsequently recovered, or are currently recovering, from this debilitating disease.
The applications to the FDA will facilitate Phase 3 trials leading to final FDA designation of these drugs for sarcoidosis.
Sun Exposure Reduction / Sunscreen
One way to stop the high levels of 1,25 D hormone from forming is to reduce the amount of Vitamin D that our bodies are taking in. This has to be done carefully, as our bodies need some Vitamin D to function properly. Nevertheless, the granuloma of sarcoidosis manufacture this hormone very vigorously, and so sarcoid patients are especially sensitive to sunlight and dietary Vitamin D.
The symptoms of fatigue, numbness, pain and cramping all go away after the level of the 1,25 D hormone has been brought back down to normal levels. Your doctor needs to measure the level of the 1,25 D hormone and make sure it doesn’t fall too low.
“Especially sensitive to sunlight” means stay indoors. Even a little bit of sunlight will feed the inflammation and make the fatigue worse. Sunshades may even have to be worn in brightly lit indoor environments, and very, very, dark sunshades are needed if you have to venture outside during the daylight hours. You should also cover all exposed skin with thick clothing, and wear leather gloves while driving.
The effects of an exposure to the sun are not immediate, indeed, pleasure is the first response, and discomfort takes 4 to 8 hours to develop. During the following 2-4 days, however, is when the symptoms are at their worst. Since most people tend to live on a daily cycle, they are rarely out of the sun for 2-4 days at a time.
Tobacco Avoidance
It is particularly important that sarcoidosis patients do not smoke, and avoid exposure to dust and chemicals that can harm the lungs.
Melatonin
At least two cases of sarcoidosis have been successfully treated with 20mg of melatonin per day.These were chronic sarcoidosis cases unresponsive to long-term steroidal therapy.[The Lancet November 4, Vol 346, pp.1229-1230, 1995]
Test / Monitor Hormone levels
Your doctor can measure the levels of the 1,25 D hormone and also of 25-hydroxyvitamin D, its precursor. When the D-Ratio is calculated from this blood work, it gives a measure of the amount of granulomatous inflammation which is present in a sarcoid patient’s body. This D-Ratio can be tracked to ascertain the effectiveness of the antibiotic therapy.
Vitamin D is stored in the body’s fat. Sometimes it may take several months until the blood work shows that the 25 D level has fallen, and the reserves in body fat have been used up. Although the fatigue usually eases fairly quickly, numbness and muscle pain only ease after the fat stores have been significantly depleted.
Vitamin D
There is a hormone which allows the sarcoid granuloma to flourish. It is called 1,25-dihydroxyvitamin D. It is formed in the kidneys from 25-hydroxyvitamin D, the metabolite formed when our bodies take in Vitamin D from sunlight or from food. Although the 1,25 D hormone is normally manufactured in the kidneys, it is also manufactured in the granulomatous inflammation of sarcoidosis.
Raised serum calcium levels occur in 2-63% of sarcoidosis patients due to overproduction of vitamin D by sarcoid granulomas. The concentration of this hormone in the blood of sarcoid patients can rise to quite high levels, and cause them to suffer from the symptoms of “Hypervitaminosis D”. These include fatigue, pins and needles, numbness, muscle pain, muscle cramps, dizzyness, loss of balance and even facial palsy.
Key
| Weak or unproven link |
| Strong or generally accepted link |
| Proven definite or direct link |
| Weakly counter-indicative |
| Strongly counter-indicative |
| Very strongly or absolutely counter-indicative |
| May do some good |
| Likely to help |
| Highly recommended |
| Avoid absolutely |
Glossary
Lymph Nodes
Small, bean-shaped nodes at various points throughout the body that function to filter the lymph fluid and attempt to destroy the microorganisms and abnormal cells which collect there. The most common locations are the neck (both sides and front), armpit and groin, but also under the jaw and behind the ears. Swollen or painful lymph nodes generally result from localized or systemic infection, abscess formation, or malignancy. Other causes of enlarged lymph nodes are extremely rare. Physical examination for lymph nodes includes pressing on them to check for size, texture, warmth, tenderness and mobility. Most lymph nodes can not be felt until they become swollen, and then will only be tender when pressed or massaged. A lymph node that is painful even without touching indicates greater swelling. Lymph nodes can usually be distinguished from other growths because they generally feel small, smooth, round or oval-shaped and somewhat mobile when attempts are made to push them sideways. Because less fat covers the lymph nodes in children, they are easier to feel, even when they are not busy filtering germs or making antibodies. Children’s nodes enlarge faster, get bigger in response to an infection and stay swollen longer than an adult's.
Tuberculosis
Also known as TB, Consumption or "The White Plague", tuberculosis is an infectious disease caused by a bacterium called Mycobacterium tuberculosis, usually affecting the lungs but possibly also the brain, kidneys and bones. Patients may at first be symptom-free or experience a flu-like illness. In the secondary stage, there might be a slight fever, night sweats, weight loss, fatigue and various other symptoms, depending on the part of the body affected. Tuberculosis of the lung is usually associated with a dry cough that eventually leads to a productive cough with blood-stained sputum. There might also be chest pain and shortness of breath.
