posted
I just watched it. The segment was very generic, not much detail, but said LD is in all 50 states, take abx if bitten, should cure it. Yeah ok.
A lady was profiled about her struggle for 10+ years with LD, her story is in a magazine out right now, I can't remember which one. She was misdiagnosed with CFS for many years.
Posts: 3 | From Michigan | Registered: Jun 2008
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posted
I will defer to YOU!! Just posted the same. I'll go erase my thread!
The segment hasn't been aired here in CST.
Just saw it... Dr Nancy Snyderman said someone in the studio stopped her that morning and said I was bitten yesterday and have the rash and I feel bad this morning.
So she said, that was within 24 hrs of being bitten. I THOUGHT she mentioned the usual thinking of "36 hrs" as not always being true.
One small step for mankind! Now if we can get them to admit it can be transferred IMMEDIATELY!!!
PS>>> It was SELF magazine. I'll go retrieve the link to that.
Here it is:
JUST ONE OF THE MANY THINGS YOU MISS OUT ON IF YOU NEVER GO TO GENERAL SUPPORT HERE!
SELF Magazine article concerning the woman in the TODAY show segment:
posted
A friend of mine just called and left a message saying that she saw this.
According to her, she thought it was good because it highlighted the flaws of the testing (false negatives) AND down-played the importance of the EM rash as a diagonstic criteria.
Posts: 561 | From mass | Registered: Jul 2007
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posted
I just watched it, it just finished and the woman who wrote the article in Self magazine about her journey through it, was interviewed.
Clearly, lyme disease is becoming an epidemic now.....I don't see how the IDSA or any of those nay sayers can deny it.
It was pretty good, it talked about how testing is not good and the rash is not always present. It was focused more on the current epidemic and season. And about the challenges in diagnosing. It also mentioned the debilitation that can occur if not caught and treated early.
posted
I saw the segment this morning and thought it was decent for a Today Show topic--I mean really, what can they cover in 5 minutes?
The profiled the woman from the Self Magazine article, but also stated that she was misdiagnosed with CFS and suffered for 10+ years.
Dr. Fallon was on and discussed the inaccuracies in testing. The point was brought up that many people don't see or don't get the rash, that it is wide spread and The Today Show Dr, did go with the typical 2-3 wk of antibiotic treatment, but I believe said that within the context of seeing the rash and knowing that you were bitten. It wasn't in the context of being misdiagnosed for years.
For those who missed you can visit the Today Show website and watch this morning's segment and read the Self Article on their site. http://today.msnbc.msn.com/id/3032633/Posts: 9 | From Providence, RI | Registered: May 2008
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Wow, so in the month of June, we have:
The Today Show Segment Fox News Segment Psychology Today article First Magazine article Self Magazine article
And I "think" Under Our Skin dvd is being released in full form, as well as being shown in a couple different states.
Not too shabby. I pray these segments and articles just keep multiplying!!
quote:Originally posted by painted turtle: Might it be POSSIBLE for some people to actually do okay with
the 2-3 weeks of antibiotics and go on to be fine?
MAYBE... But ONLY if they had NO coinfections!!!! Most who were treated for 2-3 wks end up HERE .. or continue to suffer for the rest of their lives with "FM, MS, CFS", etc.
and remember... The spirochetes replicate every 3-5 wks .. guess what happens if you're already OFF abx?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
It was a good segment, however the last thing that was stated by the medical correspondent is that you can be treated with two to three weeks of antibiotics!!!! (((ERRRGGGHHHH!!!)))
Also, the Today show is asking for personal stories regarding being failed by the medical system. People, we have stories!!!!! This is the link to submit your story:
"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
My husband had a huge bullseye around 1994 and got 3 weeks abx. He never had a symptom, apart from the bullseye, and thankfully he's never been sick since. (unlike me!)
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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adamm
Unregistered
posted
I figure the folks who can do okay with the IDSA-
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I saw the Today show segment and was really disheartened by Dr. Snyderman's statement about "two to 3 weeks of abx" after being bitten.
As a reply to Turtle, I found my tick bite and bullseye rash within hours and rushed to an ID doc. This was in 1996. He treated me with a short-term course of abx (the type she suggested).
The rash disappeared, and I figured I was fine.
Nine years later, I was almost completely disabled from lyme and cos. I'm convinced in retrospect that the disease was steadily and persistently replicating all those years--wearing me down with one medical thing after another.
I agree with Tu that the whole life cycle has to be treated--even initially. That means at least a month. To me, her error in that last sentence almost undid some of the other positives from the interview.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
It's encouraging to know that more and more information is making the news!
