Dr. Shea, Neuropsychologist and president of ILADS recently spoke to our support group about Neuropsychology and Lyme Disease. A must see! Here is the video from his presentation:
State Representative Theodore Speliotis will be sponsoring a Lyme Disease Awareness Day at the State House in Boston on Monday, April 29th at 11:00am – 3:00pm. S.L.A.M, the Lyme Awareness of Cape Cod and the Boston Lyme Group will be hosting.
This is an educational event for politicians, doctors and patients. More details will follow.
In the meantime, I am creating a Wall of Hope that will be publicly displayed during the event. If you live in Massachusetts and would like to participate, please email your picture with name, town and county that you live in to firstname.lastname@example.org.
We are happy to have Dr. Leo Shea speak to our group this Saturday, March 2nd at 1:00pm – 2:00pm. Our support group will meet afterwards from 2:00 – 3:00pm.
Dr. Leo Shea is currently the president of ILADS (International Lyme and Associated Disease Society). His expertise is in neuropsychology which includes traumatic brain injury, tick-borne, autoimmune and chronic disease and stroke. He will be talking about “Understanding the Neuropsychological Consequences of Lyme Disease”.
LOCATION: Cambridge Spaulding Rehab Center – 1575 Cambridge St., Cambridge, MA – Chapel Conference Room, 3rd Floor
There is visitor parking located by the side entrance.
I hope to see some of you there!
The Boston Lyme Group is very pleased to announce that our February speaker will be Dr. Kenneth Liegner from Pawling, NY. The event details are as follows:
Spaulding Hospital Cambridge
Chapel Hill Conference Room
February 2, 2013 at 1pm
We will be sending out a flyer soon, but we thought to at least get a SAVE THE DATE email sent first.
Brandi and James
We are so pleased to have Dr. Phuli Cohan speaking to our group about detoxing. She had suffered with Lyme for several years and is a “Lyme Warrior”, a name given to those treated by a well-known LLMD in Washington, DC. She is now well and has been off antibiotics for over a year. Please join us!
SATURDAY, JANUARY 5:
Location: The Cambridge Spaulding Rehab Center – The Chapel Conference Room – 1575 Cambridge St., Cambridge. (Close to Harvard T stop. Limited visiting parking available).
Time: 1:00pm – 3:00pm. (First hour is educational. Second hour is for support)
Email me at email@example.com for more information.
It’s been a little over a year since I have been blogging and so much has changed since my very first post in October of 2011. I have met so many people, many who have become good friends because of this disease. The support group James and I started a year ago has turned into something very special and extraordinary. We are helping others by supporting them through their illnesses. As I sat with twenty or so people on Saturday, listening to every one tell their story about their struggles with getting a diagnosis and then finally trying to come to terms with their final diagnosis…Lyme, I thought how lucky are we to have finally found a place to come together and share…and learn from each other. As I looked around the room, I saw the evidence of Lyme everywhere. Walking sticks, leg braces, dark circles under the eyes for some…tears. A year ago, I had no idea that there were people out there that were suffering so badly from Lyme of all things. I thought Lyme was just a flu-like illness that was easily treated by antibiotics. I think of a woman who was missing from our meeting on Saturday and the heart-ache she is feeling after watching her son’s health deteriorate rapidly before her eyes. She is desperate to find someone who can get him well…and I am only more motivated to make a difference…for the people in that room and for the grieving mother who wants her son to live a normal, healthy, happy life. No one should ever have to go through this.
My hope is that our group is somehow able to make a difference in how doctors diagnose and treat patients with Lyme. Now that we have two wonderful doctors on board with us, I feel stronger than ever. Our first speaker will be Dr. Kenneth Liegner, a well-known ILADs MD who has been treating patients with Lyme since the 80s and is also responsible for getting two of my friends well. We are inviting primary care physicians in the Boston area to attend and I really hope that some of them come.
There have been times where I have thought about closing down this account and moving on…leaving Lyme far, far behind but I feel like I have been called to continue this journey until the medical guidelines for treating Lyme are changed and until more awareness is brought to the medical community so that people are diagnosed soon after an infection to avoid years of suffering. So, here’s to making a difference and if any of you would like to join me, feel free to attend our meetings and ask how you can get involved.
We are meeting at a new location this Saturday.
Meeting: Boston Lyme Group (Neuro Muscular Infections and Rehab Group)
When: Saturday, 12/1/12 – 1:00pm-3:00pm (1:00-2:00 Speaker, 2:00-3:00pm Support)
Speaker: Dr. Nevena Zubcevik – ILADS Conference recap
Where: Cambridge Spaulding Rehab Center – Chapel Conference Room – 1575 Cambridge St, Cambridge, MA
Parking is limited. Metered parking available on Cambridge St.
Email me at firstname.lastname@example.org with any questions.
See you on Saturday!
Every week I open an email from someone who is desperately looking for a diagnosis for their long list of unexplained symptoms or for a doctor that will listen to them. Many of these people have been diagnosed with psychiatric problems and turned away with a prescription for an anti-depressant. And many of them ask me if I think they are crazy. Every time I read these emails I am reminded of how far I have come. I am so thankful for those who have helped me along the way…complete strangers who decided to blog about their experience. I don’t know where I would be without them. 16 months in now and I am still shocked at how similar all of our stories are. I am tempted to collect all of them and carry them into Dr. Steere’s office (he’s right down the street) and ask him what the h*ll is going on. Why are all of these people being denied treatment or even testing when they have all of the symptoms for Lyme or other tick-borne illnesses? I have had letters from successful professionals, lawyers, athletes and teachers who were suddenly unable to work or perform simple daily activities and almost all of them were referred to a psychiatrist and treated as if their illnesses were all in their head…that a daily dose of Zoloft would help them get out of bed and get back to work. Well, I’ve realized in the last 16 months that I can’t tell a doctor how to do his/her job, but I can be there for those of you who need a doctor that will do his/her job and help you get well. I’m also happy to offer the Boston Lyme Group and Neuro Muscular Infections Group as a place for you to meet others that know what it’s like to stand in your shoes. We will meet this Saturday, December 1st at 1:00pm at the Cambridge Spaulding Rehab Center. Please email me at email@example.com for more information.
Many thanks to all of you that blog about Lyme and for helping so many people struggling with this disease. I am so incredibly thankful to have stumbled upon my very first Lyme blog back in July of 2011. That blogger saved my life. THANK YOU.
The Boston Lyme Group will meet again! James and I are so excited to bring two doctors (an MD and DO) on to help facilitate the group. Both have/had Lyme, one is fully recovered and the other is still being treated and they are both looking forward to providing support for all of us. Here are the details:
GROUP: Neuro Muscular Infections Treatment & Rehab Interest Group (So that we can include those with similar infections, co-infections, viral, etc. and so that we could meet at the Rehab Center!)
DATE: Saturday, December 1st – 1:00pm – 3:00pm (First hour will be educational w/ speaker and last hour will be for support.) We will then meet the first Saturday of every month, same time, same location.
LOCATION: Cambridge Spaulding Rehabilitation Center – 1575 Cambridge St., Cambridge, MA – Chapel Conference Room (go to security and they will direct you to our room)
PARKING: There is limited visitor parking at the center and metered parking on Cambridge St. so bring quarters just in case! It is also a short walk from the Harvard Square T stop.
Feel free to email me with any questions: firstname.lastname@example.org
See you in December!