CDC Video: "Feeling Worse After Treatment?"

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
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ChronicLyme19
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Re: CDC Video: "Feeling Worse After Treatment?"

Post by ChronicLyme19 » Wed 31 Dec 2014 21:07

Unfortunately, perfect doctors don't exist. Everyone makes mistakes, even big mistakes, including LLMDs. There is no Dr. House. All you can hope for is a doctor who has an open mind and is willing to help you determine the cause of your ongoing symptoms, rather than just relegating you to syndrome world. Having doctors that are close minded and discredit some of those options isn't good, hence why I think that if there's any decent evidence you have TBDs, you're better off with an LLMD because they leave more options on the table. Does that mean that all LLMDs will be able to cure you? No. Does it mean that they won't screw up just as much as the other twenty docs you saw before them? No, but if you really do have ongoing TBDs, they are probably going to be able to help a lot more than most IDSA docs will.

For me it's like my severe upper back/spine problems. The first 10ish doctors gave up pretty easily and said sorry you just have a pain syndrome. I said, ok, I'll settle for that as long as you can tell me what broke, until then I am going to keep searching to figure out if it's fixable or not. About 4 years later, I'm getting pretty close to figuring out what's wrong. It has to do with one particular nerve, and it seems to fluctuate so I'm in the process of figuring out what combination of permanent damage and ongoing damage I have. One side healed, but the other didn't and I'm trying to figure out if it's going to stay that way or if it's still from the residual ongoing infection.

Will my LLMD be able to cure me completely? I'm not sure, but so far I've gotten most of my life and abilities back, I can work again, and I'm no longer on my death bed. They're willing to take an honest look at any evidence I bring up and discuss all the options with me. Do they have all the answers? No, but they sure try their darndest and that's a hell of a lot more than the first 15 docs did.

Do LLMDs have a higher rate of screwing up? I'm not sure, perhaps, but maybe it's because they take on the super complicated cases other doctors won't even touch. To me, chancing it with them was much better than sitting around in pain management and dying.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

velvetmagnetta
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Re: CDC Video: "Feeling Worse After Treatment?"

Post by velvetmagnetta » Wed 31 Dec 2014 21:46

Well said, ChronicLyme19!

"Syndrome World" Noooooo!

RitaA
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Re: CDC Video: "Feeling Worse After Treatment?"

Post by RitaA » Wed 31 Dec 2014 22:52

I agree, velvetmagnetta.

ChronicLyme19, I just noticed that there aren't any comments posted to the YouTube video yet -- perhaps because the CDC is being flooded by comments that need to be moderated and/or because it's holiday season.

I'm not sure what the size limit is for YouTube comments, but I'm hoping that you did (or will) include as much as possible from what you posted above. You write eloquently and from personal experience, presenting an important point of view that no doubt resonates with many Lyme disease patients. Maybe (just maybe) it will help even one person at the CDC better understand why some Lyme disease patients have felt the need to seek advice and treatment from medical doctors or naturopathic doctors outside of mainstream medicine.

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ChronicLyme19
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Re: CDC Video: "Feeling Worse After Treatment?"

Post by ChronicLyme19 » Thu 1 Jan 2015 0:25

Thanks, I try to stay on point, but every once in a while I need to rant. This is what I submitted for a youtube comment below. I tried to stay on point of showing that there are more possibilities than Lyme or not Lyme, and giving my own example of an underlying medical condition that has complicated my case of Lyme. I saved the pro-LLMD comments from the youtube page because I'm not sure people will listen. I figure I have a better chance not showing that opinion and getting the point across that things aren't so black and white. I'll save the comments about LLMDs and the problems with the suggestion to find an IDSA and use only FDA tests for another post.

"The problem I have with this video is that it implies that all chronic/complicated illnesses that share symptoms with Lyme are due to ONE cause, either persistent Lyme or another medical condition. There are actually more choices than just the first two:

1) You can have an underlying medical condition
2) You can have a persistent Lyme infection
3) You can have BOTH an underlying medical condition and a persistent Lyme infection that share symptoms.
4) You can have a combination of 1, 2, and additional underlying medical conditions.
5) You have permanent damage from a past infection or medical condition.
6) You have a combination of permanent damage from a past infection or medical condition and have ongoing issues from one or more other medical conditions.

On one hand I do agree with the video, you need to be ruled out for other conditions, you can't just self diagnose, BUT, this is only part of the story.

This video does a disservice to the public by only pointing out option #1 and #2, and failing to teach people that they can have multiple things wrong with them at once. There are other gray areas that need to be considered. What if Robert had both? Diagnosing him with just one problem instead of the other would be just as bad as not diagnosing both. This may not be his case, but certainly it's a possibility that needs equal light for people trying to figure out their own medical situations.

