A research study proposal; for clarity

To clarify a point from my last post, the cancer research I would like to see completed would be on the use of a vegan diet with ginger as a preventative or as a cancer treatment. Adding fluoride or bromide to 6-shogaol was simply an example of how other natural products have been made into chemicals that could be patented in the past.

The difficulty with designing clinical research studies is the ethics involved with substituting an experimental treatment for a treatment that has evidence supporting its value. A person with cancer is more likely to be allowed into experimental trials only after they have already been through other anti-cancer treatments that were unsuccessful – but which likely left their bodies in a weakened condition. Trying an experimental treatment as a first attempt would have to be with the patient’s understanding of the possible risks of not using the standard of care treatment instead. Maybe the standard treatment for the patient’s type of cancer provides the 22.5 months of survival on average but the experimental treatment wouldn’t have any history of clinical trials to offer as a comparison. So frequently the experimental treatments are only offered to patients whose cancer has returned or that had failed to respond to standard treatments.

Prostate cancer is a very slow growing cancer that is frequently a benign problem compared to other types of cancer. It is said that more men die with prostate cancer than die from prostate cancer — and surgery in the area sometimes leaves men with worse problems so a watch and wait approach is being recommended more often. A diet based research study designed for patients in the watch and wait phase of prostate cancer treatment might be a reasonably ethical experimental design.

The experimental dietary treatment that I would propose would be based on a vegan diet, possibly with fish, and which is low in arachidonic acid rich foods and is not excessive in total calcium foods or supplements and which provides adequate amounts of CLA fats, [8, 12, 13] and with ginger powder daily, approximately a half teaspoon per day or equivalent ginger root cooked in food — or with an appropriate amount of the purified active compound, 6-shogaol. However, use of the whole root or ginger powder or mixed extract might provide other beneficial phytochemicals, from a summary I wrote years ago:

  • In humans, mice, and in petri dish studies, ginger has been found to inhibit the action of 5-LO from converting as much arachidonic acid into 5-HETE and slowing prostate cancer cell growth. [13]
  • *The cancer cells replicate human enzymes  that increase membrane breakdown and release of arachidonic acid which is then converted into a form the cancer cells can use as an energy source. The ginger extract stopped the step that would have converted the arachidonic acid into the form, 5-HETE, that could be used as a food source for the cancer cells. [13]  So adding ginger to the diet might make avoiding arachidonic acid containing foods less of an issue – but moderation is usually still a good idea. Arachidonic acid is an omega 6 fatty acid found in egg yolks,chicken, liver and animal fats. [14, 15] Arachidonic acid can also be formed out of linoleic acid which is found in seeds and nuts and most vegetable oils. [15]

Approximately a half teaspoon of ginger powder was the amount found helpful for reducing pain for arthritis patients, but I still haven’t found the exact reference link, sorry. A different study on muscle pain due to exercise found that two milligrams of ginger powder given daily prior to the episode of strenuous exercise (approximately 3/4 teaspoon, which was given in capsules) helped reduce the exercise induced muscle pain by 25%. [9, 10] Heat treatment of the ginger powder was not found to give any further reduction in muscle pain in that study however for cancer prevention heat treatment might be increasing the amount of the chemical that is active against cancer, 6-shogaol.

Clinical results that showed benefit for the men with prostate cancer in the watch-and-wait phase might than be preliminary evidence to support trying the treatment plan for men with more advanced stages of prostate cancer or for women with breast cancer — with their understanding of the potential risks of using an alternative treatment instead of the standard of care treatment.

As a nutrition focused member of a multi-disciplinary team I would count on other specialists to work out the details related to stages of cancer and assessment, etc.                  — no one works alone these days.

/Tangent: 6-shogaol and two other phytochemicals found in ginger have also been found to help promote bronchodilation in asthma patients.  [11]/

/Disclosure: This information is provided for educational purposes within the guidelines of fair use. Information is not a substitute for individual health guidance. Please see a health professional for individual health care purposes./

Calciphylaxis, molecular mimicry and egg white albumin; an experiment, n = 1

Calciphylaxis is a rare type of wound that is associated with hyperparathyroidism and is most commonly seen in patients who are receiving kidney dialysis due to end stage renal disease. The condition is also associated with an eight times increased risk of morbidity (death) compared to patients who don’t have calciphylaxis.

The term calciphylaxis came to my attention this year when I found out that I had an elevated parathyroid hormone level. See the following posts for more information about calciphylaxis and about other symptoms associated with elevated parathyroid hormone:

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

  3. Secondary hyperparathyroidism and calciphylaxis symptoms; an update with lab values
  4. Calciphylaxis may be caused by several different nutrient issues

Antibodies against chemicals that are a normal part of the human body can develop in autoimmune disease. The term molecular mimicry refers to the autoimmune antibodies that may be manufactured by overactive white blood cells in response to a large foreign protein allergens that may have made it through ‘leaky’ intestinal walls into the blood stream.  See: Robert S. Fujinami, et. al., Molecular Mimicry, Bystander Activation, or Viral Persistence: Infections and Autoimmune Disease, Clin Microbiol Rev. 2006 Jan; 19(1): 80–94.

