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From Our Readers – Comments & Suggestions 10-21-09

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The “Lymebrary” for Lyme Information

I love the name. They have an archive currently of 300 articles, but will be adding to it over time. The Lymebrary (www.lymediseasedigitallibrary.com) is free, all you have to do is register. – V

Note: There’s a ‘contact us’ for help locating what you want, and the Lymebrarian offers links to “offsite” Lyme-related abstracts in scientific journals (http://delicious.com/lymebrarian), starting with the most recent. No password is required for use of the offsite links.


Expect a “Seismic” CFSAC Meeting, Patient Advocate Suggests

The upcoming CFSAC meeting (Oct 29-30 in Washington, DC) is one I'd definitely participate in if my economics allowed me to. There are two tectonic plates of research:

• The Whittemore-Peterson Institute's and others’ sound biologic ME/CFS research,

• And the Reevesian/Jonesian theories and their extremely biased, pseudo science….

The fault line between the two tectonic plates may well cross dramatically, directly over the meeting room of the CFSAC. It is hard to predict how much seismic activity will shake the room, but let's hope the pressure is great enough that the health department can no longer avoid its responsibility to address ME/CFS as it should have been doing all along.

The presence of Dr. Dan Peterson presenting the Whittemore-Peterson Institute XMRV research [on October 29] in the face of the health department officials who have brought us such negligent performance over the years should no doubt be an event to remember.

ME/CFS is the only medical condition that NIH's funding projections show as being reduced for 2010. How will they be able to continue justifying such a negligent response to ME/CFS or the negative bias they have embraced in the presence of what Dan is likely to present?

Dan's presence at the meeting is one more example of why the entire ME/ CFS patient sector should support the Whittemore-Peterson Institute every way we can. They've proven that they are worthy of our support and they definitely need it.

Please don't let another day, another week, pass without making whatever contribution you can to WPI. Our dreams are possible if we get behind initiatives such as those being produced by WPI. – John Herd [See a profile of “John Herd – Long-time ME/CFS Advocate.”]

Note: To see the CFSAC meeting agenda, which indicates the times of key presentations and public statement periods (but no detail of discussion topics), and to ensure you will be set up to watch the live online videocast of the meeting, click here.


Fish Oil for Arthritic Dog?

The vet suggested I give my dog Extra Strength Tylenol for his arthritis. [Beware, this is actually highly toxic to dogs]. I didn't give it.) I tried glucosamine but he couldn’t even tolerate the lowest dose (diarrhea). I now give him omega-3 [fish oil] 1000mg (he is 100 lb) and he has very much improved. I hope this will be of help to some of you. Please post of anything else that you know of that helps. We also need alternative treatments for our best friends! – G

Note: To read a vet’s article on the subject of fish oil for dogs, see “Getting the Fat on Fatty Acids.”


ASPCA Database on What’s Toxic for Pets – No Grapes or Raisins!

A poster in the ProHealth.com Alternative Therapies Message Board suggested Googling for information on whether it would be OK to give grape seed extract to pets. I did that, and pulled up the ASPCA’s comprehensive database of information on the safety for animals of hundreds of substances, including human meds & supplements.

Looking up grape seed extract, I learned something new: Grapes or raisins can cause kidney failure in dogs. But supplements or other products which contain small amounts of grape seed extract apparently are not known to cause problems. – D


Iodine – A Little Really Helped Me, More Was a Problem

Re: “Iodine Deficiency – Important in Many Health Problems, Yet Underestimated and Misunderstood” by clinical nutritionist Blake Graham.

Early in trying to find out what the !@#! was going wrong with my body, my GP found that I was deficient in Iodine … so he put me on a liquid Iodine supplement with instructions to increase the dosage each week until at a maximum level & then maintain that until the next 6 monthly check. Well … one drop was OK, two drops seemed fine & I started to notice the brain fog definitely reducing – I was impressed!

But as I increased the drops to three then four I also noticed that I could feel my pulse pounding in my head & it would increase with each extra drop each week…. I finally discovered through my own "Googling" that some people do have just such a reaction to Iodine & I am thinking that people with fibromyalgia – who can already be hyper-sensitive to any introduced agent whether chemical or herbal or food, would definitely be in that category… I just stopped taking the Iodine supplement altogether & thank goodness the next 6 monthly check showed that the level was back to an acceptable level – phew!

However, as I bake my own bread I do always add one drop of this Iodine supplement to the mix – just to make sure that both myself & my whole family are getting a tiny top-up, as I do recognize the health benefits of Iodine. – F


Iodine Deficiency May Be Cause of Low Stomach Acid

I can't help wondering whether low stomach acid can ocur w/iodine deficiency. I know that in iodine excess, stomach acid production increases to the point of being bothersome. At least that's what the Naturopaths who tried taking Iodoral [an iodine supplement] daily reported in The Townsend Letter several yrs. ago. So I'm working the logic backwards. – S


RA Patient – Sensitive to “Nightshade” Veggies, Helped by Low Dose Naltrexone

My RA is relatively mild, on the scale of things. However, I did discover through dietary challenge that I am nightshade sensitive. [“Nightshade” veggies include, for example, tomatoes, peppers, potatoes, & eggplant.] Removing that food group was very helpful in reducing my pain, redness, & swelling by over 50%. I did a lengthy baseline before embarking on the dietary challenge.

