← Return to Lyme Disease getting more attention with celebrity diagnoses

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@sueborfl

After reading just about all the comments and/or replies above regarding Lyme disease…. I think most of you should get into the heart of the matter and start by reading Polly Murray’s book: The Widening Cicle and next go onto Pamela Weintraub’s books. It’s going to be the start of your education on what and why WE ARE NOT GETTING THE HELP WE NEED. It’s extensive, provocative reading material and don’t fool yourself — There is very little intention of further research, progress, investigation in helping those of us with chronic and progressing Lyme. I can only suspect a matter of traditional insurance, animal activists and political navigation to keep this very quiet. Ross Douthat (sp?) of the NYTimes just finished his excellent book on his unbelievable personal experiences in getting help. So sorry to inform most of you that this gets worse rather than better. I was bitten in 1979 in my back yard in Scarsdale NY. IT TOOK ME 12 years to find a caring doctor to test me properly and suggest an infectious disease specialist. “LYME LITERATE”.
That went onto more nightmares because of the tricky and changing nature of our current antiquated testing system. Since 1991 I’ve finally been on the right side of treatment, but only available abx to help maintain this intracellular disease at this point.
Do your reading, become familiar with what is going to be possibly a lifelong fight. Please weigh in if you find discrepancies or mistakes or obvious errors. I can only share my story and that of many waiting room patients.

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Replies to "After reading just about all the comments and/or replies above regarding Lyme disease…. I think most..."

Lyme is a long and sad journey. I contracted it 6/2020 and have been sick ever since. I was treated with Doxy for a month but Lyme did something to my body and it hasn’t recovered. I have so many weird medical conditions now and cannot get help. I even saw a Functional Medicine NP but “she doesn’t treat Lyme”. She did discover EBV but I can’t get help with that either. She sent me to Infectious Disease who laughed at me and said I just have high EBV numbers. Bye.
Lyme cost me my job so now I don’t have the funds to pay to see a Lyme Literate physician. The one I could find near me costs $2,000 to walk through the door to get started. It’s an impossible condition to live with. Wishing the best to all who suffer with this. It’s a very cruel and misunderstood condition.