activism, thoughts

New Goals for the Blog

If you’ve visited me recently at gotlyme.wordpress.com you may have noticed that we have a bit of a new look (and that we can now also be found at pghlyme.org). This blog was slowing down, and I made the decision to help revitalize it by joining its effort with that of the Pittsburgh Lyme Support Group, something I hope will be mutually beneficial.

The PghLyme Support group is trying to get a strong support network off the ground in Pittsburgh, and we’ve made this blog it’s front page. As part of that effort, we’ve also added a new author, Pittsburgh Lyme Support Group founder Bill Moore. He is listed on the contact page, and has written about his Lyme Story. Bill also founded the pghlyme facebook group, and I am very excited to have him collaborate on this blog. I hope you will enjoy his contributions as well.

 

 

activism, diagnosis, thoughts

Slipping between the cracks

In the last week, I have met or heard about three different cases of younger individuals who either died or were very ill with a combination of diseases that cause neurological and physical symptoms. I invariably have the same reaction in these cases – I think of Lyme disease and wonder whether they were properly evaluated for it. I often think of the saying ‘when you have a hammer everything looks like a nail’ and wonder if I should say or do anything. But I also know that I was headed down the path toward an MS or ALS or similar diagnosis myself. I only discovered that I had Lyme disease because I was lucky. A massage therapist, who I called to ask for help with my pain, suggested the diagnosis.

One of the three told me she had a false positive test for Lyme. This more than anything set off alarm bells in my head. How could I fail to wonder whether the ‘false positive’ was a true positive, given the lack of specificity in tests. Many doctors never tell patients basic facts about diagnosing Lyme disease.

In the end, I can’t be sure that any of these individuals have Lyme disease, and two of the three have passed away, so even bringing it up would only be a cruelty. But it breaks my heart to think of folks who are that ill not even being properly evaluated for Lyme disease, because I know that there is a way back from Lyme disease.

The passage of PA State law Act 83 in 2014 (the Lyme and Related Tick-Borne Disease Surveillance, Education, Prevention and Treatment Act) mandates education of lyme patients (I don’t think I’ve written about that success yet! I will have to post separately about that). But how can we educate those who fall through the cracks before diagnosis?

For now, at a minimum, I will speak up, even if I fear seeming like a hammer without a nail. But maybe it’s time to do more — find groups of outdoors focused individuals and tell them Lyme disease exists, and that it is controversial, for example. Feel free to share other ideas for how best to reach out to maybe-lymies :).

activism

Urgent need for donations

This was not my children’s lyme doc, but he is one of only a small number (2 or 3 that I know of) on the east coast who sees kids under 12, and a hero to many families with Lyme. Please help support him if you’re able. You can donate here. Even a small amount would make a difference, but he especially needs it by the end of the month:

Children’s Lyme disease network has a site to make online donations: http://www.indiegogo.com/JonesAppeal Continue reading “Urgent need for donations”

thoughts

Support #2

I’ve posted before about the importance of finding support; attended support groups; recommended mailing lists. I’m one of those people who naturally seeks mentorship and support wherever I am as a way of coping with whatever I’m going through. But recently I’ve also realized just how lucky I am to find support in everyday places — the colleague/friend at work who listens and thinks through my illness with me, the husband who takes on extra duties, the parents who, though at a distance provide unending ideas, are willing to pitch in with labor and looking, believe in my experiences. Sure, I’ve had days where it seems that no one cares enough to call, friendships lost and regained only when I had the energy to pursue them again, days when I was on my own with too much expected of me and too little energy. But overall, even without support groups and other formal mechanisms, I am supported.

Unfortunately, not everyone is as lucky. Having recently had my name in the paper in an attempt to raise local awareness about Lyme disease, I have been contacted by a number of people who are also struggling with it. While these individuals are uniformly motivated and active in fighting for their health (they all made the effort to find me, after all), the varied experiences they have been through reminded me again of what has been shown for other illnesses: a complex ecology of support and connections exists among those who need support and those who give it [1], and dependence on individuals ranging from the helpful clerk who loads a car to a close friend can make independence possible. So if you find yourself refusing help (or needing it), please remember: asking and receiving are another way you can be strong, and a natural part of the human experience.

