Friday Chronic Roundup: 8/8/08

PCOS/Insulin Resistance/Diabetes

• Can insulin resistance lead to cancer?
• How good is metformin to induce ovulation?
• The role of certain receptors in insulin resistance and "obesity"
• A certain tissue may contribute to insulin resistance
• Byetta may reduce risk of death
  

Interstitial Cystitis/Vuvlodynia/Pelvic Floor Dysfunction/IBS

• The National Institute of Diabetes and Digestive Kidney Diseases and NIH publish on urologic and kidney disorders
• IBS or fructose malabsorbtion?
• IC and pelvic pain syndromes
• The use of TENS units to ease vaginal pain
  

Fibromyalgia/Chronic Fatigue Syndrome

• The possible significance of CFS and Fibro
• Acupuncture to treat fibro?
• Fibromyalgia: unreal or misunderstood?
  

Allergies/Asthma

• Global warming linked to allergy problems?
• Wyndham Hotels to offer allergy-friendly rooms and meeting spaces
• What molecule holds the key to allergic reactions?
  

Mental Health

• Type I diabetes patients also are at risk for depression
• Exercise does not alleviate anxiety and depression (?????)
• Common signs and symptoms of depression
  

A Great New Resource: Cure Together

I have gotten a good deal of feedback (all positive) about our guest bloggers on TBC. My only repeat-guest-blogger (at this time anyhow), Alexandra Carmichael, has been instrumental in the creation of the new site Cure Together. I was lucky enough to get a sneak peak at it last month and am excited that I'm now able to write about it to you.

Cure Together is self-described as "a place where patients and researchers work together, doing open source research to find cures."

I can say many things about this site, but I'm going to be brief to allow you to mosey on over there and check it out yourself. This site is sorely needed. Too often there is a disconnect between the researchers and the people affected by the research. On Cure Together, as a patient, you can track your health, connect with other people that have your condition, and not only participate in research, but help fund it as well. This is just a brilliant platform! Now when we have the opportunity to donate, we can donate directly to the research affecting our lives.

Currently Cure Together focuses on vulvodynia, endometriosis and migraines--all painful, time consuming, and emotionally difficult chronic conditions.

So stop reading this and click over there today. Sign up and get involved! The only way we can hope to achieve progress is to make that progress ourselves.

DON'T FORGET: Online Vulvodynia Support Group Tonight at 8

Sponsored by Life With Vulvodynia. Check it out. I was really planning on making it, but it looks as if I might have double booked myself. But I encourage you to go there and I give a standing ovation to Quinn for setting this up.

If I'm not there tonight I'll be there next time!

Alone No More: An Online Vulvodynia Support Group

The lovely owner of Life with Vulvodynia has started an online support group for those of us with vulvodynia. The first "meeting" (chat room) is Thursday, July 17 at 8 p.m. EST. Check it out here.

Be there or be square.

Friday Chronic Roundup

There's a lot of stories out there this week. Enjoy!

PCOS/Insulin Resistance/Diabetes

• Another Inflammation Theory alert--researchers ID the inflammation fighting pathway in fat cells.
• The prevalence of Metabolic Syndrome in women of "child bearing" age.

Interstitial Cystitis/Pelvic Floor Dysfunction/Vulvodynia

• A fun and good quick and dirty primer on vulvodynia for those who are searching for a reason for their pain.
• An overview of incontinence and the physical therapy versus surgical treatments.
• A chronic pain in the vage--at Feministing.
• A surgical robot helps solve Pelvic Floor Dysfunction.

Chronic Fatigue Syndrome/Fibromyalgia

• A new fibromyalgia drug enters phase III of testing.
• Is it CFS or is it electrosensitivity?

Other

• When are antibiotics necessary to treat Lyme disease?
• Gluten free products are gaining popularity.

Study Opportunity

The National Vulvodynia Association is conducting a large-scale study of women who have pain with intercourse. The info is below.
--------------------------------------------------

Dear NVA Friend,

Below please find information on a national clinical trial that is currently recruiting participants.

Sincerely,

Chris

---

Christin Veasley

Associate Executive Director

National Vulvodynia Association

PO Box 4491

Silver Spring, MD 20914

www.nva.org

Is Intercourse Painful?

Clinical Study for the Treatment of Vaginal Pain

If you suffer from Vaginal Pain you may qualify to participate in a clinical research study.