To skip to the point, egg white albumin is very similar to the albumin found in human blood. It is an essential protein within plasma and it helps maintain fluid balance between the blood plasma and extracellular fluid (too much extracellular fluid would be noticeable as edema – puffy ankles from excess fluid collecting outside of the cells and blood vessels.

After finding the research about egg white albumin on September 24, I eliminated egg white from my diet. My symptoms did get better fairly rapidly but I had tried a few strategies at the same time so it wasn’t clear whether stopping egg white had been necessary for the symptoms to improve or whether the other strategies I had tried may have been adequate on their own — so after feeling better for a couple weeks I decided to retry egg white to see if eliminating them had been an unnecessary strategy. Sadly I found that the day after trying egg white albumin again (in the form of baked chocolate chip cookies) my skin sores returned. I stopped eating egg white again. The sores aren’t as bad as they had been in September but calciphylaxis sores are termed necrotic wounds and necrosis means death and dead tissue in wounds can lead to gangrene and septic bloodsteam infections.

Open sores with oozing plasma that sticks to fabric is unpleasant and painful as well as being associated with an eight times increased risk of morbidity (which means death of the patient).

So I don’t have proof that my body set up autoimmune antibodies to albumin but I would rather stop eating egg white than continue having oozing sores – that is my choice, it is my body and I should have a right to take care of it to the best of my own ability rather than having to follow mainstream medical advice about a condition that is not well understood but is associated with an increased risk of death.

For more information about albumin antibodies and autoimmune disease see:

  • Rodríguez-Juan C, et. al., Increased levels of bovine serum albumin antibodies in patients with type 1 diabetes and celiac disease-related antibodies., J Pediatr Gastroenterol Nutr. 2003 Aug;37(2):132-5.
  • Excerpt from Abstract: “Although 46% of patients with autoimmune thyroiditis had positive results, the level detected (22.1 +/- 8.7 AU) was significantly lower than that recorded in patients with type 1 diabetes who had celiac disease antibodies (P = 0.04) and celiac patients (P = 0.04). Healthy volunteers showed no antibodies against bovine serum albumin.”  “Thirty-one percent of patients with diabetes yielded a positive result…” End stage renal disease is actually a significant risk for people with autoimmune Type 1 Diabetes because diabetes can cause an increased load on the kidneys from excess blood sugar and increased leaking of protein into the urine. Thirty-one percent of them might benefit from avoiding beef (bovine) or egg white albumin – but more research would probably be necessary before an ‘evidence-based’ recommendation could be made – except Rodriquez- Juan C, et al, did get a nice start on the project.

 

/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./

Magnesium deficiency can cause irritability, anxiety, and chronic degeneration

Inspirational quote: “Whenever I have a problem I sing, then I realize that my voice is a lot worse than my problem.” (and I feel better about my problem).

And then I take an Epsom salt bath to help treat irritability and the muscle cramps that can result from a magnesium deficiency. Some people may be more at risk for chronic magnesium deficiency due to intestinal malabsorption of the nutrient. Calcium may be preferentially absorbed within the intestines instead of magnesium.

Magnesium deficiency may affect levels of the brain neurotransmitter, acetylcholine, which may cause mood changes if it is not in balance with other more calming neurotransmitters. [Neurotransmitters and mood] The supplement choline is a precursor for acetylcholine and some users have noticed depressive affects with use of a high dose. [Acetylcholine and mood]

Taking the calcium supplements seemed to help reduce the elevated parathyroid hormone level but more recently they have seemed to cause a very rapid increase in muscle cramps and severe irritability. A magnesium bath every morning helped my mood change from rage to feeling like singing. It was kind of incredible to have my mood change so rapidly for reasons that were actually physical events — first I felt extremely angry shortly after swallowing a 100 mg calcium supplement and then I felt joyful after soaking in a bathtub for twenty minutes (soaking forty minutes or more can actually be dangerous because too elevated magnesium blood levels can cause an extreme slowing of the heart rate — don’t try that at home).

I haven’t had a psychiatrist tell me about the risks of magnesium deficiency to the mood or the benefits of an Epsom salt bath for the mood but I can hope, I can share information, and I can enjoy the benefits of Epsom salt baths while I wait. Eventually maybe psychiatry will recognize that the brain is connected to the body and that it is built out of nutrients, not out of pharmaceuticals.

Not surprising: People Reward Angry Men But Punish Angry Women, Study Suggests. Magnesium is effective and inexpensive and proton pump inhibitors are dangerous but patent protected. Get angry because the advice being sold as healthcare at an expensive profit may be causing harm over time. [PPIs and fracture risk, C difficile risk, FDA warning]

There may also be a gender bias regarding creativity, and provision of pain medication. There is also gender inequality in autoimmune disease — the majority of sufferers are female and the length of time between first onset of symptoms and diagnosis can be many years or even decades. Fifty million Americans are estimated to be suffering from some type of autoimmune disease (AD) and 75% of them are estimated to be female for reasons that are not clear at this time. [AARDA, Autoimmune disease in women]

“AARDA-conducted studies reveal a lack of trust in prescribing physicians, very likely fostered by the fact that the average AD patient may see more than four doctors in as many years before receiving a correct diagnosis. Also, more than 40 percent of AD patient report they have been told they were “too concerned about their health” or that they were hypochondriacs.”   –AARDA Launches “3-Second Adherence” Public Service Campaign.

