Danbury Hospital Readies Lyme Registry

DANBURY -- Take one Lyme disease case. Multiply that by a thousand or more, and you may be able to glean some vital information about this complex disease from all the gathered information.

That's what Danbury Hospital plans to do, beginning early next year, when it opens its Lyme disease registry for the region. But for it to work, the public must be willing to sign up.
"We really want to engage the Lyme community,'' said Dr. Ramin Ahmadi, the hospital's director of graduate medical education and research. "If the community supports it and participates in it, it will be wildly successful. If it doesn't, the project won't go very far.''

The hospital announced in February that it planned to create the registry, funded with a gift from Dale and Laura Kutnick, of Redding.

Since then, Ahmadi said, the hospital has gone through all the complicated work needed to get an undertaking this complex off the ground. The hospital's own institutional review board, which rules on research projects, had to approve it. The project's leaders then had to find ways to link it with the hospital's electronic record system.

This work Ahmadi said, established the methods the project will use to protect the privacy and anonymity of the people who enter their case histories into the register. "The hospital has been very concerned with patient protection and patient rights,'' he said. And the project had to find a site away from the hospital campus, to house the project's office and laboratory. Ahmadi said this laboratory would be dedicated to research. "We will study Lyme disease, but not just Lyme disease,'' he said. Ahmadi said the project will require that any patient involved with the registry have a doctor's certification that the patient has been diagnosed with Lyme disease.

However, the registry won't ask people to have a positive blood test for Lyme before joining the registry. For years, Lyme disease advocates have complained that because blood tests for Lyme can be inaccurate, depending on them as the sole diagnosis is highly unreliable.
Jennifer Reid of the Ridgefield Lyme Disease Task Force said requiring a doctor's report confirming Lyme disease is a good thing, since it relies on the observation of clinical symptoms, not just blood tests.

Reid said the participation of the Lyme disease patients in the area, as well as advocacy groups, will depend on how well the hospital explains the objectives of the registry. "What we all want to hear is how the registry will be designed,'' she said. "But we all understand the need for great research into tick-borne diseases. This is a very good opportunity to do that.''

Contact Robert Miller
at bmiller@newstimes.com
or at 203-731-3345.

Christmas Shopping Made Easy!

Now that I am feeling well enough to work again I have produced enough work to put on Etsy. You can now purchase my silk scarves, ties, limited edition prints, paintings on silk, silk ornaments and art magnets online at Etsy.com. I also list my studio seconds at very low prices for those on a budget but they sell quickly so check back often!

Here is the link to my Etsy shop: http://www.etsy.com/shop/silkartisan buy online, pay via Pay Pal or credit card and I will ship your purchase right to your door!!!

There was a time when I thought I would never be able to create silk paintings or scarves again but my health is getting better every day. For the first time in years I believe I will beat this Lyme Disease!!!! I am sending you all wishes for a happy and healthy Holiday Season!!!!

Two Charity Aucions I have donated to

It feels really good to be back to work in my studio and to be producing new work. I recently donated some of my artwork to 2 different auctions.

Auction nuumber 1:
I have donated 2 prints to the “doing our pART” auction to raise money for the Vermont Food Bank . This auctuon is the Vermont Arts Council’s second online art auction to benefit the Vermont Foodbank.

Last fall, 80 artists and arts organizations stepped to the plate by donating goods and services to the event. When the bidding closed, $10,254 in art had been sold and the Vermont Foodbank received 100% of the proceeds.

The contribution equaled 15 tons of food, or approximately 27,000 meals for hungry Vermonters.Unfortunately the Foodbank’s need is just as great this year--one in eight Vermonters is currently tapping into their services. The online auction comes at a time when many Vermonters are feeling anxious about the approaching winter months. With the high costs of both food and heating fuel, many people will be forced to choose between keeping their houses warm or putting a meal on the table.

To that end the Arts Council is inviting artists, artisans and arts organizations to contribute to an online auction. It will take place from November 27 – December 4, 2008 and 100% of the proceeds will benefit the Vermont Foodbank.

You can see my prints at this link http://www.cmarket.com/auction/item/Item.action?id=100191995

Auction #2:

I have donated a scarf to the SDA auction. The Surface Design Association has nearly 4000 members worldwide. Each member creates textiles, paper, art, etc in his or her unique style. Each scarf, shawl, DVD or book in this auction has been created by the artist for this auction.

