posted
Hi everyone!I've never posted in a forum before-really a newbie,so I hope I've done this all correctly-But I'm not new to lyme disease-My knee swelled up in Jan.-Doxy tabs didn't work- By March the leg was so bad I was in a wheelchair and I.V. rocephin-In physical therapy now to learn to walk again-I can relate to all of you who have been through so much-I've been really scared-next is a lumbar puncture-I've had possible neurological lyme symptoms for many years.Has anyone had one and can tell me about it?My best wishes to all of you-Olympia
Posts: 21 | From usa | Registered: Jul 2005
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
Olympia,
WELCOME!
If no one answers any time soon, then post over on the medical side.
I am so glad you are here! There are a lot of great people with wonderful insights and understanding of this complex illness.
Linda
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Hi Olympia,
Welcome
I've never had a lumbar puncture test, I have heard that it can still be difficult to find evidence of Lyme bacteria even with a lumbar puncture.
You're in the right place, for sure. A lot of us have had Lyme for many, many years and have neuro problems because of it.
Glad you found us!
------------------ Tabby
Posts: 2098 | From San Diego, CA, USA | Registered: Sep 2002
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Print off the links then check them off as you read as you could spend several months reading all of this. print & read Dr. Barrascono's info first; you will come back to this often. ==================================
Some guidelines from Betty/others on using this message board:
* Do NOT use all caps when posting; it's hard on our eyes. But I know one of our members has macular degeneration, and all caps is what she can see & read so exceptions like this are acceptable for good reasons.
* We chronic, late-stage lymies can NOT read long paragraphs. So please limit your paragraphs to 6-8 lines max of text and double space between paragraphs.
* You can EDIT your text comments anytime. You can NOT edit your subject line so please make it as specific as possible instead of ``help, question'' etc. in order to have more readers/replies in trying to assist you. There are between 30-40 NEW/replies to post daily so we can't read all the posts on our limited time here...thanks for understanding.
* If you use the ``quote'' icon, please DELETE [B] bold at the beginning & ending of the quote. This makes it easier on our eyes.
* To just reply without quoting, go to the top or bottom of screen in the black & white area to reply or post a new topic. Many of us couldn't see it when we 1st started posting. Thank you for helping us all out!
Bettyg
Posts: 1 | From US | Registered: Aug 2015
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
Here's more goodys! A typical response to newcomers.
Page 1.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead. Lyme Disease symptoms 2005 Lyme Symptoms 2005 Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer. Support Links LLMD's
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Olympia, and welcome!
So sorry about your knee... Sounds horrid!
More history is in order, in order to understand. :-)
Are you current treating for Lyme, or a past treater?
The lumbar puncture is "do-able" but deciding to do it depends on what the point of it is! Some non-LLMD docs really don't realize how futile it is to try and find Lyme in CSF fluid (tho luckily many on our board HAVE!).
However, maybe in your case they want to rule out other neuro issues?
Anyway, MORE about you...? Tell ALL!!!
and WELCOME!
Michelle M
Posts: 3193 | From Northern California | Registered: Apr 2005
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lymeloco
Unregistered
posted
quote:Originally posted by olympia: Hi everyone!I've never posted in a forum before-really a newbie,so I hope I've done this all correctly-But I'm not new to lyme disease-My knee swelled up in Jan.-Doxy tabs didn't work- By March the leg was so bad I was in a wheelchair and I.V. rocephin-In physical therapy now to learn to walk again-I can relate to all of you who have been through so much-I've been really scared-next is a lumbar puncture-I've had possible neurological lyme symptoms for many years.Has anyone had one and can tell me about it?My best wishes to all of you-Olympia
I had a lumbar puncture 5 yrs. ago. Unfortunately, the last part of my test got lost!
I wouldn't go for another one after I read that rarely you'll find lyme in the spinal fluid.
It did not hurt. Just felt pressure! The neuro. did it at the hospital.
He had me sit up, and lean on one of those hospital talbes, with my head laying on my arms.
This duck is the one that lost the test! He runs an m.s. clinic.
I have neuro. symptoms also. Have had problems for years. I feel great right now, and tired from weeding and mulching!
If you need any other questions answered, don't hesitate to write.
If you do have the test. Make sure they give you something to drink, and have you lie down for at least 30 min. before going home!
Some people experience headaches, but I didn't!
Again, if you have anymore questions please let me know. I need to go take a shower, I worked up a sweat! Take care, lymeloco
posted
the lumbar puncture is not a pleasant experience. they give you lidocaine aroung the site and use a catheter to get the spinal fluid. should be done in a hosptial of surgical facility with xrays available. they can do a pcr on lyme which if positive is positive for lyme because it is a dna test. the problem is there has to be active lyme in your spinal fluid and its not a disease like hepatitis where the cells are in great quantity, so if the sample has cells it will be positive. the reason they do lumbar punctures in neuro patients is to rule out multiple sclerosis. this does show up in the spinal fluid and treatment different.i don't know if there is another test to rule out ms and the symptoms are almost identical
posted
Welcome! The lumbar puncture is pretty unreliable. That being said, my advice is to be as still as possible while they're drawing spinal fluid.
I didn't find the procedure itself to be painful but you may get a horrible headache afterward. Be sure to follow the doc's instructions closely after the procedure to try and forego the headache.
So sorry you had to find new friends here, but WELCOME!
Posts: 703 | From Almost Heaven | Registered: Aug 2004
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posted
Dear New friends- I hope you don't mind the late reply to this message- finaly catching on.
Thanks so much for your kindness_I'm so happy to have found you all-people I can relate to
I'm also a bit slow on the uptake sometimes-"brain fog" you know- anyway as they say-"It's Greek to me"In this case you. I forget sometimes that Olympia is usually seen as a Greek name-My grandmother,Olympia was actually born in 1900 in the Austrian controlled portion of the Ukraine.
Her father's name was Dimietrius-Also Ukranian-The humor went over my head.Or a bit South if you will(in Europe that is)-appreciated but oops I missed it.
I have had a curiosity though about heredity and how it might play a part in immune systeme response to antibiotic treatment of lyme disease, so the information sent was also appreciated and not too far "north" over my head (ha ha) Although maybe too far west in heredity-
Would enjoy more info. on the subject.My dr. has discussed the possibility of another round of I.V. treatments for 9 weeks and I'm a bit apprenhensive about it.If there is actual proof that certain geneic profiles resist antibiotic treatment-ooops
Maybe at this point as a newbie to all of this I'm just unsure of alot of things-
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