This study is currently taking place only in the United States and participation will last approximately 18 weeks and will require approximately 8 visits to the doctor's office.

The following are requirements to be considered for the study:

- You must be 18-50 years of age

- You must be continuing to have periods

- You must be in a steady relationship for more than 6 months and having vaginal intercourse

- You must be willing to abstain from intercourse for 2 weeks

- You must use effective contraception

- You must be in general good health

To find out more about the study and locate a participating physician, please refer to the below listings and contact their office directly to talk to the study nurse about the study and if you may qualify.

If you qualify, you may receive: study-related medication, study-related lab tests, study-related exams and compensation for your time and travel.

STUDY SITES

Montgomery, AL

Montgomery Women's Health Associates, PC

Contact: Muray Marshall

334-281-1191; mmarshall@montgomerywomenshealth.com

Chandler, AZ

Star W Research

Contact: Stephanie Wells

480-732-7405; swells@womenshealtharizona.com

Phoenix, AZ

Precision Trials, LLC

Contact: Debbie Romesburg

602-931-4507 x 225; DebbieR@PrecisionTrials.com

Searcy, AR

SearcyMedicalCenter

Contact: Cindy Savinsky

501-278-2800 x 6789; csavinsky@researchsolutionscorp.com

San Diego, CA

San Diego Clinical ResearchCenter

Contact: Kellie Harden

858-793-7220; kellieharden@hotmail.com

Lakewood, CO

Physicians' Research Options

Contact: Victoria Webb

303-985-9100; Victoria.Webb@proslc.com

Clearwater, FL

Women's Medical Research Group, LLC

Contact: Nina Zaniefski

727-724-9730; ninaz@xxresearch.com

Hudson, FL

Clinical Research of Tampa Bay, Inc.

Contact: Linda Queen

352-263-3462; lqueen@tampabayrr.com

Largo, FL

Innovative Research of West FL, Inc.

Contact: Marianne Segal

727-584-6368; hm4hands@aol.com

Tampa, FL

Insignia Clinical Research

Contact: Holly Ruhlig

813-739-1174; hruhlig@tbwc.com

West Palm Beach, FL

Comprehensive Clinical Trials, LLC

Contact: Val Allen

561-478-3177; vallen@cctllc.net

Atlanta, GA

Atlanta Women's Research Inst.

Contact: Crystal Smith

678-867-9410; crystals@awhg1.com

Roswell, GA

Atlanta North Gynecology, PC

Contact: Randi Baill

770-992-2691; Researchrn1@aol.com

Boise, ID

The Woman's Clinic

Contact: Amanda Cambra

208-947-9805; cambraa@slrmc.org

Idaho Falls, ID

Rosemark Women Care Specialists

Contact: Lisa Clark

208-557-2927; lclark@rosemark.net

Champaign, IL

Women's Health Practice

Contact: Jan Dedrick

217-356-3736 x 370; Jan.Dedrick@womenshealthpractice.com

Grand Rapids, MI

Female Pelvic Medicine & Urogynecology Institute of Michigan

Contact: Beth Rogers

616-742-5614; rogersbv@gvgobgyn.com

South Bend, IN
Northern Indiana Women's Health Research
Contact: Terri Stoll
574-280-3946; www.niwhr.com

