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From Our Readers – Comments & Suggestions 06-22-11

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When Your ‘Shingles’ Might Really Be Gluten Problem

I am going gluten free and finding it is so helping my CFIDS & FM symptoms. But I kept wondering why I have these shingles recurring outbreaks, which a doctor here confirmed. He said even if small, they get activated and follow the root of the nerve up.
BUT then I was doing some online research yesterday, and found out that people with celiac disease and gluten intolerance can get Dermatitis herpetiformis – which they say is not herpes related, only looks like it (shingles is caused by the herpes virus that causes chicken pox and can reactivate in the form of shingles) – and is due to gluten intolerance!

[“Dermatitis herpetiformis (DH) is an autoimmune blistering disorder associated with a gluten-sensitive enteropathy (GSE).”]

I was amazed, had never heard of it, but thought with so many people with fibro and CFIDS who are also gluten intolerant or have celiac, it might be interesting for them to know about this if it’s happening to them! So thought I’d share the info. – S


An MCS Patient Blogs on His Experience with Amygdala Retraining

Guest blogger Erik Schimek designs custom cabinets and furniture, and became ill several years ago due to solvent exposure. He posted this article on The Canary Report [“Can Gupta Amygdala Retraining Benefit People with MCS?”] He explains how Ashok Gupta believes the Amygdala Retraining theory might help MCS, and how he believes it is helping him (some “real, honest to goodness improvement in quality of life”).

He says, “First, let me preface this by saying that I’m not trying to defend the specifics of Gupta Amygdala Retraining, nor am I looking for an argument. I’m writing this in the hopes that others may find it helpful.”] – A

The Canary Report (www.thecanaryreport.org)


New Hampshire Adds to List of States Legalizing Long Term Lyme Rx

On Friday, June 17 it was announced that New Hampshire has legalized physician treatment of chronic Lyme disease (HB295). The primary sponsor, Rep Gary Daniels, noted that New Hampshire has the highest incidence of Lyme disease per capita in the country.

To quote Rep Daniels, “There can be such a thing as chronic Lyme disease and it can be treatable with long-term antibiotics.” He says he had been asked to bring the issue out into the open by a friend who suffered from Lyme disease for five years before she was diagnosed. [See “N.H. doctors can now treat Lyme disease with long-term antibiotics.”] – L


Grassroots Help Needed to Avoid Psychiatric Diagnosis for ME/CFS & FM

Karen Lee Richards has written a blog clearly explaining the danger we face in the US of having symptoms of FM, ME/CFS, and other illnesses “for which there is no organic explanation” diagnosed as psychiatric disorders. The problem is a proposed new diagnostic DSM code for a mental disorder to be called “Complex Somatic Symptom Disorder” – and the deadline for protests against this code that she mentions has been extended to July 15. [See “Prevent Chronic Pain Conditions from Being Classified as Psychiatric Disorders: Action Alert”] – G


My Breathing Problems with ME/CFS

Re: “Disordered Breathing in ME/CFS & Fibromyalgia – Symptoms and Recovery”

My breathing problems feel like “air hunger” (which I’ve read is common with CFS), in which I feel like I can’t get a sufficient breath of air; like I can’t get that satisfied deep breath or yawn. It almost feels like a mild panic attack. Over the years, I have come to find out that a B vitamin deficiency caused my breathing problems. I take a B complex now, and have no more problems with breathing.

Also what helped me are deep breathing exercises. I was taught at Uchee Pines Health Institute [Alabama] to inhale for four seconds, hold it for seven seconds, and then breathe out for nine seconds. This has a refreshing feeling benefit also. Before I learned about the B vitamins, I tried probiotics, which seemed to help some too. There’s nothing more frustrating than trying to get enough air, and feeling like you can’t! – D


Florida International University Will House First NEI Center™

Seed money contributed to a new endowment fund at Florida International University in Miami convinced FIU to agree to house the country’s first NEI [NeuroEndocrineImmune] Research & Treatment Center. As the endowment grows, it will fund construction of an NEI Center™ within FIU’s Department of Molecular Microbiology and Infectious Diseases. Patients will include FM, ME/CFS, MCS, Lyme, Gulf War Illness, and more. [See “FIU Joins PANDORA as Academic Partner for Future NEI Center™”]


