Here's my story in a nutshell: My 6 yr. old daughter, Kaelyn, was bitten by tick about a month ago. We removed tick with tweezers, in its entirety (it took skin with it) and took her and tick to dr. next day. They prescribed 7 days of antiobiotics of which I could only get about 1/2 down her..she is VERY difficult to give meds to if it tastes nasty (she vomits and stuff.) Amox. was given as precaution because she had LOW grade fever (99.2 or something) and she didn't feel good. This was the day after tick removed. Fast forward: No rash developed ever, fever only lasted that one day, no pain, but I've noticed over last week or so that she has swollen lymph nodes, two of them, on right side of neck. Same side as tick bite. I plan to call dr. tomorrow, but dr. told me at initial visit they would do a spinal tap if they suspected Lyme. Is this absolutely necessary? She's been through a slew of tests over the past few years for another medical problem (nothing that would cause swollen lymph nodes) and I really hate to put her through this if it's not necessary. So far two swollen lymph nodes on her neck only "symptom." And they're arent'g getting bigger and only about size of a piece of corn maybe. Input would be greatly appreciated! Thanks!
Posted by Lou B (Member # 64) on :
Hi,
My opinion ... I'm not a doctor, just the Dad of a Lyme victim.
At this point, spinal tap is clearly over-kill ... don't do it! Get your daughter to a Lyme Literate Medical Doctor (LLMD). Seven (7) days of antibiotics is serious UNDERtreatment ... 28 days is the standard by doctors who regularly treat suspected Lyme. Check the "symptom list", in the On-Line Library on the upper left of all web pages on this site. Check her for any/all symptoms.
I'm sending you a Private Message (PM) with more info. Crap ... I hate it when kids get bitten by ticks.
Posted by bettyg (Member # 6147) on :
welcome mom to the boaard; not many of us on here at the time of am!
i've read pro/cons; try this ok since not many here.
click on SEARCH found at top under new post.
type in spinal tap MEDICAL TOPIC ANY DATE...make sure you edit MY PROFILE to allow the longest period of time at bottom vs. default used in search process!
leave membership blank, hit send
read all the posts that come up and replies ... this will give you a good idea especially from other parents since we hve so many kids with lyme!
best wishes; you found the right place to come to.
go also to top of medical to TREEPATROL'S NEWBIE LINKS; skim thru there for SPINAL TAPS! he has a wealth of info there .... over 1000 GOOD info links! Posted by merrygirl (Member # 12041) on :
Well I am relatively new to the Lyme Issue only recently diagnosed. But I have however had to be hospitalized 3 weeks ago and had a spinal tap done. I was very very ill.
I never want to have a spinal tap again ever. It was terrible. My blood work for Lyme is positive. But the Lyme test in my spinal fluid was Negative. A veteran member may give you specific info or correct me if I am wrong, but I want to say you only find Lyme in about 20% (or less)of patients with actual Lyme in the fluid.
The procedure for me was shear hell. It is not just a easy thing to do either. There is risk involved too. I gave birth with no pain meds and never shed a tear. when they did the spinal tap I cried Like a baby. My doctor also missed 3 times.
If it were my child I would not do it. If for some reason you end up doing it make sure she is sedated.
I do have large Lymphnodes from Lyme.
Seems Like some blood work would be a good first step along with more antibiotics. It seems a spinal tap is skipping some important steps first.
Good Luck, Someone with more experience will chime in. Keep Us posted, Melissa
Posted by butchieboo (Member # 12063) on :
Hi Kaelyn,
Spinal taps are superfluous tests for lyme disease..however they are used for diagnosis of other things or to rule out other disorders...
If your neuro is going to do the spinal with intent of finding Lyme or co-infections DON'T BOTHER.
So, your daughter got lyme in Ohio...I live in Ohio as well....where abouts?
Maybe I can help you better cuz I'm closer to you....
of course if you go to Columbus CDC, they will tell you that Lyme does'nt really exist, to any great degree, in Ohio, you probably got it in PA! LOL
BB
Posted by EtherealGirl (Member # 4780) on :
I agree with what the others have said. My WB was positive for Lyme, but my spinal tap was negative. I don't think any test is very accurate, but why put her through that needlessly? I'd veto that procedure and ask for bloodwork instead.
Holly
Posted by Foggy (Member # 1584) on :
quote:Originally posted by butchieboo: Hi Kaelyn,
Spinal taps are superfluous tests for lyme disease..however they are used for diagnosis of other things or to rule out other disorders...
Agreed, help rule out ither dxs and prove to a dubious MD that I was for real. I would NEVER have another unless life threatening and with fluroscope guildance and sedation.
Posted by CaliforniaLyme (Member # 7136) on :
Spinal taps are OFTEN negative in regard to LPs- this doc knows nothing re Lyme- s/he should be testing your child for coinfections- Babesiosis- HGE/HME Ehrlichiosis/Anaplasmosis, Bartonella ESPECIALLY because of swollen lymph nodes which Bartonella does best!!! Be assertive for her- demand she get appropriate tests and approriate abx- don't let her go CHRONIC!!!!!!! best wishes, Sarah whose daughter Evan has been in full remission for 6 years now **************************** In vitro conversion of Borrelia burgdorferi to cystic forms in spinal fluid, and transformation to mobile spirochetes by incubation in BSK-H medium.