Immune System
A complex that protects the body from disease organisms and other foreign bodies. The system includes the humoral immune response and the cell-mediated response. The immune system also protects the body from invasion by making local barriers and inflammation.
Nervous System
A system in the body that is comprised of the brain, spinal cord, nerves, ganglia and parts of the receptor organs that receive and interpret stimuli and transmit impulses to effector organs.
White Blood Cell
(WBC): A blood cell that does not contain hemoglobin: a blood corpuscle responsible for maintaining the body's immune surveillance system against invasion by foreign substances such as viruses or bacteria. White cells become specifically programmed against foreign invaders and work to inactivate and rid the body of a foreign substance. Also known as a leukocyte.
Bacteria
Microscopic germs. Some bacteria are "harmful" and can cause disease, while other "friendly" bacteria protect the body from harmful invading organisms.
Diabetes Mellitus
A disease with increased blood glucose levels due to lack or ineffectiveness of insulin. Diabetes is found in two forms; insulin-dependent diabetes (juvenile-onset) and non-insulin-dependent (adult-onset). Symptoms include increased thirst; increased urination; weight loss in spite of increased appetite; fatigue; nausea; vomiting; frequent infections including bladder, vaginal, and skin; blurred vision; impotence in men; bad breath; cessation of menses; diminished skin fullness. Other symptoms include bleeding gums; ear noise/buzzing; diarrhea; depression; confusion.
Neuritis
Nerve inflammation, commonly accompanying other conditions such as tendonitis, bursitis or arthritis. Neuritis is usually accompanied by neuralgia (nerve pain).
Steroid
Any of a large number of hormonal substances with a similar basic chemical structure containing a 17-carbon 14-ring system and including the sterols and various hormones and glycosides.
Arthritis
Inflammation of a joint, usually accompanied by pain, swelling, and stiffness, and resulting from infection, trauma, degenerative changes, metabolic disturbances, or other causes. It occurs in various forms, such as bacterial arthritis, osteoarthritis, or rheumatoid arthritis. Osteoarthritis, the most common form, is characterized by a gradual loss of cartilage and often an overgrowth of bone at the joints.
Cardiac
Pertaining to the heart, also, pertaining to the stomach area adjacent to the esophagus.
Vitamin D
A fat-soluble vitamin essential to one's health. Regulates the amount of calcium and phosphorus in the blood by improving their absorption and utilization. Necessary for normal growth and formation of bones and teeth. For Vitamin D only, 1mcg translates to 40 IU.
Serum
The cell-free fluid of the bloodstream. It appears in a test tube after the blood clots and is often used in expressions relating to the levels of certain compounds in the blood stream.
Calcium
The body's most abundant mineral. Its primary function is to help build and maintain bones and teeth. Calcium is also important to heart health, nerves, muscles and skin. Calcium helps control blood acid-alkaline balance, plays a role in cell division, muscle growth and iron utilization, activates certain enzymes, and helps transport nutrients through cell membranes. Calcium also forms a cellular cement called ground substance that helps hold cells and tissues together.
Autoimmune Disease
One of a large group of diseases in which the immune system turns against the body's own cells, tissues and organs, leading to chronic and often deadly conditions. Examples include multiple sclerosis, rheumatoid arthritis, systemic lupus, Bright's disease and diabetes.
Anti-inflammatory
Reducing inflammation by acting on body mechanisms, without directly acting on the cause of inflammation, e.g., glucocorticoids, aspirin.
Hormones
Chemical substances secreted by a variety of body organs that are carried by the bloodstream and usually influence cells some distance from the source of production. Hormones signal certain enzymes to perform their functions and, in this way, regulate such body functions as blood sugar levels, insulin levels, the menstrual cycle, and growth. These can be prescription, over-the-counter, synthetic or natural agents. Examples include adrenal hormones such as corticosteroids and aldosterone; glucagon, growth hormone, insulin, testosterone, estrogens, progestins, progesterone, DHEA, melatonin, and thyroid hormones such as thyroxine and calcitonin.
Cytokines
Cytokines are chemical messengers that control immune responses. They are secreted by white blood cells, T cells, epithelial cells and some other body cells. There are at least 17 different kinds of interleuken and 3 classes of interferon called alpha, beta and gamma and various subsets. Interleukens and interferons are called “cytokines” and there are two general groupings, Th1 and Th2. Th1 (T-cell Helper type 1) promote cell-mediated immunity (CMI) while Th2 (T-cell Helper type 2) induce humoral immunity (antibodies).
Rheumatoid Arthritis
A long-term, destructive connective tissue disease that results from the body rejecting its own tissue cells (autoimmune reaction).
Cancer
Refers to the various types of malignant neoplasms that contain cells growing out of control and invading adjacent tissues, which may metastasize to distant tissues.
Myocardium
Heart muscle.