Two Deficiencies Caused My Depression

What made depression go away, for me, was getting low thyroid supported. It’s so overlooked, and passed on as being “normal.” I  was there too long. And then Vit D deficiency. My D tank was empty in late 2006, and I was actually talking to the doc about an antidepressant when I found how deficient I was and got on 4-5K of vitamin D3 daily. In about 6 months the depression was gone. I haven’t taken any AD’s since 2002 when I went on Armour [thyroid] and it worked for depression. – J


Coalition4Fibromyalgia Launches Site and Mobilizes

In March, a network of organizations was formed to advocate for people with NEIDs (neuro endocrine immune disorders including ME/CFS, FM, chronic Lyme, MCS and GWI) launched its first national project – the “Coalition 4 ME/CFS” (www.coalition4mecfs.org). Objective: Act collaboratively to drive public and private policies & initiatives that improve patient quality of life.

Now, the network has launched “Coalition 4 Fibromyalgia.” Go to the www.coalition4fibromyalgia.org website to sign up for the Coalition’s email communication list and read about activities you or your organization can get involved in.



Aussie Couples Needed for Research About Living with ME/CFS

Seen on the ME/CFS Australia (SA) website (http://sacfs.asn.au) – counselling researcher Robyn Lingard at Tabor Adelaide College was (and I hope still is) inviting couples whose life is affected by ME/CFS to take part in a study – starting with completion of her questionnaire and for some an in-depth interview. Robyn has had ME/CFS for 22 years. [See “Invitation to participate in research on the influence of ME/CFS upon couple relationships.”] – S


What to Say and Not Say to a Sick Friend?

Here are two articles with good advice about how to go about being truly helpful to a sick friend. In a way they’re contradictory, but I found both of them helpful.

“‘You Look Great’ and Other Lies” in the New York Times, by Bruce Feiler, who is a cancer survivor. He explains why he thinks saying “What can I do to help?” is usually not helpful, but I like his take on what can be helpful (“Would you like some gossip?” etc. )

“Asking Others for Help is a Gift from You to Them” in a Psychology Today blog, by Toni Bernhard, author of How To Be Sick. She says it’s all very well to suggest that “What Can I do to Help?” isn’t useful, but in fact people are sincere asking that. Your giving them a task to do is a gift to them as well as yourself, and will make you both feel good. – W


Q: What is the best way to explain Chronic Fatigue Syndrome to family and friends who just don’t understand, and sometimes made to fee by certain people that you are a hypochondriac or just being lazy?

A: Two explanations that many people have found very helpful are:

1. The time-tested “Spoons” article (How to Describe My Fatigue), written years ago by Lupus patient Christine Miserandino and shared around the world ever since. Spoons article: http://www.prohealth.com/library/showarticle.cfm?libid=15322

2. A new series of videos by Giles Meehan, which began with “What is it like to have ME/CFS?” and includes others explaining “What to Do When Your Friend Has an Invisible Illness? Believe them,” and more. Videos: http://www.prohealth.com/library/showarticle.cfm?libid=16139


Low Dose Naltrexone, What Is It?

Re: “Naltrexone Effective Therapy for Crohn’s Disease” cited in June 1 Newsletter

This article is the first mention I’ve seen of low dose naltrexone (LDN) on this site. I have wondered why and still do, since LDN is often prescribed for ME/CFS. I know that LDN has helped me tremendously for those problems. – S

ProHealth note: It’s always good to share what helps, and in fact there are quite a few articles on this subject in our database (as another reader with an interest in LDN noted). Just search on Naltrexone under articles in the search box above.


Online Social Networking for Neuro-Immunes in 20’s & 30’s

healKick is an international social network for young adult patients 40-&-under with neuro-immune illnesses such as: Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Chronic Lyme Disease, Fibromyalgia, Rheumatoid Arthritis, Lupus, Sarcoidosis, Reflex Sympathetic Dystrophy, Multiple Sclerosis, Multiple Chemical Sensitivity, Mold-Related Illness.

Meet and chat with other patients in their twenties and thirties using our Members Map, instant messaging, microblogging, or forums. (And click on the world map to see who’s online, and where.)

healKick (www.healkick.com)


Note: This information has not been evaluated by the FDA. It is generic and anecdotal and is not meant to prevent, diagnose, treat or cure any condition, illness or disease. It is very important that you make no change in your health care plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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