Whether to be compliant or to be healthy seems like an easy question to answer

*I made a significant correction to this post today, so I'm moving it to the front page today.

-- but it may not be that easy of a question for a patient of the current medical industry. Personally, I do like to be compliant and agreeable with other people but I also prefer to be healthy and agreeable rather than sick and agreeable. The terms compliant and non-compliant are used in the medical field when documenting how thoroughly a patient is following the recommendations of the medical team. However if the medical team's recommendations are based on limited knowledge or incorrect information, then complying with the recommendations might not seem like a good idea to a patient. If an industry claims to not know what causes a disease or how to cure it then why should a patient be expected to believe that the same industry knows if a treatment will actually be adding to making the patient worse instead of helping them get better as is hoped? Some of their recommendations might be making the underlying, not well-understood, problem much worse.

The terms compliant and non-compliant may also be used in legal cases when there is conflict between a medical team's recommendations and the parent's decisions regarding the care of a child. Painful and possibly ineffective chemotherapy or other cancer treatments might be recommended to try to save a child's life but if those treatments are just making the last few months, days, or years of the child's life more miserable then who is being helped? The child and family are missing out on the quality of life during their last days together and frequently with a significant financial cost. Paying for hope of a last chance cure at the cost of daily enjoyment seems like pretty expensive hope. The pharmaceutical industry's profit margin may be helped but the child's last days might be spent in more pain and nausea with less time to spend enjoying the company of their family.

Intravenous vitamin C has been used effectively against a variety of types of cancer at the Linus Pauling Institute for decades but vitamin C isn't profitable because it can't be patent protected. -- A review article suggests there is some anti-tumor effects from the high dose intravenous vitamin C treatment but that it is not a miracle cure and is providing such a high dose, approximately 200 oranges worth twice a week, that it could be dangerous to a patient who had kidney problems. [8]

Patents allow companies to charge higher prices for products because they are the only supplier. Generic products and natural products have market competition to help keep the price down for consumers.

A for-profit prison industry requires prisoners and tax-payer funding to finance their care and provide the profit, and a for-profit medical industry needs people to take medicine, whether they are sick or whether they are trying to prevent sickness. Requiring people to take maintenance medicine for chronic symptom control for years or for the rest of their life will add up to more profit for the medical industry over time compared to providing patients with effective preventive guidance or with a treatment that actually cures their underlying condition.

While I am fortunate not to have cancer I have been struggling with autoimmune and allergy symptoms for as long as I can remember and in my experience as a patient if currently available lab tests don't reveal any diagnoses that are currently accepted within mainstream medical standards then your symptoms might be labeled psychosomatic - all-in-your-head physical symptoms that may be caused by mental stress or other emotional problems. That might be helpful for a patient who actually has psychosomatic problems but it isn't very helpful for the long term treatment of a patient with an autoimmune disease.

Unfortunately though, in the current medical industry even if you receive an autoimmune diagnosis the cause is still considered unknown and immune suppressing chemotherapy drugs are frequently the only treatment available. However the good news is that the cause of some types of autoimmune disease has actually been discovered, but the news hasn't made it into mainstream media or medical practice yet; and more good news, an effective therapy protocol has also been developed and life threatening chemotherapy drugs are not part of the medication protocol.

Severe migraine headaches every week were my worst health symptom, but I also had chronic fatigue and multiple muscle cramps similar to those described by patients with fibromyalgia, and I was sensitive to a variety of food and environmental allergens. I've only had a couple migraines since I tried the newly developed medication protocol. I spent a year and a half taking antibiotics every other day, and an angiotensin receptor blocker (olmesartan/Benicar) everyday, and avoiding vitamin D foods, supplements and sunlight everyday. This was not easy or comfortable, the antibiotics cause allergy like symptoms from the increased load of toxins that results from the remains of infected cells that healthy white blood cells were able to kill while on the combination of antibiotics and olmesartan, but the allergic symptoms were not as bad as having migraines that feel like a railroad spike pounding into your skull over and over for three days every week, never mind the muscle cramps, fatigue and other symptoms that I'd had off most of my life.

