From Our Readers – Comments & Suggestions 08-03-11

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More on the Drug Xyrem for Fibromyalgia Symptoms

Re: “Sodium oxybate [Xyrem] for the treatment of Fibromyalgia,” by Dr. Roland Staud at the University of Florida.

I used Xyrem for 6 years and my fibro pain went away. They were 6 wonderful years of great sleep as well. But then my insurance company said I could no longer get it as I did not have narcolepsy. It now costs near to $3,000 a month. Although one can get it discounted, it is still way too expensive to be able to afford it on a monthly basis. Wish they would lower the cost so more of us could afford it. It does wonders for sleep and the pain of fibromyalgia. – H

It’s too bad that Xyrem isn’t more available for those with FM. After taking my first dose, I felt like I’d gotten my mind back, thinking clearly all day and not feeling the need for a nap. It’s changed my life tremendously for the better. For negative side effects, the most common are discussed at the Talk About Sleep site, and certain nutrients help with most of the problems that are encountered while getting used to Xyrem.

This substance was sold in health food stores for years, and was not expensive. It naturally occurs in the brain during deep sleep and the end products of processing it are water and carbon dioxide, so the liver and kidneys are not even involved in the process. Many people got a good night’s sleep with the product, until some evil people abused it, using it to rape. This brings up an important point: The women who were raped probably had normal sleep, and were probably drinking at the time they were given GHB.

With my revved up central nervous system, I can wake up while on Xyrem, just like a normal person in a deep sleep – it may take a couple of firm shakes, and I have to be careful, because I’m clumsy until the Xyrem wears off. I don’t normally do this, but wanted to make sure I could wake up in case of emergency. Xyrem can be abused, and can be addictive. If taken as directed, the addiction never happens. I trust my household, and don’t discuss what I take for sleep openly. I don’t leave it out when children are around, and ask the parents to keep them out of my private rooms.

I have Lyme disease, which may be the cause of FM, or it may be a separate issue. So, while I still have symptoms and am ill, the FM part of my profile is definitely no longer on top of my list of symptoms. I’m very thankful that I found a doctor willing to prescribe Xyrem off label, and that my insurance covers it. I wish it was available to all with FM. – D


Started Facebook Group for FM and ME/CFS

I’ve had an  FMS & ME/CFS support group for 18 months on FaceBook, and have 913 members and counting. I am including my support group link in hopes you may have a place to share it with your readers. [See FELLOW TRAVELERS, Support and Chat.] I have a compassionate and supportive group along with lots of info on natural techniques to diminish symptoms. I am also enclosing a poem – “Path of Chronic Illness.”  I hope this will touch your readers as it did my group.

Clarissa Shepherd

Note: Clarissa is author of a book titled Find Your Way: A Guide to Healing While Living with CFIDS and Fibromyalgia


Do the Simplified Methylation Protocol & Dr. Pall’s Protocol Conflict?

Re: “Q&A on the Simplified Methylation Protocol with Neil Nathan, MD”

Q: How would this protocol augment or compliment Dr. Pall’s treatment of excessive nitric oxide [ “Antioxidant suggestions for down-regulation of the NO/ONOO- cycle”]? And, can different forms of B-12 be taken (e.g., hydroxocobalamin, methylcobalamin) be taken in combination without causing problems? Thanks for your help. – C

Dr. Nathan: While I can’t speak for Dr. Pall, I personally believe that this protocol would dovetail with his NO/ONOO- protocol quite nicely. I have been privileged to hear Dr. Pall argue with Dr. Van Konynenburg about whether the NO/ONOO- mechanism or whether methylation blockade is more central to the pathology of CFS/ME, and it is my opinion that both are brilliant researchers who have contributed a great deal to our understanding, and that both are correct.

As our understanding of the biochemical imbalances underlying chronic fatigue grows, it is clear that a single mechanism does not explain what is going on in every patient. Each patient must be studied individually to assess the imbalances that apply to them, specifically, to achieve their own personal healing. As for the B-12 question, see below.

Q: I may be wrong, but er… where is the METHYLcobalamin in the Methylation Protocol pack? I’m pretty sure the protocol is dependent on taking methylcobalamin. Hydroxo[cobalamin] is only good for NO [nitric oxide] scavenging and to prevent anemia. No? – B

Dr. Nathan: You accurately note that the protocol does not use methyl cobalamin. This is by design. There are some serious questions about whether methylcobalamin can be utilized properly when methylation blockade is present. While this concept has been debated and discussed by some of the biochemists who are on the cutting edge of this information, many practitioners are not aware that this may be a problem. Methylcobalamin is a standard part of some protocols, including some of the work done with autistic children, and it is often assumed that it is the “best” (sometimes “only”) form worth taking. We are not convinced that this is true, and a lot more research is needed to clarify this issue. What we can say, with some certainty, is that in our protocol the use of hydroxycobalamin (not methyl) has been quite effective. To say that hydroxycobalamin is only good for NO scavaging and anemia is not correct.


Where Can I Find ProHealth’s Live Chat Rooms?