As a humorous aside, after one week on nightshade-free diet, I had a mini-freak out, wondering whether I was developing bone cancer … however, the "tumor" I'd noticed turned out to be a wrist bone that I hadn't seen for several years, due to generalized swelling that was starting to subside with dietary changes.

There are only a few research studies about the role of dietary intolerance in RA. Those studies find that 20% to 25% of RA sufferers seem to have contributing dietary factors, which vary from individual to individual. So it can be tricky to figure out if one has contributing dietary factors, and if so, what those might be. However, I would say, worth the effort.

I also have an FM diagnosis. Because I've not done well w/Rheumie approaches in the past, I struck out on my own & tried LDN [low dose naltrexone]. My arthritis, FM, and energy have been much improved since starting LDN in July, 08. My gait is so much faster & much more normal, even neighbors & acquaintances have commented on the improvement. I haven't used my walker in a long, long time & rarely need to use my cane anymore – which before LDN was more often than not a necessity most days. – S


Doctors’ Views on Flu & Swine Flu Vaccines?

Q: What are doctors saying about the flu vaccines and whether/who should take them?

A: Perspectives seem to differ widely – with new information emerging each day. From what we’re seeing, swine flu is very contagious, and while some people become very ill with it, especially younger people, most do not. For those in good health, public health officials point out, the more who are vaccinated the better the chance of minimizing flu incidence in the community as a whole.

If you have a chronic disorder, the views of a few physicians who deal with such patients might be helpful. Most MDs would seem to agree that the decision for those with special health problems is best made on a case-by-case basis, by a physician with whom you share your personal health condition and history.

Some recent advice on the subject from ME/CFS/FM doctors includes:

Dr. Charles Lapp“What Should an FM or ME/CFS Patient Do about the Swine Flu?”

Dr. Charles Shepherd, Medical Advisor to The ME Association – has posted an Evolving Q&A on the subject.

Dr. Jacob Teitelbaum offers advice in his Oct 14 newsletter.

And of course all agree that doing what you can to optimize your general health is essential to better resist colds & flu. Many medical researchers now believe sunshine/vitamin D deficiency and vitamin C deficiency may increase susceptibility to infection during the shorter days of “flu season.”


Glaring Big-Box Lighting Made Me Ill

They will make you ill. I can't go in Wally World, Home Depot, or Lowe's without sunglasses on. I have gotten physically ill in all three stores before I realized it was the lights. Also if you have cataracts you need to be sure to wear sunglasses in these stores as well as in the sunlight. An eye doctor just recently told me this. No one seemed to know about the bright lights and cataracts. It makes them worse. She named all the stores above… Some of those lights are 10 times brighter than the noonday sun; that is why they bother even people who are not sick. – S


Site Explains Medical Tests & Tools, A to Z

This is a safe site to find good info to explain that medical test your doctor says you may have to take. It may be of use to some: “Medical Tests A to Z” – T


International Art Contest for Anyone with a “Rare Disease”

Since there are so many creative people here, I thought I would post this. I just happened to run across it. It is open to anyone with a 'rare' disease, or friends/family of someone who has one. "Rare Diseases" include CF/FM/ME as well as Lyme. (The 'rare diseases' list is huge, at: www.rarediseases.org)

The Kakkis EveryLife Foundation invites artists to participate in the first annual EveryLife Art Contest. For details go to www.kakkis.org/Contest/Contest.aspx – V

Note: Entries (digital images if by e-mail, or can be paper prints of images if sent by mail, no originals) must be received by 5 pm Pacific Time Oct 30. Mailed prints of images should be no bigger than 8.5 X 11 inches. Limit 3 pieces per artist, with a completed entry form to include a brief entry statement. There will be six Generous Grand Prizes, and smaller Outstanding Art prizes – all Visa Gift Cards. Age categories are: Children 5-11, Teens 12-17, and Adults.


LDRD Offers Links to Lyme Support Groups, Worldwide

The LDRD’s international Lyme support group database also offers contact information on groups that do not have a web presence. – K


Marketers See $2.5 Billion Commercial ‘Fibromyalgia Market’

I came across this market analysis on Reuters, predicting a huge increase in growth of the fibromyalgia market – essentially for prescription drugs. – M


XNRV-Autism Link One of the New, Unanswered Questions

I'm posting this link for those whose lives have been touched by autism but who may not frequent the ME/CFS/FM Message Board. [“Is Autism Associated with a Viral Infection?” by David Kirby, Oct 12 on Huffington Post] – 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 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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