It is increasingly clear that many children and adults in New England suffer from tick-borne illnesses such as Lyme disease. At the same time, there is confusion about the signs, symptoms, and treatment protocols for these disorders. When left untreated, bacteria, such as Lyme and certain strains of strep, can produce unexpected neuropsychiatric symptoms. Lack of awareness on the part of patients and their doctors can contribute to misdiagnosis, prolonged illness, and other complications, e.g., Pediatric Acute-onset Neuropsychiatric Syndrome or PANS.
Lyme-literate doctors and other health practitioners are advancing methods for diagnosing, treating, and supporting patients with tick-borne illnesses. Unfortunately, however, far too many children, teens, and adults continue to unknowingly suffer from symptoms related to these infections. We have learned that dozens of our own patients presenting with depression, separation anxiety, obsessive-compulsive disorder, chronic pain, irritability, learning problems, or severe mood swings have undiagnosed infections. Oftentimes, these patients and their families have been through a lot. Recovery can be complex. Many patients and their families need the coordinated care of medical doctors, psychologists, dietary/health coaches, and other healing practitioners. We have observed the benefits of this approach firsthand, and we have had patients recover from debilitating physical symptoms and severe mental illnesses as a result of this comprehensive and coordinated care approach.
The purpose of this campaign is to raise the initial funds necessary to open a Lyme and PANS Treatment and Recovery Center in the South Shore of Massachusetts. The Center will offer coordinated and multidisciplinary care (e.g., medical, psychological, health and wellness, and complementary care) at a single location in Cohasset, Massachusetts.
DID YOU KNOW?
- Ticks can secrete small amounts of saliva with anesthetic properties so that a person cannot feel or notice its presence.
- Many people with Lyme disease have no memory of a tick-bite or a rash.
- Sometimes whiney, “lazy”, grumpy or moody children have undiagnosed infections or post-infection autoimmune disorders.
- Unexplained fatigue, headaches, “brain fog”, body aches, or disrupted sleep can be related to an infection such as Lyme disease.
- Sometimes children and teens experience chronic and severe anxiety during or after bacterial infections (e.g., Lyme, Strep, mycoplasma pneumonia, mono).
- Infections with tick-borne bacteria such as Bartonella and Lyme (or parasites such as Babesia) have been associated with depression and/or irritable moods.
- Some children and teens with these infections or PANS/PANDAS are originally misdiagnosed with ADHD, separation anxiety, obsessive compulsive disorder, nonverbal learning disorder, or mood disorders such as depression.
Blacklegged ("deer") ticks are difficult to see and they are significant transmitters of Lyme and other tickborne diseases.
The highest risk of infection is in the late spring and summer.
Lyme rash (Erythema Migrans) does not occur in 20-30% of infected people according to the CDC. Consequently, unexplainable fever, chills, headache, fatigue, muscle aches, joint aches, and swollen lymph nodes could be an indication of Lyme.
WHAT THE CENTER WILL DO
The Lyme and PANS Treatment and Recovery Center will offer multidisciplinary services (e.g., medical, psychological, health and wellness coaching, relaxation training, and complementary care) to patients at a single location in Cohasset, Massachusetts. Practitioners at the Center will coordinate care for patients at this location making it easier for patients and their families to receive the comprehensive care that they need.
WHY WE NEED THIS CENTER
Currently, when individuals in Massachusetts seek treatment for Lyme disease, other tick-borne illnesses, or PANS/PANDAS, they have limited options. They often need to travel long distances (e.g., Connecticut, New York), spend time on a waitlist, or jump from doctor to doctor in search of someone who will understand pieces of their complex situation. Some patients are fortunate to find a suitable medical provider. All too often, however, these patients need more than traditional medical care. Families dealing with Lyme or PANS often endure tremendous strain in various areas of their lives. They may have weakened their abilities to deal with stress, lost meaningful relationships, or suffered set-backs at work or in school. In our experience, the most effective approach is multidisciplinary treatment involving coordinated care at a single location.
The new Lyme and PANS Treatment Center in Cohasset, Massachusetts will offer coordinated, multidisciplinary care (e.g. medical, psychological, family, and complementary care services) at a single location, and it will serve a critical and growing need in our community.
FUNDING REQUIREMENTS, TIMELINE, AND DEVELOPMENT PLANS FOR THE CENTER
Our development plans for the Lyme and PANS Treatment Center are underway and we are making great progress. The immediate costs required to open this Center are $21,500. These funds will be used to open the Center’s doors and they will pay for necessary start-up costs, including medical and therapeutic equipment, computers and software, and office staff to help run the Center.
The Center will open as soon as November 2015 if we are able to secure the funds to cover these initial start-up costs.
HOW YOU CAN HELP
Because of the critical need and benefit to our community, we are reaching out to you to help get this Center started.
Contributions of any amount will help. You can contribute as little as $5, $10, $25 or as much as $1000 or more, or anything in between.
You can make a contribution by clicking “Contribute Now” or choosing one of the Contribution Boxes on this page.
We greatly appreciate your support!
BENEFITS YOU WILL RECEIVE FROM YOUR CONTRIBUTION
The benefits that you will receive from your contribution include:
1) A local, dedicated Center for the treatment of Lyme, other tick-borne-illnesses, and post-infection neuropsychiatric disorders (PANS/PANDAS).
2) Access to experts from multiple disciplines (e.g., medical, psychological, health and wellness, etc.) in the treatment of Lyme and PANS/PANDAS.
3) Access to community workshops and information sessions on Lyme prevention, treatment, and recovery.
4) Peace of mind knowing that you will have a place to go to if you or a family member needs help.
All of the funds raised above the initial $21,500 start-up costs will be allocated to a separate “Patient Support Fund” that will be used to provide discounts to patients who cannot afford the full cost of care.
This Center will serve a critical and growing need in our community. We greatly appreciate your support.
Elena Monarch, Ph.D. will open this center. She is committed to putting together the best team of professionals available and is seeking involvement from true experts in the field. A number of practitioners and parents of ill children in the community have volunteered their time and provided enormous support toward the development of this Center.
Will the Center serve children and adults?
Will treatment at the Center be reimbursed?
Isn’t treatment of Lyme disease, as well as PANS, controversial?
Where can I learn more about post-infection neuropsychiatric disorders (PANS/PANDAS)?
You can learn more here: http://www.nepandasparents.com/
When will this Center open?
Is my contribution tax-deductible?
No, but it will help to create a Center that will serve you, your family, and our community.
Who should I contact if I have additional questions or want to be placed on the waitlist?
How can I make a contribution?
Click on the 'Contribute Now' button or choose one of the Contribution Boxes in the upper right-hand corner of this page to make a contribution!
We are grateful for your support!