The Surface Design Association auction supports the Creative Promise Awards, conference scholarships, various SDA grants, and additional member benefitsUntil November 15, the auction will be open with fabulous scarves, shawls, workshops and books for you to bid upon.

You can see the scarf I donated here: http://www.cmarket.com/auction/item/Item.action?id=98136651

Letter to a Friend

A friend wrote me and asked me how I cope and stay so positive (which I don't always manage to do) and I answered her in the letter below. I will share it here in hopes that it will help others who are suffering also.

I have been struggling for many years. My known tick bite date was 9 years ago but we think I may have had it even longer than that from a tick bite that was never found.

I understand what you are going through and I pray you find healing. I am so glad you have your faith. I don’t do so well with “ organized religion” these days but my faith in God is what sustains me. It is not easy and no one understands, not really. Most think we are whiners but it is important to be vocal because it saves lives when other sufferers know they are not alone.

I have had to use a cane and even a wheel chair at times so I know how you feel about losing mobility. You and I need to focus on gratitude, what do you have in your life that you love.... your beach trips, your pool workouts (I would love both)! I have my amazing husband, my dogs and my art and a great studio.

The other thing is to allow yourself to be loved, pamper yourself, burn expensive candles, buy spa bath toiletries and take long hot baths (or whatever makes you feel good). Wrap yourself in a super soft fleece blanket and listen to a guided meditation or meditative music. Try to create and birth a sense of joy and love within yourself. Allow yourself to be cradled in Gods loving embrace, really visualize God or Jesus holding you, loving you, filling you with hope and joy.

Take one step at a time, some days that means literally one minute at a time! Get through this minute, this day and believe in the promise of the next day. Don’t forecast pain and suffering into your future, picture perfect health and thank God for healing you a hundred times a day, even when it does not feel real, even when it hurts so bad and you are so terrified you think you have to end it.

There is healing of body, mind and Spirit, sometimes we do not get all three. But if we are healed in mind and Spirit then a broken body will not have any power over us. I read scriptures from many different spiritual backgrounds and I found great healing in what the Buddhists taught me about mindfulness and the Sufi’s taught me about loving God. When I combine that with my Christian faith in God I am given great power over the illness in my body. Day to day it is hard, I know…and I will pray for you!

Be Well,
Linda

Severe Pain Flare Up but Feeling Gratitude

I have been back on the Ceftin for a little over a week after being off of it for 3 weeks due to a dye off reaction that was to strong. Now that I am back on my pain level is soaring.

While I was off I felt great, my energy was good my mental state was the best it has been in ages with a major decrease in depression and anxiety. Even the constant high pitched buzzing in my ears seemed to markedly decrease. However the last few days my pain level has been climbing and for the last 2 nights I had to crawl up the stairs at night to go to bed because I could not climb the stairs standing. I am able to walk a little better early in the day but at the end of the day it gets tough. I may need to go back to using my cane if this keeps up.

The pain is a migrating joint pain involving hip and knee joints as well as a burning hot nerve pain in both legs. I am also having a lot of back pain and have had to go back to using my T.E.N.S. stimulator. The pain causes stabbing jolts in my joints that makes me unsteady at times. Sleeping is agony and I toss and turn all night.

I also am having the chills/heats again. I am chilled to the bone all day and burning up at night. It is very different from hormonal night sweats that I have experienced as it is a much more intense heat with no sweating. My legs and hips burn like they are on fire and I do not get much sleep. Despite all of this I am continuing to increase the Ceftin dose every 4 to 5 days because I want to get through this and the constant setbacks and stopping the medication just slow things down unbearably.

One of the worst things about Lyme is how it messes with the brain causing such terrible depression, anxiety and in some people Lyme rage ontop of the intense pain. Since restarting the Ceftin this time my mind has remained clear. I am still free of the terrible anxiety and depression which is a blessed relief because when that is combined with the pain life gets really unbearable. So I am counting my blessings and able to stay positive and even work in the studio despite this pain setback, for that I am very grateful.

How to Be a Fabulous Friend to Those with Illness

How to Be a Fabulous Friend to Those with Illness
September 16, 2009

1 in 2 Americans (133 million) live with chronic illness and conditions such as arthritis, multiple sclerosis (MS), diabetes or lupus. Yet, most show no outward sign of their disability—or the sense of loss, loneliness, and discouragement they live with daily. Pain, fatigue, limited mobility, and other symptoms interfere with everyday activities, responsibilities, and relationships.Well-meaning friends and family, not understanding the unique challenges of the chronically ill, don’t know what to say or do to help.

