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From Our Readers – Comments & Suggestions 01-12-11

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Research Suggests Bacteria Involved in at Least Some IBS

Re: The trial indicating ”Antibiotic provides continuing relief for many with IBS without constipation” reported in this issue.

• Still more proof that IBS is not psychological. – K

• On antibiotic treatment for IBS. I had read the book out of our public library by Dr. Pimentel and recommend it for anyone wanting to be tested for SIBO (small intestine bacterial overgrowth). – H

Note: Dr. Mark Pimentel, MD, is director of the Gastrointestinal Motility Program at Cedars-Sinai Medical Center in Los Angeles. His book – A New IBS Solution, explains his theory that gases created by bacterial overgrowth in the small intestine cause symptoms in anywhere from 40% to 84% of IBS patients. He suggests that probiotics such as lactobacillus and bifidobacteria can reduce but not eliminate the problem by “stimulating the cleansing wave mechanism of the intestines.” Further he believes stress might exacerbate symptoms – may even increase bacteria levels in the small intestine – but is not the cause of IBS.


Answering Your Questions About Interstitial Cystitis (Bladder/Pelvic Pain)

We [the Interstitial Cystitis Association website] just posted answers to three more questions on our FAQ page:

• Is low back pain common with IC?

• What do I do if my IC doctor will not treat IC pain?

• Is it safe for a man with IC to get a vasectomy?

Keep the questions coming – we’re here to help!

Interstitial Cystitis Association


More Nails in the Coffin of 1998 Vaccine-Autism “Study”

Re: “How the case against the MMR vaccine was fixed”

The January 5 issue of the British Medical Journal featured the first part of its expose of the bogus data which began the international scare over a supposed link between the MMR vaccine (for measles, mumps and rubella). Quite simply, data for the first so called “study,” published February 28, 1998 by the Lancet, “was manufactured at a London medical school.” – L


Financial Assistance for Lyme Testing

I just saw this link regarding financial assistance for those [low income] getting lymie testing: http://www.lymetap.org – G


New Trans-NIH ME/CFS Listserv – Joining to Demonstrate Interest

The Trans-NIH (National Institutes of Health) ME/CFS Working Group is constructing a new website [http://orwh.od.nih.gov/cfs.html – Note: if it is still under construction, check back later], and has already established a listserv for sharing news to all who sign up. The NIH has announced it will be tracking the number who sign up “to gauge interest,” so ME/CFS patients & advocates do join all those who’ve signed up already. Following is the announcement from the Chair, Dr. Dennis Mangan. – J

* * * *

Dear ME/CFS investigators, patients, advocates, writers, families and friends:

An email listserv has been set up to enable information to be sent to you quickly and more frequently regarding NIH ongoing activities associated with ME/CFS research and the NIH ME/CFS Working Group activities. This will include informing you of new postings on the soon-to-be-released NIH Working Group website (http://orwh.od.nih.gov/cfs.html, still under construction).

If you wish to subscribe to this free list service, please do the following:

1. Send an email from your preferred computer address to LISTSERV@LIST.NIH.GOV. The text of the message should read: SUBSCRIBE NIH_MECFS_WG-L {YOUR FIRSTNAME AND LASTNAME}

2. You will then receive an email and must confirm your desire to join the list. You can unsubscribe from the list at any time. Please note that this is an information only email list service… not an Internet discussion forum.

All the best, Dennis

PS: please share this announcement with others on your email lists who might wish to join!

Dennis F. Mangan, PhD
Chair, Trans-NIH ME/CFS Research Working Group
Senior Research Advisor
Office of Research on Women’s Health, OD
National Institutes of Health
6707 Democracy Blvd., Suite 400
Bethesda, MD 20892-5484
Tel: 301 496-9006


A List of Suicide and Mental Help Hotlines/Websites in the US, UK, Canada

Following are hotlines in the US and UK – Edited to add UK information and to reorganize website info. – N

In the US: Here is the toll free number for the National Suicide Prevention Lifeline
1-800-273-TALK (8255) or call 911

In the UK: HopeLine UK:
0800 068 41 41 or call your emergency number equivalent to 911 (I think it’s 999 there)

Also, here are some really good websites for discussion, information and help.

www.suicideinfo.ca/ (in Canada) This site also has a quick-link to phone numbers of all the Crisis Centres in the country.

www.yellowribbon.org/ (US, teen suicide prevention experts)

www.save.org/ (Suicide Awareness Voices of Education)

www.papyrus-uk.org/ (in the UK) Prevention of Youth Suicide

From their website: “The National Suicide Prevention Lifeline is a 24-hour, toll-free suicide prevention service available to anyone in suicidal crisis. If you need help, please dial 1-800-273-TALK (8255). You will be routed to the closest possible crisis center in your area.

“With over 120 crisis centers across the country, our mission is to provide immediate assistance to anyone seeking mental health services. Call for yourself, or someone you care about. Your call is free and confidential.

