This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!

Saturday, December 23, 2017

Medicinal Herbs, Plants, and Other Foods

The medicinal uses of plants, whether taken as herbs or foods, is something that has fascinated me and has made a significant difference in my family's health.  When doing a lot of dietary management to address certain health issues it can be easy to focus on removing foods from the diet, but adding healing herbs/foods into the diet can be just as powerful.  I've also seen others have amazing progress and healing from incorporating healing plant compounds in their diets.  Herbalism is not something I understand very well so I'll leave the explanations of the "hows" and "whys" to others.  Below are my notes for the plant compounds that we use (or have used) that have been helpful for us.


The Herarium- fee-based database of herbal medicine

Vitamin and Herb University

11 plants native Americans used for medicine

10 culinary herbs and their healing abilities

Tea Brewing Guide for Beginners

How to make herbal infused butter


Anti-fungal- Garlic, thyme, grapefruit seed extract (GSE), pau d'arco, caprylic acid (found in coconut)

Anti-inflammatory- Omega-3 oils, ginger, camel's milk, curcumin
21 Anti-histamine Foods That Fight Inflammation And Stabilize Mast-Cells

Anti-microbial- Manuka honey, oil of oregano (OOO), grapefruit seed extract, camel's milk, garlic, berberine (Oregon grape extract is a common source)

Anti-oxidants- Ellagic Acid (found in pomegranates, cranberries, red raspberries, strawberries, blackberries, walnuts, and pecans), sour cherry juice, pau d’arco, dried oregano, wild blueberry
Improved antioxidant and anti-inflammatory potential in mice consuming sour cherry juice (Prunus Cerasus cv. Maraska).

Anti-parasitic- Diatomaceous Earth, wormwood, black walnut shells

Anti-proliferative (anti-cancer)- Ellagic Acid (especially for prostate cancer), Ojibwa tea, Curcumin

Anti-viral- Lauric Acid (from coconut), camel's milk, green tea, olive leaf extract, wakame

Connective tissue support- Aloe juice, gelatinous broth

Mast Cell Stabilizers- Black seed (Nigella Sativa, aka black cumin seed), quercetin, green tea, mangosteen, rutin (found in buckwheat), fresh dill, raw red onion, capers


Aloe Vera- stimulates the production of collagen.

Arnica- helps heal sprains, bruises, and other soft-tissue injuries.  The flowers can be infused into oil, or combined with other ingredients to make a salve or lotion.  With the exception of homeopathic arnica, it should not be used internally or on open wounds.

Astragulus- Immune system support
Astragalus polysaccharides can regulate cytokine and P-glycoprotein expression in H22 tumor-bearing mice.

Berberine- Anti-microbial 

Black Seed (Nigella Sativa)- Mast cell stabilizer
The Remedy For Everything But Death

Burdock Root- contains butyric acid and lauric acid.

Chaga Mushroom- Immune support (Chaga mushrooms grow on birch trees so people with a birch tree allergy and/or Oral Allergy Syndrome associated with birch trees may want to be cautious with this one)

Chamomile- has calming and relaxing properties

Chanca Piedra- Supposedly breaks up oxalate stones.

Chili powder- reduces pain.  The sensation of pain depletes a chemical called substance P, and when substance P is used up, the ongoing tissue damage of arthritis, shingles, cluster headaches, fibromyalgia, or lower back injury does not result in pain.

Chrysanthemum- Supports eye health. Traditional Chinese Medicine teaches that the herb corrects imbalances in liver and kidney function that cause blurred vision, dizziness, dry red eyes, excessive tearing, or spots in front of the eyes. Chrysanthemum also treats headaches accompanying infection, carbuncles, furuncles, and vertigo.

Cod Liver Oil (CLO)- source of healthy oils as well as vitamin A and vitamin D.

Curcumin, Compound In Turmeric, Found To Impair Fear Memories And Ease PTSD Symptoms
Epigenetic changes induced by curcumin and other natural compounds. 
Anti-inflammatory and anti-oxidative effect of curcumin in connective tissue type mast cell


Elderberries- Immune Support.  Extensive research show that elder stop the production of hormone-like cytokines that direct a class of white blood cells known as neutrophils to cause inflammation, especially in influenza and arthritis. On the other hand, elder increases the production non-inflammatory infection-fighting cytokines as much as 10 fold.

