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....

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-...

‘Luke’s Note’

Tonight we were at our son’s baseball game. His first year playing little league is significant because there were springs and summers he was too sick to leave the house. Playing sports was simply not an option. The journey we have been on as a family has addressed so much more than Lyme disease – friendship, community, depression, addiction, parenthood, anxiety, dreams, family legacies….. I am grateful for everything we have learned, but sitting here tonight, watching the game, what I appreciate is the health of our family, and the well-being we have worked so hard to...

VT Dept. Health

I have been writing to Commissioner Harry Chen, M.D. and the Vermont Department of Health to encourage them to make changes to the VDH web section for Lyme and Tick-borne Diseases. I have also requested that the VDH establish a formal interdisciplinary committee to vet information about tick-borne disease and provide Vermonters and their physicians with a source of accurate information on the debate about Lyme disease and treatment protocols. The Burlington Free Press published my letter to the editor about this subject. If you would like a copy of my report to the Vermont Department of Health or of my letter to Dr. Chen please contact me and I will send it to...