Secondary hyperparathyroidism and calciphylaxis symptoms; an update with lab values

Last month I described some health difficulties that I had been experiencing for quite awhile. Lab tests that had been drawn earlier in the summer suggested that the problem might be secondary hyperparathyroidism and I also had been having a number of odd symptoms including calciphylaxis that can be associated with secondary hyperparathyroidism but is a more common in end stage renal disease (ESRD) particularly for patients on dialysis who were also receiving calcium supplements (and calciphylaxis is associated with eight times increased morbidity in ESRD). In the second post I reported that I was already feeling much better on the treatment plan that I had developed for myself.

I started taking 300-500 mg calcium per day based on the theory that the symptoms were related to calcium deficiency secondary hyperparathyroidism. I also increased my protein intake except for eliminating egg white and tree nuts from my diet – as a precaution in case I had developed autoimmune sensitivity to those protein sources which I had been eating more regularly than other foods during a time when I wasn’t eating enough overall. A steroid skin cream containing Triamcinolon 0.5% applied twice a day helped the calciphylaxis like skin sores heal. And I started taking 40 mg Benicar/olmesartan per day in an attempt to modify the low vitamin 25 D and vitamin 1, 25 D > 42 pg/mL. Levels of vitamin 1, 25 D above 42 pg/mL signals the bones to release calcium and phosphorus and can increase risks of osteoporosis and soft tissue calcification. [1, 2: MPKB- Science behind olmesartan (Benicar).]

  1. Secondary hyperparathyroidism, calcium deficiency and irritability, 
  2. Elevated parathyroid hormone (PTH) and 1-25-D, calcium deficiency and calciphylaxis, 

The 6/15/15 lab values:

  • Parathyroid hormone level – PTH Intact – 154.1 pg/mL — normal range: [15.0-75.0]
  • Calcium – 8.8 mg/dL — normal range: [8.4-10.2]
  • Phosphorus was not ordered but would probably be good to check.
  • Vitamin D, 25 – 10.9 ng/mL — normal is considered: [30.0-100.0]
  • Vitamin D 1, 25 – 55 pg/mL — normal is considered: [18-72] (the active hormone D)

The 10/12/2015 lab values:

  • Parathyroid hormone level — PTH Intact — 66.1 pg/mL — normal range: [15.0-75.0]
  • Calcium — 9.3 mg/dL — normal range: [8.4-10.2]
  • Serum Phosporus — 3.6 mg/dL — normal range: [2.5-4.5]
  • Vitamin D, 25 — 18.4 ng/mL — normal range: [30.0-100.0]
  • Vitamin D 1, 25 — 36  pg/mL — normal range: [18-72] (the active hormone D)

So I started taking calcium supplements and 40 mg of Benicar on September 23 and on October 12 my parathyroid hormone level is back within the normal range. My active 1, 25 D is below the osteoporosis inducing level of 42 pg/mL and my inactive vitamin 25 D level increased from 10.9 to 18.4 ng/mL — even though I am not taking vitamin D supplements but I do get more than fifteen minutes of sunshine most days of the week. My calcium level is still within the normal range but it went up from near the low end of the range to closer to the middle, from 8.8 to 9.3 mg/dL.

During the last couple days the calcium supplements have been causing me to have increased muscle cramps and irritable mood and I found that soaking in Epsom salt tub or footbath helped reduce the muscle cramps and bad mood. So the balance between magnesium and calcium intake is important and intestinal malabsorption of magnesium may be part of the underlying problem.

Overall I’m feeling much better than I was in early September before I started taking the calcium supplements. I had been having a racing heartbeat on very little exertion (like tachycardia) and for a long time I had been having an internal jittery-ness that felt like a bottled up pressure that needed a release valve or pinprick to pop the overfull bubble. The painful skin sores had been a fairly new and very unpleasant development. So yippee I have skin again! And I can walk downstairs without having to pause to let my heart rate slowdown.

I still have autoimmune thyroid antibodies but my thyroid hormone and thyroid stimulating hormone levels are within normal range — 10/12/2015 lab values:

  • Serum Thyroglobulin AB — 41 IU/mL — normal range: [0-40]
  • Serum Thyroid Peroxidase AB — 301 IU/mL — normal range: [0-34]
  • T3 Free Serum — 4.09 pg/mL — normal range: [2.77-5.27]
  • T4 Free Serum — 1.14 ng/dL — normal range: [0.65-1.86]
  • Serum Thyroid Stimulating Hormone — 1.20 mIU/L — normal range: [0.46-4.68]

To prevent autoimmune hyperthyroid symptoms I have been avoiding foods containing gluten and iodine sources since receiving the diagnosis in 2013. The gluten protein molecule contains a section called gliadin that is chemically similar to the thyroid hormone. The chemical similarity between gliadin and the thyroid hormone may allow autoimmune thyroid antibodies to develop in susceptible individuals, so avoiding gluten in the diet may be helping reduce or prevent the production of the autoimmune thyroid antibodies.

