Topic: Young woman told only weeks to live... can we help?
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I just got a youtube clip sent to me about this young woman. Doctors say she has only weeks to live and they don't know what is wrong with her. Her name is Kristi Tunick and you can look her name up on youtube and google. She was even on 20/20. I'm convinced that she has late stage neuro Lyme. In one of the videos you can see her in a wheel chair with obvious bells palsy. She screams almost constantly in pain because her muscles seize up etc.
Her mother had MS. Anyone who cares to try can email her at [email protected] She is desperate, of course.
Thanks guys.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I called her a few days ago and left a message. My daughter also tried texting her. I also know one other who tried to reach her through her boyfriend, and still no luck.
The other person that called did mention having her test for Lyme so the word is out there.
They are desperate for help as they say in the video but probably too distraught to follow any leads.
posted
I emailed her and called her..she didnt answer the phone but I left a message. She then called me back at 11:30pm last night but I was sleeping and didnt answer the phone.
If I do talk to her then I will let you all know what she says about Lyme!
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Jackie, How do I get in touch in order to call? I'd be more than willing to help since I do these types of calls all the time. No diagnosis, cover medical history, testing, symptoms, blah -- and generally give them an idea of what to look at.
I'll send some brief paperwork via E-mail for now.
-- Mike
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Metallic-- Her phone number is 702-506-1937 which was posted on the youtube site so its not like its a secret.
She left a message on my machine that said that another lYme sufferer gave her the money to the testing through Igenex and had a lyme litterate doctor look at the testing and symptoms and said its not lyme.
So I dont think it is..you can give her a call anyway!
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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posted
IckyTicky and all--her name is spelled Kristie (with an "e") Tunick.
Posts: 12 | From Maryland | Registered: Jun 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Try to show them this so they understand we have many that have been missed. Possibly Thousands.
http://www.biomedcentral.com/1756-0500/3/273 Published:1 November 2010 The 2-tier serology assay missed 85.7% of the cases of early Lyme disease with spirochetemia. The latter diagnosis was confirmed by DNA sequencing.------How many know they may have to challenge to find the cause of their illness--to kill some first so they can be seen in the testing? And that most labs do not include all bands? Not very many. We do not have enough LLMD's to treat the very many. But first we have to find out what all they have that is making them sick...WE FIGHT... http://www.ncbi.nlm.nih.gov/pubmed/21053250 2010 Nov Abstract Tick and tick-borne diseases have become widely distributed throughout the United States. As a result, the interest associated with tick allocation and the potential ...threat they may pose has increased. Efforts have expanded to understand biotic and abiotic factors which may influence tick/pathogen distribution. Thus, we have developed a procedure which allows the simultaneous isolation of both tick and bacterial ...
-------------------- 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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posted
Oh, no...
The poor woman! Now neurologists are making up another fake dx instead of treating for Lyme disease & co-infections: real diseases with actual treatments that help patients heal!
Here's a bit from that article by ABC News' R. Chitale:
Tunick was experiencing the first of many episodes in which her muscles seized up painfully, a rare neurological condition known as Stiff Person Syndrome (SPS). Though the cause is unknown, SPS has features of an autoimmune disease in which the body's immune system attacks itself, setting off, in this case, muscle spasms.
For some people with the condition, unexpected stimuli -- such as loud noises and emotional distress -- can trigger muscle spasms and falls. Because these stimuli are so prevalent in the outside environment, many SPS sufferers are afraid to leave their homes.
Loud noises do not trigger Tunick's episodes. Rather, Tunick's painful muscle spasms paralyze her anytime her body comes in contact with a hard surface, such as a chair or a hard bed.
And the spasms can be severe.
"When you feel the muscles they're really hard, like rocks," said Dr. William Weiner, chairman of Neurology at the University of Maryland School of Medicine and a member of the American Academy of Neurology. "It's a really abnormal feeling."
Diagnosing Stiff Person Syndrome
Individually, the symptoms of SPS are not diagnostic, meaning they are often too general for doctors to be able to understand much of anything about what condition a patient might have.
And because the syndrome is so rare, it is often mistaken for a variety of musculoskeletal conditions, including Parkinson's disease, multiple sclerosis, fibromyalgia or something of a psychosomatic nature.
"Sometimes people are mistaken for being neurotic or overly anxious," Weiner said. "They complain of intermittent spasms, and doctors won't recognize it." * * * * * * * * *
Sometimes, a patient has neuroborreliosis and needs appropriate treatment by an LLMD!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Things to tell her ILADS-trained LLMD:
Kristie's mom has MS (which is usually LYME) and Kristie & her boyfriend Brian used to golf a lot (where they could be exposed to ticks and biting flies known to carry Borrelia...)
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
How ridiculous and sad that when a person presents with something difficult to figure out the ducks automatically use the word "psychosomatic".
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Not sure if you all read my post but I talked to Kristie and she has been tested for lyme through Igenex. She has also talked to a LLMD who said that it is not lyme.
I do not know what doctor she went to though
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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posted
even some LLMDs put too much stock in the Igenex testing. i was very negative on my Igenex Western Blot it was only by the grace of God that my PCR DNA Test hit Pos+ for Lyme and i was able to get the treatment that saved my life
thank you Jesus for my DNA test hitting
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I agree...If I had not challenged with what little I did for 3 mths. prior---
I don't think I would be here talking to you today.
-------------------- 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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posted
Good Points but really what is one to do if you try to tell her to get tested and shes says that she did already AND spoke to a LLMD.
