Every time I go to a doctor, hear the lyme quack jokes, or the no such thing as chronic lyme, I wonder if Hiv infected persons before the mid '80's acknowledgment were treated like us?
Were they shoved for one place to another? Laughed at, or treated like a hypochondriac?
Just curious...I was in my teens when the whole world was made aware of HIV, and now that I suffer from lyme...I wonder if those poor souls went through our disease treatment disaster.
Posted by Robin123 (Member # 9197) on :
In the beginning, I'd say at the end of the 70s and very early 80s, it was very mysterious - no one understood what was happening. AIDS patients had to fight for help.
They formed an organization called Act-Up and they did - they even spilled AIDS blood on the steps of the US capitol to get attention. They wanted treatments and services.
Read "And The Band Played On," by Randy Shilts, about the politics of the time.
Now there are a lot of medical care options and a lot of services, at least here. I don't know about elsewhere.
Same thing actually happened with the syphilis history, I understand. Thinking people were mental cases and treating them badly.
Posted by Andie333 (Member # 7370) on :
AIDS was nicknamed the "gay plague," and anyone who had it had to deal with that negative, no matter how they had contracted the disease.
In the early to mid 1980s, there was a lot of AIDS hysteria, because that disease could be contagious.
Some hospitals refused to treat AIDS patients (or relegated them to separate isolation sections); many funeral homes refused to handle someone who had died of AIDS.
Families were often driven out of neighborhoods, as in the case of young Ryan White, whose family was forced to move several times before he ultimately died.
There was panic about the national blood supply.
Although Lyme can often be "invisible," AIDS patients frequently had dark skin lesions called Karposi Sarcoma, which made it tough for them to stay hidden about their disease.
The big commonalities, I think, were ignorance about AIDS (and now Lyme),
cost of treatments,
a shortage of doctors who were willing enough and skilled enough to treat the diseases,
and the necessity of patient advocacy.
Posted by Keebler (Member # 12673) on :
- In early winter of '84 the national headlines were that even the funeral homes in some states would not accept the bodies of AIDS victims. -
[ 03-31-2010, 11:07 PM: Message edited by: Keebler ]
Posted by MariaA (Member # 9128) on :
uh, what horrible stories. I'm so sorry you experienced that, Keebler!
It might be good for some people to see Dr J's article about his experiences treating early AIDS patients, and the way that what he learned there helped him recognize a similar issue with Lyme patients. It's absolutely moving: http://www.jemsekspecialty.com/ncmb-remarks.php Posted by kday (Member # 22234) on :
If you want to read about a very similar scenario, read about the Tuskegee study (Syphillis). The CDC actually has a good timeline and website about it since the government eventually became "apologetic" about the whole thing.
My history teacher told me we study history to learn from it. Unfortunately, I don't think we ever learn from it.
Once enough people are sick, things will change. In fact, I think things are starting to change. Non-lyme health care practitioners I have been seeing lately have started taking an interest in Lyme, and I've done nothing to try to convert or convince them of anything.
According to my psychiatrist, her best friends husband is severely disabled by the disease after having no diagnosis for many years.
In fact, my primary care physician now has Igenex phone numbers taped to his desk in his office (along with other labs he uses). I didn't say anything, but I was surprised to see that. I just happened to coincidentally see it taped to the desk when paying for a visit recently. He watched another patient develop addison's disease from Lyme as well.
Things will change for the better. My local E.R. is completely clueless and thinks I am just nuts if I show up, but they treat all the patients horribly anyways. I would never expect better treatment there.
Posted by Robin123 (Member # 9197) on :
Keebler, I'm so sorry.
The same thing happened here to a number of people, a few of whom I knew. They battled so hard, yet lost their lives too.
The irony of the whole situation is, I knew to stay away from any risky behavior regarding AIDS, yet had no idea I harbored a communicable illness. No idea at all.
Posted by street129 (Member # 23472) on :
keebler..i am lost for words.....right now im in shock mode...
my daughter little friend lost her life to aids, my daughter found out by seeing a letter on her night table one night when my daughter used to go visit her after my daughter gets off from work, after my daughter saw the letter that she had some aids with the number 2 after it, when she used to visit me at my house, i used to asked her why her face has so many black spots and pimples all over her face and back..she lis and made up a story...OMG...it makes sense now, she didnt wanted us to treat her the way society treat people with aids...i feel so bad...anyways...
my daughter ran home to me crying, and wanted to bath, and wash wash wash, because her friend didnt tell her she had aids...my daughter used to eat, and drink out of her wares, my daughter was scared...but back then we knew how people behave towards people with aids, and my daughter reaction was no different...she died last years young girl too, she died at 28 years.
tuskegee university, that's the university my daughter graduated from...2001...she came out suma cumlada
..also one of my sisters, came out cuma cumlada from her collage back in the 70's...
me well i hated school with a passion, took college courses, but didnt finish..
![[Frown]](frown.gif)