–The bad news – my endocrinologist still wants me to take a vitamin D supplement for my low vitamin D. [previous post: Whether to be compliant or to be healthy seems like an easy question to answer

/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./

 

Elevated parathyroid hormone (PTH) and 1-25-D, calcium deficiency and calciphylaxis

I’m feeling so much better after only two days of calcium supplements that I feel like throwing a party. Fatigue is tiring. Replenishing supplies of a trace nutrient deficiency can help resolve symptoms so quickly that it feels like a miracle. I’ve experienced rapid resolution of symptoms in the past when I had a problem with low B1 intake [2] that was due to a low intake of everything – I had an anorexic appetite at the time which I later found may have been due to an underlying zinc deficiency.

The anorexic appetite symptom resolved when I added zinc and B6 supplements after reading about pyroluria. Pyroluria is not yet treated or accepted by most main stream health practitioners but it is believed to be due to a genetic defect affecting an enzyme that helps break down old hemoglobin for reuse and recycling. Molecules of B6 and zinc are involved in the process and in normal health would be recycled but if the person has the genetic modification than the B6 and zinc is released in urine rather than being retained for reuse. [1]

Calciphylaxis is a symptom that is not well understood but is associated with severe hyperparathyroidism. It is a rare symptom in the general population but is seen more frequently in people with end stage renal disease. When the kidneys are no longer able to make normal amounts of 1, 25 dihydroxy D the plasma calcium levels can drop. And to try to maintain normal calcium levels the body responds by having the parathyroid glands increase production of parathyroid hormone which in normal health would tell the kidneys to activate more 1, 25 dihydroxy D which would then tell the intestines to absorb more calcium and would tell the bones to release more calcium from storage. [3] But in end stage renal disease there aren’t functional kidneys and the elevated levels of parathyroid hormone can cause other symptoms like irregular or rapid heart rate or in severe cases calciphylaxis may occur.

Calciphylaxis “is a poorly understood and highly morbid syndrome of vascular calcification and skin necrosis.” [4] The word calciphylaxis may refer to the syndrome or to the patches of necrotic (decaying) tissue which may occur internally on the surface of bones or externally in patches on the surface of the skin. The decaying areas occur more commonly on the lower legs. The areas can first appear as reddish or purplish bruised areas that may feel like they have small hardened nodules under the skin. The skin surface may be itchy and eventually may break down to be an open wound that doesn’t heal easily. There is a risk of skin infections developing in the open wound which can become severe enough to cause sepsis and death as the patches of decaying skin or bone areas do not heal well.

Calciphylaxis is more of a risk with end stage renal disease but it has also been found in people who had normal vitamin D levels and normal kidney health. And “high dose vitamin D administration is capable of inducing STC (soft tissue calcification) and calciphylaxis in murine models. [56, 57] In an attempt to reestablish normal calcium-phosphate homeostasis, ESRD patients receive vitamin D analogs that could theoretically increase their risk of calciphylaxis if hyperphosphatemia and hypercalcemia ensued. [58, 59]” [3]

“Experimental sensitizing events and agents included nephrectomy and exposure to parathyroid hormone (PTH) and vitamin D. Substances used as challengers included egg albumin and metallic salts. Calciphylaxis was the end result.4  – from a 1962 study, abstract is free. [4.5]

Eczema is something I’ve had to cope with since infancy along with severe congestion problems. The images of calciphylaxis do not look quite like the itchy patches that I’ve been dealing with for a few months but they resemble the images of calciphylaxis more than they look like the patches of eczema that I’ve had off and on since infancy.

The fun thing about autoimmune disease is all the nifty weird symptoms that you get to experience – and which are so rare that many physicians don’t want to see you or the symptoms in their office –  because those unusual symptoms must be covered by some other specialist’s field. This quote said it well:  Calciphylaxis “is a poorly understood and highly morbid syndrome”. [4]  Maybe I wouldn’t want that syndrome to be my professional responsibility either, and maybe it is just too bad for me that it might be my personal responsibility whether I like it or not. However maybe I’m lucky that my professional and personal experiences have left me more informed about odd symptoms than other health professionals, and therefore I may possibly be better equipped to cope with the odd symptoms.

Thankfully just two days of calcium supplements (while continuing to avoid excess vitamin D and sunshine) have left me feeling less itchy and my open wound areas are beginning to form scabs instead of remaining open wounds with seeping plasma.

In normal physiology the activated hormone form, 1, 25 dihydroxy D, is typically found in elevated amounts only in areas of rapid growth or membrane breakdown, such as in scab formation by white blood cells, [6], and within the placenta during pregnancy. [5] – Maybe elevated 1, 25 dihydroxy D can also be an underlying problem causing calciphylaxis rather than it being due only to deficiency of the inactive vitamin 25-D or the active hormone 1, 25-D.