Q: Where is live chat? I was on the Chit Chat Message Board and another poster suggested we chat, but I didn’t find it in the drop down menu.

A: There is a COMMUNITY tab at the top of every page. Click on that; then the second choice below Message Boards is Chat Rooms. The Chat Chit Chat room is at the top of the list of chat rooms, but if you use the scroll bar you’ll see there are more than 20 rooms, from Depression to Thyroid. To get into the rooms, enter your username & password (or register). If you don’t see the rooms, the program helps you to install Adobe Flash Player. Note: unfortunately iPad doesn’t appear to recognize Flash.


ProHealth’s New US Weight Loss & Exercise Program Locator

ProHealth now offers an easy-to-use tool to help you locate and contact all kinds of exercise, weight loss, mind-body and healing classes & services in your area. You’ll find options including yoga, pilates, spin and more. You can even book a spa or massage appointment. Just enter your zip code to search, locate a class and contact info, or book online. You can try it here – To find it again, just click on the COMMUNITY tab at the top of any page and click on the Health and Weightloss Tools link. 



Answers to Many Supplemental Security Income Questions

Here is the Social Security Administration’s site on SSI that will probably answer many questions ( The FAQ list just goes on and on, answering so many SSI questions, so go on the website and see if your questions are answered. It’s not easy applying for or even being on Social Security Disability – but having answers is a huge help to you (and your family). Hugs to all. – T


Coping Tips for Orthostatic Problems (Faint Feeling on Rising, etc.)

I was diagnosed with POTS [postural orthostatic tachycardia syndrome] after a tilt table test today. I have a cardiologist appointment to decide what meds I should be on, but I started Googling for things I could do to help myself, and came across mention of this article “Postural Orthostatic Tachycardia Syndrome: Things that helped me with POTS recovery.” The interesting thing is that when this person with POTS went to the Mayo Clinic they wanted to know if she had any good ideas to share. She listed a few things Mayo told her and a few of the things she found out for herself. – P


Fibro, Dating and Marriage –  by ‘Sleepy-B’

The latest blog by ‘Sleepy-B’ at Sailing through the Fibro Fog, mentioned on the Hunter-Hopkins Center’s facebook page – “Chronic Illness and Dating” – and marriage, in her case. – D


IACFS/ME Conference Discount Extended, Check Out Patient Day

Discounts for early registration have been extended through Aug 25 for the IACFS/ME Conference in Ottawa, Sep 22-25. Check out the agenda for Sep 22 – patient day. Experts will present new research & treatment information on both fibromyalgia and ME/CFS. There will also be generous time for Q&A and networking (plus a chance to hear what the IACFS/ME researchers think about the new ME International Consensus Criteria, and the NAME issue). To see the conference agendas, check prices, and register, go to



‘Cliff’s Notes’ on the New ME Diagnostic Criteria

This summary of the ME International Consensus Criteria article is a good way to learn the key points it makes – I printed it out to show my doctor. (


Pain Patients’ Comments Needed

American Pain Foundation (APF) would like to share with you a well-written and balanced article, “Giving Chronic Pain a Medical Platform of its Own,” that appears on The New York Times website.

This comprehensive article, written by Tara Parker-Pope, highlights the Institute of Medicine’s (IOM) recent report on the prevalence of pain in the U.S. and stresses the need for better pain training in medical schools, more research about pain and improved education regarding the importance of early treatment.

APF believes it is not only imperative to reach out to media outlets that inaccurately report on pain, but also to applaud those that help advance pain management and access to care and encourage them to continue to highlight and address pain.

Take Action! Join APF and tell The New York Times and Ms. Parker-Pope how important such articles are to you and the millions of people who live with or are affected by pain.

Click here to submit your online comment. Follow the instructions on the page, which will require you to register before submitting your comment. Registration is free.

Thank you so much for your continued support!

American Pain Foundation (


New Site for Canadian Fibromyalgia Patients Debuts

Announcing a new Canadian website developed specifically for Canadians with fibromyalgia – It will be a central place that brings together information about fibromyalgia, a community of experts, and people living with fibromyalgia.

Resources will include informative videos from patients and health care professionals, a list of doctors who accept new fibromyalgia patients, contact information for Canadian associations, and (coming soon) news about the latest research on the causes and treatments for chronic pain and fibromyalgia.
There is also a way to raise funds in support of fibromyalgia patients. Visitors whose lives have been affected by fibromyalgia in some way, shape or form simply add themselves to a support map of Canada, and will donate $5 to The Arthritis Society to help support awareness programs useful for those living with fibromyalgia.


Report on Metabolic Abnormalities in Fibromyalgia Brains

Re: “Metabolic Abnormalities in Pain-Processing Regions of Patients with Fibromyalgia: A 3T MR Spectroscopy Study”

Yet another article reporting more evidence that people with fibromyalgia have central nervous system abnormalities and dysregulated pain processing. It concludes “these data may be useful in the diagnosis and development of more effective pharmacologic treatments.” But when?  – N


Note: This information has not been evaluated by the FDA. It is general and anecdotal and is not meant to prevent, diagnose, treat or cureany 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 with your professional healthcare team.

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