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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posted
How about posting a specific time for us to uplift her in prayer in unity! 12:00 EST
Posts: 443 | From The North Star | Registered: Jan 2010
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posted
Not everything is lyme. There seem to be any number of things doctors have trouble diagnosing and treating.
And if it is lyme, sometimes there is a point of no return, and it is very risky for a lyme doc to take on cases like this. That's the trouble with lyme, so many are missed at the easily cured early stage that there are countless cases that are very very difficult and risky to treat.
If she has already consulted a lyme doc, and this info came from a lyme patient, then maybe this is legitimately not lyme.
Very sorry about her situation, and it is easy to see why there would be suspicions of lyme from our group. Kindhearted folks wanting to help.
Posts: 8430 | From Not available | Registered: Oct 2000
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
You right lou. We now know we have many organisms hiding. They should have treated the ones that are known for this.
Including the parasites we now know hide very well in DNA.
Some have to have their own serum injected into mice to find them....IMO with this knowledge, It is still a crime to not just treat them!!!
-------------------- 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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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
This is indeed incredibly sad and I don't mean to sound heartless, but I have learned to accept death when it is inevitable.
There is a point of "no return". If she has only WEEKS TO LIVE (doctors prognosis), it is likely the underlying infection/trigger is far too great and she may die FASTER from sepsis if it is treated.
She should be kept comfortable and that certainly is the merciful thing to do so that she is not screaming from pain. Morphine is usually the drug of choice. It is given via an IV drip or can be given sublingual.
Bone cancer patients have *tremendous* pain. And muscle cramping can happen too.
It sounds more like cancer.
I've seen this years ago when I was a nurse.
There are MANY different pathogens that can act as cancer TRIGGERS -> DNA damage.
Our prayers that this young lady's pain be relieved/lessened are greatly needed.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
Why did they keep emphasizing on how beautiful she is and how handsome he is? What's the relevance of that to a dying situation? When talking about someone's miserable state of life, it sounds so offensive and turnoff, like the less beautiful and handsome deserves less...
But I agree that none of these make the situation less dire. Sounds like they are looking for someone with magical touch of a medicine hand. I think they specifically said that they are not looking for any money assistance.
I don't pray but I do hope they find that something that helps...
Posts: 822 | From midwest | Registered: Apr 2009
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posted
I'm good friends with the woman who paid for the Igenex testing, which was done almost exactly a year ago. I remember this friend (who is a tireless advocate for her very sick daughter, as well as everyone she knows with Lyme) was VERY frustrated and upset during her many interactions with the girl and her boyfriend, who kept refusing to listen to very good advice from MANY Lyme patients who contacted them with the very same info you're all no doubt sending them. My friend also sent them a copy of Under Our Skin.
Honestly I saw email replies from the boyfriend that were defensive and rude, like "just leave us alone". My friend has a heart of gold, and kept trying nonetheless. It got to the point where I was more concerned about my friend, because she was worrying herself sick trying to get through to them (meanwhile caring for her own daughter, who can't even leave her bedroom w/o risk of seizuring and passing out).
They finally did take up my friend up on her offer to pay for the testing, but NOT her generous offer to pay for her to see an LLMD or even get hers to read the results.
Eventually it got to the point where no one could get through to them, and she and the others trying to help finally just had to give up.
Remember this all happened a year ago, and Kristie was ALREADY incredibly sick and living in an "expert" hospital then, and being seen by lots of specialists there. I'm pretty sure her neurologist at the hospital was consulting her case with one of the country's "top neurologists", and I think that's where they came up with the Stiff Person Syndrome. Oh it was probably that Univ of Maryland neurologest quoted above.
This is my friend's reply when I emailed her a copy/paste of the thread yesterday (she's never been on Lymenet):
"Can you post on lymenet that she did NOT have an LLMD look at the test results. Im the one who paid for the Igenex test and hounded them for months - but they didn't listen and had a doctor at the HOSPITAL she was in who is an IDSA doctor read the results even though I told her repeatedly to give them to me and I'd have them read. They are not listening to tons of people who tried to tell her it's lyme because the doctors convinced them it's NOT. Maybe people can try again!!! She is dying and clueless."
Based on the posts here, I do suspect Kristie is now is at the point of no return. Of course it's up to you all to decide what to do given this information I shared from my friend, as well as what I observed seeing this all unfold last year.
God bless IckyTicky and all of you who've been working to help her. I truly hope there's a happy ending to Kristie's story here on earth. For those who pray, we can definitely help her by praying for her happy ending however and whenever it is planned for her. Posts: 408 | From California | Registered: Apr 2008
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posted
Well, if people won't listen to good advice, they cannot be helped. They may have been contacted by very many people suggesting other things too, and just couldn't sift out the wheat from the chaff. And people in this shape who continue to trust doctors that don't help them have not learned anything from the experience.
I would say it is a waste of time to continue to try to help her.
If it is lyme, it will be another notch on the IDSA gun.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Oh wow! When I talked to her she told me she had the testing done and a LLMD looked it over and said it's not lyme! I really hope it wasn't an IDSA doc who looked at it
Gosh when will people learn? You can't trust MOST doctors
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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posted
There are many folks on the Internet questioning this video, which is apparently a $ maker for the creator in a number of ways. Why do you think they want it to go viral?
Posts: 11 | From Orange County, CA | Registered: Jan 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
If it was a fraud you would think the AG would have been notified by now...Maybe not.
-------------------- 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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