Ginger- anti-inflammatory, aids in digestion, can reduce nausea

Green Tea (extract)- Immune support, anti-viral, mast cell support
Mast cell stabilizing and anti-anaphylactic activity of aqueous extract of green tea (Camellia sinensis)

Gymnemma- helps control blood sugar levels
Research treats the fungus among us with nontoxic medicinal compound

Lactuca Virosa (wild lettuce)- pain reduction.
Pain relief, said to be as powerful as morphine

Manuka Honey- anti-microbial
Manuka honey can help treat drug-resistant bacteria

Milk Thistle- supports detoxification in the liver
Randomized controlled trial of silymarin treatment inpatients with cirrhosis of the liver.

Olive Leaf Extract- anti-microbial
Olive leaf extract protects against lead-induced brain damage

Pau D’Arco- is an immune stimulant and helps keep the gastrointestinal system healthy, making it less hospitable to yeast, parasitic, bacterial, fungal and viral infections. Studies have shown it to be anti-inflammatory and anti-oxidant, as well.

Quercetin- mast cell stabilizer
Quercetin attenuates neuronal death against aluminum-induced neurodegeneration in the rat hippocampus.

Bioavailability of Quercetin for certain foods

Reishi mushroom (Ganoderma lucidum)- reduces insulin resistance
Ganoderma lucidum reduces obesity in mice by modulating the composition of the gut microbiota

Low dose resveratrol ameliorates mitochondrial respiratory dysfunction and enhances cellular reprogramming

Rhodiola- adrenal support.  Russian researchers have found that extracts of rhodiola or Panax ginseng act in the same way as the drug Aricept in supporting cognitive function. In the brain stem, rhodiola compounds stimulate the release dopamine, norepinephrine, and serotonin into ascending pathways that activate the cerebral cortex, stimulating analyzing, evaluating, calculating, and planning functions. The stimulant effect then moves to the prefrontal cortex, where it contributes to memory functions including encoding, sorting, storage, and retrieval.

Red Tea- Contains anti-oxidants, vitamin C, calcium, potassium, magnesium, iron, zinc, sodium, copper, and manganese.

Rosehips- excellent source of vitamin C

St John's Wort-
Medical Attributes of St. John’s Wort (Hypericum perforatum)


Stinging Nettle- helps to clear excess histamine from the body, good for reducing allergic symptoms.

Sulforaphane (Extract from broccoli sprouts)-
Chemical Derived from Broccoli Sprouts Shows Promise in Treating Autism
"Sulforaphane, which showed negligible toxicity, was selected because it upregulates genes that protect aerobic cells against oxidative stress, inflammation, and DNA-damage, all of which are prominent and possibly mechanistic characteristics of ASD."


Wakame- The fucoidan sugars in wakame are antiviral against cytomegalovirus and herpes; a study published in BMC Complementary and Alternative Medicine reported that taking an extract of wakame prevented and reduced the severity of recurrent herpes outbreaks.

Wild Blueberry- high content of the amino acid tyrosine, which is the precursor to dopamine.


NeuroProtek- Mast cell support, especially in the brain
Ojibwa Tea- Immune Support
Speak (this is a supplement that is a combination of oils that supports brain function, especially as relates to speech)

A case series of a luteolin formulation (NeuroProtek®) in children with autism spectrum disorders
This article discusses how these two flavonoids protect the brain from the effects of inflammation, especially that caused by mast cell reactions. "Luteolin is found in parsley, thyme, peppermint, basil, celery and artichoke. Quercetin is commonly found in capers, whortleberries, apples and red onions. Both also are sold as supplements in health food stores nationwide."

Saturday, November 25, 2017

Recipe- Warm Arugula Artichoke Dip

This recipe is modified from this one on the blog 40 Aprons

Warm Arugula Artichoke Dip


1 T cooking fat (bacon fat works well)
2 cloves of garlic, minced (smoked or roasted garlic is especially good)
I large box or two bags of arugula, wilted and with the water squeezed out
1 14 oz. can of artichoke hearts, chopped into chunks
3 green onions, sliced
1 c. yogurt, non-dairy yogurt, or coconut milk (full fat or coconut cream)
½ c. mayonnaise
¼ c. tahini
¼ c. milk substitute (hemp works well)
1 T fresh lemon juice
Several pinches each of turmeric and cayenne
½ tsp onion powder
½ tsp garlic powder
Salt and Pepper to taste
Smoked paprika to sprinkle on top just before serving
2 slices of bacon, cooked and crumbled (optional)


Heat oil in skillet and sauté the garlic for about 30 seconds until it begins to soften and smell good.