Not having weekly migraines and other daily symptoms was so wonderful that I wanted to share the good news but I found that it is difficult to get people to see past the mental block of "we don't know what causes autoimmune disease or how to cure it." -- And we will never know what causes it or how to cure it if we keep ignoring the people who are making advances in figuring out what causes it and how to cure it.

Lida Mattman is a research scientist who conclusively showed that Rheumatoid arthritis is caused by a bacteria but that breakthrough hasn't reached the patient yet. Some types of bacteria can survive in a modified form within the interior of some types of human cells. The form is hard to grow in normal agar gel cultures but Lida Mattman developed techniques that are able to culture the cell wall deficient microbes. She discusses the pathogens that cause Lyme's Disease and Lou Gehrig's Disease and other stealth pathogens at the Autoimmunity Research Foundation's Chicago Conference, March 12, 2005, in this video link: (video, at ~19:30 she recommends not visiting people who had just suffered a coronary/heart attack in person at the hospital, just send a card, as evidence has shown that a infectious but unidentified pathogen is involved in some coronaries and therefore probably also in cerebral strokes which occur in the same way - but she probably doesn't really mean not to visit your loved ones. She gets a laugh from the crowd as she shared a story about getting a sample to test after her husband had a coronary - so she probably did visit him but the point may also be that we don't know what we don't know and it might be dangerous, at least to the immune compromised).

Some types of pathogens, including the virus that causes HIV/AIDS, have forms that can actually enter human cells and survive and grow within the cell. This sets up an inflammatory condition with overactive white blood cells that may be looking for the infection but instead attack other healthy tissue - 'auto-immune' - attacking self. Lida Mattman found cell wall deficient bacteria involved in Rheumatoid Arthritis and Lyme's Disease and other diseases. The bacteria that causes tuberculosis also has a form that can live within cells. The textbookofbacteriology.net site uses the term faculative intracellular parasite in their description of the pathogen that causes tuberculosis. [7]

The specialized pathogens developed ways to disguise the infected cells from healthy immune cells. The angiotensin receptor blocker medication olmesartan is normally given once a day for high blood pressure but for the auotimmune treatment protocol it is given three to four times per day every six to eight hours in order to keep the levels steady all day and night because the infected cells hide by developing angiotensin receptors - blocking the receptors takes away the disguise. I think - this is my rough understanding of how the medication helps in the protocol developed by Trevor Marshall, a biomedical engineer. Blocking the angiotensin receptor disguise somehow allows the healthy immune cells to identify and kill the infected cells instead of continuing to ineffectively attack other healthy tissue (such as finger joints in Rheumatoid arthritis or lung tissue in sarcoidosis).

Correction, (9/16/2015): The part about the angiotensin receptor blocker medication was wrong. The medication olmesartan (Benicar) is not only acting as a angiotensin receptor blocker (which can help reduce the production of inflammatory cytokines which cause pain and fatigue and can help prevent fibrotic tissue from forming). It also acts as an agonist, an activator, of the vitamin D receptors (VDRs). By activating the VDRs the medication is allowing the healthy immune cells to do their normal functions. The pathogens had developed a variety of ways to block the vitamin D receptors in order to 'hide' by disabling the immune cell's normal immune functions that are controlled by the active VDR. It transcribes over 1000 genes that are involved not only in calcium balance but also in cancer metastasis and many other functions. MPKB: Science behind olmesartan (Benicar).

Prof. Marshall is not a medical doctor but he is a biomedical researcher who did not choose to be compliant when he was diagnosed with sarcoidosis and was told that he probably only had a year and a half left to live - over a decade ago. Instead he developed his specialized medical protocol and then sought and received orphan drug approval by the U.S. FDA so that olmesartan/Benicar can be prescribed for use with the antibiotic Marshall Protocol in addition to it being able to be prescribed for its normal use for treating high blood pressure. Using the blood pressure medication three to four times per day may increase the risk of feeling light headed when standing up quickly but taking it 3-4 times per day doesn't cause the blood pressure to drop 3-4 times lower than normal. (I did have to catch my balance occasionally and fainted once or twice while taking olmesartan three times per day for a year and a half. Fainting is weird but fifteen years of migraines is worse.)