Here’s how you can help those living with chronic illness:

* Release expectations and be flexible. For someone living with chronic illness, it is possible to feel well one day and sick the next, making last-minute cancellation of plans unavoidable. Expect unpredictability and extend grace.

* Spend time with the chronically ill when its convenient for them. Meet at a time of day when they feel best. Those living with chronic illness struggle with regular attendance at work church, and social gatherings. Pain and fatigue take their toll, leading to physical and emotional isolation. Take time to visit those living with chronic illness at their homes or invite them to lunch—at a time that works best for them. A short visit over coffee or tea can make a world of difference in the life of someone struggling with chronic pain.

* Send notes, cards, and small gifts in the mail. Books, CD’s, or magazines can provide tremendous encouragement to those unable to leave their homes due to pain and fatigue.

* Affirm the individual’s worth and value. Feelings of insignificance and low self-worth often accompany chronic illness. Verbally affirm those you know who live with chronic illness. Don’t “assume” they have it “all together,” even if they look like they do! Speak words of affirmation, based on who they are not on what they do.

* Listen. Be a “safe place” where those suffering can express frustration, anger, or discouragement * Understand when those living with chronic illness arrive late or leave early. The chronically ill struggle with excessive fatigue, making long meetings and traveling to conferences and events difficult. Allow for late arrivals and early departures.

National Invisible Chronic Illness Awareness Week brings attention to an important but often overlooked issue–the challenges faced by the one in two Americans who live with chronic illness and conditions. It is worth both celebrating and supporting!

Author and speaker Mary J. Yerkes has lived with rheumatoid arthritis and ankloysing spondylitis for twelve years. She writes and speaks frequently on “living well” with chronic illness. Visit Mary online at her web site http://www.maryyerkes.com/

Pam Weintraub's new Epilogue and ongoing struggles with Lyme

CURE UNKNOWN 2009 UPDATE:

THE EPILOGUE 1.1

by Pamela Weintraub

I write this note from the stoop of my walk-up in downtown Brooklyn. We live one flight up in a cramped, pricey warren of rooms, surrounded by brownstones and bistros as far as the eye can see. There are cobblestones underfoot. The local park is concrete. I can walk to the water's edge and touch the Brooklyn Bridge. The big city, Manhattan, beckons just ten minutes and a few short subway stops away. Castaways from a careless move to the suburbs that derailed our lives for a decade, we have washed up here in this urban oasis, dazed but still breathing, safe from the deer and the ticks, from new exposure to the disease.

Lyme still touches our lives. It was the summer of 2008 when, suffering from an ear infection, I received antibiotics. In a few days the ear was better, but that familiar malaise --the buzzing and numbness, the headache and nausea, the stilted speech and stupor-- all returned in force. Something had roused the monster, sending my immune system into overdrive and stirring the vortex of Lyme. Never really gone, I thought at the time. As in years past, I stayed on antibiotics until my head cleared, the numbness receded, and the immune storm washed back to sea.

Not long after, Mark had reached a low. His memory was so poor that he lost the train of conversation and he had trouble staying on track just watching TV. He needed the big gun --Rocephin-- to reach his brain and push his infection away. Over three months of treatment his improvement was marked, but one night his fever soared and he started shaking with chills. We rushed him to the ER to find his IV line infected. It was removed and Mark, decidedly less symptomatic, flew antibiotic-free, like me.

Our children were not as fortunate. Sicker than we were from the start, they were sicker still. We took our older son, Jason, to Richard Horowitz, a Lyme doctor in the graceful Hudson Valley hamlet of Hyde Park, New York, famous for its hiking trails, its river views, and the Roosevelt and Vanderbilt estates. Horowitz was one of the few Lyme doctors pushing pedal to the metal, wielding antibiotics, treating the coinfections, boosting the immune system, addressing sleep issues, detoxing metals ---using the whole armamentarium at once.A meeting with Richard Horowitz is not for the faint of heart. A rapid-fire talker with laser-focused thoughts, he parses every detail of your medical history, reviews past treatment, then critiques, dissects, moves on.........

The New and Revised Edition of "Cure Unknown" is being released October 2009. To pre order click this link: http://www.amazon.com/Cure-Inside-Epidemic-Pamela-Weintraub/dp/0312378130/ref=ed_oe_p