Guest guest Posted October 21, 1998 Report Share Posted October 21, 1998 Dear , I'm so sorry for the horrible experience with the spinal tap. I asked my doctor if I'd be needing one after reading about it so much on the NG, and he looked at me like I had asked him to speak Greek. He said there's no need for one with Lyme. But I guess that's not going to help you now after what you've just gone through. Please check the Lyme URLs to find a good lyme literate doctor in your area. It just sounds to me that yours doesn't really know what he/she is doing. JMHO. F. Mott wrote: > From: " F. Mott " <smott@...> > > Dear Friends: Good news and bad news. The good news is that I was put > on 2g of Rocephin 1/day for 6 weeks for my CNS lyme. The bad news is > that they tried 6 or 7 sticks to get a spinal tap without success. > OUCH!! AND, they stuck a nerve that connects with the top of my right > thigh and I couldn't walk. Excruciating pain!! Is this medical torture > really necessary? Why are they picking on Lyme patients for this > legitimized torture? Sometimes I feel like I'm in Nazi Germany! > By the way, I had stopped the doxy of 200 mg/4/day today so that I > could get the spinal, and I had a fever by noon of 99.7. I guess I > really need the stuff!! > Anything else I should be doing or suggesting to those in the > medical community who hold my fate in their hands? > > Lovette > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 1998 Report Share Posted October 21, 1998 Ken, That is good news about going on IV. I fell really bad about the spinal tap experience. I have learned that 3 strikes and your out. Meaning let them stick you 3 times if they are not successful get someone eels to try. Use this motto with blood tests, IVs and spinal taps. I have bad vains and nurses had trouble with my IV, but I would give them 3 trys. Why should we have additional pain? Good luck with your treatment. Did you ask your doctor about the urine antigen tests? Good luck, christine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 1998 Report Share Posted October 22, 1998 Lovette I can't think that there is any reason why it should have taken so many jabs to get the fluid. It's standard routine .... I'm sorry that you had to go through all that. Have you escaped the headache? Ian [Lyme-aid] Re: Spinal Taps >From: " F. Mott " <smott@...> > >Dear Friends: Good news and bad news. The good news is that I was put >on 2g of Rocephin 1/day for 6 weeks for my CNS lyme. The bad news is >that they tried 6 or 7 sticks to get a spinal tap without success. >OUCH!! AND, they stuck a nerve that connects with the top of my right >thigh and I couldn't walk. Excruciating pain!! Is this medical torture >really necessary? Why are they picking on Lyme patients for this >legitimized torture? Sometimes I feel like I'm in Nazi Germany! > By the way, I had stopped the doxy of 200 mg/4/day today so that I >could get the spinal, and I had a fever by noon of 99.7. I guess I >really need the stuff!! > Anything else I should be doing or suggesting to those in the >medical community who hold my fate in their hands? > >Lovette > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 1998 Report Share Posted October 22, 1998 Salisbury family wrote: > > From: " Salisbury family " <salisbury.family@...> > > Lovette > > I can't think that there is any reason why it should have taken so many jabs > to get the fluid. It's standard routine .... > > I'm sorry that you had to go through all that. Have you escaped the > headache? > > Ian > > -Dear Ian: I escaped the headache because all she got was bone and nerve! I am nursing my right thigh back to health. I don't think it will be permanent, but it sure hurts! Thanks for your concern. Lovette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2003 Report Share Posted August 20, 2003 Another question. My daughter Deb saw her new primary care doc today. Her old one has been giving her antibiotics while she waits to see a llmd next week. This new guy, who doesn't really seem to know much about Lyme, wants her to have a spinal tap. Is this necessary? He wasn't clear about what would happen if it was negative. Does spinal fluid usually show the presence of Lyme. She would hate to do an unnecessary test. Shall we just wait to see the LLMD next week? Thanks, Libby ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 I'd wait. When I started this trip, years ago, only 15% got a positive on a spinal tap. Rita Re: [ ] spinal taps Another question. My daughter Deb saw her new primary care doc today. Her old one has been giving her antibiotics while she waits to see a llmd next week. This new guy, who doesn't really seem to know much about Lyme, wants her to have a spinal tap. Is this necessary? He wasn't clear about what would happen if it was negative. Does spinal fluid usually show the presence of Lyme. She would hate to do an unnecessary test. Shall we just wait to see the LLMD next week? Thanks, Libby ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 When I had spinal meningitis and encephalitis they gave me more than my share of spinal taps!!! They are invasive and painful, esp. after you get older. The spot where they gave them to me literally ached for years afterward. The answer to your question, is NO a spinal tap in NOT necessary!! Since lyme can be clinically diagnosed, why go through that? If the new guy doesn t feel qualified to make a diagnosis without a spinal tap, after all the symptoms you've told us about, I'd