Yes, my vitamin 25-D level was low at 10.9 ng/mL and anything below 20-30 is considered deficient and I was recommended by my endocrinologist to take vitamin D and calcium. However my hormone 1, 25-D level was 55 pg/mL which is considered within the normal range by mainstream medicine (range: 18-72 pg/mL). Specialists in vitamin D/hormone D metabolism would consider levels of 1, 25-D above 42 pg/mL to be elevated enough to be an osteoporosis risk because above that level the bone cells start releasing calcium, phosphorus, and magnesium into the blood supply instead of absorbing the minerals from circulating plasma and storing them for increased bone strength or for later use. [7]

Calcium and magnesium are so important as electrically active ions that the body has a variety of ways to maintain the blood levels of the two minerals within a narrow range. Blood tests for calcium and magnesium levels may be normal even though there is inadequate dietary intake because the bones can act like a savings account at the bank. In normal health if the blood plasma dips a little low for calcium or magnesium, more minerals are released from the bone, and if levels are getting too elevated than more would be excreted by the kidneys, less would be absorbed by the intestines, and more would be absorbed into the bones for long term storage.

However if 1, 25-D levels are elevated above 42 pg/mL than even if calcium levels were elevated in the blood the abnormally elevated 1, 25-D level would still be telling the bones to release more calcium and for the intestines to absorb more calcium which would lead to way too much calcium for the kidneys to be able to excrete during good health let alone during renal disease (elevated blood calcium would normally signal the body to make more of the enzyme that de-activates 1, 25-D but some microbial pathogens seem to bypass our immune system by disabling our body’s ability to make that enzyme). Adequate magnesium is necessary for the kidneys to be able to excrete calcium and elevated 1, 25-D causes the intestines to preferentially absorb calcium rather than magnesium.

And it turns out that eczema is an autoimmune disease so I may have been trying to figure out how to feel healthier since I was a baby. [8]

My mother gave up trying to spoon feed me. She said I would spit food into my hand, look at it, then put it back into my mouth before swallowing. She put cookie sheets around my highchair to block the mess (and possibly the view) and left me to feed myself from a fairly early age. I still don’t like to be fed by others, whether it’s just a taste of something on a spoon, or whether it is a dietary supplement that might cause my underlying autoimmune condition to worsen.

I’m feeling less itchy and the open wound areas are beginning to heal. The tachycardia problem is better, (having a rapid heart rate with little exercise), and an internal jittery feeling is less. The problem with trying to medicate a nutrient deficiency with psychiatric drugs is that the psychiatric drug can’t take the place of a nutrient in metabolic pathways. For years now physicians, family members and friends have been encouraging me to just take the psychiatric medication as prescribed and stop complaining about psychosomatic symptoms and imaginary problems. But the psychiatric medications that were offered all had bad side effects and while some helped slow down whirling thoughts they didn’t make the thoughts less sad or negative and they didn’t take away the internal feeling of tension.

I felt like a coiled spring internally, very jittery all the time and unable to concentrate as well as normal. I knew something was wrong and I knew feeling like a coiled spring all the time wasn’t an imaginary delusion and the feeling didn’t go away with the three different anti-psychotic medications that physicians or psychiatrists had me try.

We can’t afford ineffective health care as individuals or as a global community. Harsh medications that cause side effects in humans are probably also causing side effects in the health of the environment once the chemicals become waste products. Expensive pharmaceuticals that cause side effects in patients without addressing the person’s underlying condition are primarily helping the pharmaceutical company and may be causing the person’s condition to worsen over the long term.

Low protein intake may be involved as hypoalbuminemia is a risk factor for calciphylaxis. [9 -includes images of calciphylaxis wounds.] I don’t know for sure that my weird skin patches are early stage calciphylaxis wounds but I hadn’t been eating much protein in the weeks before my bruise like symptoms became more like open painful sores and I have probably had a low calcium intake ever since I started limiting my use of dairy products. I did take calcium supplements in the past but my chronic muscle cramps became a problem and the calcium seemed to make it worse. More recently not eating much for a couple weeks would have further reduced my intake of calcium from the sources such as sesame seeds and tree nuts that I normally do eat. Just two days of calcium supplements have helped me feel calm internally instead of jittery (I’m using about 500 mg spread out through the day in low doses). I’m also eating a more adequate amount of protein and other foods and the odd skin patches have less of a burning itchy painful feeling and the areas are starting to heal rather than remain open seeping wounds.

Twenty three and a half to fifty million Americans may have one or more types of autoimmune diseases. [10] So I don’t think that I am the only one who has been regularly told that her symptoms must all be imaginary and to go see a talk therapist or to go get stronger and stronger psychiatric medications. We can’t afford ineffective health care because it doesn’t help the patient and the medications may be bad for the environment once they become waste products. Calcium is a natural mineral that is not harmful to the environment and it is inexpensive.