[1] Forlizzi, J., DiSalvo, C., and Gemperle, F. (2004). Assistive Robotics and an Ecology of Elders Living Independently in Their Homes. Journal of HCI Special Issue on Human-Robot Interaction, V19 N1/2, January, 2004.

activism

Repost: Thanksgiving in the Lyme World

For those of you not on the CALDA (California Lyme Disease Association) mailing list, I wanted to share the message they just sent me. I joined their list because they are extremely well organized and I often keep an eye on their site because it’s full of great information. It’s inspiring to me to see how many things folks in the Lyme world are accomplishing. Here’s their message:

Scientists sequence Lyme disease genomes

Researchers have determined the complete genetic blueprints for 13 different strains of Borrelia burgdorferi, the bacteria that cause Lyme disease. The wealth of new genetic data should help scientists develop improved ways to diagnose, treat and prevent Lyme disease. Click here to read more about it.

2010 CALDA Lymewalks raise research funds, awareness

San Francisco, Sacramento, Los Angeles, San Diego, Ukiah and Humboldt County were the sites of six CALDA Lymewalks held in September and October. In addition to increasing public visibility of Lyme disease and collecting funds for research, the events became Lyme community-building events as well.

Lyme-TAP program offers financial help to patients in need

The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program offered by Rotary Club of Ferndale Foundation in coordination with Humboldt Lyme Awareness Group. It can provide reimbursement for up to 75% of the cost of diagnostic testing for tick-borne diseases. Click here for more information.

Massachusetts passes Lyme doctor protections

Governor Duval Patrick posed for this photo with Lyme activists after signing the 2011 Massachusetts state budget, which included an amendment to protect physicians who give long-term treatment for Lyme disease.

Increased media coverage of Lyme disease

Maine television station WSCH6 ran a 4-part series on chronic Lyme last summer. New Hampshire public TV station WMUR devoted a one-hour special to the subject. Almost every day, articles about Lyme disease appear on TV, radio, newspapers, magazines and on the internet. Many of these articles come about because Lyme patients contact media outlets suggesting coverage. Keep up the good work!

More in-roads into medical journals

CALDA board members Raphael Stricker, MD, and attorney Lorraine Johnson have co-authored some 30 Lyme-related articles which have been accepted for publication in professional medical journals. Their most recent one, published in Philosophy, Ethics, and Humanities in Medicine is the third most accessed article for all time in that journal, with over 10,000 hits.

Restructure of IOM hearing and the Congressional Record

After CALDA and other patient groups pulled out of an Institute of Medicine Lyme disease workshop to highlight a highly biased process, the IOM restructured the session to be less biased. With the help of Congressman Chris Smith (NJ), we entered our “state of the science” report into the Congressional Record.  Click here to read it.

Increased Lyme activism

Becoming informed and staying connected are critically important for members of the Lyme community. More patients than ever are helping themselves and each other by joining CALDA’s network of on-line state Lyme support groups. And they are keeping abreast of Lyme-related news via the Lyme Times, as well as CALDA’s blogs, Facebook page and Twitter.

activism

In-person meet up?

Hi folks,

I was contacted by a fellow Lymie who’s in town briefly and wants to meet up with other Pittsburgh Lymies. She’s arranging a meeting at the Southside Starbucks (1400 E. Carson St). If you’re interested, come join us 2pm Wednesday. I’ll be there for the first hour or so.

— added after the meeting:–

I was asked to create a mailing list for local folks. f you’re from the Pittsburgh area, you can join a Yahoo Groups mailing list called PittsburghLyme@yahoogroups.com, and you may also want to join PennsylvaniaLyme@yahoogroups.com. If you’re not, there’s other lists depending on your location ([StateLyme]@yahoogroups.com, e.g., PennsylvaniaLyme@yahoogroups.com)).