From Our Readers – Comments & Suggestions 03-24-10

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Guide Highlights Least Toxic Products

This is an interesting “Guide to Less Toxic Products” ( – thought readers would like! – S

[Note: This guide is published by the Environmental Health Association of Nova Scotia, and includes products available in North America as well as internationally known brands. Each topic is accompanied by a brief discussion of the general science (check out ‘hair coloring’ or ‘nail products’ for example). Products in each category are listed as: best, good, simply unscented, and homemade alternatives.]


Constipation Drug in Phase III Trials

Q: Regarding the report “Linaclotide is Effective for Patients with Chronic Constipation,” where can one get this drug? Is it by prescription only? Is it only in the USA or Canada?”

A:  Linaclotide is apparently still an investigational drug. A search of turns up a 114-location study aiming to include 1,300 chronic constipation and IBS-with-constipation patients across the US. It is an open label Phase III study (every participant will know he/she is taking the drug, and the objective is to observe patients taking it for an extended time). For more Information, see the listing for trial NCT00730171.

The US-based developer of Linaclotide (Ironwood Pharmaceuticals, a 50-50 partner with Forest Laboratories regarding this drug) has licensed international partners for development & commercialization in Europe, Japan, and other Asian countries. The drug apparently works by stimulating certain receptors that increase fluid in the intestines, hastening stool transit time and reducing gut hypersensitivity.


Could Our Bodies Be Generating Cholesterol to Protect Us?

Re: “Statin drug appears to weaken body’s immune defenses”

Finally a study saying that statins weaken the immune system comes to light! Yet even here there is a lot of PR spin, making statins sound like a wonder drug. Perhaps they have been for some, but I wonder how many of my fellow PWC’s (I guess we’re now PWME’s) have been harmed by them as I was. Taking a statin drug contributed significantly to my becoming disabled by ME/CFIDS six years ago. The “side effects” offered in the sales material we sign off on when we pick up a prescription include “flu-like symptoms,” suggesting that the companies have already understood a connection between statins and upregulated viruses in many people.

Cholesterol builds strong cell walls. It’s weak cell walls that contribute to mitochondrial dysfunction, allowing viruses to easily spread between cells as well as creating weak cellular metablolism. The body makes 80% of your cholesterol, and only 20% comes from dietary sources. If your cholesterol level suddenly (over a period of months, as mine did) rises by 100 points, please seek a variety of medical opinions before embarking on a course of statins. Your body may be generating that cholesterol to protect you.

• Dr. Paul Cheney conjectured that this spike in cholesterol happens to protect the brain.

• Dr. Sara Myhill has written about it at some length here.

After six years of reading all that I can and seeing a number of specialists, I’ve come to believe that my cholesterol spiked in an effort to stave off this illness. If I’d only known then, before a year of stronger and stronger statins that dented the cholesterol number but left me disabled.

Find a holistic MD who is aware of the labs that assess cardiac risk, including seeing what your cardiac genotype is. It turned out that I’m in the small number of people for whom statin drugs are not very helpful from a cardiac perspective. They were downright harmful when it came to the ME/CFIDS one. – C


Chronic Pain’s Effect on Relationships

I am a guy with fibro, and I think this article on dealing with chronic pain could help anybody who is in a relationship. I found it on the Men with Fibro website (, which is overall helpful for male FM-ers and their partners. – P


Simple Help for Orthostatic Hypotension & Fluid Accumulation

Check out the ThisIsMS website. (Chronic Cerebrospinal Venous Insufficiency or CCSVI forum.) Many MS’ers are using Inclined Bed Therapy with success (raise head of bed 6 inches – height varies based on length of your bed and individuals). Originator of the idea Andrew Fletcher is on the message board. Zero cost treatment everyone should probably try. – H

[Note: On this subject see also a research article published in 2008: “Physiological effects of sleeping with the head of the bed elevated 18 inches.”]


On the Subject of Soy & Thyroid

Re: The article “Iodine Deficiency – Important in Many Health Problems, Yet Underestimated and Misunderstood”

Check out this article on “Effects of soy protein and soybean isoflavones on thyroid function in healthy adults and hypothyroid patients: A review of the relevant literature.” The research says “in individuals with compromised thyroid function and/or whose iodine intake is marginal soy foods may increase risk of developing clinical hypothyroidism.” – L


Funnies Forwarded Around the Net

This ‘Dear Tide’ email has been passed around in many versions. This one was posted on the Chit Chat Message Board by “H”:

Dear Tide:
I am writing to say what an excellent product you have. I’ve used it all my married life, as my mom always told me it was the best. Now that I am in my fifties I find it even better! In fact, about a month ago I spilled some red wine on my new white blouse. My inconsiderate and uncaring husband started to belittle me about how clumsy I was and generally started becoming a pain in the neck. One thing led to another and somehow I ended up with his blood on my new white blouse! I grabbed my bottle of Tide with Bleach Alternative. To my surprise and satisfaction, all of the stains came out!! In fact, the stains came out so well the detectives who came by yesterday told me that the DNA tests on my blouse were negative and then my attorney called and said that I was no longer considered a suspect in the disappearance of my husband.