6/15/15 lab values:

  • Parathyroid hormone level – PTH Intact – 154.1 pg/mL — normal range: [15.0-75.0]
  • Calcium – 8.8 mg/dL — normal range: [8.4-10.2]
  • Phosphorus was not ordered but would probably be good to check.
  • Vitamin D, 25 – 10.9 ng/mL — normal is considered: [30.0-100.0]
  • Vitamin D 1, 25 – 55 pg/mL — normal is considered: [18-72]

I did schedule an appointment with a physician but it will be a few weeks and the tachycardia was not pleasant, the internal coiled spring feeling made it hard to concentrate and hard to not over react to outside events, and the open seeping sores were painful.

I don’t see why I should not try to take care of myself rather than having to follow the orders/recommendations of physicians or psychiatrists when they are working from the premise that “we don’t know what is causing your symptoms or how to cure them but we would really like you to take these harsh medications anyway because we guess that they might reduce some of your symptoms – and please just ignore the negative side effects that the medication is actually adding to your problems because we guess that the medication might help reduce some of the symptoms that you originally came to see us about.” That is an example of circular logic based on guesses and I’m not buying it anymore now than I did when I was sitting in a highchair covered with eczema, milk based formula, and baby food.

Medications can be life saving and certainly are a modern miracle but nutrients will always be our body’s building blocks. Providing medicines to reduce symptoms of nutrient deficiency will only prolong the time the body is left without adequate nutrients and some deficiencies can cause long term damage that is not reversible once the nutrient is added back to the diet. A long term deficiency of Vitamin B12 can cause irreversible nerve damage, [11], and it turns out that calcium or vitamin D deficiency can cause osteoporosis if the deficiency is chronic enough to lead to secondary hyperparathyroidism.

/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./

Bibliography:

  1. Pyroluria: anxiety and deficiency of B6 and zinc
  2. Thiamin: people with anorexia or alcoholism are more at risk for vitamin B1 deficiency
  3. Julia R Nunley, MD, “Calciphylaxis,” Medscape, July 21, 2014, [4-Overview,  4.5-Pathophysiology]
  4. Liu NQ et al., “Vitamin D and the regulation of placental inflammation.” J Immunol. 2011 May 15;186(10):5968-74. doi: 10.4049/jimmunol.1003332. Epub 2011 Apr 11, [5]
  5. Eleftheriadis T., et al., “Vitamin D receptor activators and response to injury in kidney disease.” JNephrol 2010: 23(05): 514-524 [6]
  6. Meg Mangin, Rebecca Sinha, and Kelly Fincher, “Elevated 1,25(OH)2D appears to be evidence of a disabled immune system’s attempt to activate the VDR to combat infection.” Inflamm Res. 2014; 63(10): 803–819., 2014 Jul 22. [7]
  7. by Charlotte LoBuono, “For the First Time, Study Proves Eczema Is an Autoimmune Disease.” Jan. 5, 2015, [8]
  8. Dermnet NZ, “Calciphylaxis,” [9]
  9. AARDA, “Autoimmune Statistics,” [10]
  10. Vitamin B12 deficiency can cause long term nerve degeneration.” August 21, 2013, [11]

Additional references about risk factors for calciphylaxis in dialysis patients:                   These articles are not mentioned in the text above and the research studies are not about secondary hyperparathyroidism but they do suggest that adequate protein intake may help reduce risk for calciphylaxis and that having elevated phosphorus or alkaline phosphatase levels may increase the risk.

  • Zacharias JM, Calcium use increases risk of calciphylaxis: a case-control study. Perit Dial Int. 1999 May-Jun;19(3):248-52.  [link] *This small research study is about calciphylaxis occurring in patients on kidney dialysis – calcium supplements were found to increase risk of calciphylaxis, while iron intake may have been protective, vitamin D intake made no difference between groups, (n=8 women). The study group’s parathyroid hormone and albumin levels were not found to be significantly different then the lab values of the control group of dialysis patients who did not have calciphylaxis. The conclusion includes the suggestion that “use of calcium salts as a phosphate binder” during dialysis might have something to do with the increased rate of calciphylaxis that was being seen at dialysis centers at the time.
  • A Rauf Mazhar, et. al., Risk factors and mortality associated with calciphylaxis in end-stage renal disease.  Kidney International (2001) 60, 324–332; doi:10.1046/j.1523-1755.2001.00803.x [link] *This study (n=19) found an increased risk for calciphylaxis in dialysis patients who were female, and when the patient had elevated phosphorus and/or alkaline phosphatase levels and/or low serum albumin levels. “Calciphylaxis independently increased the risk of death by eightfold.”
  • Doweiko JP, Nompleggi DJ. The role of albumin in human physiology and pathophysiology, Part III: Albumin and disease states. JPEN J Parenter Enteral Nutr. 1991 Jul-Aug;15(4):476-83. [link] *Albumin is the main protein found in blood plasma and having low albumin levels is also associated with poor wound healing and an increased risk of death.
  • Albumin levels can be low even when there is adequate protein intake in the presence of edema. Fluid imbalance can make the albumin values seem lower due to the change in concentration of the blood serum rather than due to changes in diet. However edema and low protein intake may both be problems. A low protein intake can increase the risk for edema.
  • Pickwell K, Predictors of lower-extremity amputation in patients with an infected diabetic foot ulcer. Diabetes Care. 2015 May;38(5):852-7. doi: 10.2337/dc14-1598. Epub 2015 Feb 9. [link] *Severe edema is also a sign of ill health. the presence of edema increased the risk of poor wound healing and the need for amputation for patients with a diabetic foot ulcer.

