posted
Father in Milwaukee called about married daughter in hospital here in Columbia, SC. Father says after research, he thinks it could be Lyme, but drs are not considering it. No abx. (Edited to correct Milwaukee, not Michigan )
Last Wed, hospitalized with chest pains, 2 hrs later paralyzed on one side, now paralyzed completely. Drs said she'll probably be paralyzed the rest of her life. She's 34 yrs old, married, has 3 little girls.
Today Neurologist suggesting ventilator and moving her to Medical Hosp in Georgia.
Diagnosed with transverse myelitis, spinal tap showed small bit of protein, low white cell count, few othr symptoms mentioned.
No known tick bites, but recent trip to Carribean had bites they thought were mosquitoes. Then visited in Florida before returning to SC.
With rapid decline, low white cell count - could problem possibly be Ehrlichiosis?
Need LLMD Neurologist for local Neurolgist to consult with....if he will.
Desparately need help. ASAP, please!
[ 30. January 2008, 07:56 PM: Message edited by: cbb ]
Posts: 4638 | From South Carolina | Registered: Mar 2001
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
up for help
Posts: 3905 | From USA | Registered: May 2007
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bettyg
Unregistered
posted
carol,
Linda Michigan Lyme Disease Association 1-888-784-5963
hoping she is home today for calls!! ************************************
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posted
Update - The young mother has been put on a ventilator and is more comfortable. Her father says she "has developed a Urinary Tract Infection since entering the hospital last week and even though they say it is 0% chance of Lyme, they've put her on IV Rocephine along with something they use as a last ditch effort for MS." (He didn't say what)
I've strongly urged them to convince the young girl's husband to have the local neurologist consult with a LLMD about possible TBDs. Gave them names and contact info for several LLMDs, info on testing for TBDs, and Dr B's Guidelines. Also, info about steroids.
Want to thank both of you for your concern and also the PM another person sent me.
Betty, will e-mail your info to the parents in Milwaukee and they can contact Linda. They are reading (and learning) and forwarding all info to the son-in-law here in Columbia.
I'm available to talk with him if he wants to call. They have my phone number and e-mail. The major issue is that the daughter is in the hospital here in Columbia, South Carolina and they need an LLMD ASAP.....like last week!
Can't tell you how worried I am about this young mother.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
I also not a doc but would say lyme sounds likely. I went to the Carribean in October and came back with some strange paraste. My lyme symptoms have been worse since returning even though I had bug spray on every second. Sending prayers her way...very sad.
Posts: 738 | From Colorado | Registered: Oct 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
cbb...
How about contacting Jemsek's old clinic and ask for suggestions.
In the meantime I'll try working on a few possible leads. If I get anything, will post it here.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Guillain-Barre Syndrome
It starts out very much like tick paralysis... and is diagnosed when they can't "find" the tick... and personally I think Lyme is the cause for Guillain-Barre.. or Lyme and tick paralysis.
Guillian-Barre is what they told my relative she had.. after camping for 2 weeks in Florida and living here her whole life.
She had a positive Lyme test but was told by ID idiots there is no Lyme in Florida.. it had to be a false-positive... so she couldn't possible have Lyme... so they only treated her for GB.
She ended up in a wheelchair for about 8 years after her lengthy hospital stay... and after much suffering and more idiot doctors who wouldn't treat the Lyme... she passed away from respiratory failure.
posted
Tincup, thanks for the info. I had wondered about Tick Paralysis, but she didn't have many of the symptoms.
With my Lyme Brain, I wasn't considering the fact that most people do not fit the "textbook case" of any of the TBDs.
You also reminded me of a small boy here in Columbia that I heard about 15 years ago. He was hospitalized, paralyzed, no diagnosis and then a nurse found a tick in his hair. After tick was removed, he had a miraculous recovery. I heard about it some time after it occured.
Don't know if her respiratory problems are as serious as "failure" but it's serious enough for a respirator. That with total paralysis are two of the worst symptoms.
Will pass this on to her Dad.
Also learned that last week she had a spot on her spine or spinal cord (not sure what or where) that was the size of a grain of rice. This week it's increased to about an inch. I hope I understood what he said. Any idea what this could mean?
Also, what signifcance is a "bit of protein" in the spinal fluid when they did a tap?
It's difficult trying to work through the parents in Milwaukee to get info to her husband here in Columbia.
Thanks for any help!!
Posts: 4638 | From South Carolina | Registered: Mar 2001
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
I've read that Lyme is associated with high opening pressure on the spinal tap...in the hundreds.
Do you know if the opening pressure was high?