A three day migraine or chronic arthritic degeneration seems worse to me than feeling light headed when standing up quickly - and the medication protocol isn't needed for the rest of life as many medications are prescribed for patients with chronic illnesses. While the protocol reduces symptoms after a year or two on the medications, an autoimmune patient might need to follow Trevor Marshall's protocol for a year or two more than once over their lifetime because autoimmune diseases tend to flair up and go in remission with the patient's overall level of health or stress or environmental toxin load - there really is a lot we don't know about autoimmune disease. Having good and bad times, remissions and relapses, may be common in autoimmune disease because just a few remaining infected cells may linger over the years and then multiply again during a stressful or otherwise unhealthy time of life.

Tuberculosis is a disease that has been shown to be caused by a type of bacteria able to live within human cells and the infection can be spread through air-borne respiratory droplets when actively sick patients cough or sneeze. The disease can remain dormant for years in healthy people and the sickness can be spread by people who never got sick themselves and therefore don't realize that they are carriers. A continuing education session for health professionals recommends using Universal Precautions, in order to protect staff and to help prevent spread of infection between patients, health professionals are recommended to wear adequate masks and gloves and treat all patients as if they were potentially contagious because anyone might be a carrier of a dormant infection. The course, Infection Control and Prevention, Module 5, Element II: Mechanism of Transmission available at atrainceu.com [atrainceu.com] has more information about Universal Precautions.

"Every year, more than 9 million people worldwide develop TB and nearly 2 million people die from the disease. Tuberculosis is a bacterial infection caused by Mycobacterium tuberculosis and is spread in airborne droplets when people with the disease cough or sneeze. Most people with healthy immune systems infected with M. tuberculosis never become ill. However, the bacteria remain dormant within the body and can cause tuberculosis years later if host immunity declines." - atrainceu.com, Infection Control and Prevention, Module 5, Element II: Mechanism of Transmission [atrainceu.com]

Tuberculosis, I learned recently, is also a type of infection that interferes with normal vitamin/hormone D metabolic pathways. The vitamin D receptor (VDR) plays a role in the ability of white blood cells to kill infected cells and cancerous cells. Some pathogens have developed ways to suppress the Vitamin D Receptor's activity so white blood cells aren't able to effectively resist the infection process. Other pathogens that have been shown to reduce the activity of the Vitamin D Receptor, in addition to the pathogen that causes Tuberculosis, include the mold Aspergillus, the viruses that cause Epstein-Barr chronic fatigue syndrome and HIV/AIDS, and the autoimmune diseases sarcoidosis, Crohn's Disease, and Rheumatoid Arthritis. Elevated levels of 1, 25(OH)2D are seen with the bacterial infections: "Elevated 1,25(OH)2D appears to be evidence of a disabled immune system’s attempt to activate the VDR to combat infection." [page 19, 1]

The Infection Control and Prevention course provides more information about Aspergillus. It is a fairly common mold that generally only becomes a problem for immuno-compromised individuals, [atrainceu.com], but interestingly those at increased risk also include people who have advanced cases of HIV/AIDS and those who have been on long term corticosteroid therapy (which acts similarly to having elevated levels of 1, 25(OH)2D, which is the active hormone form of vitamin D, and is actually not a vitamin. It is a seco-steroid based on a molecule of cholesterol). [2]

It seems to me that people with advanced cases of HIV/AIDs, whether they also have opportunistic aspergillosis or not, might like to know that taking olmesartan/Benicar daily and avoiding vitamin D foods, supplements and sunlight [1] might help their healthy white blood cells to be able to work more effectively again or might at least not add any negative symptoms that can occur when there is elevated levels of hormone D. The elevated hormone level itself is a health risk itself because it is telling the bones to release their stored calcium which can lead to osteoporosis of bones and calcification of soft tissue. The article [1] doesn't suggest that AIDS patients might be helped by Benicar because it is a review of research that has already occured article - research has shown that Benicar is helpful for autoimmune diseases like sarcoidosis but more research is needed to find out how the HIV and Epstein-Barr viruses and aspergillus mold suppress the Vitamin D Receptor and how to stop the down-regulation.