 

Low vitamin D levels associated with increased LDL/HDL cholesterol ratio and triglyceride levels

In a previous post I had mentioned that I had received a few responses from colleagues who had read my vitamin D article. When I checked an older account, I found that I had saved a copy of two of the emails. I posted a copy with names and contact information removed as evidence of my attempt to seek help. I have made the post private and added a link to it within the post where I had mentioned the topic. The emails had been intended as private correspondence and I hadn’t asked the writers for permission to post a copy. My send virtual apologies to them in advance.

One of the emails included this link with the suggestion that it contradicted my article. But it actually supports the premise that healthy levels of vitamin D are healthy and abnormal levels may be abnormal rather than deficient in a normal sense of the term nutrient deficiency. Vitamin D is unique in that it can be formed by the body from cholesterol. Other vitamins and minerals that are considered essential can not be produced by the body. A deficiency of one of them would suggest a true lack of the nutrient but a low level of vitamin D can occur with an elevated level of the active hormone form of the nutrient.

Continued below the link:

48510

Topic:

High Serum 25(OH)D Concentrations Linked to Favorable Lipid Profile

***This is just an abstract, on rereading it I see that it doesn’t include that much information about the results and I misread the data about types of cholesterol. All the types of cholesterol levels were higher in the participants with normal or higher levels of vitamin D not just the ‘good’ HDL cholesterol. However the total ratio of good/HDL to bad/LDL cholesterol was better and the triglyceride level was lower in the participants with normal levels of vitamin D than participants with low levels of vitamin D.

I had written this earlier today:

*The study included in this email actually does not conflict with my research findings – Many studies have shown that health is associated with having normal vitamin D levels. Obesity and chronic illness is associated with having depressed vitamin D levels. The controversy arose when some research physicians decided that therefore simply providing megadoses of vitamin D should/would correct the depressed vitamin D levels and correct the individual’s underlying chronic illness problem — but correcting the depressed levels hasn’t proven to be that simple.

Studies on the effectiveness of providing vitamin D supplements have not shown that health improves even when the person’s vitamin D level was able to be brought back up to the normal range by providing megadoses of the supplement or megadose injections of the supplement. Much of the research that showed depressed levels of vitamin D did not also include laboratory assessments of the participant’s hormone D levels – which likely were actually elevated in the individuals who had obesity or chronic illness problems.

Megadoses of the supplement that are given to individuals whose bodies have too much of the activating enzyme and not enough of the deactivating enzyme will simply by converted into hormone D and lab tests for vitamin D will continue to be low. This lack of change in the vitamin D lab values even with the provision of larger and larger supplements was baffling the research physicians. They continue to seem to think that most or all of the supplemental vitamin D that is given to patients will remain in the vitamin D form within their bodies — the problem in chronically ill and obese people is that the supplements of vitamin D may be rapidly being converted into hormone D. And my concern based on my on experience with elevated hormone D levels is that it is very biologically active in many systems of the body and it can cause muscle cramps and mood changes and actually cause osteoporosis over time rather than help prevent it. Hormone D is not just for strong bones.

I then started adding this but realized the abstract really doesn’t provide enough information about the cholesterol levels in the participants with low levels of vitamin D to speculate about possible causes.

/Speculation/ Thinking more about this research link suggested to me that the higher ratio of ‘bad’ LDL cholesterol in the participants with lower vitamin D levels may actually be showing evidence of the soft tissue calcification that can occur with elevated levels of hormone D. Excess calcium is stored along the walls of arteries and veins within placques formed by cholesterol deposits. The cholesterol helps enclose the electrically active calcium ions which can cause damage if allowed to enter into the interior of cells. Magnesium is the electrically active ion that is found in greater quantity within the interior of cells. It is necessary to help block openings within cell membranes that can allow calcium or other chemicals into the interior of the cell in amounts that might be unsafe (for more information look up excitotoxins, aspartic acid, or glutamates).