Here's a case of someone who did have BOTH (Thanks for the link RitaA):
http://pituitary.mgh.harvard.edu/mljpit.htm

The other problem I have with this video is the tone. It discredits those of us who do have persistent infections. There is a small, but existent portion of people who have other underlying medical conditions that are not able to fight off infections like the general population. The studies that show one round of antibiotics cure all Lyme were done on controlled populations where they only had one condition, Lyme. These studies were not done on populations of people with immune deficiencies, genetic disorders, and other various underlying medical conditions that may hamper the person’s ability to fight infection properly.

One good example is with immune deficiencies such as a hypogammglobulinemia or CVID. These are often are hard to spot in routine bloodwork because overall globulin levels may remain normal, while total IgG levels are deficient. These deviancies have been proven to hamper mice’s abilities to beat Lyme and they end up with a persistent infection, just the same as a human with CVID has trouble fighting infections. This is just one example of how an underlying medical condition can complicate the treatment of a Lyme infection.

Source
Title: Delays and diversions mark the development of B cell responses to Borrelia burgdorferi infection.
Authors: Hastey CJ1, Elsner RA, Barthold SW, Baumgarth N.
http://www.ncbi.nlm.nih.gov/pubmed/?ter ... evelopment
J Immunol. 2012 Jun 1;188(11):5612-22. doi: 10.4049/jimmunol.1103735. Epub 2012 Apr 30.

Because of situation like this, I caution everyone to find the GREY. Doctors are taught to find one cause for all the symptoms, when in reality, it can be one cause or it can be from many.

You have to find a doctor that is willing to find ALL the puzzle pieces, Lyme, co-infections, genetic conditions and other underlying medical problems. No matter what organization your doctor belongs to, IDSA or ILADS, if they aren't helping you find all the causes, get a second opinion from someone who will think critically and not just check you off a list or put you into one box."
Half of what you are taught is incorrect, but which half? What if there's another half missing?

RitaA
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Re: CDC Video: "Feeling Worse After Treatment?"

Post by RitaA » Thu 1 Jan 2015 0:40

Excellent job, ChronicLyme19!

velvetmagnetta
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Re: CDC Video: "Feeling Worse After Treatment?"

Post by velvetmagnetta » Thu 1 Jan 2015 16:05

Still "no comments" yet. But it does have 168 views with 2 likes and 3 dislikes!

velvetmagnetta
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Re: CDC Video: "Feeling Worse After Treatment?"

Post by velvetmagnetta » Mon 12 Jan 2015 7:32

We're up to 7 "likes" and 86 "dislikes"!

...and still "no comments"? I find that hard to believe...

velvetmagnetta
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Re: CDC Video: "Feeling Worse After Treatment?"

Post by velvetmagnetta » Thu 15 Jan 2015 5:45

Hey ChronicLyme19 - your comment is up!

I could be way off base, but I'm guessing your lucky number is 19?

When you get a chance, you all should read all the comments the CDC has FINALLY allowed to be posted. Whew! The CDC really dug their own grave with this video - and what did they think would happen when they put it on YouTube?

Now everyone will know how poorly the Lyme epidemic has been (mis)managed, not just those of us in the Lyme Community. Wow. They must really have a death wish. I will be surprised if those in charge during this time at the CDC don't get charged with criminal neglect and misconduct.

Now, we're up to 8 likes and a whopping 264 dislikes! And there is not one pro-CDC comment. Not. One.

Look how many people are so terribly ill. Why have antibiotics helped everybody but me?

(Maybe I have a pituitary tumor instead?)

hv808ct
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Re: CDC Video: "Feeling Worse After Treatment?"

Post by hv808ct » Thu 15 Jan 2015 18:16

Re: CDC Video: "Feeling Worse After Treatment?"
Pos tby velvetmagnetta » Thu 15 Jan 2015 5:45

Now, we're up to 8 likes and a whopping 264 dislikes! And there is not one pro-CDC comment. Not. One.
As with most comments online, it’s the people who disagree who tend to comment. And it doesn’t hurt that the LDA and CALDA urged their membership to comment.

What’s interesting about the commenters is that almost all of them are women. Reminds me of CLADA’s last self-servicing survey of self-selected Lymees—88% were women. Now a question from Epi 101: what does this tell you about chronic LD?

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ChronicLyme19
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Re: CDC Video: "Feeling Worse After Treatment?"

Post by ChronicLyme19 » Thu 15 Jan 2015 18:21

hv808ct wrote:What’s interesting about the commenters is that almost all of them are women. Reminds me of CLADA’s last self-servicing survey of self-selected Lymees—88% were women. Now a question from Epi 101: what does this tell you about chronic LD?
That women have the gonads to speak out about something that they see needs to be fixed. :bonk:
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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