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

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Have Insurance but Can’t Afford Drug Co-pays

Re: “Trouble paying for needed medicines? The Dispensary of Hope may help”

I'm from Maine and wonder if any one does this in the State of Maine. My husband is diabetic and can't afford testing strips and lancets. His insurance charges too much so the company won't help as he does have the insurance. As a result his health is suffering. I also have many med needs. Both of us need GERD meds and my insurance doesn't cover it any more. We used to share my prescription for Prevacid® – I took one every 2nd day and he the next day. No one should be without meds they need. Also Ambien® is the only thing that helps me get to sleep once in a while, but can't afford it. I have fibromyalgia and a lot of health issues. I am so glad to see that some are getting help but am in serious need here in my home. – B

[Note: Another comment on this article suggested a few possibilities, but be sure to investigate the Patient Advocate Foundation’s Co-Pay Relief site ( Check the list of diagnoses they may be able to help with – two of these are Diabetes and Pain.]


Friends of Whittemore-Peterson Facebook – For W-P News

Friends of the Whittemore-Peterson Institute has a Facebook page for “those affected by ME/CFS, FM or GWI” at: The group has 206 members so far. They could use a few more! – S


Encourage Oprah & Dr. Oz (On His New Daily TV Show) to Do More on FM

Dr. Mehmet Oz, MD, has an article on fibromyalgia in the September “Oprah” magazine. I posted a comment to the article thinking that if there is more interest they might do more. I added CFS/ME. You have to join or sign up to post a response. – G

[Note: Patients’ messages of thanks for this legitimizing column already number 166, but adding your message could help convince Oprah & Dr. Oz how important this is. FM would also be a natural for "The Dr. Oz Show" (, a new daily TV show on health topics that kicks off Monday, Sep 14.]


Dr. Campbell’s FM Coping Advice, Rings True

Re: “The 1% Solution” by FM educator Bruce Campbell, PhD

I believe that you hit many thoughts about this disease on the head. I find that it is necessary to figure out what you are able to do and what brings you comfort on a daily basis, as these things can change from day to day. I have to say I find it very hard to say No to the things that I love to do as an active participant in my family and find those days very frustrating.

I find the thing most aggravating about this disease is the lack of pain control that is so hard to find. I thought once the cold weather left things would get better, but I find that is not to be for this year. Thank you for always striving to find things to help us with our fight against this silent disease that is so misunderstood. – C


Thanks to FM-CFS Canada for the FM Massage Therapy Guide

Re: “Fibromyalgia Management Guides for Pharmacists and Massage Therapists, from FM-CFS Canada”

After reviewing your guide, I can only feel grateful that someone has gone to the trouble to write such a lucid and thoughtful piece that we will be able to use to educate those who propose to help us. I know from experience that tech writing is harder than it looks.

This is a masterly job. The writing clear and professional looking. It warns strongly against the kind of over-enthusiasm, my own included, that used to get me in trouble. I regret that my current income no longer allows me to pay for massage. As a result, I have no one to show for professional comment, but I will pass it on to someone who does still get massage. – J


Dr. Lapp on the Ampligen® Saga

Q: What’s happening with Ampligen?

A: The most recent news we’ve seen is a note by Dr. Charles Lapp, dated Aug 29, in his free e-newsletter for ME/CFS & FM patients (sign up at

“I spoke recently with Hemispherx Biopharma’s medical director, Dr. David Strayer, who told me that Ampligen was on an FDA fast track for consideration, and that the deadline for a decision would be August 25, 2009. If the FDA failed to respond by that time, then legally the agency was under no time constraints and could take months to years to give a final decision.

“At the time of this writing (August 29), we have not heard of any response from the FDA – positive or negative – and so approval of this medication is currently in limbo.

“We continue to offer Ampligen under the cost-recovery (aka compassionate care) AMP-511 Protocol. Interested individuals should consult the information on our website at” – Dr. Lapp


Gut Bacteria & Weight Gain – Could Treating Candida Have Tipped the Balance?

Re: “What Does Your Gut Tell You? – Scientists Reveal the Link between Weight Gain and Intestinal Bacteria” by Dr. Brenda Watson, ND

I thought I'd post my experience for the group and see if anyone else had this happen. I started gaining weight in the fall of 2007. Two things changed at that time. I stopped flying airplanes for the Air Force, and I started taking oral Nystatin to kill the Candida in my intestines, along with [a probiotic product that contains] lactobacillus acidophilus, bifidobacterium bifidum, and lactobacillus bulgaricus. I checked and found that both lactobacillus strains are considered firmicutes (the 'bad' bacteria from this article). The bifidum strain are considered bacteroidetes (the 'good' bacteria).

So, I was severely altering the microflora of my intestines just at the time I was gaining weight. I was killing the fungus, but adding 'bad' bacteria. I finally killed the fungus, but perhaps all that 'bad' bacteria tipped the balance. I am now taking only bifidum probiotics. I'm not sure if there is a relationship, but I thought I'd mention it for all to see. Good health! – S

[Note: None of these bacteria are 'bad' in the usual sense. Both the firmicutes and the bacteroidetes you mention are probiotics that support healthy digestion – though in this study a difference in the balance of the two, shifted to more firmicutes, was noted in the subjects who gained weight more easily.]


Australian Study of Alpha Stim® for Fibromyalgia

An Australian research study at Deakin University Integrated Research Unit (Burwood Campus) in Victoria is looking for people with fibromyalgia who are willing to participate in a trial of a cranial electrotherapy stimulation device. This therapy involves a mild stimulation of the brain by passing a minute current of electricity into the brain via electrodes clipped to the earlobes. Patients will use the Alpha-Stim SCS device for 1 hour per day over 6 weeks, and the levels of pain, anxiety, depression and quality of sleep will be measured during this time. This treatment is a non-invasive intervention with minimal side effects. Results are expected out towards the end of the year. – R [For information and links, click here ]


Milk Thistle Extract Helped Me

I had serious trouble with my liver (typical with fibro), and the milk thistle has brought my liver panels into normal ranges. I am thrilled; so are my doctors. – J


Question on ProHealth’s New “Alternative Therapies” Message Board

Q: To Holly Admin – People are jumping to the conclusion that because there is a new Alternative Therapy board that they now should only post conventional based information on the ME/CFS/FM board & other disease boards. Please clarify. Thanks for your hard work. – K

A: The Alternative Therapies Board is not meant to be a replacement for any similar types of discussions on the ME/CFS/FM board. You can still post "alternative" topics on this board. Many people had requested a board where they could discuss health topics that were not specifically related to any disease or to have a place where more alternative treatments for diseases could be consolidated. That is why we created the Alternative Health Board. – Holly


Announcing the Addition of a New Multiple Sclerosis Message Board

In response to requests from Message Board users, ProHealth has created a Multiple Sclerosis Message Board, bringing the number of boards to more than 30.

Note: This information has not been evaluated by the FDA. It is generic and anecdotal, and is not meant to diagnose, prevent, 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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