Brorson O; Brorson S. Infection, 26(3):144-50. 1998.
Quoting from the abstract:
"B. burgdorferi transformed into cysts (spheroplast L-forms) within 1-24h of inoculation into spinal fluid. When transferred to a growth medium, the cysts converted back to normal spirochetes after 9-17 days of incubation.
"When neuroborreliosis is suspected, it is necessary to realize that B. burgdorferi can be present in a cystic form, and these cysts have to be recognized by microscopy.
This study may also explain why cultivation of
spinal fluid often is negative
with respect to B. burgdorferi."
Posted by Vermont_Lymie (Member # 9780) on :
quote:Originally posted by butchieboo: Hi Kaelyn,
Spinal taps are superfluous tests for lyme disease..however they are used for diagnosis of other things or to rule out other disorders...
If your neuro is going to do the spinal with intent of finding Lyme or co-infections DON'T BOTHER.
BB
I agree entirely. I am not a doctor, but after learning about tick borne diseases for some time now, it just does not seem necessary in your daughter's case, in my opinion.
Neurologists like to do spinal taps, it is one of their main tools, but they are really superflous for lyme and co-infections most of the time. Lyme is a clinical diagnosis based on history, blood tests, presentation, etc.
I had a spinal tap a month or so after one of my tick bites and could not get up for just over 2 weeks!! That is, could not stand up without the excruciating headache. Of course, the neurologist said that was unusual -- but listening to others stories, it seems that many folks have problems for over a week after a spinal tap.
I would hate to see a 6 year old go through that experience -- could you keep her lying down for 2 weeks?!
It does not seem that your daughter is presenting with the symptoms of meningitis -- bad headaches, stiff neck, high fever, confusion.
Can the doctor provide any rationale about why they want to do a spinal tap as a lyme test? How about a blood test (through Igenex). Blood tests are far more standard than a spinal tap for suspected lyme disease.
Get yourself and Kaelyn to a llmd.
Posted by Michelle M (Member # 7200) on :
Excellent advice above.
Around 20 percent is correct for detection of the bacteria in spinal fluid.
I am CDC positive by western blot, but "negative" by spinal tap.
But the really scary part is that most doctors don't even know this.
What they'll do is this: Perform a spinal tap. Find no bacteria. Then claim, with a great pretense of superior knowledge, "Your daughter couldn't possibly have lyme since her spinal tap is negative."
With lyme, it's necessary to know more than your average duck.
Fortunately, this is not difficult.
Sarah has a good point -- the doctor needs to be concerned about co-infections but is unlikely to even think about it!!
An LLMD can mean the difference between short-term illness and chronic illness. I hope you can find an ILADS doctor to treat your child.
Michelle
Posted by Monica (Member # 224) on :
JMO: There is no need for a tap. Probably no need ever.
Please get your daughter to a doctor who knows more about Lyme than the average doctor, an LLMD.
Good luck to both of you.
Posted by SunRa (Member # 3559) on :
I echo the above. my "absolutely necessary spinal tap" was a nightmare. some do fine with them, but I had many complications and would never go through it again.
please get her to a good llmd asap! if she gets adequate treatment now she has an excellent chance of a full recovery.
best wishes to you both!
Posted by Lymetoo (Member # 743) on :
I agree with everyone above. I would personally never have a tap unless my life was in immediate danger.
Where's kaelyn's mom??
Posted by pattilynn (Member # 8065) on :
Why does her doctor want a spinal tap? She doesn't have any neuro symptoms. There's no way I would do it unless she had profound neuro symptoms and it would be for other reasons not for lyme, like viral or bacterial meningitis. No way would I put her through it without a very good reason.
I've had two of them. Both were nightmares. You won't find a good doctor in Ohio if she has lyme. You'll have to travel. I live in Ohio too. There's no lyme in Ohio!!! or so I have been told by the world famous Cleveland Clinic.
Posted by hiker53 (Member # 6046) on :
NO TO A SPINAL TAP! Get a western blot test at Igenex and test for co-infections. My western blot was potisitve, but my spinal tap negative. The excrutiating headache was not worth it. Hiker
Posted by elle108 (Member # 11730) on :
With lyme, it's necessary to know more than your average duck.
Fortunately, this is not difficult. roflmao!!
I agree that a spinal tap at this point is A: overkill...since I believe the supposed purpose of the LP is to rule out neuro Lyme AND
B: pointless: since even if she does have neuro lyme...the spinal tap will probably be negative ..
Elle
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Lymetoo: Where's kaelyn's mom??
Posted by dkf (Member # 11919) on :
Okay, every time I go to find information I am getting MORE discouraged. I came to this board today to see what kinds of info might be around as far as the Buhner protocol, or herbs in general - and possibly finding an herbalist in this area (NJ) who we could work with. I just happened upon this thread about the spinal tap. My daughter (19) was just diagnosed recently by a very reputable LLMD and has started on doxy through a picc line. The LLMD sent her for a spinal tap (prior to starting the abx) as well as for a neuro-psych evaluation. Now I am wondering whether these things were necessary - whether we are doing more harm than good, etc. The LLMD diagnosed her prior to the tests (as yet we don't even have the results), but my understanding is that they were done in order to try to build up an "arsenal" of evidence (presumably to convince the insurance company). Where does it end? And if the spinal is negative, doesn't that defeat the whole purpose of "building a case"?
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