Keeping Up with Research 

Ever been amazed by how some people always seem to know what’s going on with the latest advances in research and testing for their particular disorder? Want to be one of those people? You can spend everyday googling, going to pubmed and the NIH performing keyword searches and hoping you come up with the latest information, or you can just do what I do; have someone else perform your keyword searches and deliver your results to your inbox daily.

I use Stork. Stork is a very simple service that only requires a few moments to sign up for and complete the process of choosing the keywords you’d like them to sniff out. Simply follow this link and the very simple prompts to complete the process.

Not sure what keywords to choose? Consider what’s most important to you. If you suffer from fibromyalgia, POTS, and migraines, you might start out with keywords that look something like this:

  • Fibromyalgia
  • Chronic fatigue
  • Widespread pain
  • Pain syndromes
  • Postural Tachycardia Syndrome
  • Orthostatic Intolerance
  • Migraines
  • Migraines with Aura
  • Chronic head pain

Once you begin receiving your Stork reports, you may decide that some of these terms don’t return results that you’re interested in seeing. That’s okay. You can simply return to the site using the link above, login and adjust your keywords at anytime by adding and deleting anything you like.

As you can see from the list above, you can follow researchers as well as topics, which can be helpful when you know of a researcher that specializes in certain conditions or aspects of a condition and want to make certain you don’t miss the results of their work. There’s even more Stork can offer, so take a look around and get to know this powerful tool. Part of staying healthy is staying informed!


Dietary Changes to Improve Every Spoonie’s Health, Pt. 2

Or yourself!

When I wrote part 1 of this article and spoke about the known effects of glyphosate (aka roundup) in the body and the possible effects, I couldn’t find any studies to back up my suspicions that glyphosate and other herbicides and pesticides like it are contributing to the major uptick in autoimmune, connective tissue and neurodegenerative diseases in our world. Well, I just found it. This review of studies completed as far back as 2013 found a huge body of evidence that links the use of these chemicals to the growing rates of chronic disease. Check out the abstract below:

Where did I find this study? Among hundreds listed by Enter at your own risk, for you will likely be spending hours reading horror after horror of the effects on glyphosate and other herbicides and pesticides on many a living creature, appalled that you’ve ever been tricked into injesting the carcinogenic, neurodegenerative, mRNA decaying, infertility and birth defect causing stuff. There is literally not a system it doesn’t effect, including our precious microbiomes and DNA. But seriously, at least read through some of the study names. The list is an amazing indictment of the stuff.

I don’t care how little your SSDI check is, no one can afford the vost to their health to eat this stuff. If you aren’t carefully screening everything you purchase and put in your mouth, you are ingesting it, right down to your tap water. Not sure what’s in your tap water? Check EWG’s tap water database to find out. Then get the appropriate water filtration system to protect your health. I’d even question your bottled water as much if it’s purported to be unfiltered tap water purchsed from major municipal water sources like my own which happens to have umsafe levels of lead, hexavalent chromium, nitrates, trihalomethanes, and 1,4-dioxane, just to name a few. I’m not a fan of bottled water in the first place for all the waste, no matter what kind of container it comes in.

At the grocery, be sure to check labels and watch the news for companies who have been caught scamming the public by getting certified as organic and GMO-free who aren’t keeping up with those promises, primarily those resold under your grocer’s labels. The absolute worst offenders are wheat, corn and soy, but glyphosate is used on almost everything in conventional farming and conventional animal products too come with a heaping helping of glyphosate due to their feed.

To avoid it, buy certified organic produce and grass fed organic and heritage raised meats and make your own foods from whole ingredients whenever possible. Avoid eating at restaurants that don’t practice the same things that you do at home.

Eliminating these things from my diet helped me somewhat to feel better and reduce some of the neurological effects of these toxins, but I saw my biggest strides by detoxing and repairing tge damage. I did this by taking curcumin and glutathione for a year to cleanse the toxins and help heal the mitochondrial damage. I also believe taking acytl-l-carnitine helps some in this department, by slowing the decay of mRNA and allowing it fuel to aid in repair. I still continue to take the acytl-l-carnitine as I always see an uptick in my symptoms when I attempt to quit, so it does something more (perhaps helps keep the constant damage of untreated chiari or CCI at bay?), but I’m not chemist enough to understand exactly why it helps keep my nerve pain and migraines at bay. I just know it does.

Anyway, I covered most of this stuff in my first article here, but I wanted to present my new findings and emphasize the importance of getting this stuff out of your diet. I feel very strongly that diet contributes so much to the quality of life one can expect to have with an autoimmune illness and it should be everyone’s first line of defense. Once you begin eating right and repairing the damage, you might find just like me, that you have a real chance of living a semi-normal, comfortable life.

Neurontin/Lyrica Block Formation of Synapses in Brain


As I know MANY spoonies who are on Neurontin or Lyrica, I wanted to put this out the second I saw it (see below). I took it myself on two separate occasions and felt within a short period both times that the drugs were doing more harm than good for myself, even though they dulled a great deal of the pain I was feeling at the time. If you’re on these drugs, I would consult with your physician right away. Personally, I myself stick with holistic medications which heal and generate new healthy tissue. It works. You should check it out.


January 8, 2017 by Posted in: Uncategorized

BY: Byron J. Richards, Board Certified Clinical Nutritionist

Neurontin and its newer more potent version, Lyrica, are widely used for off-label indications that are an outright flagrant danger to the public. These blockbuster drugs were approved for use even though the FDA had no idea what they actually did in the brain. A shocking new study shows that they block the formation of new brain synapses1, drastically reducing the potential for rejuvenating brain plasticity – meaning that these drugs will cause brain decline faster than any substance known to mankind.

The problem of these drugs is compounded by their flagrant illegal marketing. Neurontin was approved by the FDA for epilepsy back in 1994. The drug underwent massive illegal off-label promotion that cost Warner-Lambert 430 million dollars (the very first big fine for off-label promotion). The drug is now owned by Pfizer. Pfizer also owns Lyrica, a super-potent version of Neurontin. It has been approved by the FDA for various types of pain and fibromyalgia. Lyrica is one of four drugs which a subsidiary of Pfizer illegally marketed, resulting in a $2.3 billion settlement against Pfizer.

Even though the marketing of these drugs has been heavily fined, they continue to rack up billions in sales from the off-label uses. Doctors use them for all manner of nerve issues because they are good at suppressing symptoms. However, such uses can no longer be justified because the actual mechanism of the drugs is finally understood and they are creating a significant long-term reduction in nerve health.

The researchers in the above study try to downplay the serious nature of the drugs by saying “adult neurons don’t form many new synapses.” That is simply not true. The new science is showing that brain health during aging relies on the formation of new synapses. Even these researchers managed to question the common use of these medications in pregnant women. How is a fetus supposed to make new nerve cells when the mother is taking a drug that blocks them?

These are the kind of situations the FDA should be all over. As usual, the FDA is sitting around pondering a suicide warning for Lyrica while its off-label uses include bi-polar disorder and migraine headaches. The FDA is likely to twiddle its thumbs for the next decade on the brain damage issue. Consumer beware.

NIH Releases FAQ on Hereditary Alpha Tryptasemia 

If you read the article I shared about the discovery of the new disease hereditary-a tryptasemia, then you’re probably wondering if you can go to the doctor to be tested for it. According to a FAQ released by the NIH, there is no commercially available test to confirm the multiple copy DNA strands which cause the disease. However, they have provided a guideline for tryptase levels, combined with the existence of common symptoms that still make diagnosis possible.

Several features that may be shared among those who have hereditary alpha tryptasemia syndrome are multiple symptoms affecting a variety of systems including (but not limited to) these:

  •     Chronic skin flushing, itching, or hives
  •     Bee sting allergy
  •     Dizziness and/or difficulty maintaining a normal pulse and blood pressure, sometimes diagnosed as dysautonomia or postural orthostatic tachycardia syndrome (POTS)
  •     Chronic head, back, and joint pain
  •     Hypermobile joints, scoliosis, retained primary teeth or other skeletal abnormalities, sometimes diagnosed as Ehlers-Danlos syndrome, Type III, hypermobile type
  •     GI disturbances including heartburn, IBS, and numerous food and drug reactions and intolerances
  •     Anxiety, depression, and/or behavioral disturbances.

Patients who suspect they may have hereditary alpha tryptasemia syndrome should first have a baseline blood tryptase test drawn by their doctor, if they haven’t already. It should not be drawn immediately after a major allergic reaction, as that can lead to an elevated tryptase for a different reason. A serum level greater than 10 ng/ml is suggestive of alpha tryptasemia, while a level lower than 8ng/ml makes this diagnosis far less likely.

While the document puts an emphasis on the fact that there are currently no developed treatments for hereditary-a tryptasemia, knowledge is always power in the right hands and could help you and your care providers come up with new ideas about your care. After all, hereditary-a tryptasemia is not the only thing that creates tryptase production issues, so perhaps a knowledgeable physician will have some bright ideas.

The full FAQ can be found here.

End GET trials on Children and Adults w/ ME/CFS


Be sure to stop over at #MEaction and sign their petition to stop Graded Exercise Therapy trials being performed in the UK on children and adults. In light of the analysis performed on the full data that was finally released, it is inhumane and completely without value to continue subjecting people with ME/CFS to such trials. Not only was the PACE trial itself a failure that was hidden for years, many subsequent studies have additionally shown poor or even harmful results stemming from this therapy.

If you are a citizen of the United Kingdom, sign the UK PARLIAMENT PETITION

If you are a citizen of any other country, sign the GLOBAL SUPPORT PETITION