From Our Readers – Comments & Suggestions 09-30-09

Breathing Properly to Help ME/CFS

Re: “The Importance of Breathing Patterns in ME/CFS (and Fibromyalgia) Symptoms & Recovery” by Clinical Nutritionist Blake Graham.

I read this article and was greatly inspired by it. My acupuncturist & fibromyalgia doctors both agree that my mitochondria are not working properly and that breathing exercises can help… I do not breathe deep enough and at times feel at a loss of breath, even when I am sleeping, will wake up quickly – no it isn’t apnea – but I seem to not breathe well! Who knew? Thank you for explaining different styles of breathing so I may try some new things to increase my breathing to a deeper level which in turn will energize my wearied body! I highly recommend these exercises to my support group members! Bravo! Great article! – Shelley Echtle, Director North Texas Fibromyalgia Support Group

This was a fascinating article. My massage therapist had to remind me to breathe when I first started getting massage from her. It makes a huge difference in how I feel after the massage. I also tend to breathe shallow and even hold my breath when concentrating at work or during stressful situations. I didn't notice my breathing pattern until a couple of years ago. Now I try to be more aware of it so that I catch myself holding my breath and start doing some slow, long, deliberate breaths to "feed" my body that I seem to be starving from oxygen. The slow, deep breathing with yoga, combined with slow,easy stretching makes an encredible energy boosting session. It really makes a difference. – T


Decision on Whether to Get the Swine Flu Shot a ‘Sticky’ One

Re: “What Should an FM or ME/CFS Patient Do About the Swine Flu?” by Dr. Charles Lapp, MD

Q: Would you please try to feature opinions of other doctors on which of us SHOULD get the shots? With all due respect to Dr. Lapp, I think many of us are more vulnerable to the flu and dire complications. In an article entitled "Swine flu's tendency to strike the young is causing confusion" the LA Times reports: "Even as health officials anticipate a new onslaught of H1N1 cases, the pattern of the pandemic influenza strain – which tends to be fatal for the middle-aged but not the elderly – remains a mystery… For example, in New South Wales, Australia's most populous state, half of the 48 deaths were in people in their 40s and 50s, according to figures from the government's health department. Though children and young adults have higher rates of H1N1 infection, the fatal cases are more likely to involve middle-aged adults because they have higher rates of the underlying medical conditions that make H1N1 deadly, such as asthma, diabetes and heart disease, said CDC spokeswoman Artealia Gilliard." Being middle aged with underlying medical problems is exactly what most of PWC's are….

I'm fortunate in that I have an infectious disease doctor who periodically does a full lymphocyte panel so that we can monitor my immune function. My lymphocytes and T cells are low, have been for years now, making me more susceptible to picking something up and harder for me to shake it. So I'll definitely get both a regular flu shot and the H1N1… I'm writing all this because I'm afraid that many of my fellow PWC's are as susceptible as I am, and again with all due respect to Dr. Lapp, who of course had to address the tendencies of all of us, I don't think the cautions about who SHOULD get the shot came across strong enough.

If you're unsure, try to get your doctor to check your immune system numbers. If your path sounds like mine, please don't delay in getting the shots. My heart is heavy with the comments/questions posted by others. All of these unknowns show how much farther research needs to go so that doctors can answer each individual. – C

A: We agree it is essential for each ME/CFS patient to review the vaccine decision with your personal physician so it can be made based on a careful weighting of your health history and vulnerabilities, plus the latest info as vaccine results unfold. We invite readers to suggest links to the advice of other physicians on this vital subject.

Another source of ME/CFS/FM-related info on swine flu is Dr. Charles Shepherd, Medical Advisor to The ME Association. (Thanks to the excellent ME-CFS Society South Australia website for this lead.) Dr. Shepherd has posted an evolving Q&A on the subject (now in version 4, with updates highlighted in blue).


CFS Advisory Committee Plans to Challenge CDC – We Can Help

The CFSAC meeting scheduled for Oct 29-30 will discuss the CDC's 5-year CFS strategic research plan. We have only until Oct 14 to call/write Dr. Wanda Jones at CFSAC to sign up for telephone testimony… and there are only 1-1/2 hrs of patient speeches allowed in two days’ time! A written copy of your remarks must also be sent in, even if you will be making the remarks on the phone!

Wanda K. Jones, DrPH
Executive Secretary, Chronic Fatigue Syndrome Advisory Committee
Department of Health and Human Services
200 Independence Avenue, SW
Hubert Humphrey Building, Room 712E
Washington, DC 20201
Dr. Jones’ phone: (202) 690-7650.