Paw Paw, MI

Women's Health Care Specialists, PC

Contact: Michelle Padley

269-657-6189; whcsresearch2@yahoo.com

Brooklyn, NY

BoroPark Ob-Gyn

Contact: Lena Basilio

718-216-0667; lbasilio@premresearch.net

New Bern, NC

Eastern Carolina Women's Center

Contact: Amanda Corman

252-633-3942 x 485; ccrc@womensctr.com

Winston-Salem, NC

Carolina Medical Trials

Contact: Amanda Moore

336-794-0149; akikermoore@bellsouth.net

Winston-Salem, NC

Lyndhurst Clinical Research

Contact: Lisa Cumming

336-354-1076; research@lyndhurstgyn.com

Englewood, OH

HWC Women's ResearchCenter

Contact: Heather Groff

937-771-5103; hgroff@hwcwrc.com

Gallipolis, OH

Holzer Clinic

Contact: Laurie Wayland

740-441-3990; lwayland@holzerclinic.com

West Reading, PA

Advanced Clinical Concepts

Contact: Jan Petrie

610-929-9484; aclinical@advancedclinicalconcepts.com

Simpsonville, SC

Hillcrest Clinical Research

Contact: Becky

864-962-5146; becky@hillcrest-cr.com

Chattanooga, TN

Southeastern Clinical Research

Contact: Kim Norwood

423-778-6947; kimsnorwood@msn.com

Jackson, TN

The Jackson Clinic

Contact: Patient Recruitment

800-685-7633; study.info@scresearch.net

Memphis, TN

Adams Patterson Gynecology & Obstetrics

Contact: Patient Recruitment

901-255-2254; study.info@scresearch.net

Memphis, TN

Research Memphis Associates, LLC

Contact: Regina Bernard

901-507-2248; rbenard@wccmemphis.com

Austin, TX

Professional Quality Research

Contact: Teddy Brose

512-374-0677; tbrose@pqrinc.com

Corpus Christi, TX

Advanced Research Associates

Contact: Bonnie Gutierrez

361-906-9178; info@araresearch.com

Houston, TX

The Women's Hospital of Texas

Contact: Nelda Fraga

713-790-8500; Nelda.Fraga@hclhealthcare.com

Sandy, UT

Physicians Research Options

Contact: Peggy Genebach

801-352-9228; genebach@proslc.com

Salt Lake City, UT

Salt LakeResearch

Contact: Christy Christiansen

801-288-9778; cchristiansen@saltlakeresearch.com

Voices From The Body Chronic: Ray of Light After 10 Years of Pain

Ladies and gents, we have our first guest blogger! And what a good story she tells.

Today we'll hear from Alexandra Carmichael. Alexandra is the author of earth-change.blogspot.com, a serial bio-IT entrepreneur, and Taoist Tai Chi instructor. She lives with her husband, two daughters, and vulvodynia, in the San Francisco Bay Area.
---------------------------------------------------------------------------------

Ray of Light after 10 Years of Pain

I can say it - I have vulvodynia. For me that means I experience sex as an intense burning, like scraping a knife over a raw patch of skin or squeezing a watermelon into your nostril. Not fun, to say the least. And it's not just pain with sex. Tampons, jeans, riding a bicycle, and excruciating pap smears leave both me and my doctor in tears.

I was finally diagnosed last month after 10 years of pain, misdiagnosis, and emotional anguish. I saw six different doctors during this time who were baffled as to why I was in pain and how to help me. Finally my naturopathic doctor discovered that my estrogen level is lower than that of a post-menopausal woman, and I'm 31. I'm starting on an estrogen cream therapy to see if it helps. I'm hopeful, because the only time in my life that I didn't have extreme pain with sex was during both of my pregnancies, which suggests my vulvodynia may be hormonally linked. As I understand it there is more than one kind of vulvodynia, but it is still poorly understood by scientists.

I learned from the recent Vulvodynia Awareness Campaign launched by the NIH that up to 10% of women will experience some level of vulvodynia at some point in their lives. That's an incredible statistic for something most people have never heard of. We suffer in silence, and the personal stories we could share to learn and support each other are few and far between. It's just not the kind of thing you bring up at the weekly office lunch party. I decided to tell my story and put it out here, for what it's worth, hoping to help someone who may be lonely and afraid or inspire someone else to share their experience too.

Thinking back to when I first felt the grating, stinging pain, at the time I really didn't know what to think. I couldn't get past the feeling of being broken, the thought that this is not what sex is supposed to feel like. I didn't know where to turn. I remember asking my mom and my doctor if sex was supposed to hurt, and when they reassured me that it didn't, I felt myself crumbling inside. I got up the courage to go to a gynecologist, who very painfully probed me and told me to just relax and use lubrication. Another one put me through a battery of tests and told me all my levels were "within normal limits". A third doctor told me she was going to try to "open up a tight area" by burning my vaginal tissue with silver nitrate. Thinking it would help me, I let her do it on two occasions. It was all I could do to stop images of rape from filling my imagination. Needless to say, my symptoms did not improve. I read everything I could about vulvar pain, and tried simple home remedies like using very gentle detergents, modifying my diet, and wearing loose cotton clothing. No difference. I tried homeopathic remedies, reiki, and acupuncture. Still the same pain. I began to give up hope, and resigned myself to believing that this was just something I would have to live with for the rest of my life.