Our medical industry uses donated blood and organs that are screened for many diseases but they can't screen for diseases that don't officially have a known infectious agent. Dormant tuberculosis can cause carriers to become sick years after they were exposed and in all those years as a carrier the person might also have been a regular blood donor. Sarcoidosis patients who are in remission are allowed to donate blood and plasma yet there have been organ transplant patients who got sarcoidosis only after receiving the organ transplant. If the organ donor wasn't known to have active sarcoidosis then the medical industry may not realize that the person might be a carrier of infected cells that could cause symptoms in a more immuno-compromised person. All organ transplant patients are purposely given immune suppressing medications in order to prevent the body's own immune defenses from attacking the transplanted organ.

The longer autoimmune disease is treated as something without a known cause the longer we may be spreading it through contaminated blood and organ donations. The longer autoimmune disease is treated as something without a known cure the longer patients have to suffer reduced quality of life and shortened lifespans.

• Tuberculosis: annually worldwide, 9 million infected and 2 million deaths, [atrainceu.com]

• Epstein-Barr virus (EBV): According to the Centers for Disease Control about 90% of adults have antibodies against EBV, suggesting a current infection or history of exposure. The disease can be spread before a person has active symptoms and the virus can remain in a latent/inactive phase for years and can become active again at any time. [cdc.gov]

• HIV/AIDS virus: According to the Centers for Disease Control there are about 50,000 people in the U.S. infected with HIV/AIDS each year and there are about 1.2 million people currently in the U.S. with an HIV/AIDS infection. About 12.8% of them may not be aware of their disease status. [cdc.gov]

• Aspergillosis: According to the Centers for Disease Control the exact prevalence of opportunistic aspergillosis is unknown because it is not required to be reported in the U.S. however it is a common type of fungal infection found in organ transplant patients with a cumulative incidence of 19% over twelve months during a 2001-2006 study. It may also be a problem for up to 15% of patients with cystic fibrosis and 2.5% of patients with asthma, which represents 4.8 million people worldwide, 400,000 of whom might have a more severe form of aspergillosis. There are 1.2 million people estimated to have aspergillosis as a complication of their tuberculosis disease and there may be 70,000 people who have aspergillosis as a complication of their sarcoidosis disease. [cdc.gov]

• Sarcoidosis: According to a study of U.S. Navy personnel, "Sarcoidosis Among U.S. Navy Enlisted Men, 1965-1993," the rate of disease incidence dropped over the time period but was significantly more of a risk for enlisted men who were assigned to aircraft carriers. The study was made at the request of a veteran who wondered if his case of sarcoidosis might have been due to an environmental contaminant. "Although 70% of case-patients and 66% of controls had ever served on ships, 26% of case-patients and 17% of controls had ever served specifically on aircraft carriers." (case-patients, n=1121) [3] *Living within the confined quarters of a ship or aircraft carrier may have affected risk of sarcoidosis infections if the disease can remain dormant similarly to tuberculosis. Exposure to the blood or body fluids of a seemingly healthy person might be able to be a source of latent infection for an immuno-compromised individual if the disease is carried within infected white blood cells.

• Crohn's Disease: I haven't found statistics regarding the prevalence of this type of inflammatory bowel disease but the Mayo Clinic site at least mentions that an infectious agent might be involved: [4] Unfortunately they also recommend vitamin D and calcium supplements to help counteract the risk of osteoporosis if steroid therapy is used. [5] This would be bad if the patient actually has elevated levels of hormone D (1, 25(OH)2D) because levels above 42 pg/ml are a signal for calcium to leave the bones which ultimately increases the risk of osteoporosis and calcification of soft tissue. "In fact, there is ample evidence that elevated 1,25(OH)2D leads to bone loss. Brot et al. [53] found that elevated levels of 1,25(OH)2D were strongly associated with decreased bone mineral density and content, and increased bone turnover. When levels are above 42 pg/ml 1,25(OH)2D stimulates bone osteoclasts. This leads to osteoporosis, dental fractures and calcium deposition into the soft tissues [54]. Vanderschueren et al. [55] found that a combination of high 1,25(OH)2D and low 25(OH)D is associated with the poorest bone health." [1] Adequate magnesium is very important when elevated calcium levels are a problem because it helps the kidneys to excrete excess calcium.

