• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Opportunity to help raise Lyme awareness at the IDSAweek this October

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
I appreciate the efforts and sacrifices people are making to stand up against the IDSA and CDC lyme guidelines that have harmed so many for so long. I cant be there personally but I can buy a $20 LDweek t-shirt to help fund the effort. I know there are only 3 days left to buy the t-shirt so I will oder today. This will give me something to wear to raise awareness locally and at the same time provide support in a small way to those well enough to protest at the IDSA conference in Philly.

Fot those here who feel they can afford $20 for a tshirt with proceeds going to fund this protest you can fink a link to purchase the tshirt at the facebook timeline I will post next. I do recall their protest this past May. They had some news coverage and they expect more coverage this time. Im not affiliated at all with this group but I am a lyme and co patient that is tired of the status quo related to medical opionions and guidelines related to lyme and chronic lyme and happy to give $20 to the effort. The current medical approach to lyme disease diagnosis, treatment, education and awareness NEEDS TO BE CHANGED NOW! How many more people have to suffer the losses we have before there is useful progress. This is a war with many casualties that have little to no voice in the process, this is a small way to let our voices be heard. I want to help those well enough to fight on the front lines.
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
This was a post I made on my facebook timeline.

Some of you may be aware that I have been fighting a 'mystery' illness for over ten years that eventually made me bedriden much of the time. This past April finally got confirmation of TBI (tick borne illness) with strong suspicion of lyme disease. I have been in treatment since April and believe I am starting to see some improvement. There are hundreds of thousands that have been infected per the CDC but only about 30,000 get reported and recognised because of inadequate testing, diagnosis, treatment and guidelines. Those that contract lyme and coinfections suffer so many losses, health, friendships, careers, relationships, finances drained, misdiagnosis for YEARS and have to fight for proper treatment if they can find a knowledgeable doctor willing to treat. I just wanted to make you aware of a group planning to raise lyme awareness this October at the IDSA and they are selling tshirts for $20 to help fund this effort. If you are inclined goto this facebook link and you will find a link to the tshirt booster for LDweek and thanks for listening.

For those that dont know much about lyme disease google Under Our Skin and you will find a documentary created 7 years sgo that does a decent job explaining what lyme is and the various battles lyme patients face trying to get diagnosed and treated.


Ordered tshirt, made small donation and added entry in facebook, which I rarely use.
 
Last edited: