I feel kind of mixed about this. While I like awareness being brought to Lyme, there's a definite slant in this.
I'm having trouble getting past page 3 where it perpetuates the myth of ticks needing to be attached for 36 hours and that false positives happen in people who don't have Lyme.
Posted by Judie (Member # 38323) on :
I was able to get to page 4 and like that it at least said this:
"Moreover, it is nearly impossible, with current tests, to know whether the infection has been cured."
Posted by Keebler (Member # 12673) on :
- A terrible blow to journalistic standards. Terrible.
The inclusion of a few good points seems to give more power to the errors and slant. I can feel the distain of the IDSA toward those with lyme. -
Posted by droid1226 (Member # 34930) on :
Is it possible to know if it's been cured with tests? I mean the article is $%*@, but I thought that part is true.
Posted by Judie (Member # 38323) on :
I just imagine a typical person reading the first page about the failure of long-term antibiotics and then the success on rife and herbs. Then the reader just discounting everything else because even the patient says it could be the placebo effect (she was probably asked a misleading question to say that too).
While I like the personal slant, the patients that they interviewed just don't have the recognizability to be taken seriously at this point (I hope they do someday though).
I finally got to the last page and it has the 36 hour myth repeated.
The tick that got me was only attached briefly (less than an hour).
At least they could have included someone familiar like Amy Tan or Daryl Hall in it.
Posted by Judie (Member # 38323) on :
"Is it possible to know if it's been cured with tests? I mean the article is $%*@, but I thought that part is true."
That's one of the parts I thought was accurate in the article. I've asked 3 LLMDs that question over the past year.
Posted by Keebler (Member # 12673) on :
- Yes, as Judie says, it is true that there is no test that can prove the absence of lyme.
This is where a patient's body is the test, though. A good LL diagnositician can often sort out lyme from other things.
Where multiple infections are involved, making it harder to distinguish, covering all the bases can often work. One reason for the combinations and rotations - and support methods.
Many other doctors (who are not LL) usually are so put off by patients that they would never trust them or even put any credence in on-going symptoms they would report.
Over all, in medicine, it's very disturbing to me that patients' accounts do not carry much credit, even when observed over time by LL doctors who have researched at length and treated thousands with lyme, et.al.
Non-LL doctors also don't know enough to even connect the dots or understand the science of lyme and the need to stay with it, as long as it takes. -
Posted by Atta (Member # 30786) on :
He writes:
"Tufts University School of Medicine, is conducting a similar study in humans. (The scientists have obtained permission from patients to permit ticks to feed on them.)"
Wow, these people have no idea what they are allowing to be done to their bodies. But, hey, let's just infect more people and study them instead. Current patients be damned!
He was interviewed on Fresh Air today and it was pretty similar to the article.
I'm going to look on the bright side (because today is a bad day and that's all I can do) and say, "even though it could have been better researched and more informative, at least it cultivates more awareness". But I'm getting tired of saying that.
Posted by poppy (Member # 5355) on :
I thought this was below par journalism, with a clear ax to grind. Bad publicity is not useful. Makes the public "aware" of false information and makes our lives more difficult (and our doctors).
Going to start a new thread with one quote from the article by Wormser.
Posted by Keebler (Member # 12673) on :
- About test subjects allowing tick bites. They will not be followed for months or years and the tests used will not likely be very accurate, either.
My guess is that any symptoms that show up out of the "box" or a certain time frame will be dismissed.
Other tick infections likely ignored, too. Sigh.
Be On the Look Out as it seems to have flown the coop here: "First Do No Harm" -
Posted by Atta (Member # 30786) on :
I agree that bad publicity can do a lot of harm. I had the fortunate chance to have three people come to me today to tell me about the interview.
They are new to Lyme disease and had listened in so when they approached me and asked about it, it gave me the opportunity to address some of the incorrect statements he made.
I, of course, would have loved to hear an interview done by someone who has Lyme and has personally been through the experience. So much more to offer there and just a more affecting message for sure.
Yes, the tests on humans, I wonder how they will even measure the disease. So sad and so wrong. They are giving these people a lifetime of hell.
Posted by Robin123 (Member # 9197) on :
Wow - as Atta mentioned, he was interviewed today and I heard him on the radio. Wow is all I can say.
Ok, he likes science - he believes in science - then how can he make the statements he's making, which are NOT scientifically based?
The 36-hour tick attachment - as Judie just noted about her brief tick attachment. I've heard 20 minutes. Science, Michael - the bacteria can be in the tick saliva.
He completely failed to mention the new PA test that can culture the bacteria. THAT'S scientific and definitive.
Where does he get his info that 25% do not get a bull's eye rash? Try more like 70-80% don't get one.
Where does he get his info that people start with a bull's eye rash or flu-like feelings? There's a lot more starting sx, including a complete lack-of, in my case - 10 weeks after the known tick bite before my neck and shoulders went sore.
He didn't mention other insect vectors, and he didn't mention congenital Lyme.
The three-weeks doxy antibiotics treatment. No, there is no science saying that three weeks is all that's needed. People who are put on three weeks doxy at a low dose go chronic sick.
Said IV didn't help patients. That's blatantly untrue.
Oh, and only treat if you're in an endemic area, like the East Coast, Upper Midwest, and maybe moving down towards Florida. He completely failed to understand the seriousness of Lyme in the rest of the country. For example, nymphal ticks in places in Mendocino Cty, Ca are 41% infected now.
He said patients who say they feel better from treatment could be saying this due to placebo affect. I say the science hasn't caught up with what the treatment's doing. He included Rifing in that assessment. Again, I say science hasn't caught up.
To his credit - he said there's also co-infections that people have to watch out for, and he named babesia and anaplasmosis.
He said when he first wrote about Lyme, he received 207 million hate emails! So then he felt he needed to research it more.
Well, Michael, you're about 5% correct in what you said today, and 95% incorrect. You got another 95% of the way to go, including some already known science.
Posted by Keebler (Member # 12673) on :
- The NPR link is below. Just keeping this set together for ease of reference.