• Rheumatoid Arthritis: Infection is also mentioned as a possible cause of Rheumatoid Arthritis on the Mayo Clinic site. [6]

That is an incomplete list of statistics but the point was that many people may be affected by pathogens that have developed ways to manipulate our immune system's normal Vitamin D Receptor metabolism.

Trevor Marshall doesn't recommend that people who are using his protocol with the help of their physician worry too much about what specific pathogens might be the cause of their own abnormal vitamin D/hormone D levels. Comparing the level of the inactive vitamin D, 25 (OH) D, with the level of the active hormone D, 1, 25 (OH)2D, can suggest infection when the inactive form is low but the active form is normal or elevated. Healthy individuals can remain at 30 pg/ml of the hormone while they are getting plenty of sun exposure and dietary supplies of the vitamin form. Elevated levels are not normal. Elevated levels during active autoimmune disease can be in the 100s while the vitamin level remains low and tends to remain low even when large dose supplements are taken regularly.

The problem is that the infection process has inhibited breakdown of the active hormone and/or causes over production of the enzyme that converts the vitamin into the hormone form so all the large dose vitamin is being converted into the active hormone form which wouldn't be noticed if only the vitamin level was being measured by the lab - as is the routine currently. The hormone level is a more unstable form that is more expensive to process. The mainstream medical recommendation is based on the theory that the enzyme that can convert the vitamin into the hormone is under careful control by the kidneys, which may be true for healthy people but might not be true for someone with sarcoidosis or Rheumatoid arthritis.

Personal Impact

My own was hormone D level was 55 pg/ml recently which is within the range considered normal but it is towards the high end of the range. It has remained around that level even while limiting dietary sources and exposure to sunlight. The vitamin level was below 10 which is low, above 20 to 30 is the low end of the normal range for the vitamin form of D. So do I have low levels, normal levels or elevated levels? My endocrinologist's recommendation that was sent with the vitamin D/hormone D lab report was to start taking vitamin D and calcium in order to help reduce osteoporosis risk but if all levels over 42 pg/ml are causing calcium to leave my bones already then adding extra vitamin D is more likely to add to the infection risk. The use of Benicar and reduced intake of vitamin D and sun exposure is mentioned in this review article about Vitamin D and infection: [1]

My own medical history includes an episode of Epstein-Barr virus/mononucleosis during college and more recently a diagnosis of Grave's Disease, which is an autoimmune thyroid condition related to Rheumatoid Arthritis in that bone marrow cells become labeled with a thyroid receptor and infiltrate the thyroid gland. The thyroid can become overactive and overproduce thyroid hormone and sometimes the bone marrow cells become mislabeled in a slightly different way and infiltrate the fatty area behind the eye sockets and cause the eyeballs to protrude.

Professional Impact:

I would like professional guidance about abnormal vitamin/hormone D metabolism iin infection for myself and family and for feeling comfortable about counseling nutrition clients. Without knowing both the vitamin and hormone D levels of a client I can't really know whether a low vitamin D level alone means the client isn't getting enough of the nutrient or sun exposure or whether they might have an underlying infection that hasn't been diagnosed. But without the professional 'evidence-based' guidance from the mainstream medical industry I can't really recommend alternative strategies to a client legally. A professional code of ethics encourages us to do no harm in the health industry but during the earlier phases of medical research it can be more difficult to figure out what might be helpful and what might be harmful.

*I may add to this later but I'm going to try to post it now because I'm having trouble saving it. 2:12pm post was successful, update added, and at 10:54pm.

9/16/2015 correction added. A type of gastro intestinal bacteria, Prevotella copri, has been found to be more prevalent in the GI tracts of people with rheumatoid arthritis. Intestinal bacteria linked to rheumatoid arthritis (Nov. 5, 2013).

This post is continued on the next two posts:

• Fringe reports; Elevated hormone D levels and irritability, August 12, 2015.

• Screening and testing for intra-cellular pathogens, August 14, 2015

/Disclosure: This information is provided for educational purposes within the guidelines of fair use. While I am a Registered Dietitian this information is not intended to provide individual health guidance. Please see a health professional for individual health care purposes./