From a previous post regarding having elevated hormone D levels: “It causes increased loss of calcium from the bones and can lead to osteoporosis over time, and excess free calcium in soft tissue can cause muscle cramps and headaches in the short run and lead to calcification of soft tissue over time, such as atherosclerosis, a type of hardening of the arteries.” [post]

/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./

Screening and testing for intra-cellular pathogens

An important sentence in my last post could have been entered in a longest sentence contest and so I would like to separate the sections and go into more detail:

“But to me it would be great if more experts and more individuals did become interested in looking into the information and maybe add further understanding and research,

and then maybe sooner than later we would  develop a national blood and organ supply that is tested for intra-cellular infectious pathogens;

and develop clear guidance about the importance of measuring both hormone D and vitamin D levels

in order to clearly see which patients are actually deficient in both the vitamin and hormone forms and would therefore need to increase their sun exposure or their intake of vitamin D

and which patients actually have elevated hormone D levels instead of being deficient.

Low vitamin D levels with elevated hormone D levels may suggest the person has an underlying infection with an intra-cellular pathogen and that person would actually benefit more by limiting their sun exposure and their intake of vitamin D – and they might be able to treat the underlying infection with Benicar and antibiotics.” [last post]

A few steps might be necessary for implementing this section: “and then maybe sooner than later we would  develop a national blood and organ supply that is tested for intra-cellular infectious pathogens;” The first step is for the medical and academic communities to admit that intra-cellular infectious pathogens have been found that can cause acute or chronic illness. Research scientists and medical professionals can put their careers at risk if they work on alternative theories instead of working on widely accepted theories. and funding for research regarding alternative topics is unlikely to be available.

Autoimmune disease was suggested to be a normal part of aging in a college textbook that I looked at within the last few years – I don’t remember the title or have the link but I was very sad to find that information in a current academic text. If autoimmune disease is part of aging then why would Rheumatoid Arthritis have a juvenile Rheumatoid Arthritis version? Why would a mother have RA and have a four year old child with juvenile RA – did the child age very rapidly or could RA be passed from mother to child during pregnancy? And more importantly, might they both go into remission if they were to take Benicar and antibiotics while avoiding vitamin D and sun exposure? That mother with RA who knows first hand how much pain her child with RA is likely to experience might really like to know that a cause and effective treatment may have been discovered.

Currently the treatments that are commonly used for RA are immune suppressing drugs which can have severe side effects. Some of the drugs are also used in chemotherapy.  Immune suppressing drugs are used in autoimmune  disease because much of the damage that is caused over time is due to overactive white blood cells. However if the overactive white blood cells are doing their best to try to find an underlying infection then killing them off with immune suppressing drugs is also killing off the body’s only defense against the infection. Intensive treatment with immune suppressing drugs may help make a patient more comfortable over the short term by suppressing symptoms caused by the overactive white blood cells but instead of leading to remission of the disease, the patient’s life expectancy may be shortened to only a few years because the medications are only addressing symptoms instead of treating an underlying cause.

Once the existence of intra-cellular pathogens is officially admitted then the second step to take towards “a national blood and organ supply that is (screened and) tested for intra-cellular infectious pathogens” would be fairly easy and inexpensive to implement. Changes in the screening of potential donors could be put in place before improved testing of the donated tissue might be possible.

I forgot to include the word screened in the original sentence. The problem with testing for the presence of the intra-cellular pathogens currently is that they are hard to grow and take a long time to grow with standard Petri dish agar cultures. However there is already extensive guidelines for screening blood and organ donors regarding their medical history before they are allowed to donate. If tuberculosis can be spread by carriers who haven’t had symptoms of TB then anyone who is known to have had TB in the past should probably never be allowed to donate blood or organs even if they aren’t actively sick anymore. [7 and atrainceu.com from  the post before the last post] And therefore if the autoimmune disease sarcoidosis, Crohn’s Disease, and Rheumatoid Arthritis all involve similar infectious mechanisms then anyone who has been known to have any of those diseases in the past should also not be allowed to donate blood or organs even if they aren’t actively sick anymore.

A third step towards a safer blood and organ supply would be adding the requirement to test donated tissue for the presence of intra-cellular pathogens. It is possible that advances in DNA screening might solve the problems with how difficult and long it takes to grow cultures of the pathogens. Advances in DNA screening [1] might make it possible eventually to simply screen a sample for the presence of DNA from the Mycobacterium tuberculosis pathogen or from the pathogen that Lida Mattman found involved in RA or Lou Gehrig’s Disease (ALS) or from her husband’s coronary.  [video  from  the post before the last post] Prof. Mattman was able to cause coronaries in lab animals by exposing them to the unidentified pathogen that she was able to culture from a tissue sample obtained from her husband after he had a coronary heart attack. In the video, ~19:30, her concern about the possibility of coronary disease being contagious was not just for hospital visitors but was also for other hospitalized patients. A healthy visitor might not be as much at risk as an immune compromised patient who is sharing a hospital room with someone who just had a coronary.

