Raising Hope for Families with Lyme

LymeLight grant recipient MaxMax – Gift of Life

When I first wrote you, Max was bed bound and had been for a couple of years. I spent every night consoling him. He was afraid to go to sleep….afraid he would not wake up. He was in constant and severe pain and agony, he suffered extreme and non relenting dizziness and nausea. We lived in the dark. Light, sound, and smells were painful. We all walked around the house on tip toes with ALL curtains drawn. He suffered from POTS and Tachycardia and was on O2. He could not bath, brush his teeth, get dressed, or even pull the covers up. I gave him a sponge bath every morning and put on his deodorant. Clothing was too painful, and his body was always on fire despite icicle feet. He felt like he was cooking from the inside. He suffered from constant headaches, ear pain, eye pain, neck pain, back pain leg pain, etc etc. He also could not eat. Food tasted like soap, or metal, or chemicals. My husband and I helplessly sat at his bedside. It was an unfathomable agony to witness. Our hearts were being ripped apart, and we felt so alone…no help….no answers. It was literally hell.

We found answers in April when we had the amazing good fortune to be taken under the wings of a world renown LLMD/expert who diagnosed Max’s Lyme and co infections, CVID, genetic mutations, and endocrine disorders. Tears of joy for me later followed by panic. How in the world do we afford Max’s medical care?

Despite being fortunate and having insurance, we simply could not afford all of Max’s cares. Insurance does not cover our LLMD appointments. Some scripts are not covered and there are copays which add up quickly. A lot of the testing is not covered and Max is on many very crucial supplements and herbals as well as IgG which is not covered by insurance. On top of those, we needed a mechanical wheelchair and van or suv with a lift in order to get Max to and from appointments.

Max has been able to continue with all testing and treatment since receiving his grant from LymeLight. He has had some major issues with treatment, traumatic herxes, and is still quite ill, but he is no longer bedbound. Let me say that again. MAX IS NO LONGER BEDBOUND. 🙂

He no longer suffers from light, noise or sound sensitivity. His taste issues have resolved. He is able to bath about 3 out of 7 days a week and can brush his teeth every day. He also gets dressed now everyday too. Sometimes he is able to eat at the dining room table now as well. And, we have him situated at a desk during the day for computer access. Brain fog has lessoned which means we can actually talk to him now too 🙂 Headaches and ear pain are gone and stomach issues are almost gone. POTS is also now adequately controlled via medication and O2 not in use.

We were able to use some of the Lymelight grant to purchase the much needed mechanical wheelchair for Max and another manual wheelchair from an estate sale. Max can now leave the house (MIRACLE!!) if we have a wheelchair.

Max is very excited about the upcoming holidays which brings such joy to our entire family. I don’t know if this is a story of hope, miracle, or both. I do know that Max now has a future….he now has a life. Time will tell what that life will be and what role illness will have in his future. He would not be where he is today without Lymelight and his amazing LLMD. Words cannot express our family’s gratitude for Max’s gift of life.

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