From Our Readers – Comments & Suggestions 08-05-09

New Drug & Supplement Interaction Checker Website

I just found this site yesterday and it’s pretty good. It gives you info on the drugs you’re taking, interactions, patient reviews, etc. I like it. ( – D


Is SAM-e an Option for Mood Support?

Q: I’ve always suffered with dysthymia – a minor depression which no antidepressant has helped. Today in a health food store I noticed a product called natural SAM-e that “helps with depression” – though literature only mentions liver, brain, and joint function. Do you know anything about this helping depression? – T

A: Most sources of information about SAM-e that you’re likely to find online mention three reasons people may use it as a dietary supplement – potential support for osteoarthritis inflammation and pain; for liver function; and for mood. SAM-e is an amino acid that the body forms naturally (S-Adenosyl Methionine) from ATP (the fuel that normally functioning mitochondria produce in each cell) and the essential amino acid methionine.

Among its other jobs, SAM-e is needed for the synthesis of neurotransmitters, and the thinking is that it may support mood by increasing availability of the important mood-related neurotransmitters dopamine & serotonin. In Europe SAM-e has long been considered a possible nutritional alternative or adjunct to certain SSRIs – pharmaceutical drugs that increase serotonin levels by inhibiting its natural dispersal. (See for example the abstract featured in this issue – “Adjuvant use of nutritional and herbal medicines with antidepressants…”)

By the same token, people with bipolar disorder or Parkinson’s are advised to avoid supplemental SAM-e to avoid any contribution to excessively elevated mood (mania).


Good Information on Fatty Acids

Re: “Essential Fatty Acid Deficiency – Signs & Symptoms, Treating vs. Testing,” by clinical nutritionist Blake Graham

Good information on fatty acids. The article by Dr. Leo Galland [to which the article links] is also fascinating, particularly the case studies. These show highly individual reactions to essential fatty acids (EFAs). It appears to be very worthwhile to find the best combination for each person. I really don't have the money to spend on more testing, so will start with the self-treatment approach which Graham discusses here. One thing – adding large doses of oils to the diet may trigger diarrhea. Some of us may need to start gradually.

Note: See also the article in this issue titled “Cardiologists conclude omega-3 fish oil’s heart benefits justify recommended daily intake guidelines”


July 30 Presentations on Lyme Treatment Guidelines – Free Video

On July 30, the Infectious Disease Society of America hosted an all day hearing allowing presentations to its Lyme Disease Review Panel on information relevant to the IDSA’s controversial 2006 Lyme Disease Treatment Guidelines. The 16 presenters were a “who’s who” of Lyme doctors, researchers, and patients – explaining often contradictory and passionate views on the subject.

You can click on links to view the documents, statements, and slide presentations from any of the presentations – or just view the archived videos – at the IDSA site.

The IDSA says it expects to issue a final report on its findings by year-end 2009. – J


The Issue of Stealth Pathogens and Blood Donation

Re: “Transfusion-transmitted Babesia microti identified through hemovigilance”

Another reason for none of us to give blood. Who knows what all we have? This concerns Babesia, considered a tickborne disease, but easily transmitted thru blood transfusions. I think they should've included a warning for those with compromised immune systems… but think about all the other stealth pathogens that are hard to test for in us. – V


Comments on Dr. De Meirleir’s H2S Theory of ME/CFS

Re: “London Press Conference: End of an Era of Medical Negation”

So what? As with countless other ME/CFS "breakthroughs" in the past 20 years, this is a big "So What?" for ME/CFS patients. Even if H2S is at the root of the problem – and that is a big "IF" – where is the answer to the problem? Where is the therapy that will alleviate the suffering? To me, this smacks of an attempt to make money off of patients, rather than being a legitimate breakthrough. I hope I'm wrong. – D

Overall, this makes sense. This analysis covers most of the known contributors and puts them in a nice sequence and relationship. It fits with my experience in many ways. As far as CFS not being progressive, I would point out that most if not all of us have tried various methods of intervention. I think that these efforts on our part skew our experience. When I went off all forms of intervention I rapidly went downhill, and back to a bed ridden state. Also our personal experiences may differ depending on where in this cycle we have chosen to intervene. Very intriguing, and worth a second look. Not too happy with the prion concept. That is one scary beast! – C

ME does not always progress. Dr. De Meirleir indicates that ME is a progressive disease. This is not my experience. I never progressed beyond a certain point, which is, basically, the point at which it started. From there I improved, though very gradually, over about 9 years. I was never bedridden. From others, I get the same impression, namely that you come down with your worst scenario and that most people recover from there on…. Surely, he is not describing the usual, normal course of this disease?