Aspergillosis fungal infections are common in patients with advanced HIV/AIDS and in transplant patients on long term immune suppressing drugs but for most people the fungus is a common contaminant that doesn’t lead to an infection because our immune system prevents it from multiplying.  [atrainceu.com and  from the post before the last post] Prof. Marshall’s protocol suggests focusing more on correcting the imbalance in the hormone D metabolism that allows the pathogens to survive intra-cellularly, rather than focusing on which specific pathogens might be present because there might be a mixture of different pathogens who all developed similar ways to invade and survive within human cells. His protocol focuses on restoring the body’s natural immune mechanisms so the healthy white blood cells can identify and destroy cells that are infected with any intra-cellular pathogen whatever type it might be. However his original goal was finding an effective treatment for sarcoidosis so the Benicar as an angiotensin receptor blocker may be effective in sarcoidosis if the pathogen in that disease developed the ability to make infected cells develop extra Angiotensin Receptor’s as a way to disguise themselves as normal cells but the Benicar might not help someone with Grave’s Disease who has bone marrow cells with abnormal Thyroid Stimulating Hormone (TSH) Receptors. Someone with Grave’s Disease might need a medication developed that blocks TSH Receptors instead of blocking Angiotensin Receptors.

I have the autoimmune hyperthyroid condition called Grave’s Disease. It involves abnormal bone marrow cells and may be similar to Rheumatoid Arthritis and it is associated with Lou Gehrig’s Disease (ALS) (19% comorbidity, 4), and the autoimmune dry eye syndrome, Sjögren’s syndrome. [3] Symptoms similar to those of ALS can also be found in patients with advanced HIV/AIDS and Lyme’s Disease, [4], both of which have disease processes that have been shown to interfere with the immune function of the Vitamin D Receptor.  [page 19, 1, from the post before the last post] Currently my thyroid condition is in remission but that is while avoiding gluten and dietary sources of iodine and vitamin D and avoiding too much sun exposure.

We do not have a large number of children with vitamin D deficiency rickets, which suggests to me, that for most people summer sunlight exposure and the current level of fortification of the food supply with vitamin D is adequate. Canada is farther north than most of the United States and yet their population’s average vitamin D level is normal (50 nmol/L). [5, 6] The number of Americans with vitamin D levels below 30 nmol/L increased between a study performed from 1988-1994 (45% > 30nmol/L, n=18,883) and one performed in 2004 (23% > 30nmol/L, n= 13,369) but there is some controversy over whether differences in how the lab test was processed might have skewed the results. [8] My fear is that some of the difference might represent an increase in the number of people with an underlying intra-cellular infection that causes depressed vitamin D levels and elevated hormone D levels rather than truly being deficient in both vitamin D and hormone D.

Hormone D levels are rarely measured because it is a more unstable chemical found in lower concentrations and current medical theory believes that the enzyme needed to convert the inactive form to the active form is only produced by the kidneys — but it is also produced by white blood cells during inflammatory conditions — autoimmune disease and heart disease are inflammatory conditions.

Magnesium deficiency and/or excess intake of calcium may be involved for some individuals. Zinc and B vitamins are also essential as cofactors for converting between the active and inactive forms of vitamin D so malnutrition in general may increase people’s susceptibility to an intracellular infection. Medical marijuana is also a controversial topic because the plant is categorized as not having medical uses at the federal level but within the healthy body different types of cannabinoids are made for use within membranes and as messenger chemicals. Genetic defects, older age, or malnutrition may prevent some individuals from making the cannabinoids internally. Hemp and some other foods in addition to the marijuana plant also can be an external source of cannabinoids but the amount and types produced may depend somewhat on the fertility of the soil.

I have tried to share this information because it could help improve health and quality of life for many people and reduce the amount of money and supplies being used for ineffective health care. We can’t afford health care that might be making individuals worse and may be spreading disease within contaminated blood, organs, or through procedures and screening tools that don’t recognize that more conditions may be contagious through blood-borne routes than was previously recognized.

While I do not have a PhD I do have a Bachelor’s Degree in Administrative and Clinical Dietetics and fifteen years of public health education experience. Selling products at a profit is not something I have experience at, giving away free health information, possibly along with a motivating freebie as an incentive, is where I do have professional experience.

Another famous quote has been a motivating force for me since I first got concerned about the controversy over vitamin D in 2010:

“And so, my fellow Americans: ask not what your country can do for you — ask what you can do for your country.” – President John F. Kennedy,  Inaugural Address, January 20, 1961 [9]

So, my  fellow Americans and any other readers: chances are if you don’t have rickets and do use some dairy products and breakfast cereals regularly, then you probably don’t have a deficiency of vitamin D but if your levels are below 20 nmol/L then you may have an intra-cellular infection. The possibility of an infection might seem like bad news but it is more informative than “We don’t know what causes your disease or how to cure it but we would love for you to take our side-effect inducing medications until you die or until we find a cure, whichever comes first, thanks so much for being a good sport about it in the meantime.