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
If she needs a respirator.. that is serious. She could go into failure without it. NOT good.
As for the spot on her spinal cord or column. I am sorry that is way too little info to try to make even an guess.
It could be a number of things and normally I would speculate.. but this 5 way conversation isn't good and things could get messed up and misunderstood.
If you want me to speak to anyone.. I have free calling... so send a name and number and I will.
posted
Thanks for all your help and your research.
I understand that details are too sketchy to get specific info, but I was hoping for some general leads until a LLMD can be consulted, especially since she had insect bites on her trip to the Carribean a few weeks ago.
There's also a strong probability that more than one thing is involved. I hope that the doctor(s) will consider all possibilities and not concentrate on just one.
This family needs your prayers. Sending a big thank you to everyone.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I have seen tick paralysis i dogs and they do have respitory failure and arrest.
Good luck, keep us posted if you can!
Melissa
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Melanie Reber
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Member # 3707
posted
Hey Miss Cbb,
TP was my first thought as well...but my mind does tend to go to TBDs easily.
I just wanted to jump in here and let you know how much I appreciate all the work you do for so many.
Much love, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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With symptoms this serious, see if the doctors will do IVIG. Has very few serious side effects and could make all the difference in the world. They can fight over the diagnosis after she gets better.
Also, if it works it will cost the insurance alot less than the care of a paralzyed person.
Posts: 984 | From San Diego | Registered: Nov 2006
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Links Transverse myelitis in 2 patients with Bartonella henselae infection (cat scratch disease).
Baylor P, Garoufi A, Karpathios T, Lutz J, Mogelof J, Moseley D. Department of Medicine, Veteran's Affairs Medical Center, Fresno, CA 93703, USA. [email protected] Cat scratch disease is usually a benign, self-limiting condition. Neurological manifestations are uncommon and may consist of encephalopathy, seizures, and coma. This report describes 2 cases of transverse myelitis: 1 case in a 46-year-old man who had lymph node biopsy and serological testing results that were positive for Bartonella henselae and 1 case in a 13-year-old adolescent boy who had serological testing results that were positive for B. henselae. These are 2 of the only 3 cases of transverse myelitis associated with cat scratch disease that have been reported since the causative organism was first reported. PMID: 17638185 [PubMed - indexed for MEDLINE]
Posts: 983 | From The sky | Registered: Feb 2005
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Lyme disease presenting as isolated acute urinary retention caused by transverse myelitis:
An electrophysiological and urodynamical study. Archives of Physical Medicine and Rehabilitation, Volume 76, Issue 12, Pages 1171-1172 J. Olivares, F. Pellas, M. Ceccaldi, J. Viton, D. Raoult, D. Planche, A. Delarque
Posts: 983 | From The sky | Registered: Feb 2005
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Acute myelitis in early Borrelia burgdorferi infection
Journal Journal of Neurology Publisher Steinkopff ISSN 0340-5354 (Print) 1432-1459 (Online) Issue Volume 249, Number 10 / October, 2002 Category LETTER TO THE EDITORS DOI 10.1007/s00415-002-0854-6 Pages 1472-1474
Make sure to emphazise how innacurate blood tests and spinal taps are when diagnosing Lyme.
Posts: 983 | From The sky | Registered: Feb 2005
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posted
It's been wonderful to have so many responses. It just shows the caring and concern within our LymeNet Family. Big thankyou to each of you!!!
Lymeblue - excellent links. My computer skills are lacking when it comes to research. Thanks so much for your time and effort.
Melanie, I appreciate your kind words more than you know, but anything I do pales in comparison to your efforts and many others here on LymeNet. I won't start giving names because the list would be so long.
My grandson and I owe our lives to all of you who have shared valuable opinions and information. If I had found this site years earlier, my father would probably be alive today. He was misdiagnosed with Alzheimers. His Lyme diagnosis came too late
As I get updates, I will let you know how this young lady is doing. I e-mailed this discussion to her father. Maybe he will join our group.
Again, thank you to everyone.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
cbb, here's some great stuff that I have found recently about lyme & company. They really need to take the & company serious.
Please read. I believe it will give you some powerful knowledge in maybe helping this person.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
JUst read thread, I hope she ends up ok!! Yes, Ehrlichiosis could cause some of the symptoms and can be 100% blood negative!! I will pray for her- Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Sending a big Thank You for your help!! Pam, all the links I've been given are expanding my knowledge. As they say, some good comes out of everything, no matter how bad.
Sarah, thanks for your response, too.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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Tincup
Honored Contributor (10K+ posts)
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posted
Once again, you all amaze me. Great responses.
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