Lyme knowledge spreading in lyme country as friends of friends are getting it

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astroman
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   Posted 5/6/2018 3:10 PM (GMT -6)   
I have begun to notice this. Its all over all of the media up here, every week, so people now know, its almost common knowledge and cant be ignored. This is known lyme country so its about time.

Just last week two people mention so and so was out of commission for "x" amount of time, and one did not heal yet. They looked surprised and somewhat scared telling these stories of friends- looking for my backing up these facts, as they now know they are also at risk..

Roughly 15% of the population has / or had lyme this in one county alone. Its on the counties website, next to it being an outdoorsmans "paradise".

we are now in the ballpark more than ever.

mpost
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   Posted 5/6/2018 3:19 PM (GMT -6)   
i do not want to spoil your optimism, but may is lyme awareness month. i follow closely the media since i got sick, so for 4+ years now and there is a pattern. in May they all write more posts about lyme, it's in the news more often.... then is dries again.

it is true im last 5 years things have slowly got better and i saw more coverage annualy....but May is not the month to assess it, it can be misleading.

astroman
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Date Joined Mar 2014
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   Posted 5/6/2018 6:57 PM (GMT -6)   
Nothing can spoil my optimism. I wrote a thread on May bring lyme awareness month last week.

Yes, around here (upper west side of the great lakes in USA) they know more about it. So if they get it, its not like they never heard about it. Apparently its not like this yet in your areas.

Yes people will never take 100% precautions.

People know about the dangers of drunk driving or texting while driving, some will never stop though. Same with tick dangers. Some will not care. Some will.

Post Edited (astroman) : 5/6/2018 10:53:03 PM (GMT-6)


Girlie
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Total Posts : 33965
   Posted 5/6/2018 7:02 PM (GMT -6)   
I just came in from doing yard work....man I couldn't get ticks off my mind...not sure why it's bothering me more this year than the past few years...maybe because I'm down to a handful (well maybe two handfuls) of symptoms...so I'm feeling like I am closer than prior years...

IDK - maybe I'm just more paranoid the longer I have this disease. (now how's that for putting a negative spin on it) lol
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

astroman
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Date Joined Mar 2014
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   Posted 5/6/2018 7:08 PM (GMT -6)   
Paranoid is good, its prevention.

There are more ticks in my area this year. Guessing that the record deep snow insulated them from the cold.
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in Jan 2016. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.

logmoss82
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Date Joined Mar 2016
Total Posts : 103
   Posted 5/6/2018 10:53 PM (GMT -6)   
I agree with OP, This year there does seem to be more of a positive culmination of events coupled with increased awareness of the true potential danger of Lyme among common people. There is always talk and media hype and news blurbs around the time of Lyme awareness month, but this year there seems to be a bit more substance and common sense to the subject.

In the past it was the same exact redundant script on any local news segment. "some believe X. Others believe Y. Heres what the CDC says" This year the script seems to be "more and more people are having serious ongoing health issues after tick bites and want to know why." More people are effected directly or indirectly than in the past and it seems this year more people are asking practical sensible questions. I feel this is at least a small step in the right direction. Simply asking the right questions can sometimes lead to progress.

The CDC isnt pushing some "new study" that "proves" antibiotics dont help persisting Lyme issues, or a morbity/ mortality report about the fatal dangers of antibiotic treatments like they did last year, and the year before. It was easier to accept those reports if you dont know anyone with Lyme and the takeaway was "those crazy people who THINK they have Lyme" They seem to release such reports when their science is being called into question as distractions, and most of the time it has worked.

There were some good credible studies released by well respected researchers last year that showed Lyme persistence that got overshadowed by the CDC media blasts. Because the CDC argument always goes like this 1) Lyme does not persist 2) even if it does, more treatment isnt helpful. So the media ignored the idea of persistence at all, skipping to the chase or the conclusion to make a snappy condensed headline which was "persistence or not, more treatment isnt helpful" That was the takeaway for the last 3-4 years or so.

For the mainstream media and the general public with short attention spans, those headlines "CDC says antibiotics dont help chronic Lyme" and "False positives lead to unnecessary dangerous treatments" were all that stuck. This year the CDC itself released a report that said tick diseases have doubled from 2004-2016 and provided their opinion that the national public health authorities may not be prepared to deal with it.

