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From Our Readers – Comments & Suggestions 08-26-09

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More Sources for Low-Cost Meds

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

[If you live in an area not yet covered by this network.] Try www.xubex.com for diabetes supplies: They have a discount program for those in need who can't pay co-pays. I get mine mail-order, they bill Medicare, and that's all the payment they ask for from me, as I do qualify for the complete assistance. As far as other programs, try www.NeedyMeds.com and check out each drug you need. Each drug company has different limits on assistance but you might be surprised at how much you can make and still qualify. Plus, NeedyMeds has discount programs too. Hope this helps – J


If You Can’t Tolerate Paint Smell & Chemicals

I found a milk paint website. The milk paint is now made for walls – called SafePaint (www.milkpaint.com/prod_safe.html). You can Google & find a dealer near you. Also they will send you a color chart or you can get “base” color and tint to what you need. You can mix it in your kitchen mixer (just add water).

I did not know most traditional paint outgases for YEARS! Yikes! I thought it was about 6 months. – P


MSM as a Treatment for Arthritis

With all the discussion about MSM, I wanted to learn more about it as a treatment for arthritis. I found this site (www.msmguide.com), which has a pretty good discussion about MSM – what it is, how it works, how it is manufactured, toxicity, study results, Q&A, etc. Just passing it along, for what it's worth. – D


Depression and Benefits of Omega-3

Re: "Omega-3 fatty acids in depression: A review of three studies" (which found omega-3 supplementation safely supported highly significant benefits for unipolar depression in adults & children and bipolar depression in adults).

This is very interesting to me, because just recently I have eliminated omega-3 and some selenium from my regimen. The last few days the depression has been creeping in, when for a good while, I was fairly stable. I have been treated for depression for 12 years. This is good reason to re-enter the omega-3 and selenium back to see what effect it will have. I have been on Cymbalta for aproximately 2-1/2 yrs. Thank you for the article. – L


Dr. Cheney’s New ME/CFS Protocol – Good Model for Future Therapies

Re: The update on Dr. Paul Cheney’s protocol (employing stem cell infusions but also “rebooting” the gene expression changes associated with ME/CFS and remedying “corrupted gut ecology.”)

The synergy between Dr. Cheney's groundbreaking work and regenerative cells is a great model for future development of therapeutics. Various forms of stem cell therapy, such as allogeneic mesenchymal stem cells, are anticipated to be approved by the FDA (at least for graft versus host disease) as early as next year.

Once there is a true "regenerative" product on the market, off-label use and 505b2 filings [route to FDA approval based on findings for a previously approved drug] will occur in other conditions. This is why I am very interested in Dr. Cheney's work combining regenerative cell populations together with compounds capable of addressing the underlying cause of CFS. – T


Have You Heard of This Drug?

Q: Have you heard of a new drug for Fibro or CFS – I think it's called Seville? I had my physical this week, and my doctor said he is working with this new drug that is supposed to help diminish pain and increase energy, and has had good results with people. He called it Seville or Sevilla – but I'm not finding much on it. So don't know if it's really new, or under a different name, or? Have you had heard of it? – S

A: Savella™ is the brand name for milnacipran. This spring it became the third drug to get FDA approval for symptoms of fibromyalgia (the other two are Cymbalta/duloxetine and Lyrica/pregabalin). Savella is an SSNRI that affects neurotransmitters in the brain. So far, as with the other two drugs, it seems to work well for some, not for others, based on the comments in ProHealth’s ME/CFS/FM message board. Specialists such as Dr. Mark Pellegrino say they sometimes have success experimenting with combinations.


Vitamin D-Curcumin Combo Good for Inflammation

Re: “UCLA finds vitamin D & curcumin (turmeric) may support immune cells' clearing of amyloid plaques found in Alzheimer's – more studies to come”

I live in North Carolina and love sitting in the sun for 15 minutes each day. I use turmeric in daily cooking. Both have helped my ankylosing spondylitis. – F

[Note: Ankylosing spondylitis is a painful autoimmune inflammatory arthritis known for affecting/fusing joints in the spine. Curcumin is a polyphenol compound found in turmeric that is known for supporting healthy response to inflammation, and vitamin D deficiency is associated with inflammation.]


Cognitive Exercise Games

I play www.gamesforthebrain.com. Designed to help cognition, supposedly. I really like Rotate and Rotate2. Dragger is also good. Almost meditative. And the memory games – Masterpieces, etc. I love stuff like this. It's almost worth being demented! – 😉 R


Statins and Fibro Don’t Mix

Re: “Cholesterol Lowering Statin Drugs Cause Muscle Pain, Destroy Muscle in Many Patients”

I too was prescribed statins, for triglycerides, and the cure was worse than the disease! I felt so horribly achy and the muscles were just not working, and this was immediately after starting Crestor.

I told my MD that this was making me have these symptoms, and she said it must be the fibro acting up. Well, yes it WAS the fibro acting up, but it was because of the statins. My MD put me on two other types of statins, and believe me I couldn’t wait to get off of them. I stopped them altogether, on my own, and what a remarkable difference!

I started taking more minerals and vitamins (antioxidants) and I never will take another statin again. I changed my dietary habits just a little bit, and it is so much better. I inherited the triglycerides, so I am careful of what I eat and I am very faithful to my vitamin/mineral regimen. – B


Statins Deplete CoQ10

Statins deplete the body of coenzyme Q10 (ubiquinone), which is an important supplement in many conditions, including CFS/ME. Most side effects of statins can be prevented by taking Q10.

If supplemented with Q10, statins can actually be helpful for people with CFS/ME. Because of their anti-inflammatory properties they're used to treat for example, MS. This is why they're also included in my book Reviving the Broken Marionette: Treatments for CFS/ME and Fibromyalgia, even though they're by no means a first-line treatment. – D


The Emerging Science on Fragrance-Healing

Re: “Fragrant plant & fruit scents repress activity of more than 100 genes involved in sustaining stress response”

Thanks for the article. It's interesting research, indeed! I've long practiced inhaling scents from flowers as a wellness therapy practice. It's nice to see the practice studied scientifically. – Laurie Lacey (www.naturalhealingtalk.com)


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 Therapies 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 any 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 Therapies Board. – Holly

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 with your professional healthcare team.

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