I have been told that my physical symptoms are all psychosomatic so often that I really have no desire to go back  to anyone claiming to provide evidence based medicine. The evidence suggests to me that fifty million people are at risk from a system that doesn’t know what causes their condition or how to help them but who at the same time are willing to make random expensive guesses because after all they are just gambling with the patient’s time, money and long term health not their own.

Maybe eventually more health professionals will succumb to autoimmune illness themselves and then they will be more motivated to find more effective treatments that actually work on the underlying problems of nutrient deficiencies and metabolic imbalances. The body needs to be well nourished in order to make sialic acid for white blood cells to be able to properly identify damaged or improperly labeled cells such as the improperly labeled autoimmune antibodies and then to destroy the defective cells with a magnesium fueled enzymatic death (apoptosis).

I can hope, and I can share, and I can continue to try to take care of my own health.

/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./

 

Calciphylaxis may be caused by several different nutrient issues

Calciphylaxis usually includes an imbalance of calcium and phosphate and a deficiency of protein C may also be involved. Protein C deficiency may be caused by genetic or acquired reasons. Protein C is involved in blood clotting. Vascular and soft tissue calcification frequently is also present in patients with calciphylaxis symptoms. The mineral content of the calciphylaxis sores has been found to resemble the mineral balance of bone.

Imbalance in vitamin D and hormone D metabolism might affect magnesium levels in some unusual cases and may promote intestinal malabsorption of magnesium. However elevated magnesium is more typically found in patients who have calciphylaxis as a side effect of dialysis in end stage renal disease. The kidney disease causes an abnormal lack of hormone D because the kidneys in normal health are the only place where vitamin D is activated into the hormone D form.

These are copies of links that I was reading and Tweeted last night:

  1. Mineral substance of bone tissue and of experimental cutaneous calcinosis in rats: chemical analysis and ESR study.
  2. Calciphylaxis assoc w cholangiocarcinoma… /heparin & vit K didn’t help/ Thrombosis & protein C deficiency involved/
  3. Retrospective analysis of tissue plasminogen activator as an adjuvant treatment for calciphylaxis. /Ca P homeostasis/
  4. Calciphylaxis… “the reported median survival time is 2.6 months after diagnosis,”
  5. Aggressive calciphylaxis in end-stage renal disease… /assoc w vascular & soft tissue calcification/
  6. Calciphylaxis is a cutaneous process without involvement of internal organs… /assoc w vascular calcification/
  7. Net-like pattern of calcification on plain soft-tissue radiographs in patients with calciphylaxis. – PubMed – NCBI
  8. Is calciphylaxis best treated surgically or medically? – PubMed – NCBI
  9. Calciphylaxis in a morbidly obese woman w RA presenting w severe weight loss & vit D def. /pamidronate & D tx worked/
  10. Calciphylaxis in the absence of end-stage renal disease. – PubMed – NCBI /low vit D but tx surgery/
  11. The surgical management of renal hyperparathyroidism. – PubMed – NCBI
  12. Secondary hyperparathyroidism in children with chronic renal failure: pathogenesis and treatment. – PubMed – NCBI
  13. Vitamin D, parathyroid hormone, and acroosteolysis in systemic sclerosis. /low 25D w 2ndary hyperPTH in sunny climate

  14. Bone metabolism in celiac disease. – /following gluten free diet for 6 mo normalized 25D, calcium & PTH levels/

  15. Hypomagnesemia. Suppression of secondary hyperparathyroidism in chronic renal failure. – PubMed – NCBI

  16. Magnesium deficiency: possible role in osteoporosis associated with gluten-sensitive enteropathy. – PubMed – NCBI
  17. Recent data on magnesium & osteoporosis. “Mg def in post-menopausal osteoporosis, prob caused by Mg malabsorption.”
  18. [The significance of magnesium in medicine. (II) Disturbances of Mg metabolism & their treatment (author’s transl)].
  19. Metabolic disorders of cattle. /pellagra discussed, zinc, B6 Cu Mg def, malabsorption, iron overload can deplete B3/

Why do I care? because even though my symptoms are unusual I feel that I still deserve individualized health care. As a dietitian I was taught to look up information about any unusual diagnoses that patients might have and to provide individualized guidance if available or provide background information to help patients be able to make more informed choices about their treatment plan.

I also care because I think women deserve individualized healthcare even if we may get emotional or moody. Physical and mental illness symptoms can be related to underlying issues and simply medicating a symptom not only fails to address the underlying issue but it also fails to look for an underlying issue which can be life threatening if care is delayed in acute situations:

Whether male or female in a for-profit health industry being your own patient advocate or hiring a professional patient advocate may be life saving when navigating the increasingly complex health care system.

See the previous post for my own patient struggles with symptoms of hyperparathyroidism and calciphylaxis like sores: Secondary hyperparathyroidism and calciphylaxis symptoms; an update with lab values

/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./