Add the arugula and artichoke hearts, stir and continue to sauté until well warmed and the excess liquid has evaporated.

Add in remaining ingredients and continue stirring over moderate heat until very well combined and nicely warmed.  Sprinkle top with smoked paprika and optional crumbled bacon.

The dip can served as is, or some or all of it can be pureed to make it creamier.  If you can have cheese melt a layer of cheese on the top under the broiler.

Saturday, September 2, 2017

Enteral and Parenteral Nutrition (TPN)

For a number of reasons, there are some people who are not able to eat food at all or who have very limited numbers of safe foods (often fewer than 10), which are not enough to provide adequate nutrition or calories.  Food can be replaced by either a formula (which is either consumed orally or delivered through a feeding tube) or TPN, which is when nutrition and calories are delivered intravenously through a Central Venous Catheter (also know as a central line) which bypasses the GI tract altogether.  Formula is usually tried first while TPN is usually a treatment of last resort.  This is because while there can be complications of having a feeding tube, TPN is associated with serious risks and is hard to maintain.  It is used when there just aren't other options.  A patient may need TPN for just a short time, or it may be a lifelong need.

Some people need these options due to conditions they are born with, while for many others the need arises as a disease progresses or after some types of surgeries and treatments (such as surgical removal of part of the intestines).  When this occurs due to "mechanical" problems with the GI tract (such as Short Bowel Syndrome) there are many options for formula and some people are able to still use food as long as it is blenderized into a liquid and given through a feeding tube.  Loss of tolerance to all (or nearly all) food is not uncommon in people with allergy-related diseases such as EGIDs (Eosinophilic Gastrointestinal Diseases) or Mast Cell Diseases.  These people need to use a special kind of formula known as Elemental formula (also called "the elemental diet") which is a medical food substitute composed entirely of pre-digested, broken down nutrients so that the GI system does not need to process the formula.  These formulas contain only amino acids, which are the building blocks of protein, but contain no actual protein.  There is some confusion, even among specialists, that peptide-based formulas either are elemental or are appropriate substitutes for elemental formula which is generally NOT true.  Peptides are strings of amino acids rather than individual amino acids and can still be allergenic. This is done because it is believed in conventional medicine that all allergens are proteins, so it makes sense to remove all protein from the diet of someone who has a severe allergic disease (in these cases the protein is replaced with the amino acids themselves, which are the building blocks of protein, so the patient still receives adequate nutrition).  In reality many people with this level of food intolerance also react to oils and other triggers that are not proteins so may not even tolerate elemental formula.

Some resources to help you get started:

Help! G-tubes, J-tubes, TPN - Where do we begin?  From MitoAction
FAQs about TPN from The Children's Hospital of Pittsburgh
Total Parenteral Nutrition (TPN) From G-Pact (Gastroparesis Patient Association)
Intravenous Feeding From the Merck Manual
Artificial Nutrition Support in Intestinal Failure: Principles and Practice of Parenteral Feeding
The Oley Foundation YouTube channel

The Oley Foundation is the primary support and advocacy group for people who use Enteral or Parenteral nutrition (tube feeding or TPN).  They have recently discontinued their toll-free numbers. Here are the new numbers to contact them:

To reach the Oley office:
Call (518) 262-5079

The office recently moved to a new location:

Oley Foundation Offices
Albany Medical Center, MC 28
99 Delaware Avenue
Delmar, NY 12054
To access the Equipment Supply Exchange Program:
Call (518) 262-2230   (Messages are typically responded to within two business days).
or visit

Accessing and paying for elemental formula:

Medical foods and insurance coverage (great place to start, lots of information and examples)
State insurance mandates for covering the cost of elemental formula

Additional questions and considerations regarding enteral feeding and TPN:

Friday, September 1, 2017

ASIA (Autoimmune Syndrome Induced by Adjuvants)

An adjuvant is a substance that has the effect of stimulating a heightened immune response to a product that contains it.  In some cases adjuvants are added intentionally, such as the case with vaccines (not all vaccines contain adjuvants) with the intent of causing a stronger and more robust immune response to the antigen (the organism that the vaccine is meant to protect against).  In other cases, such as with silicone in breast implants, the adjuvant properties of a substance (in this case silicone) is not the reason that the substance is used but rather an unintended consequence.