The Agenda is not yet posted, but everybody, keep checking it out at and let others know as soon as you see it. I'm hoping that Judy Mikovits & other Whittemore-Peterson people, and the IACFS/ME people will be there in force! It will be videocast, so get your computers ready… go there now and download whatever is required (RealPlayer) – S


Confused by Different Vitamin D Test Recommendations

Q: I get confused by articles suggesting healthy levels of vitamin D in the blood – some talk about ng/ml and some about nmol/l. How can I convert one to the other?

A: Vitamin D experts advise that “Vitamin D levels should be monitored and contained within acceptable limits. These are thought to be 40 to 60 ng/ml [nanograms per milliliter] or 100 to 150 nmol/l [nanomoles per liter] of 25 (OH) Vitamin D. (Conversion ratio: 1ng/ml equal to 2.5nmol/l). Some recommend more.”


Natural Products for Charley Horse?

Q: Can you tell me which natural products are good for charley horses? – D

A: This problem typically involves calf, thigh, and/or foot cramps that tend to be experienced at night. Experts say staying well hydrated is the most important preventive. Drink 6 to 8 glasses of water daily.

And if charley horse cramping is a regular thing, it's important to see your physician because there are many possible causes – often involving some nutritional deficiency. This way you can rule out the possibility of incipient illnesses such as type 2 diabetes and circulation problems, and discuss blood panel testing for deficiencies & imbalances such as the following most common causes of cramping:

Electrolyte imbalances – Electrolytes are 'salts' in body fluids & tissue (sodium, potassium, calcium, magnesium, etc.) that conduct electricity and must be present & balanced for proper muscle function. Often the problem accompanies a change in bodily water levels – e.g., dehydration.

Medications – Especially diuretics (water pills), can cause cramps by causing an imbalance in potassium and magnesium levels. Statin drugs may be a problem too. A pharmacist/MD can check your meds to see if a medication might be a problem.

Calcium deficiency – This is the most common cause of nocturnal cramping. If you're avoiding fat, consider nonfat yogurt and skim milk. And doctors may advise taking a calcium supplement at bed time.

Vitamin E deficiency – In a study of 125 patients with night leg & foot cramps, 123 found significant relief when they took vitamin E supplements (and in a second phase, when vitamin E supplementation was stopped, the cramping returned for most).

Magnesium depletion – This is an important and frequent cause of cramping, and a common deficiency in ME/CFS & fbromyalgia. Magnesium plays a key role in muscle relaxation. See “The Essential Nutrient Magnesium – Key to Mitochondrial ATP Production and Much More.”


Fun Online Medical Lingo ‘Tutor’

For those of us who have trouble understanding and pronouncing some of the words our doctors & other providers use, the National Library of Medicine created a fun tutorial ( that teaches about the words related to our health care. (“Sometimes even words you think you understand can have a different meaning to your doctor.”) It covers topics like abbreviations and how to break up medical words to understand them:

Word Roots: The "root" of a medical word is often a body part, like "derm" (skin) in dermatitis.

Beginnings and Endings: hyper- (above normal); hypo- (below normal), etc.

And much more. Can be very helpful. – T


How to Get into Chat Rooms & Message Boards?

Q: How Do I Get into the ProHealth ME/CFS Chat Room & Message Board?

A: Glad you asked! If you’re anywhere on, click on COMMUNITY in the bar across the top of the page. Links to the Message Boards and Chat Rooms, and other choices, are offered there.

To go to Message Boards directly, the URL is Then click on the “select a board” arrow to pick one you want – there are 31 in the list. You’ll be able to view and search all posts, but to post a comment yourself you’ll need to register a username and password, which takes only a moment.

To go to Chat Rooms directly, the URL is You’ll need to register a user name and password in order to log in. Then scroll bar down to review all the rooms and click on what appeals, enter and chat.


More on Beet Juice for Stamina

Re: "Beet juice more effective than 'any other known means' of enhancing mitochondrial oxygen utilization & physical stamina; lowers blood pressure too"

I’ve been buying beetroot from the fruit n vegetable stall, peeling one beetroot, slicing it up, put it in a small saucepan with enough water to just cover the root. I will then boil it for 15 mins. I then let it go cold, pour the juice into a bottle, and leave it in the fridge for a couple of hours to chill.

