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Supporting Families Affected by Lyme and Tick-borne Diseases

Supporting Families Affected by Lyme and Tick-borne Diseases

To help explain systemic infections such as neurological Lyme disease, Dr. Richard Horowitz uses an image of a patient with 16 nails in his or her foot. Even if a physician can diagnose and effectively remove four of the “nails” the patient is still left with 12 nails in their foot. These “nails” include parasitic infection, immune dysfunction, inflammation, insomnia, vitamin deficiency, food allergies, and more. I propose a “17th nail” which is the psychosocial effects of having a chronic illness in our society. Identity change, loss of employment, stress, anger, and social isolation can all affect the well-being of patients and their families....

New Beginnings

It has been a busy time –getting ready to launch the full version of my new website, caringforandhealing.com, and share my work at the Lyme Disease Association’s Health Fair in Danbury, CT on May 12. There were moments in graduate school when I wondered if I was on the right path. Then I would be connected with a family like mine, affected by pediatric Lyme disease, who appreciated the information and ideas I had to share. This was a reminder of the need for a better understanding of both tick-borne disease, and how one child’s illness or disability can affect a whole family. I am grateful to be able to do this work, and have decided to make as much of it as I can available for free on the new website, which will be finished in May. I have taken a studio space at the Compass Music and Arts Center, and will continue selling my jewelry and art to help support my work with children affected by Lyme and tick-borne illness, and advocacy for families. After taking time off to work on my thesis, it is fun to get back to creating artwork – and I look forward to sharing it on this site....

Here We Go Again……

Yet another round of EM rashes. Trying not to feel discouraged, and considering the implications of treating with doxy in the summer months (no sun exposure) or trying to go the herbal route – at least until school starts again. It is a good reminder (as I am beginning to work with Lyme patients and others with both acute and chronic diagnosis) of the intense emotions that can go along with an illness. I was saddened to see my son’s disappointment when we noticed the bulls-eye rashes – and his acceptance that this disease continues to affect his life. I am reminded of a moment last October; I picked him up from school, and he was talking to me about how great this school year was going (he happened to have been on doxy for the past six weeks). I said to him, “Well, this is the first year you are really feeling well, right?” His response: “Mom, do you mean this is what most people feel like all the time?” I definitely had to hold back some tears at that moment. So, even though we have hit another bump, I am grateful that we have come so far, and remain open to the lessons we have yet to...

Inspired

Inspired by @chrondetermined asking for some positive stories about #Lymedisease, I am thinking about the many ways our experience of Lyme and Bartonella infections made our lives better.  Our whole family is healthier and stronger because of the diet and lifestyle changes we have made together. We live more simply, and truly understand the value of a ‘good day’. We are more supportive of each other. We know what really is important. Most significantly, we have become much more compassionate people than we were before Lyme disease entered our...

Dr. Horowitz “…antibiotics were an effective treatment…” Grateful studies show what many of us know through experience. #lymedisease

Dr. Richard Horowitz commented on a study showing tetracycline antibiotics were an effective treatment for some schizophrenia symptoms. He also addresses the connection between tick-borne diseases such as Lyme and Bartonella, and treatment resistant depression, anxiety, rage and neurological problems. Dr. Horowitz concludes, “It is therefore plausible that a certain number of cases of severe psychiatric presentations are due to underlying infections, especially since Lyme disease is the number one spreading vector borne infection in the world.” I was perplexed when my son’s behavior problems – including hyperactivity, depression, rage and OCD – would go away with antibiotics and return within several weeks of stopping their use. Also, how inflammation (usually related to diet) would often result in behavioral and neurological symptoms. I’m grateful to see that studies are showing what many of us know through experience, and support the idea that medicating psychiatric symptoms is not enough....

Speaking with VHD’s director about #MSIDS and living with #lymedisease

I would like to add to yesterday’s post that Dr. Chen also inquired about my experience with Lyme disease, and listened respectfully when I shared our story of constant relapse, severe neuropsychiatric symptoms, and the social, professional and financial challenges we faced while trying to obtain adequate treatment for our son. I am hopeful that the complexities of Tick-borne disease are beginning to be understood by the medical establishment, and I appreciated the opportunity to share our experience with someone who has the power to change how the medical community treats Lyme and MSIDS...

Good News!!

I was excited to get a call at home from Dr. Harry Chen, Commissioner of the Vermont Department of Health. He let me know that the VDH will be making many of the changes I advocated for to the Lyme disease section of their web page. These include adding information about chronic manifestations of the disease, reorganizing available information, and removing links to outdated and biased websites. Hopefully these will be implemented sometime...

Notes

My current internship involves developing a program for pediatric illness management. I propose that any chronic pediatric illness, whether Lyme disease, diabetes or asthma, cannot be treated without addressing the health and well-being of the child’s family. Siblings are affected, marriages and finances are challenged, careers are put on hold, routines changed, and plans deferred. The module I am developing helps parents to acknowledge these effects, and creates a system for making personal and lifestyle changes that can help a child – and their family-...