"ASIA" Autoimmune/Inflammatory Syndrome Induced by Adjuvants
J Autoimmun. 2011 Feb;36(1):4-8. Epub 2010 Aug 13.
(adjuvants are vaccine ingredients meant to provoke an immune response)
"In recent years, four conditions: siliconosis, the Gulf war syndrome (GWS), the macrophagic myofasciitis syndrome (MMF) and post-vaccination phenomena were linked with previous exposure to an adjuvant. Furthermore, these four diseases share a similar complex of signs and symptoms which further support a common denominator.Thus, we review herein the current data regarding the role of adjuvants in the pathogenesis of immune mediated diseases as well as the amassed data regarding each of these four conditions. Relating to the current knowledge we would like to suggest to include these comparable conditions under a common syndrome entitled ASIA, “Autoimmune (Auto-inflammatory) Syndrome Induced by Adjuvants”.

The spectrum of ASIA: ‘Autoimmune (Auto-inflammatory) Syndrome induced by Adjuvants’
Lupus February 2012 vol. 21 no. 2 118-120
"A Saudi Sheikh, who suffered at the age of 27 from joints pains, rash and serological evidence of anti-Ro antibodies, was diagnosed with probable systemic lupus erythematosus (SLE) at that time. He was treated with Plaquenil for a year, but as no signs of SLE were apparent, treatment was stopped and he remained disease free for the next 12 years. At the age of 39 years, 2 weeks after immunization with the flu vaccine, his disease reemerged. This time he presented with severe arthritis and pericarditis.

This patient’s story illustrates the acceleration of an autoimmune or immune-mediated condition following exposure to external stimuli. During the past year a new syndrome was introduced and termed ASIA, ‘Autoimmune (Auto-inflammatory) Syndrome induced by Adjuvants’. The use of medical adjuvants has become common practice and substances such as aluminum adjuvant are added to most human and animal vaccines. The adjuvant effect has been recognized for years, and is broadly utilized to enhance desired antigen-specific immune responses. This effect is accomplished via mechanisms that impinge on both the innate and adaptive immune systems. Formerly, adjuvants were thought to pose little or no independent threat. Alas, studies of animal models and humans demonstrated the ability of some of them to inflict autoimmunity and immune-mediated diseases by themselves."

ASIA: A New Way to Put the Puzzle Together
The Rheumatologist, June 2011
"The worldwide prevalence of autoimmune and auto-inflammatory diseases is determined by the interplay of genetic and environmental factors. The latter factors include infections, toxins, drugs, and others agents that can be linked by the occurrence of immune-mediated diseases as well as the nature of the clinical manifestations and their severity. The mechanisms by which these environmental factors trigger autoimmunity are diverse but, as a group, they may incorporate an adjuvant effect. An adjuvant is a substance that enhances the activation of the immune system, both the innate and the adoptive ones.  For years, adjuvants have been used by physicians and scientists to boost a desirable immune response, either in experimental models or during medical interventions, most classically, immunization.. 

 Despite their ability to boost immune responses, in the past, adjuvants were generally considered to be inert materials that posed little or no independent threat to the host. Alas, animal studies as well as reports of human diseases have clearly demonstrated the ability of adjuvants to inflict diseases by themselves.."

On vaccine's adjuvants and autoimmunity: Current evidence and future perspectives.
Autoimmun Rev. 2015 Oct;14(10):880-8
"In 2011 a new syndrome termed 'ASIA Autoimmune/Inflammatory Syndrome Induced by Adjuvants' was defined pointing to summarize for the first time the spectrum of immune-mediated diseases triggered by an adjuvant stimulus such as chronic exposure to silicone, tetramethylpentadecane, pristane, aluminum and other adjuvants, as well as infectious components, that also may have an adjuvant effect. All these environmental factors have been found to induce autoimmunity by themselves both in animal models and in humans: for instance, silicone was associated with siliconosis, aluminum hydroxide with post-vaccination phenomena and macrophagic myofasciitis syndrome. Several mechanisms have been hypothesized to be involved in the onset of adjuvant-induced autoimmunity; a genetic favorable background plays a key role in the appearance on such vaccine-related diseases and also justifies the rarity of these phenomena. This paper will focus on protean facets which are part of ASIA, focusing on the roles and mechanisms of action of different adjuvants which lead to the autoimmune/inflammatory response. The data herein illustrate the critical role of environmental factors in the induction of autoimmunity."

