Xo Looking for answers daily
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Our situation is so similar to yours that it’s unbelievable…I’ve been struggling for years (Lyme, co-infections, CAEBV). Now my 16 year old daughter is Hospital homebound from CAEBV diagnosed by ID at Nemours. (Also positive for Lyme and Bartonella) This is so devastating…our very happy life has come to a complete stop with no relief in sight.
The advice you give in your posts is 100% correct. We had to learn most of this the hard way also….many, many appointments and tests. These diseases are physically, emotionally and financially draining, not to mention painful. The pain is almost unbearable. The word fatigue does not accurately encompass the bone crushing exhaustion we feel. Just reading your posts has been so cathartic for me and I’m going to share with my daughter to give her hope and let her know we are not alone in this fight. Thank you from the bottom of my heart! I wish you and your sons health and happiness. Xo