Flu shot suspected in Redskins cheer-leading hopeful's neurological condition
By DERRICK WARD and MATTHEW STABLEY
Updated 7:04 AM EDT, Wed, Oct 14, 2009
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NBCWashington.com ASHBURN, Va. -- Desiree Jennings thought it would be a good idea to get the seasonal flu shot.
Her job offered incentives for it, and she didn't want to get sick.
Ten days after she got the shot at a Reston Safeway, she did get sick.
"I got flu-like symptoms," said Jennings, an AOL employee and Washington Redskins ambassador hoping to one day be a cheerleader for the team, the Loudoun Times-Mirror reported.
Doctors couldn't figure out why her ability to speak and walk were so adversely affected. She saw neurologists, physical therapists and psychologists.
"I was hoping for Lyme disease, praying for lupus," she said. "They were all ruled out."
Finally, doctors at Johns Hopkins figured it out, diagnosing dystonia, a rare neurological condition with no cure brought on by infections, brain trauma or, as is believed in her case, reaction to medication. It causes body jerks and abnormal or repetitive movements.
Strangely enough -- as she can't walk forward five feet without stumbling -- with some effort, she can perform one of her life's passions:
running. And she walks backward with ease -- oddly empowering, now. After her ordeal began, "My insurance company wasn't going to pay ... to be in a wheelchair."
Her reaction is one in a million, doctors said.
"I would've much rather played the lottery," Jennings said.
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-------------------- ---Beautiful Disaster--- IgeneX WB: IgM: 18+, 31+, 41+, 58+, IgG: 31++, 39 IND, 41++, 31kda Epitope Test: Positive Labcorp: IgM: 23+, 41+ No LLMD due to money since Sept 2008. Was on Doxy, I.V. Rocephin (30 days), Flagyl. Also dx with Bartonella. Posts: 139 | From United States, East Coast-ish | Registered: Aug 2009
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posted
how horrible..strangely, i worried if i didn't have that...now i SEE what it is and the words on the computer don't describe it well at all...very sad.
Posts: 94 | From ut | Registered: Jul 2009
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tickled1
Frequent Contributor (1K+ posts)
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posted
A flu shot 2 yrs. ago is the straw the broke the camel's back for me. I had some symptoms before that but quickly crashed full force w/neuro symptoms after that.
Posts: 2541 | From Northeast | Registered: Jan 2008
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That this woman could easily have lyme along with many other agents rearing their ugly heads since the opportunity (additional insult of flu shot to the immune system) presented itself.
Also, an overburdened immune system -- with one last straw -- that possibly sets off something latent/genetic that otherwise wouldn't have been triggered.
very strange how she can walk backward normally but has difficulty walking forward.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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bettyg
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posted
this effected me so much, i copied the link and emailed to those i send to daily ...
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Ocean
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Member # 3496
posted
Wow...so so sad! I know a woman dx with 'Atypical Parkinsons' who was later dx with Lyme. She could run OK, but not walk, she also could walk backward....reminded me of this woman some.
I hope she can find a doc or alternative doc who may be able to reverse this, so so terrible!
posted
Betty, I sent it to friends also. It's the least we can do for people to warn them.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bettyg
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posted
it was also on CBS NATIONAL NEWS tonight!! so glad to see that, "but don't be afraid to get a flu shot!"
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Pinelady
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posted
My guess is also some infection lyme or like they just didn't see or believe it is not positive EX: she did not have at least 5 bands. Makes me sick to know this information is still killing people.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
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- This is shocking to me on so many levels.
I just saw the video of this young lady last night on the news.
I looked JUST LIKE THAT from '93 - '98. And I still do, to some degree at times. Seriously. That's how I look when I go out to new places with lots of stimuli (which I can't do anymore, of course).
I passed out a lot and had seizures from noise - just like reported for her.
If no one was around to distract me, in a very quiet and still setting, I would do better and I could walk fine backward for short tries - or even run straight if I had to hurry for a few steps. But then, I'd collapse. All just like what I saw her do on the video last night.
The way her feet sort of would give out and sway when she walks - that was me to a tee (but my shoulders and arms did not move as much unless there was noise around). I bet she falls a lot.
This was very unsettling to see this on many levels. I don't know how I might help this girl but it also stirs up so much.
I was shocked how many doctors turned their back on me when I walked - and talked - like her.
Rheumalotolgists declared me "bi-polar" when I would alternately cry and then demand some answers. I provided TOO MUCH background on a questionnaire so they said that was "manic" behavior.
The psychiatrist then was confused when the meds made me much worse, rather than better. He said he had "never seen anything like this before" but was no help at all and would not discuss or explore other explanations.