Autoimmunity following hepatitis B vaccine as part of the spectrum of 'Autoimmune (Auto-inflammatory) Syndrome induced by Adjuvants' (ASIA): analysis of 93 cases.
Lupus. 2012 Feb;21(2):146-52
"Common clinical characteristics were observed among 93 patients diagnosed with immune-mediated conditions post-HBVv, suggesting a common denominator in these diseases. In addition, risk factors such as history of autoimmune diseases and the appearance of adverse event(s) during immunization may serve to predict the risk of post-immunization diseases. The ASIA criteria were found to be very useful among adults with post-vaccination events. The application of the ASIA criteria to pediatric populations requires further study."

Mechanisms of Aluminum Adjuvant Toxicity And Autoimmunity in Pediatric Populations
Lupus February 2012 vol. 21 no. 2 223-230
"Immune challenges during early development, including those vaccine-induced, can lead to permanent detrimental alterations of the brain and immune function. Experimental evidence also shows that simultaneous administration of as little as two to three immune adjuvants can overcome genetic resistance to autoimmunity. In some developed countries, by the time children are 4 to 6 years old, they will have received a total of 126 antigenic compounds along with high amounts of aluminum (Al) adjuvants through routine vaccinations. According to the US Food and Drug Administration, safety assessments for vaccines have often not included appropriate toxicity studies because vaccines have not been viewed as inherently toxic. Taken together, these observations raise plausible concerns about the overall safety of current childhood vaccination programs. When assessing adjuvant toxicity in children, several key points ought to be considered: (i) infants and children should not be viewed as “small adults” with regard to toxicological risk as their unique physiology makes them much more vulnerable to toxic insults; (ii) in adult humans Al vaccine adjuvants have been linked to a variety of serious autoimmune and inflammatory conditions (i.e., “ASIA”), yet children are regularly exposed to much higher amounts of Al from vaccines than adults; (iii) it is often assumed that peripheral immune responses do not affect brain function. However, it is now clearly established that there is a bidirectional neuro-immune cross-talk that plays crucial roles in immunoregulation as well as brain function. In turn, perturbations of the neuro-immune axis have been demonstrated in many autoimmune diseases encompassed in “ASIA” and are thought to be driven by a hyperactive immune response; and (iv) the same components of the neuro-immune axis that play key roles in brain development and immune function are heavily targeted by Al adjuvants. In summary, research evidence shows that increasing concerns about current vaccination practices may indeed be warranted. Because children may be most at risk of vaccine-induced complications, a rigorous evaluation of the vaccine-related adverse health impacts in the pediatric population is urgently needed."

The common immunogenic etiology of chronic fatigue syndrome: from infections to vaccines via adjuvants to the ASIA syndrome.
Infect Dis Clin North Am. 2011 Dec;25(4):851-63
"Studies have examined and hypothesized about the possible biomedical and epidemiologic characteristics of the disease, including genetic predisposition, infections, endocrine abnormalities, and immune dysfunction and psychological and psychosocial factors. Recently, the ASIA (autoimmune/inflammatory syndrome induced by adjuvants) syndrome was recognized, indicating the possible contribution of adjuvants and vaccines to the development of autoimmunity."

Immunol Res. 2014 Dec;60(2-3):376-83
"This study suggests that in some cases CFS and FM can be temporally related to immunization, as part of ASIA syndrome. The appearance of adverse event during immunization, the presence of autoimmune susceptibility and higher titers of autoantibodies all can be suggested as risk factors. ASIA criteria were fulfilled in all patients eluding the plausible link between ASIA and CFS/FM."

Chronic fatigue syndrome with autoantibodies--the result of an augmented adjuvant effect of hepatitis-B vaccine and silicone implant.
Autoimmun Rev. 2008 Oct;8(1):52-5
"Our patient illness started following hepatitis-B vaccine, suggesting that it was caused or accelerated by vaccination. In parallel to vaccination our patient suffered from breast injury, which might represent the time of silicone leak. The exposure to the adjuvant, silicone, might have augmented her immune response to the vaccine. To the best of our knowledge this is the first case of combined adverse effect to vaccine and silicone. Vaccine safety in individuals with silicone implants requires further studies."