What a relief! Going through menopause is bad enough without being a murder suspect! I thank you once again for having a great product! Well, gotta go…..have to write to the Hefty bag people!


International Awareness Day on Facebook

I found a facebook page for International ME/CFS & FM Awareness Day (May 12). People in different parts of the world can find local events or ask others to help them organize a new one. – O


Dr. Bested Talks About FM Research in Educational TV Segment

Here’s a long educational TV interview and Q&A on fibro with Dr. Alison Bested, a Canadian FM specialist, and Harvard naturopathic expert Dr. Alan Logan. I was interested in what they have to say about inflammation. – R


Strong Opinions Regarding Possible Xyrem® Approval for FM

Re: “New Drug Application for sodium oxybate as fibromyalgia treatment accepted by FDA”

Great news. I’ve been waiting for this for quite a while. Hope the NDA will go through – Xyrem is a much better treatment for fibromyalgia than any of the three that are currently FDA approved for the purpose (of course there are hundreds of other medications that can be used to treat fibromyalgia, but the FDA approval carries a lot of weight). – D

Are you kidding? GHB, also known as “the Date Rape Drug,” has a negatively impressive reputation for possible abuse. I hate to consider if this formula is approved for the tens of millions fibro sufferers via simple prescription, making a pharmaceutical quality of this available to tweakers & abusers of all ages. – E

Not so simple. Xyrem is already available by prescription for narcolepsy with cataplexy. The potential of having fibro added to treatments will hopefully allow patients to have insurance help pay. A month’s supply costs over $600 (more like $1,000 depending on dosage, which is very individual). This is not a ‘simple’ prescription to get. As it is an orphan drug, only one pharmacy sells it. Doctors must be registered with them to prescribe it, and patients must complete a short education course to be eligible for a prescription. As for the good side, having a ‘normal’ day, not feeling like I’m walking through life half-asleep and in pain, well, that’s what makes this news very welcome. – J

Regarding “Are You Kidding?”: I think E’s comment reflects very clearly the hysteria surrounding drugs in this country. CFS/fibro sufferers have too few options as it is. ANY drug that works and is well tolerated is a blessing. The demonization that this drug in particular has been subject to serves no one but over-zealous law enforcement and the drug companies. Sodium oxybate has been shown to be very well tolerated, safe and possibly even rejuvenative. Keeping it from treating anyone suffering from CFS/Fibro because a small irresposible segment of the population produced it themselves and abused it is just unfair. “Tweakers” will simply find a new drug to abuse, as they always do, and meantime its formula gets passed (with exclusivity enforced by the DEA at enormous tax-payer expense) to a drug company that charges $600. a month to some poor person for whom nothing else works and whose illness probably prevents him from working as much as a healthy person. Sodium oxybate became ubiquitous in the drug scene because is was easily and EXTREMELY inexpensively produced in huge quantity at home. How could it possibly cost so much to supply in small quantity to someone with a legitimate need? I believe sodium oxybate will continue to prove itself useful in medicine, and we should ask ourselves why we allow our government and industry to conspire to keep it from us, except at a huge ransom. Drug abuse in the community at large is a separate issue.

Have been on Xyrem for a year now and I am fibro free! I suffered for over 7 years with chronic fatigue and fibromyalgia. I went to every type of specialist you could think of and tried almost every treatment and medicine the doctors would prescribe in my mid 30’s I was on a hand full of meds. From prednisone, muscle relaxers, cymbalta and heavy duty pain meds. None of which would really help me but it would take the edge off some of the symptoms.I think out of all of them the lyrica gave me the most improvement but still was suffering. I noticed the colder weather did exacerbate my symptoms and living in central NY it is cold most of the year. So I relocated to FL. The weather helped some but still was suffering and on many meds.

Than I went to a Doctor a sleep specialist (one test I had not taken sleep study!) in the Tampa area who has done special clinical studies on Xyrem. He sent me for my sleep study and found I had narcolepsy! My brain does not produce the hormone hypocretin which helps put you into a deep restorative sleep. In this phase of sleep you body repairs and restores it also rids you body of toxins.So I have literally not slept for seven years even though I thought I was sleeping all the time. I was only able to go into a light phase of sleep. He informed me he has found a connection with a majority of his fibromyalgia/ chronic fatigue patients with some form of a sleep disorder. I am now pain and fatigue free!I do not take handfuls of medicine anymore. I only need the xyrem.I have my life back!

