Lyme Disease getting more attention with celebrity diagnoses

Hi @sundance6, Thank you for starting this discussion. Lyme disease is often misdiagnosed and can be hard to detect. That is a great resource you shared and I think this would be a good discussion to list some resources for Lyme disease starting with the one you mentioned plus a few that I have found in past searches.

LymeDisease.org - https://www.lymedisease.org/
Lyme Disease Association, Inc. - https://lymediseaseassociation.org/
The Johns Hopkins Lyme Disease Research Center - https://www.hopkinslyme.org/

How have you been doing? Do you have any new tips for things that are helping you?

Hello @sundance or @sundance6 A friend sent me a great article about how Lyme disease had change 1 woman’s life. She was a senior USAF officer and a jet fighter pilot until she basically collapsed and was medically retired. She still in treatment and has a very good blog about Lyme disease, research, etc. Here is the link:
https://lifelovelyme.com/
Becky

Hi Becky @becsbuddy, I thought I would share the link for you if you don't mind - https://lifelovelyme.com/

I was looking for the correct one! You’re just too fast!

THANK YOU ALL SO MUCH FOR THE ARTICLE! IT'S SO SAD HOW MANY PEOPLE STILL THINK LYME DISEASE IS NOTHING BUT A "FAD"! LIKE MY FAMILY I JUST SPENT A WEEK WITH WHERE THEY LIVE IN NORTHERN NM. I'M MOVING UP IN THE SAME TOWN SO I CAN BE THERE FOR MY 9-YEAR-OLD GRANDSON WHO IS A "SPECIAL SPIRIT"! A VERY "OLD SOUL"! WHO NEEDS SOMEONE TO HELP HIM SINCE HIS FATHER HAS VERY LITTLE TO DO WITH HIM, OTHER THAN CHILD SUPPORT WHICH IS PROBABLY GOOD SINCE HE IS ON THE UNSTABLE LIST!
From the Land of Enchantment!
SUNDANCE(RB)

... my sometimes poor health took a turn for the worse around 2012 and I couldn't put a finger on it, but where we lived before had a small veggie garden near "the bush" in norhern Ontario and have a photo of one day my arm had a sort of central painful spot and ws swollen and red and I went to pharmacy and they suggested antihistamine. The photo is a bit off colour but definitely something bit me .... or ?? Now am wondering if Lyme or similar as deer country. Too late now, still have photo not a bullseye but a central core and rest of arm very red. Wish I had checked it at emerge or such but doubt it fhey would have thought of a tick bite in those days. All I know is after than my health went downhill in an odd way and the things I already had got worse. We should spread the word so people dont shrug off such bites... J.

Having lived in the North East and worked in the health care field, Lyme disease was always a fear As parents, we would check our children at the end of the day for any ticks. These ticks are tiny and hard to see- many times you wouldn’t know that you were bitten.
If you had certain symptoms during tick season, testing for Lyme disease is done. Treatment success is best when caught early.
A friend of my son’s has arthritis of the knee due to Lyme. The father of a family friend living in Old Lyme, CT, was one of the first known patients with Lyme- he had encephalitis.
There are similar diseases in other parts of the country- like Rocky Mountain Spotted Fever and others.

Following...

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.

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.