From Our Readers – Comments & Suggestions 03-11-09

My Wackiest Doc Story

Re: The Wackiest Things Your Doctor Ever Told You” message string on ProHealth’s ME/CFS & FM Message Board. (It’s large, so takes a few moments to load.)

I had just had my first baby in a teaching hospital. The next morning a new doc came in asking questions –

“When was your last period?”
“Um, a while ago.”
“Really? Like how long?”
I said, “Like 9-1/2 months.”
He said “Wow, is that normal for you”

I mean I was in the maternity ward! – Janalynn


One-Time Cortisol Suppression Treatment

Re: “Recalibrating ‘Fight or Flight’ – Counter-Intuitive New Treatment for ME/CFS” by Dr. Suzanne Vernon, et al.

As someone who takes Cortef 20 mg daily for ME/CFS-related adrenal insufficiency, I am bowled over by this opposite strategy proposal. Perhaps collapse into extreme weakness following a crisis is the body’s intelligence at work? – Groupie

How will this work if you have normal cortisol levels? … It looks like this study only addresses one subgroup of CFS patients – the ones who are being studied by the CDC who have something related to post-traumatic stress disorder. – outofstep


Myhill/McLaren-Howard ME/CFS Mitochondrial Function Test

Re: “News Flash – A Test for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)”

When reading this article I began to tear up. How outstanding it would be to finally have not only a test that could prove CFS/ME but also the proper meds and/or supplements to improve the overall fatigue and pain that make up this horrible disease. The more people who adhere to requests to become involved in waging support for further funding through the CDC via our politicians, medical staffing, family and friends, the sooner we will be on our way to a renewed lifestyle, free of these disabling symptoms.

I have waited over three years for SSDI to be approved, having had CFS for over four years. The judge who made the final decision for benefits was one of the toughest judges I could have gotten and denied my claim, stating I alleged all of my symptoms. You don’t want to know how much it angered me that one man’s decision affected the remainder of my life and lifestyle. The sooner we can prove how disabling CFS is, the better off not only we, the sufferers, will be but also the country, as many of us could go back to work contributing to society once again. – Brenda Brown

This is fantastic news. It is so difficult being ill and not having proof. I think it is a very complicated disease and lots more research will be needed, but it is a good start. The cells that make the energy are obviously affected. It is so frustrating when I know if I walk/exercise more, one should get fitter not more tired. – Simi2

Thank God. It is so hard to find a Doctor who even believes in CFS or Fibromyalgia. What a relief it would be to actually have proof this is not all in your head. Treatment would be a Godsend… – Dee


Beware of Fluoride in Many Meds

Four percent of the population is allergic to some form of fluoride (there are different forms). Fluoride is found in the
quinolone antibiotics. No one with Fibro should be taking these because they can cause tendon tearing. Fibro can weaken our tendons.

Fluoride is found in many anesthetic medications as it helps the meds cross the blood/brain barrier and ensures quicker delivery. I talked to my anesthetist when I had my knee surgery and he and the nurse made sure none of the meds contained fluoride. That was the first surgery I woke from feeling great. My daughter couldn’t believe it.

Fluorescene is used in eye exams. It is usually yellow eye drops. My Mom and I always felt sick after having our eyes examined. Mystery solved! – M


Site for Fluoride Information

The Fluoride Action Network (FAN) is a great information site on this toxin and also all the latest info on cities around the world removing and adding fluoride to their public water…

Hundreds of cities have removed or rejected this toxin from being added to their public water supply. Unfortunately, it seems that for every one that rejects or removes it, the chemical pushers “hook” in another city to add it. Schools and PTAs are offered money and sold a bill of goods on how all this stuff is good for the “children.” Not for ingestion.

You can also Google: “List of Cities Rejecting Fluoride” and there is a list that has been compiled of cities rejecting/removing fluoride since 1990… JH


Staci Stevens’ ME/CFS Test at Pacific Fatigue Lab

Re: “Staci Stevens – Breaking Ground in ME/CFS Research”

Staci Stevens article doesn’t tell me anything. Most of us with CFS already know, “Their findings, which suggest ME/CFS patients have a unique inability to regenerate their energy stores after exercise.” You’re not telling us anything new. WHAT’s being done about it? Now that’s the million dollar question. We already know that CFS is a bad name for what we suffer. This article gave me nothing new or exciting. Sorry. – morningsonshine

Staci Stevens’ ME/CFS test – Can’t hear it enough. What we patients know doesn’t mean much unless those who provide medical care and those who provide funding for medical care also agree and consider what we know important. … Staci Stevens’ accomplishments make this kind of information clear, even in the language of those who have insisted that our problems are merely psychological. She has given us a tool. No, this isn’t new news. Yes, they’re milking it for every filler spot they can. I don’t care. Every time I read it I feel happier.