“Para obtener asistencia en español durante las 24 horas, llame al 1-888-628-9454

”Why should I call the Lifeline? From immediate suicidal crisis to information about mental health, crisis centers in our network are equipped to take a wide range of calls. Some of the reasons to call 1-800-273-TALK are listed below. – Call to speak with someone who cares – Call if you feel you might be in danger of hurting yourself – Call to find referrals to mental health services in your area – Call to speak to a crisis worker about someone you’re concerned about.”


Site About Kids & Teens with ME/CFS

This KidsHealth subsite [sponsored by the Nemours Foundation] includes a 4-page article with basic, understandable information about ME/CFS in kids and teens. See page 4 on “Helping Your Child Cope.” Information in Spanish too. (
http://kidshealth.org/parent/system/ill/cfs.html). – D


Restless Legs Syndrome – In the Brain, Not Nerves in the Legs?

Re: “Where Is the Core of the Volcano? The Undetermined Origin of Primary Restless Legs Syndrome”

I found this article intriguing. While I don’t know the validity of the study it makes me wonder if there are studies on FM getting the same results as the RLS article. I have always thought, as well as my rheumy/neurologist, that my RLS is related to my FM in that it is a sensory issue and not an autoimmune disorder.

Maybe this is why I don’t get relief from topical pain creams. It could also be why some of us who don’t have an autoimmune disorder with FM do not find Neurontin helpful for our symptoms? Note: I put “maybe” and “could” as this is my personal opinion from my readings/research and what I’ve experienced as well as what my doctors are saying about my particular case of FM/RLS.

Please note that my statements have not been evaluated by the Food and Drug Administration and are not intended to diagnose, treat, cure or prevent any disease. 🙂  – G


Recommending a Spiritually Inspiring Website

Found a great place! A Website: www.gratefulness.org. So far I’ve found music, ‘A blessing for water’ with Native American instruments (sounds like Hopi flute). … I found a place to light a candle, helping me grieve my cousin’s death this month. Leaving a message with love for him by the candle.

There is a large emphasis on caring for the environment, and celebrating people who have made a difference for good in this world. It is international, multi-religious. I was so stressed out yesterday, and after spending time there, came away as if from a sanctuary, calmed and strengthened. I’m still exploring! This web-site is founded by David Steindl-Rast, someone whose writings have had a great influence in my life. – W


Medicare Changes in Payment for Injected Medications May Affect You

Please be aware of Medicare changes and ask questions ahead of time so you are not stuck with a lot of costs [for migraine patients especially].

My neurologist informed me of a new change to Medicare that very few of his patients know about. As of January 2011, if a doctor injects you with any type of medication – you are responsible to pay not only the office visit charge/co-payment, but also you must pay 20% of that drug/medication you are injected with no matter what plan you are on. I am on a Medicare Advantage HMO plan and for a while have gotten occipital neural blocks for my migraines and all I have paid is the office visit co-pay. As of January I will have to pay the office visit co-pay PLUS 20% of the cost of the injected drug/medication.

Impact to you: If you are on a Medicare HMO plan or other plan, you will have to pay 20% of any medication injected.

My neurologist told me that Medicare is considering approval of Botox for migraines. That would mean that anyone with 15 or more migraines a month would be eligible even if you are on a Medicare HMO. There is a chart my neurologist already has for all approved injection sites for use of Botox for migraines, and there are many. He said he will probably know by February if Medicare has approved this. BUT, the cost of Botox for this is about $800 (at this time and it could go up) so you could be looking at paying your office visit and then 20% of the Botox cost even with an Medicare HMO.

Impact to you: So if you see the doctor and he injects you with the injectable Imitrex migraine solution, you are responsible for the cost of your visit, and then 20% of the Imitrex cost.

Vaccines are up in the air, and my neurologist did not know if you will get the office visit for free, then have to pay 20% of the vaccine cost. – T


Mentally Stimulating Sites That Are Fun and Free

Watching both a father and an uncle live with Alzheimer’s, I have made a commitment to remain, in my retirement, as mentally active as possible. Everything I have read indicates that mental stimulation is our best bet to avoid or delay the onset of dementia….

On my website [Use it or Lose It!] I have begun a collection of links to other sites which provide stimulating activities. If you should know of other beneficial sites which I can list, please let me know and I will add them. This is not a commercial site, and it is not a money making activity. My hope is simply to facilitate mental stimulating activities for myself and for others…. There are two other activities that I use daily:

• An activity that I have grown to enjoy is a computer language called LOGO. My website contains information about LOGO and a tutorial. LOGO is a part of the curriculum in many schools as a tool to establish, at an early age, the brain circuits of higher mathematics. I taught this while I was a teacher, and I still enjoy creating graphics using LOGO today. LOGO allows those of us with no artistic abilities to create beautiful graphics using planning, perspective and basic math. And the LOGO program is free!

• Another activity that I can do is basic html. Basic html is the primary computer language for website development. Html involves perspective and planning, as well as memory skills. My website has a tutorial on html [and instructions for getting a free website]. While it is more difficult to construct a web page using basic html rather than a composer, this is the whole idea. And I get a certain pride of creation which the composers do not give. – D


Note: This information has not been reviewed by the FDA. It is general 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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