And the good news would be that the olmesartan/Benicar and antibiotic protocol might be an effective treatment for the underlying cause if an intracellular pathogen was involved in your symptoms. At this stage of research it is not the standard treatment that a general practitioner would be likely to have heard of let alone recommend, but you can look into the protocol and talk to your physician about it yourself. The Marshall Protocol Knowledge Base provides information for patients and for physicians regarding the science behind the protocol and provides guidance for the patient and for the prescribing physician regarding prescriptions, timing of doses, side effects to watch for and other precautions.

Personally I was thrilled to get rid of my severe migraine problem with the use of olmesartan, antibiotics, and avoiding vitamin D foods and supplements and avoiding much time spent in bright sunlight — it wasn’t easy but the migraines were much worse. I was on the medication protocol for a year and half and had been having weekly migraines for over a decade — I was more than thrilled for myself I was thrilled for everyone else who might have migraines or might be tired of hearing “we don’t know what causes your autoimmune disease or how to cure it.” Migraines aren’t autoimmune disease but they can be a symptom of other conditions and more recently I have been diagnosed with autoimmune thyroid disease which can go back and forth between hypo- and hyper- phases for some patients.

More research is needed but a lot of research has occurred if you’re willing to go read more about it yourself. [mpkb.org]

Tangent: I’ve tried to share this information in the past because I believe it is necessary for public health and economic health and environmental health. Medications that have harsh side effects on human health are also likely to have harsh side effects on the environment. Anything we are pouring in our bodies or on our agricultural fields is likely to eventually reach the ground water supply or the ocean where increasing acidity is already beginning to affect the ability of shellfish to form shells – the shell material dissolves in higher acidity.

And so, my fellow Americans:  Yes, I had a Presidential campaign website in 2012 because I was as serious as a heart attack about my fears regarding our nation’s health and our food supply. The nutrient guidelines are used to make meals and formulas for people who may be incapable of eating to appetite. If the guidelines are not correct than the meals and formula nutrient balance may lead to chronic nutrient deficiencies. All the nutrients work together somewhat so research that only looks at vitamin D alone or calcium alone may be missing deficiencies of magnesium or zinc  or B vitamins or cannabinoids. Our government is responsible for meals for the military and for school children and people living in residential facilities who are on Medicaid or Medicare and for prisoners. the government doesn’t directly set nutrient guidelines but could probably fund research if the elected officials were working towards that goal.

I never claimed to be experienced in politics and there would be little point in my trying to get involved at the local level because nutrient and medical policies are made at the federal level and may be implemented at federal, state and local levels. My credibility and reputation have suffered some setbacks since I started writing online in 2010 but there is unlikely to be another person available who has had my combination of personal and professional health experiences — and so, my fellow Americans: if there are any of you who would like to vote for me in 2016 for President of the United States then I would do my best if elected to help our country become a healthier country which would likely help make it a wealthier country as well.

My campaign slogan was also serious: “A vote for me is probably a bad idea, but a vote for magnesium is a good idea.” I was trying to be clear that I know that I’m not a good role model for normal social skills or skilled at political networking and fundraising, but that I firmly believe that my nutrition platform is very important for the long term economic and physiologic health of our nation. Whether I’m married or divorced,* or how wealthy or broke I am, would probably not make any difference to a person suffering from Crohn’s Disease or ALS or RA or TB or sarcoidosis or HIV/AIDS.

So I’ll get FEC Form 2 filed before I receive $5000 in campaign contributions or within the next 15 days, whichever comes first.  ;-) That is an attempt at humor – I don’t expect to raise $5000 in contributions. The other reason that I ran for office was in protest of the Citizens United decision, so I was running as a write-in candidate in 2012 and hadn’t been aware of FEC Form 2 — I think voters should be able to vote for someone who isn’t underwritten by corporations and billionaires.

*I’ll let you know if my name changes again before Nov. 2016. I’m hitting Publish – with my fingers crossed that it works, but I also made a copy just in case. *The website’s software was due for an update — note to self: always update software as soon as prompted.

/Update: I didn’t fill out the FEC Form 2 or FEC Form 1 which I learned of once I started reading the instructions. The forms are only required if a candidate’s campaign expenditures or donations are reaching or exceeding $5000. I wrote more about this topic:

  • What’s a chad? or Confession is said to be good for the soulAugust 24, 2015.
  • Secretary of Health and Human Services, an additional note, and Fringe Topic: Parvo VirusAugust 31, 2015.

Caring a lot is important but so is experience and good health and I have limited supplies of both of those – I will continue to care and will post updates on health or other topics as I learn more.

/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./