I can report that I do most definitely have more stamina/strength, and it seems to be in my legs. I can now bike ride in 4th gear, which is a first for me, and I’ve been bike riding for over three years, and had never managed gear 3 before, let alone 4th gear. The beetroot was the only new thing that I tried so it has to take the credit for my recent stamina burst.- F


On Universal Healthcare

Just a thought. Have you ever wondered that if perhaps we hadn't fought so hard for separation [from England], and if Paul Revere had kept his mouth shut, we'd already have universal healthcare? – M


Xylitol, Like Chocolate, is Very Toxic to Dogs

Re: ProHealth’s new probiotic product for dental and gum health (EvoraPlus™), which contains the non-sugar sweetener xylitol.

Please let customers know that the natural sugar-free sweetener Xylitol, though perfectly healthy for humans, is quite detrimental to dogs. Some dog owners give their pets probiotics thinking they are all the same. Thank you for your attention. – J

Note: You are correct. Never feed anything sweetened with xylitol to dogs, as they metabolize it differently than humans do and may be harmed by it (as is the case with chocolate, though for a different reason). In canine metabolism, xylitol causes a drastic increase in insulin secretion, quickly causing blood sugar to plummet and potentially causing collapse, seizures, and liver failure. The exact toxic dose is unknown.


Lidocaine – a Narcotic?

Q: Can you tell me if lidocaine is a narcotic?


A: It appears that lidocaine is not a narcotic/opioid, and in over-the-counter topical formulations is not a “controlled substance.” Injectable, intravenous and oral delivery forms are not freely available.

Narcotics work by binding to “opioid receptors” in the central nervous system & other tissues. Technically, the word "narcotic" comes from the Greek word "narkos," meaning sleep or “benumbed.” Therefore, "narcotics" are drugs that induce sleep and pain relief. And more specifically, that means opium and its opiate derivatives such as heroin and morphine; as well as semi- and fully synthetic opioids such as tramadol. In the US legal context, cocaine is also termed a “narcotic” even though action and effects are quite different.

Lidocaine works by blocking the pain signal sent by the nerve endings on the skin, has anti-inflammatory properties, and is not associated with addiction. According to “It is a local or topical anesthetic that can be applied to the skin … to reduce the immediate feeling of pain and produce numbness. Lidocaine has been in the market since 1948, and is available over the counter, which means no doctor prescription is needed to buy it or use it. Lidocaine is used for a variety of medical conditions [such as the nerve pain associated with shingles], and is often one of the drugs included in first-aid kits in the form of a combination antibiotic/pain relieving cream. Sprays for treating sunburn, insect bites, or poison ivy often include lidocaine as the main ingredient. Lidocaine gel is often used in dental procedures as a way of numbing the area before applying an injection, or to reduce pain after the procedure is finished. And surgeons have been experimenting with its use in surgery vs. anesthesia.

“Despite being sold freely, lidocaine is a powerful drug, and the risk for overdosing is high.”


Compelling Book on Depression

I would like to recommend a book to all of you on what depression is like. It is a book called The Beast: A Reckoning with Depression.* The author is Tracy Thompson. She used to be a journalist for the Washington Times. She wrote this book about her own life-long journey with depression and her road to recovery. In this book, she gives some descriptions of depression that I found very compelling. This book is wonderful for people who suffer from depression. But I think it would also benefit who don't suffer from depression themselves, but have a friend or loved one who does. – L

* We found that this book is only available used on Amazon, but you may look for it at your public library or a bookstore, used or new.

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

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2 thoughts on “From Our Readers – Comments & Suggestions 09-30-09”

  1. sulis says:

    I frequently get leg spasms if I get too cold while sleeping. They can be in the calf or more commonly along the sides of the lower legs. My mother and aunt have the same problem (all three of us have fibromyalgia).
    I do find that in the summer they are more frequent and I need to increase my magnesium for a few weeks, but the rest of the year the simple solution is to eat a spoonful of prepared mustard (make sure it includes turmeric) at bedtime and again if woken by a cramp. It usually works in minutes; sometimes if the cramp is severe I also put heat on the affected area.

  2. shartau says:

    This has been covered to death but again:
    Calcium, Magnesium balance some say 1 to 1 others differ.
    But the old an apple a day is correct. Best source of mallic acid.

    I get mallic acid powder from a beer wine makers supple store as I cannot afford the suppliment stores.

    How much – everyone is different. Mix it in H2O or juice. Start low, till you find what works.

    When I am out these attacks have been enough to take me down. Litterly brings me to my knees. Brings tears to my eyes.


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