During this time, my motherly instinct grew so strong that it temporarily overcame the pain by sheer determination, and to my great relief it worked and we got pregnant quickly. We now have two beautiful daughters and are so grateful for them every day.

I remember learning that vulvodynia can sometimes improve after childbirth, but I actually had the opposite experience. In the past two years since my second daughter was born, the pain has increased. It also changed so that I now not only feel pain during contact, but also with normal activities like walking or taking a bath. The pain will flare up without warning and for an unpredictable amount of time. While not severe enough to impede my daily life, this new kind of pain did led me to seek naturopathic care, and I was so fortunate to find a wonderful, compassionate doctor who is working with me to reduce my pain. I also practice tai chi to help balance my body, mind and spirit.

I still have a glimmer of hope that I can live pain-free, but I must admit that the thought of pleasurable sex is just too far for me to even think about. Even if the physical pain went away, which I'm not convinced it will until we understand more about vulvodynia, I have so much psychological and emotional trauma to work through.

I am so grateful for my amazing husband who is supporting me through this. Vulvodynia really does affect both partners. We have been through the trenches together in so many ways, which has brought us as close as two people can be. We love working together, as scientists and entrepreneurs, and want to do whatever we can to help solve this puzzle and reduce suffering for me and millions of others in pain. Sharing my story is the first step.

Thanks for reading.
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If you are interested in telling your story or developing an interconnection between chronic pain and chronic illness and outside forces or influences, please e-mail me at thebodychronic@gmail.com.

My Allergies Are Killing Me

A lot of people say this, not many people truly know how it feels. Allergies, for someone with chronic illness or chronic pain is like rubbing salt in an already gaping wound. It stirs everything up, makes you even more off balance, and creates pain where pain was previously subdued. Nothing, short of a major dose of Benadryl that'll knock you off your socks, will really settle this down.

I am more aware of these things now that I'm aware of my chronic illnesses. I can see the relation to the response to my allergies and the pain I feel.

So it inspired me today (because of my lack of focus and a quiet office) to do some internet research into allergies and chronic illness. I've posted about this before on TBC in relation to IBS (here), but I think the problem is more widespread than just IBS. In my research, though, I found nothing more concrete than what I suspect and nothing to really write home (or here) about.

I'm going to make a pronouncement here: I believe allergic reactions may very well be the root of all chronic illness. I believe that this will be discovered in 5-10 years.

Unfortunately, I'm not so positive about a solution. Sure we can all take a bunch of antihistimines, but who wants to walk around life in that state? There must be something more genetic in those of us with these conditions that can be modified or treated or something that would lead to the alleviation of pain and suffering.

So let's talk about allergies. What are they, and how do they work?

The Cleveland Clinic has a good basic overview of allergies in general. There it defines allergies as:

the immune system’s incorrect response to a foreign substance. Exposure to what is normally a harmless substance, such as pollen, causes the immune system to react as if the substance is harmful. Substances that cause allergies are called allergens.

It goes on to describe an allergic reaction:

A hypersensitive response, or allergic "reaction," is the result of how three factors interact with the body:

1. The allergen — Allergens include pollen, mold, dust mites, certain foods, latex, animal dander, and others.

2. Mast cells — Although mast cells are found throughout the body, most reside in connective tissues such as those of the skin, tongue, the lining of the nose and intestinal tract, the lungs, and upper airways.

3. Immunoglobulin E (IgE) — IgE is an allergic antibody, a type of protein made by the immune system to recognize and fight specific body "invaders." IgE coats the surface of the mast cells in tissues.

So we have basic definitions that tell us this: (1) Allergies cause a reaction of the immune system; (2) that reaction is due to a sensitivity and, thus, is an overreaction.

Some chronic illness allergy connections are easy to see. For example asthma is almost always exacerbated by allergens. But some aren't as easy to see. There is proof of their existence though. There have been studies done on the relation of allergies to interstitial cystitis. There's a pretty strong connection between allergies and migraines. An allergic reaction to candida in the body, or yeast, can be one of the root causes of vulvodynia. In fact, insulin resistance may truly be an allergic reaction in and of itself. There is research to show that PCOS is an allergic type reaction.

So tell me...if allergies are the cause of INFLAMMATION...and allergies are all common to these conditions, don't you think there's an inflammatory connection?

Just some biased and unprofessional opinion on it...