And while celebrity stories of Lyme can raise awareness, they can also backfire because they show it in a way that is hard for everyday people to relate to. Unlike the past few years year there's no Yolanda Foster or Avril Levigne or Ally Hilfiger stories sucking up Lyme headlines and presenting it as some reclusive wacky millionaires disease, while on the red carpet of a high end "Lyme Gala" in SoHo that looks more like an award show than a disease fundraiser.

Real people are wondering why their friends and relatives are dealing with Lyme issues after treatment and why the testing is so innaccurate. Regular everyday people are dealing with these issues more and more and even congress asked some really good questions and provided some pretty good directives that came from the Tick Borne Diseases Working Group last month. It's a hot topic at the moment and it's not being dismissed with scorn and scepticism quite as much as it use to be, again because of peoples personal experiences.

Where there's smoke theres usually a fire. Some of the archaic dogmas of the CDC and IDSA are finally coming into question because of simple common sense and personal experiences that differ from what people are being told about the disease. They seem to be a little more reluctant to go on the record saying some of the patently false statements they had no problem making in the past. CDC even removed IDSA guidelines from their website at the end of 2017, which had been on the site since it's creation. They seem to finally be back-peddling and taking a less offensive posture, even if only slightly.

The message is out in most endemic areas that Lyme isnt just a simple summer flu and some fatigue and knee pain that passes quickly, but can really cause a lot of damage and people are passing this on to friends, family and coworkers.

Even here in GA where the CDC officially reported less than 10 cases of Lyme in 2015, there are brand new tick warning signs being posted this summer in all GA state parks.

These are all pretty good signs as far as I'm concerned. We certainly have a long ways to go, but perceptions are slowly changing, Chronic Lyme doesnt sound like a conspiracy word only used by hypochondriacs and there is an increased awareness of the potential dangers. I really hope we can get some real momentum out of all this and it lasts beyond just May.

astroman
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Date Joined Mar 2014
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   Posted 5/7/2018 12:04 AM (GMT -6)   
Well said.

I see it more in the media and finally on physical signage at trail head parking lots.

The media here is more receptive of "chronic" illness from lyme. They are now reporting the reality of "chronic lyme" in everyday local people for the viewers/readers (not the Hollyweirdos).

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 388
   Posted 5/7/2018 6:57 AM (GMT -6)   
I'm hoping that things really are changing.

I'm seeing more articles about babesia as well. The thing that always gets me about awareness is that everyone seems to think it's just lyme, they don't get the idea that ticks carry multiple diseases most of which are transmitted very quickly. They still have this mindset that as long as they find and remove that tick in 24 hours that they're safe and it just isn't so. Hoping more people are starting to get it, doctors included. We'll see how things go this summer as I'm in tick country as well. I have seen a slow and steady change year over year in the mood here and in the response the doctors give to those who come up with embedded ticks.

Hollyweirdos lol. At least I can console myself that what I have might soon be fashionable ;-)
Bulls eye rash August 2013
Started treating with Buhner herbs July 2017
Treating Borellia, Babesia and Bartonella as of November 2017

1000Daisies
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Date Joined Apr 2016
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   Posted 5/7/2018 9:41 AM (GMT -6)   
I know what you are saying. It's beyond just being Lyme Awareness month from what I've noticed.

Several years ago, very few people had a clue about what we were going through. Nowadays, it seems like "everybody knows somebody with lyme disease". So, the understanding has definitely increased from even personal experiences now. And the information on the internet has definitely exploded from when I first started.

And Astro - you've been at this longer than we have, so I'm sure you have seen even more change than what I have seen. smile

It has definitely changed dramatically from when I first started this journey several years ago.
But yet, we still have a long ways to go!
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

astroman
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Date Joined Mar 2014
Total Posts : 5099
   Posted 5/7/2018 11:26 AM (GMT -6)   
Huge changes since the mid 1980's - when it first hit the printed news around here, no internet!!

The first whom I personally know was treated in 89 or so- at a university.

The Drs were clueless with my bulls-eye in early 90's. Yes, a month long bulls-eye with flairs of all the symptoms after, and health care did nothing for me. I should have went to the university and just paid for it back then.

I meet very few people who have not heard of it by now.
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in Jan 2016. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.
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