It did take time to learn and adjust how to take this medicine with close guidance of my doctor. I would say with in two months I was totally free of Fibromyalgia and fatigue and was able to stop all other meds I was on. My only concern is that not all doctors have the experience and knowledge on how to administer this medicine and it is not always tolerated well and may discourage patients who are not guided correctly and they may stop before they get the full effects.I strongly suggest a sleep specialist who is experienced with the drug and not a rheumatologist. – L


More Reports that Lyrica® (Pregabalin) Really Works – for a Subset of Patients

Re: Letter, “I couldn’t tolerate Lyrica”

Lyrica, a wish gone wrong. Lyrica, a sister drug of Nuerontin, is used for the treatment of neuropathic pain and epileptic seizures, as well as pain arising from trapped or compressed nerves, drug-induced nerve damage, Diabetic Neuropathy, Post-Herpetic Pain, Phantom Limb Syndrome, Peripheral Neuropathy, and Fibromyalgia. All this being said Lyrica does work, but the unpleasant side effects of feeling like a drunk, especially when your trying to function during the day, does NOT work! If your elderly you run an additional risk of falling and breaking a hip!! There is no point of reducing the dose for it doesn’t work effectively, so for me, and many others, Lyrica was just another wish that never came true……. – J

Lyrica worked for me. All drugs have side effects, and different people react to each of them differently. A good doctor will work with you to find the drug or combination that works for you. I’ve been through heavy narcotics and a number of other drugs. A year after Lyrica was approved for fibromyalgia, my doctor suggested I should go on it. So I did. Without any doubt, Lyrica has changed my life. My sleep and pain were drastically improved immediately. I do not feel drunk when I use it. Nor have I gained any weight. It was like a miracle for me, though there is still no doubt in my mind that I still have fibromyalgia. I still have symptoms, but they are so much more manageable now. – P


On Cannabis & New Pain Research

Re: The UC San Diego research report on cannabis as an analgesic

They are so very right. It does help a lot for people with fibro and other pain syndromes… It does help with pain, mobility, relaxation, etc. But tell me how the heck you are supposed to go to your doctor and tell them this works for you when they test for it and can banish you from their practice for having it in your system!… No, I don’t do it, but I would if my doctor would OK it. – A

How could I be so stupid? I’ve been a pot addict for almost 40 years. I live in California where it’s legal to use it for pain and I have a prescription. I stopped using pot 4 years ago to see if it may be having a negative affect on my Fibromyalgia that I’ve had for 25 years. I can’t believe how much better I feel now. How could I have been so stupid for all those years? I knew that for every up there is an equal and opposite down side. The down side of cannabis is not well understood because it takes almost two months for the withdrawals and side effects to subside and three months for the addiction to go away. That’s well beyond the time-frame of the UC San Diego studies. – R
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 healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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3 thoughts on “From Our Readers – Comments & Suggestions 03-24-10”

  1. pepstein says:

    It will be great if and when Xyrem is approved for fibromyalgia. I have used it for some time now. It was the only drug that really helped without all those awful side effects found in all those other drugs that are supposed to help.

    What I don’t understand is the cost. Why would something that was sold in health food stores for such a small amount of money before being banned, now cost upwards of $1500 (depending on your dose)? You would think that after being on the shelf for so many years that the cost would not have tripled in the last 4 years alone. Part of it might be that Jazz Pharmaceuticals doesn’t have any competition, being the only manufacturer of sodium oxybate, and I know they have had intensive clinical trials leading to the FDA application for approval, but really, tripling the cost of a drug in only 4 years time. Something is wrong here. Perhaps if drug companies didn’t try to attain billions in profits, so many more people could be helped by them. –

  2. buckeyegal46 says:

    My sleep doctor prescribed Xyrem, and taking it was one of the worst experiences of my life. I had a weird reaction and was unable to sleep for days. I slept no more than 2-3 hours per night and gave up after a week of waiting for the drug to help me. Users should be aware of this possible side effect.

  3. Svette_Palme says:

    In response to the post here about smoking pot for Fibro –

    I also smoked pot for many years, and I have Fibromyalgia. I quit it for two years and then started again 6 months ago.

    I stopped on Friday, two days ago.

    I had a little difficulty last night, but tonight I am pretty much over it. I do not believe it takes “3 months to get over the addiction” – that depends on one’s thought processes and emotions.

    So, as usual, it is very unique to the individual what we feel when using, and quitting.

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