Autoimmunity induced by adjuvant hydrocarbon oil components of vaccine
Biomedicine and Pharmacotherapy, Volume 58, Issue 5, June 2004, Pages 325–337
"We have reported that a single intraperitoneal injection of the adjuvant oils pristane, IFA or squalene induces lupus-related autoantibodies to nRNP/Sm and -Su in non-autoimmune BALB/c mice. Induction of these autoantibodies appeared to be associated with the hydrocarbon’s ability to induce IL-12, IL-6, and TNF-α, suggesting a relationship with hydrocarbon’s adjuvanticity. Whether this is relevant in human vaccination is a difficult issue due to the complex effects of vaccines and the fact that immunotoxicological effects vary depending on species, route, dose, and duration of administration. Nevertheless, the potential of adjuvant hydrocarbon oils to induce autoimmunity has implications in the use of oil adjuvants in human and veterinary vaccines as well as basic research."

Rupture of silicone gel breast implants and symptoms of pain and fatigue.
J Rheumatol. 2003 Oct;30(10):2263-7.
"Women with silicone breast implants often report severe pain and chronic fatigue. Rupture of the implant is associated with an increase in symptoms of pain and chronic fatigue."

When APS (Hughes syndrome) met the autoimmune/inflammatory syndrome induced by adjuvants (ASIA)
Lupus June 2012 vol.21 no. 7 711-714
(I highly recommend reading this article in it's entirety.  It's not long and it discusses many of the mechanisms involved how vaccination affects the immune system)
"Autoimmune diseases have been reported to associate or to follow a diverse list of vaccinations.  This is not surprising since autoimmune diseases are known to be caused by infections. –  On the one hand, one can assume that vaccine may lead to autoimmunity via the infection agent ingredient being recombinant, weakened, or synthetic. Such mechanisms as molecular mimicry and polyclonal activation may be involved. Yet, recently a new syndrome was defined: ASIA (autoimmune syndrome induced by adjuvants), eluding to the important role of the adjuvant ingredients in the vaccine. This syndrome encompasses all the auto-reactive conditions associated with vaccines, but also those emerging following silicone implants which ruptured and invaded neighboring tissues. In addition, the syndrome may include clinical conditions such as the Gulf syndrome chronic fatigue syndrome and the sick building syndrome. The common denominator to all of the above clinical circumstances is the existence of an adjuvant which chronically stimulates the immune system."

"Several case reports showed the possibility of triggering antiphospholipid syndrome following tetanus vaccination"

"Tarjan et al found that repeated influenza vaccination in clinically stable SLE patients with low disease activity may result in increased production of anti-β2GPI antibodies, and therefore may increase the risk of thrombotic manifestations."

"Although there are rare cases of elevated levels of circulating anti-β2GPI Abs upon post-vaccination, one has to keep in mind that the memory cells are waiting for a second hit. This may come in time, by molecular mimicry or non-specifically by bystander activation or by adjuvant triggering, the common denominator of most vaccines during lifetime, and induce the development of the clinical picture of APS in genetically susceptible individuals. Therefore, these all strengthen the importance of ASIA and should be kept in mind during clinical work and research."

Teriparatide Treatnebt for Osteoporosis (Forteo and Tymlos)

Teriparatide is a relatively new medication for the treatment of osteoporosis.  It is recombinant human parathyroid hormone, which is a synthetic analog for human parathyroid hormone. It is the first medicine to treat osteoporosis by stimulating new bone growth.  Under the brand name Forteo it is targeted towards people with osteoporosis resulting from long-term glucocorticoid steroid use, such as prednisone.  Under the brand name Tymlos it is targeted at treating osteoporosis in post-menopausal women.  Both drugs are administered as daily subcutaneous injections from a pre-loaded injection device (like an epi-pen but with multiple doses).  Both versions of the drug have a black box warning that they increase the risk of osteosarcoma (a kind of bone cancer) and further indicates that a patient should not use either of these drugs for more than a combined two years (two year maximum for both drugs together, not for each one separately).  The other significant side effects include elevated levels of calcium in the blood (called hypercalcemia) and the onset or worsening of Orthostatic Intolerance (a form of autonomic dysfunction in which a person has difficulty regulating their blood pressure when standing) so the drugs should be administered, at least at first, when the person is sitting or lying down.