My post-exertional malaise is real, and there is a way to prove it, and there is a place where people are doing this, and, if I could pull things together, it’s even close enough to where I live to maybe, maybe even try to get [my HMO] to let me use it at their expense. The pace of change can be glacial. Since my body doesn’t tolerate drugs well, I’m not particularly interested in more products from a former bomb-making and chemical warfare industry converted to fertilizers and health care. But I am interested in new ways of creating diagnoses and new approaches to treatments. And Staci’s work is a pivotal step – groundbreaking even when no longer breaking news. – justplainsandi


Stevens Test for Post Exertion Malaise – Anyone Else Concerned?

I know that there are people, like me, with ME/CFS who can do more than 8 to 12 minutes of exercise on a daily basis, but who still definitely suffer from post exertion malaise… it just takes more than that to bring it on. If this becomes the standard, it could actually screw up our disability claims… unless they allow each person to test to his/her level of exhaustion.

Plus, even if one is capable of doing more exercise than 8 to 12 minutes, there is still a big difference between that and working a full day, day after day. Another thing is that, for me at least, the PEM sometimes takes two days to hit. It always hits, but it does vary, and I’m not sure why.

Plus, anyone with ME/CFS who has to go thru that testing (for however long it takes to exhibit post exertion malaise) is going to be paying for it big time afterwards. For some that might mean taking a week of down time and fully recovering to their previous functioning, but for others, that would mean a more permanent downward progression. (Like I know that every time I have really overdone it, I have recovered some, but not back to the level I was at before overdoing it. So, say I started out functioning at a 7, then overdid it and went down to a 1. When I recovered I would only go back up to a 5.) – AT


Mold Testing

For those of you who even suspect at all that you are sick from mold, please listen to me! Let me save you a lot of time, pain and grief, maybe even your life! Go to [a home store such as] Home Depot and buy a $10 test kit. A kindergartner can do this test, it’s that easy. It cost $30 for a test report… so once you complete the test you seal it and send it to a company and they send you a report of exactly what type of mold you may be dealing with. …it will give you proof and the ability to get someone to listen to you that can do something about it. – DG


EPA Mold Test Kit

The Home Depot test kits only pick up really bad toxic mold problems.… The ERMI (trademark of the U.S. Environmental Protection Agency) mold test is the most accurate one we have, but it’s a lot more expensive.* – FB

*Note: the different ERMI test kits run from $100 to $225.


Long Waits for SS Disability Appeals

I have been denied at every stage. Now my case is in Falls Church, VA, at the Appeals Council level. I filed for this in August, 2007. I got in touch with my congressman and they responded that the normal waiting time for appeal is now 30 months!


Disabled Invited to Speak Up

The National Council on Disability doesn’t seem to be aware of (or is ignoring) those of us who are chronically ill, unable to work, and not able to benefit from any back-to-work programs. What many of us need, sadly, is support; financial (SSDI, SSD) and community (assistance with shopping, errands, etc.).

Perhaps this is a good place to point out the misunderstandings and prejudices we face, and explain that we are dealing with very debilitating symptoms, often tied to objective markers, that should put finding the cause and cures of our diseases on the national agenda. [See “National Council on Disability Invites Public Comment” – by mail, fax, e-mail, toll free call line, or attendance at DC Meeting March 30 – Apr 1”] – MZ
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 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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One thought on “From Our Readers – Comments & Suggestions 03-11-09”

  1. beartow says:

    Now that explains something that I go through when I get the fluoroscene eye drops during my yearly eye exam. My eye doctor just shakes his head when he puts those drops in my eyes because of how much distress they cause me with the stinging and burning and pain. He has told me that I’m the only one of his patients that reacts this way to those drops!! This is my “normal”, but evidently it isn’t. Imagine that!! Thanks so much for sharing your thoughts and experience with fluoride!

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