Approaching this somewhat as I would a journalism assignment when I had been working, they labeled me obsessed. I just wanted answers.
A sleep study technician declared me "schizophrenic" and put that in my chart -- because I had problems with sounds keeping me awake - and I could not fall asleep - and would spasm from the buzzer going off in the next room when that guy's sleep alarm sounded . . .
Many neurologists said my speech was "fine" and the weakness in walking was being greatly "exaggerated" - when I started using a cane to keep from falling, one wrote in my chart: "she took it upon herself to use a cane without the express direction of a physician."
(I also inadvertently "threw" that cane at people a time or two - not on purpose but from the spasms and startle seizures - I could barely hold onto it. But I was accused at causing disruption with it.)
One inner ear doctor said that he'd never seen anybody do so badly on the vestibular testing. I was literally off the charts. He declared that I must have been making all this up as it would be impossible to be that disabled. -- Except that this was a computer platform test. I could not have been making it up as the computer would have known that. Still, he kicked me out of his office for wasting his time.
Another inner ear doctor said that my being (moderately) overweight caused the problems with not being able to hold myself upright and tipping over.
I was labeled a "Difficult Patient" and treated like a delinquent as I approached middle age - although I've always had a professional and pleasant demeanor, even trying to keep some humor to lighten the burden of others seeing me like this.
A cardiologist was one of the few who did not treat me like criminal and although his interns botched the tilt table test, he thought my blood pressure drops were connected to the fainting and just left the rest for me to figure out on my own.
A top allergist told me to "just get out and exercise - walk, walk, walk," I was told. But I could not walk. Couldn't he SEE that? I kept falling even in his office. When I had a seizure from a forced steroid inhaler, he said he was done treating me.
One week, the number of falls totally nearly 40 - and my doctor would not allow me to see a physical therapist.
Another GP said the fainting in the waiting room was for attention and refused to take the positive tests I had brought to her that day for lyme, babesia and ehrlichia because "we don't have lyme in this state."
Since after all the bad doctors, another inner ear doctor was great, though. He thought my inner and middle ear were damaged beyond repair but he was the one who told me to get tested for lyme. The first test was a negative ELISA but the Western Blots were clearly positive for 3 tick infections. He was right. But no treatment in my state.
The tests had been done out of state, my GP did the wrong test, so new ones were ordered through my ND (naturopathic doctor) who sent them to Igenex. My GP would not even put them in my file and dropped them back into my lap. I was shocked. She said my symptoms were "psychological."
For years - at my worst - just like the woman in the video --No one even mentioned dystonia as a term for my body movements - even as the symptoms were EXACTLY like hers. That ability to walk fine going backward was so strange. The knowing what I wanted to say but having my mouth get stuck. At least they believe her, though.
I have to process this, think of time lines and see if there is any good in my contacting her.
While having been diagnosed with "CFS" years earlier (the lyme dx would come to light later), I did have a flu shot shortly before the dystonia started but my symptoms did not appear overnight - but over a few months getting worse by the day. I am sure the mercury is not being addressed for her.
Oh, (lightbulb) I did have a thermometer break in my mouth about that time - after the flu shot, I got very ill, and was taking my temperature - I had a seizure while the thermometer was in my mouth- (but two doctors said that should be no problem) . .
And, if this triggered a dormant infection for her, her doctors are all at Johns Hopkins, one of the worst places for lyme as they don't believe it can be dormant or chronic or even a big deal.
They undoubtedly followed the CDC criteria which will leave her out in the cold.
I hope she find the best doctors. I'm fairly certain damage has been done but there may be things to help her. For them to say nothing can be done is criminal.
something can at least help if they look to the mercury poisoning. Someone should give her a FIR infrared sauna. I've not been able to afford that but hear it can really help with mercury.
I've never been able to figure out the mercury thing on my own with little money, and I still have a long way to go with tameing infections, but I sure hope she has the support SHE needs.
She will also need an excellent immune doctor. I am furious that the doctors have just given up on her, saying, well this is VERY rare, sorry and, "too bad."
This can't happen again. She can't be sentenced to one doctor after another dismissing her, not even trying.
Can anyone find me a way to contact her? I am so tired to search and I am very limited with phone use due to seizures from sounds. I don't want to invade her privacy but maybe someone at her cheerleading group can pass my message along.
If someone has the time, I would so appreciate some help in finding me a contact for her - without invading her privacy -- or just pass along my note here.