The active ingredient is essentially the same (teriparatide for Forteo and abaloparatide for Tymlos) but the formulations are not exactly the same. Osteoporosis and spinal fracture is apparently more common among mast cell disease patients than the normal population, so the inactive ingredients may be more important to consider.

Inactive ingredients in Forteo: glacial acetic acid, sodium acetate (anhydrous), mannitol, metacresol, and water for injection. In addition, hydrochloric acid solution 10% and/or sodium hydroxide solution 10% may have been added to adjust the product to pH 4.

Inactive ingredients in Tymlos (per disposable, pre-loaded injection pen containing 30 doses): 5 mg phenol, 5.08 mg sodium acetate trihydrate, 6.38 mg acetic acid, and water for injection.  (From the package insert for Tymlos)

Forteo Medication Guide (from FDA)

Info from Medscape

Teriparatide in the management of osteoporosis
"fractures of the spine result in significant morbidity and are also associated with increased mortality compared with individuals without a fracture...  It is the first osteoporosis treatment that leads to the formation of new bone with architecture similar to normal bone. Intense efforts have been made to understand the effect of teriparatide on antiresorptive therapy and vice versa. Although these relationships are not completely understood, the results of recent studies allow clinicians to begin to optimize therapeutic gains in bone mineral density and improve anti-fracture efficacy."

Vertebral fractures account for approximately 45% of osteoporosis-related fractures, and have significant immediate and long-term complications such as pain, respiratory complications, loss of height, and loss of quality of life. Of those presenting with vertebral fractures, the risk of new vertebral and non-vertebral fracture increases 4- to 5-fold

Moreover, there is mounting evidence that vertebral fractures also increase mortality within 1 year of the fracture and this excess risk increases with time

Although low bone mineral density (BMD) is highly predictive of an increased risk of future fracture (WHO 1994), multiple factors are involved in estimating an individual’s risk including age, race, previous fracture, glucocorticoid use, gender, history of falling, hyperparathyroidism, and malabsorption syndromes. 

Saturday, August 26, 2017

Non-Biomed Treatment Modalities

Most of the information on this blog comes from scientific sources and/or regards an approach related to conventional medicine known as biomed in the autism world (and other contexts as well), but is also known as functional medicine, integrative medicine, or orthomolecular medicine.  As conventional medicine (allopathic medicine, what many people refer to as "western medicine") goes through a paradigm shift (more on that later) it is beginning to take on some of the same techniques and methods of biomed.  Many people have found a lot of healing and benefit from some of the other treatment approaches available, such as homeopathy, herbal medicine, essential oils, energetic bodywork, and more.  Below are links to some of the resources that I have found helpful or that have been recommended to me by trusted friends but that I may not have had a chance to try yet.

Gerson Therapy:

Gerson Therapy is primarily a food-based therapeutic approach which uses a lot of juicing of fruits and vegetables.  It is most commonly used for cancer but has been used (supposedly successfully) for many other health conditions as well.


The basics of homeopathy are explained here on the site for John Melnychuk, a homeopathic doctor that my family has seen and really liked.  He specializes in treating autism and related conditions.

The National Center for Homeopathy has a lot of general information about how to use homeopathy and the theory behind it, as well as a database that helps you find a remedy based on a person's symptoms.  They also have other membership-based resources.

Interhomeopathy is a site with many resources including case studies, a list of where to get remedies, journal articles, and more.

The HomeopathyPlus site has a database of remedies so you can look up what each one does.

The Homeopathy Research Institute is working to understand the mechanism by which homeopathic medicines work, including looking at some new research into water and its structure that seems related.  I've come across this potential explanation and it is very intriguing.  They are also researching the effectiveness of homeopathy in treating some specific conditions.  A listing of their published research can be found here.

I have another post here that gives information for specific remedies and conditions treated.