Posts: 1366 | From Southeast | Registered: Sep 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
i think it is good word is getting out. More people are going to look for ticks and tuck in pant legs etc.
I was like Andie, tick bite in 2000 , had symptoms that morning before i found the tick attached. Then later had swollen gland on one side of neck, sore throat, and odd chest pains.
went to the dr, he ordered a lyme test, neg of course. treated the sore throat on and off for eight months, got better somehow...but still would get sore throats.
2005 got hit hard, and here i am.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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daise
Unregistered
posted
Hi painted turtle,
Answer: No! By ILADS Guidelines: 6 weeks
The consequences of only a few weeks of an antibiotic lands people here.
Or they are told that it can't be Lyme, it must be MS (or whatever) and are told to take expensive, experimental drugs that cost the government one million dollars per patient--and they get worse.
Then there is the prednisone nightmare.
Chronic Lyme is disabling, so they may not be able to work, for most, they've spent their money of course being ill, they've been demoralized and abused by ducks, they may win SSDI when they can't work--but it takes 1 - 3 years to get SSDI so what do they do now?
That's if they can get SSDI. Remember, officially, chronic Lyme disease does not exist, as decreed by IDSA ducks.
They suffer in pain anywhere, and they go from duck to duck to duck to duck. There can be family troubles, and so forth.
All that ... when the IDSA duck prescribed only a few weeks. What's a few more weeks of an antibiotic, in the beginning with early Lyme, while it's treatable? That is life-giving.
Hi dontlikeliver,
Some have been slammed with Lyme a decade and a half after contracting the Lyme pathogen.
I got a huge bullseye in Utah. Didn't know it was Lyme. No signs or symptoms. Then nine years later, BAM! Bell's palsy, etc. Keep a close eye on your husband's health!
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Yes, there are those who got short treatment and did okay. And those who did not. Many variables with each person, the particular co-infections and specific strains involved.
If a singular drug is used, the different forms will not be addressed. That may make the difference in success.
Goldings' artice on neuroborreliosis (through www.ilads.org ) states that 3 months should be minimum due to life cycle of Bb.
The Clinical Advisor is a monthly journal for nurse practitioners and physician assistants in primary care. www.clinicaladvisor.com
From the May 2007 issue of Clinical Advisor
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR'' By Virginia Savely, RN, FNP-C
EXCEPTS: . . .
Treatment dilemmas ******************
The Lyme spirochete presents a formidable adversary. With more than 1,500 gene sequences, B. burgdorferi is genetically one of the most sophisticated bacteria ever studied.
Treponema pallidum (the spirochete responsible for syphilis), for example, has 22 functioning genes whereas the Lyme disease spirochete has 132.
Borrelia burgdorferi's stealth pathology makes eradication of the disseminated organism a near impossibility.
Before the tick delivers its inoculum of spirochetes into the host, it injects a substance that inhibits the immune response, allowing the spirochete to gain a strong foothold. The spirochete itself secretes enzymes that help it to replicate and infect the host.
Once disseminated throughout the body, B. burgdorferi secludes itself and becomes difficult to detect through laboratory testing--and by the host's immune system. The bacterium may hide in its host's WBCs or cloak itself with host proteins.
Furthermore, it tends to hide in areas not usually under immune surveillance, such as scar tissue, the central nervous system, the eyes, and deep in joints and other tissues.
Phase and antigenic variations allow B. burgdorferi to change into pleomorphic forms to evade the immune system and antibiotics.
The three known forms are the spiral shape that has a cell wall, the cell-wall-deficient form known as the ``L-form'' (named not for its shape but for Joseph Lister, the scientist who first identified these types of cells), and the dormant or latent cyst form.
Encapsulating itself into the inactive cyst form enables the spirochete to hide undetected in the host for months, years, or decades until some form of immune suppression initiates a signal that it is safe for the cysts to open and the spirochetes to come forth and multiply .
Each of these forms is affected by different types of antibiotics. If an antibiotic targets the bacterium's cell wall, the spirochete will quickly morph into a cell-wall-deficient form or cyst form to evade the chemical enemy.
Borrelia burgdorferi has an in vitro replication cycle of about seven days, one of the longest of any known bacteria.
Antibiotics are most effective during bacterial replication, so the more cycles during a treatment, the better.
Since the life cycle of Streptococcus pyogenes (the bacterium that causes strep throat) is about eight hours, antibiotic treatment for a standard 10 days would cover 30 life cycles.
To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks.
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