She should contact the people at these sites, too. The top two are in her neighborhood, so to speak. Whether from the thimerosal (mercury) in the vaccine - or a possible reactivation of an infection, I think either or both of the people here can guide her:
And Heavenly Heat Sauna - Far Infrared sauna (but under the guidance of a medical person who knows about mercury detox - maybe contact Klinghardt's site: www.neuraltherapy.com )
-
[ 10-16-2009, 11:01 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I'm really sorry to hear what you've been through, Keebler...
Here's another video.
Unlike most others in a similar boat, she's getting a lot of attention and support. From Hollywood too, and may be flown out to LA for treatment for "vaccine injury".
I would assume it involves chelatin, detoxification, special diet, and so forth. What Hollywood people do for themselves and their children.
If you are in the same boat, you may opt not to watch it.
The only way I could think to contact her would be via the Redskins:
There are new developments in the story FOX 5 first brought you about a Redskins cheerleader left disabled by a seasonal flu shot.
Now, Desiree Jennings is adding a boost of star power to her cause. An organization founded by actors Jenny McCarthy and Jim Carrey is so touched by
Desiree's story that they have reached out to offer not only words of encouragement, but the organization's support...
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Keebler
Honored Contributor (25K+ posts)
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posted
-
22dreams ,
Oh, Good. Thanks for posting that as I wanted to be sure she will not just believe her doctors who say nothing can be done.
Jenny McCarthy and Jim Carrey will be an excellent help to her - I have admired their work for some time, I can rest better, knowing that she has support and people and doctors who will help find answers and treatment for her. Everyone deserves that. -
[ 10-16-2009, 02:29 PM: Message edited by: Keebler ]
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Pinelady
Frequent Contributor (5K+ posts)
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posted
In this instance I would go for the vitamin IV infusions. And the sooner the better.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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bettyg
Unregistered
posted
keebler,
thanks for opening up for all you have been thru; so very much! my heart goes out to you where you were, and where you are NOW in your illness.
lymeladyinNY
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posted
Wow, Keebler, your story is MY story, just a few years later (I was bitten in '03). I, too, looked EXACTLY like Desiree (okay, not quite as cute! ) and was treated like dirt by every doctor I came across.
I couldn't walk forward but could walk backwards. My speech was exactly like hers. I was infected near Wash. DC, which is where she lives, I presume.
I was told over and over what a faker I was. I was nuts. I was too, too happy to be so, so sick and ad nauseum.
Well, thanks to persistence and a great LLMD, I am much better. I walk and talk normally 95% of the time. I don't know if I'll ever be as healthy as I was before the tick bite, but I have come a long way from my "like Desiree" days.
My husband couldn't believe it when he saw her on the video. He said, "That's you!" It got me all agitated and infuriated again to see her, like walking down an extremely painful memory lane.
I'm glad she's getting a lot of support but I don't want them to bark up the wrong tree. I mean, I could be totally wrong but she sure looks like a Lyme/co-infection patient to me.
I hope you can reach her. I left a post on the NBC Washington page but I don't know if she'll read it. It sounds like she is being inundated with e-mails, etc.
Such a sad, sad story. She's so young.
- Lymelady Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Keebler
Honored Contributor (25K+ posts)
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posted
- lymeladyinNY,
yeah, that ability to walk backwards really baffled me. It was very tiring and I could not do it for long but it got me across the floor sometimes. I thought that had I been in better shape they may have taken me more seriously. I guess that's not the case for her, either as
You posted this at a related thread:
"Yeah, and now neurologists are saying that it looks like a "psychogenic" problem. Grrrr." end quote. --
That's the term they used for me, too, among others. But it looks like she might get help from Jenny McCarthy's foundation. I hope so. And I hope they consider all possibilities.
It is so sad that our doctors have failed so many when they really need expertise and answers. -
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RDaywillcome
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posted
Even though eventually, I tested positive by C.D.C. standards, I also started having neuro symptoms a year after getting a flu shot.
I'm not saying that was because of it, because I was also sick as a child.
Posts: 1738 | From over the rainbow | Registered: Jul 2009
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Hubby had a chiropractic neuro who had him practice walking backwards. There is also an exercise he used to do called the "cross-crawl" that is used to help stroke victims learn to walk again. Both exercises activate certain neural pathways in the brain I think. Pretty sure there is probably a left brain right brain issue involved. Hubby's QEEG showed major problems with communication between the left and right brain.
Hubby is left-handed and somewhat ambidextrous. He has always wondered if that had something to do with his movement disorder issues.
Haven't seen the video as my computer does not have enough memory to watch videos.
Keebler thanks for sharing more of your story.
Bea Seibert
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lymeladyinNY
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Ah, Bea - another thing I have in common with your hubby. I'm a lefty, too!
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