ME as a progressive disease. I think the point about ME being a "progressive illness" is not related to the fact that symptoms slowly get worse and worse. They obviously don't. We all know they wax and wane. The progressive nature of the illness involves damage to organs like the heart which are harmed a bit more each time you have a relapse. – A

ME/CFS is not one illness. The current theory is that there are many different subtypes in what is currently known as ME/CFS. Some have a distinct flu-like onset with neurological sequela, sore throats, etc, while others have a gradual course, no sore throats, etc. Each of these is likely to be a distinct clinical entity, similar to a bag of Halloween candy. Kisses, Crunches, peanut-butter cups, all have chocolate in common, comparable to fatigue in our cases, but all are distinct from one another after you look past this common denominator… – B

Agree or disagree; doesn’t matter. I'm so very glad that Dr. De Meirleir has said what he's said, created the tests he's created, and done it the way he's done it. Even if it only applies to some of us, he's said some things that can maybe scare the public enough to listen to sense more than to the accountants. It's contagious, it's awful, it's progressive, and it can be fatal. Instead of trying to argue or nit pick, we should all applaud him for the help he can potentially give and then say that it's not the end of it all, so we'll keep on going. That's how change happens. By keeping on keeping on, no matter what, knowing that someone else will pick up the ball when and where we leave off. we didn't get here by ourselves, and the world won't end when we go. If we do what we can, no matter how little, at least we've tried, and our hearts have been in the right places. – S


Cholesterol Lowering Statin Drugs and Pain/Harm to Muscle Fiber

I see that you sometimes speak of the myopathy [muscle soreness/pain] that accompanies the taking of statin drugs. I think it might be interesting to understand properly what causes this. Most people say it is the reduction in CoQ10 production in the liver. However according to Dr. Barry Tan [an international vitamin E expert and researcher], he claims it is actually that these drugs inhibit protein synthesis and hence muscle proteins are affected. – Emma Taylor, Dip ION


‘Light’ Website All About Tips for Managing Daily Life

I have always suffered from a cluttered messy house. No matter how hard I tried I couldn't keep up. I could never understand how "normal" women did it and for me it seemed impossible. I discovered a few years ago, and man has it ever helped me. She had given me a plan I can actually follow on most days… it is all about "baby" steps. – S


National Fatigue Survey Launched – Please Take Part If You Have a Chronic Illness

The National Chronic Fatigue Survey ( – an internet-based survey of fatigue related to chronic illness – has been launched by the Fatigue Management Institute of Florida Institute of Technology.

The survey is designed to gather information on the nature and impact of fatigue associated with chronic medical disorders. The survey findings will be used to better describe the experience and severity of fatigue related to chronic medical conditions and will contribute to the development of improved techniques for managing fatigue.

The Survey is open to adults with a chronic medical condition, can be completed anonymously, and can be accessed at: The initial report of survey results will be posted on our website in March 2010.

Thank you for your assistance. – Prof. Thom Harrell, PhD, Fatigue Management Institute


What’s Happening with Ampligen®? – Notes on July 22 Hemispherex Teleconference

I listened to part of the teleconference [“Update on Global Pandemic Influenza Prevention/Treatment Initiatives”]. Some points I picked up which seem relevant…:

• Carter [Hemispherx’s CEO] does not expect FDA approval of Ampligen [an investigational immunogen drug] for CFS until fall. He states this is because the Obama transition is not complete and not all FDA appointments have been made. He also said the FDA has been "extremely busy."

• The company will be working on Ampligen with the CDC as well as the University of Nevada. (I think this means Hemispherx will be using the CDC's markers as further evidence that Ampligen works, and will take advantage of an NIH grant the University of Nevada recently received. I presume this would go through the Whittemore-Peterson Institute, though WPI was not mentioned.)

• The company is working on an intranasal form of Ampligen.

• …Ampligen is being considered as an adjunct to H1N1 (swine flu) vaccines. Japanese researchers have expressed the most interest in this. Much of the conference dealt with Ampligen and other company drugs as potential vaccine boosters.

• The company is gearing up for greater production of Ampligen, in anticipation of potential deals with vaccine makers. – M


Lyme Author’s Emerging Diseases Blog

Pamela Weintraub, a senior editor of Discover magazine and author of Cure Unknown: Inside the Lyme Epidemic, hosts the blog "Emerging Diseases" (patients at the crossroads of new disease and chronic ills) on the high-profile, hugely trafficked blog site hosted by Psychology Today magazine.

Her blog can be found here: Postings to the blog appear a couple of times a week and include discussion and dialog on Lyme and its coinfections, along with other diseases that are ill-defined, mysterious, contested, controversial – often unrecognized and written off by doctors as nonexistent, or all in a person's head. – V


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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