Mary Margaret Sohns Tells
Her Story On ‘Today Show’
COOPERSTOWN – Mary Margaret Sohns of Cooperstown, who underwent a heart transplant earlier this year after Lyme Disease damaged hers beyond repair, told her story on a recent edition of “The Today Show” in hopes of inspiring others to educate themselves on Lyme disease.
What a special story. I live not far away (Albany,NY) and I am facing a possible heart transplant caused by being a type 1 diabetic. I too have been all over and just got of the hospital after another 2 week stay. I have so many of the same symptoms, very tired, difficulty breathing, depression yet reading Ms. Robbins story I realize that there might be a possible happy ending. I’m so scared and would love to be able to communicate with someone like Ms. Robbins who has been through the surgery. I can’t wrap my arms around it.
Tears and flashbacks took over as I read Mary’s story. I live in Maryland and her experience mimics my own. I was a completely active wife, mother and cardiac nurse who had the same symptoms. I went to my primary care several times and the ED twice. I had spinal taps, ekgs labs and was told I had MONO, then a bad skin infection (my Lymes test was negative).
I too ran 3 miles daily was never sick and now I was loosing weight, in constant pain, falling, short of breathe and dismissed as being crazy.
I felt I was going to go to sleep and not wake up, I reluctantly went one more time to the ED upons a friends insistance she saved my life. They hooked me up to the monitor and I too was diagnosed with Lymes Carditis with second degree heart block.
Antibiotics worked for me, my heart responded and I went from a heart rate of 30 back to my normal 60’s.
The pain and deconditioning took me another 2 years to heel from.
I do not believe Lymes Carditis is less then 1%. While I was in the hospital another man came in and received a temporary pace maker due to heart block from Lymes until he was successfully treated with IV antibiotics.
We truly need to make the healthcare providers more educated on the symptoms and to treat per CDC guidelines meaning treat the patients symptoms even with a negative Lymes there are many false negative results.