New Huffington Post Article Series: Is Lyme the new AIDS?

Hi everyone,

I hope the stigma of this association doesn't upset anyone, but as a gay man who feared AIDS all his life and ended up in a diagnostic purgatory for many years that most of you will be familiar with, and ultimately was diagnosed with Lyme, this is an appropriate metaphor for my life.

I just published the first of a three-article series (because of word count limits) on Lyme disease @ Huffington Post because I'm absolutely obsessed with getting people to understand the real devastation of this epidemic. Please read it, let me know what you think, and if you think it's worthwhile, please share it.

I'm not being paid to write these articles--I am doing it to try to help others who hopefully won't end up as damaged as I've been before finding a diagnosis and treatment. This forum has been a life-saver for me, so I am sharing it here.

http://www.huffingtonpost.com/david-michael-conner/lyme-disease-_b_8262536.html

Thank you,

David

Hi Nosila,

I definitely will. I've decided that I need to follow that advice to "make your mess your message," so I'll keep beating the drum on this. It's such an insane way to live that I have to talk about it just to remind myself that it's real.

Great article David and I anxiously await your next one.

I wondered how lyme got all the way over to California and where did it originate. I read the following article, along with many others, and my heart tells me the government is responsible. That being said, they sure as heck don't want to recognize a disease that they created. Their liability???? We all know the government is not responsible for anything.

http://news.nationalgeographic.com/news/2014/02/140228-lyme-disease-borrelia-burgdorferi-deer-tick-science/

~Annette

Trav, I think Steere found "lyme arthritis" in 1977 but Burgdorfer isolated the spirochetes in 1982 and called it lyme disease.

However national geographic could have made this more clear, I agree.

I did not read the article, cause I have troule reading

but I read your post


and others

It is mind boggling to me, that still the masses choose to accept info that is fed to them by the media, tv,newsapper, info that is not true


That people can be so mean and judgemental

that if you are no longer like 'them' you are kicked out of the
'tribe'

I too want it to be accepted, as others have stated, in grassroots lyme groups, like the AIDS movement,
things changed only because the PEOple, grassroot groups joined together and made it happen

David, good article. Glad Huff Post put it in the Healthy Living section.

It's not the first time Lyme has been compared to HIV/AIDS. I pretty sure that at least one of the docs in Under Our Skin mentioned it.

As far as stigma goes, I think there is as much stigma in saying you have Lyme as there is as to HIVV/AIDS although today is different than it was in the 80's.

One big difference is that there is no one patient population to concentrate the research on. In addition to that the CDC tracking is a joke. I was born in CT, exposed in CT, then moved to NJ for school, then to MA for my first job and 20 years ago to NC. So when my case is reported to the CDC (I tested positive with the CDC criteria), it will be reported as a case in NC. Now there is Lyme in NC, actually in 78 of 100 counties with at least 10 counties endemic. But it still is a stupid way to track it.

Now when my son tests positive (and I'm sure he will), he'll be listed as NC as well even though I would have passed it to him congenitally. If we can even get my daughter tested and she shows exposure, she'll be listed in FL.

With the exception of veterinarians, docs don't know anything. Unless there is a bullseye rash, doctors ignore it and even then some say lets wait and see.

People need to know so that they can be proactive. Hearing from someone who went through what you and others have and are going through.

Keep up the good work.
Kim

Talking about HIV/AIDS, history repeats itself:

"Because of the long incubation period of HIV (up to a decade or longer) before symptoms of AIDS appear, and, because of the initially low incidence, HIV was not noticed at first. By the time the first reported cases of AIDS were found in large United States cities, the prevalence of HIV infection in some communities had passed 5%.[66] Worldwide, HIV infection has spread from urban to rural areas, and has appeared in regions such as China and India."
/en.wikipedia.org/wiki/History_of_HIV/AIDS#Spread_to_the_western_hemisphere

Not the first time we ignore a serious pathogen just because it does not kill people instantly ...

An interesting quote from a documentary I was watching (not Lyme related, but 'sciency' none the less) -

'In science the truth goes through 3 phases; First it is ridiculed, then it is vehemently denied, until finally it becomes self evident'.

I though it kinda resonated well with this type of topic as much as it did with the actual topic being discussed on the documentry. I just can't for the life of me remember which scientist said it!! I think I will watch it again ;)

Great article. I too believe that Lyme is worse than aids BUT for those that do treat, it does get better. One can go back to becoming symptom free or almost symptom free. For those that were born with it or got infected early on, if treated, they too can have a better future. THis is not the case with Aids.

Yes, the stigma, the financial burden, is worse than with aids because at least the aids patients get treated through insurance. We have to pay out of pocket, even if we can't work. We have to see our children suffer and be ridiculed and feel everyone thinks we are all nuts. We risk to pass these diseases to our children and no one cares, despite documented cases. Then, we have to leave not knowing IF we passed it to our children and wait to see if they get sick or not.

Thank you for sharing this, mpost!!

It was very thoughtful of you to remember this thread and choose to post on it.

Loved it all! It's about time Lyme got some more attention. Thank you for being brave enough to share your story. :)