The best studies show individualised homeopathic treatment has beneficial effects beyond placebo

Homeopathy is effective according to Swiss federal report

Homeopathic remedies for radiation and radiological procedures (such as x-rays, CT scans)

Treatment of acute childhood diarrhea with homeopathic medicine: a randomized clinical trial in Nicaragua.
Pediatrics. 1994 May;93(5):719-25.
"The statistically significant decrease in the duration of diarrhea in the treatment group suggests that homeopathic treatment might be useful in acute childhood diarrhea. Further study of this treatment deserves consideration."


Gemmotherapy is a treatment for detoxification that uses extracts taken from young plants and plant buds.  It is unclear to me if this is a form of homeopathy or more of an herbal supplement.

Energy-Based Methods:

Quantum Touch is an energy-based modality that works to heal

Reiki Really Works: A Groundbreaking Scientific Study


Healthcare's growing uses for virtual reality (this seems especially promising for treating pain)

Tuesday, August 15, 2017

The Book Shelf

This is a collection of books that I have found helpful.  I don't agree with everything in each one, but all of them had something very important to add to mu understanding of what was happening to our health and what I could do about it.  If reading a lot of books is daunting (due to time constraints, symptoms, etc) many of these are available as audiobooks which can be listened to while doing other tasks.

General Health:

Nutrition and Physical Degeneration 8th Edition by Weston A. Price

Cooking, Food, and Special Diet:

Know Your Fats: The Complete Primer for Understanding the Nutrition of Fats, Oils, and Cholesterol by Mary Enig, Ph.D.

The Dorito Effect by Mark Schatzker

Nourishing Hope, Nutrition Intervention for Healing our Children, by Julie Matthews

Breaking the Vicious Cycle by Elaine Gottschall

Gut and Psychology Syndrome by Natasha Campbell-McBride

GAPS Guide: Simple Steps to Heal Bowels, Body and Brain by Baden Lashkov

Special Diets for Special Kids vol. 1 and vol. 2  by Lisa Lewis, Ph.D.

Nourishing Traditions by Sally Fallon

Wild Fermentation by Sandor Katz

The Wahls Protocol: A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principles by Terry Wahls, MD and

Grain Brain: The Surprising Truth about Wheat, Carbs, and Sugar--Your Brain's Silent Killers
by David Perlmutter

Neurology, the Brain, and Mental Health:

Minding My Mitochondria 2nd Edition: How I overcame secondary progressive multiple sclerosis (MS) and got out of my wheelchair.  by Terry Wahls, MD

My Stroke of Insight by Jill Bolte Taylor

Waking the Tiger: Healing Trauma by Peter Levine

Why Isn't My Brain Working?
by Datis Kharrazian, DHSc, DC, MS, MNeuroSci, FAACP, DACBN, DABCN, DIBAK, CNS


Biological Treatments for Autism and PDD - 2008 3rd Edition by William Shaw, Ph.D.

Autism:Beyond the Basics by William Shaw, Ph.D.

Children with Starving Brains by Jaquelyn McCandless

Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders    by Kenneth Bock, Cameron Stauth

Changing the Course of Autism by Bryan Jepson M.D., Jane Johnson

The Sound of Falling Snow: Stories of Recovery from Autism and Related Disorders by Annabel Stehli

The Impossible Cure by Amy Lansky

Sensory Processing:

The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorderby Carol Stock Kranowitz

The Out-of-Sync Child Has Fun: Activities for Kids With Sensory Processing Disorder
by Carol Stock Kranowitz

Other Disorders:

Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal: A Revolutionary Breakthrough In Understanding Hashimoto's Disease and Hypothyroidism
by Datis Kharrazian

Gut: The Inside Story of Our Body's Most Underrated Organ (Revised Edition) By Giulia Enders
Heavy Metal Chelation:

Amalgam Illness Diagnosis and Treatment A book on how to cure mercury poisoning
by Andrew Hall Cutler, PhD, PE

Hair Test Interpretation: Finding Hidden Toxicities (companion book to Amalgam Illness)
by Andrew Hall Cutler, PhD, PE

The Medical System:

Birth as an American Rite of Passage by Robbie E. Davis-Floyd


EVIDENCE OF HARM: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy
by David Kirby

Vaccine Epidemic by Louise Kuo Habakus and Mary Holland
"How Corporate Greed, Biased Science, and Coercive Government Threaten Our Human Rights, Our Health, and Our Children" (this book explores the ethics of vaccination)

Callous Disregard Autism and Vaccines: The Truth Behind a Tragedy by Andrew Wakefield