seriously consider letting the new doc find another guinea pig, cuz he's definitely on the wrong track!! If she does opt to take the spinal tap, please make sure she follows the after tap instructions to the tee!! If she stands up too soon she'll pay dearly with headaches like she's never known!! Of course, I'm not a medical professional and this is just my opinion, but you couldn't pay me to get another one!! Best wishes to your family. You, hubby and Deb's family are in my prayers daily. Please make sure you rest and take care of yourself too. ((BIG HUG)) Carol Kerr Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 hi libby the average doctor will run you around ordering all sorts of tests. personally, i would not waste time on tests period. from reading posts on this list i believe a spinal tap is rarely positive and it is painful. i am not aware of any LLMD'S ordering spinal taps. they diagnose by symptoms and reaction to treatment. this IS tricky, but ABX is not a dangerous treatment handled by an experienced doc. if deb has the symptoms and responds to ABX properly administered in dose and duration that you continue with treatment -if you can afford it. on the other hand, there are lot's of alternative treatments that are anecdotally effective. even ABX has failed some lyme patients. >Another question. My daughter Deb saw her new primary care doc today. >Her old one has been giving her antibiotics while she waits to see a llmd >next week. This new guy, who doesn't really seem to know much about >Lyme, wants her to have a spinal tap. Is this necessary? He wasn't >clear about what would happen if it was negative. Does spinal fluid >usually show the presence of Lyme. She would hate to do an unnecessary >test. Shall we just wait to see the LLMD next week? Thanks, >Libby > >________________________________________________________________ >The best thing to hit the internet in years - Juno SpeedBand! >Surf the web up to FIVE TIMES FASTER! >Only $14.95/ month - visit www.juno.com to sign up today! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 Thanks to all of you for your input on spinal taps. We will wait until we see the LLMD on Wed. Deb really liked her new primary care doc. It is such a shame he knows nothing about Lyme. We will need to be really diplomatic in refusing to follow his advice on the spinal tap. Libby ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 hey lib i had 2 spinal taps. ithey were THE MOST inhumane experiences i have EVER had. while it was going on, i was screaming, crying, SWEARING and BEGGING the doc to stop. please don't let her do it. Jeni >From: " Marie " <AtTheLake@...> >Reply- >< groups> >Subject: Re: [ ] spinal taps >Date: Thu, 21 Aug 2003 09:22:41 -0400 > >I'd wait. When I started this trip, years ago, only 15% got a positive on a >spinal tap. Rita > Re: [ ] spinal taps > > > Another question. My daughter Deb saw her new primary care doc today. > Her old one has been giving her antibiotics while she waits to see a >llmd > next week. This new guy, who doesn't really seem to know much about > Lyme, wants her to have a spinal tap. Is this necessary? He wasn't > clear about what would happen if it was negative. Does spinal fluid > usually show the presence of Lyme. She would hate to do an unnecessary > test. Shall we just wait to see the LLMD next week? Thanks, > Libby > > ________________________________________________________________ > The best thing to hit the internet in years - Juno SpeedBand! > Surf the web up to FIVE TIMES FASTER! > Only $14.95/ month - visit www.juno.com to sign up today! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2003 Report Share Posted August 27, 2003 I think spinal taps would only show if you have neuro-Lyme or is you are trying to rule out MS which is why I had one and am now going to the Univ. of MD in Baltimore to the MS Clinic to have the MS question settled once and for all. My spinal tap was negative but most of all it was done by a neurologist, not necessarily Lyme Literate, but he knew what he was doing and I felt very little. Was not a big deal so if you have to have one, find a neurologist who is used to doing one for other reasons too, he has more practice and I had mine done as an outpatient at a hospital. Best of luck to anyone who needs one done. Hugs, Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 I had never heard that about spinal fluid continuing to leak from the puncture site. What I have been told, and what makes a lot of sense to me, is that when a large amount of spinal fluid is removed from the body (20 to 30 ml is what is generally removed for diagnostic purposes) your brain no longer has its usual cushioning and rests directly on bone, which causes the headaches. Your body produces spinal fluid constantly to circulate and replace its supply, I think about 20 ml per day. But until the fluid which was removed has been replaced, your brain really is resting on the bone of your skull. Leaking spinal fluid probably just make the situation worse, but the underlying problem seems to be a brain resting on bone. If the blood patch would have helped, I sure wish my neuro had used one............ Vali > > Date: Sun, 24 Apr 2005 19:15:44 +1000 > From: C <covo@...> >Subject: Re: Re: spinal taps/Kathy > >Whether spinal taps themselves are uncomfortable or not seems to depend >very much on the skill of the person doing the procedure. I know of >people who have had a number done and most were a breeze but some, if >the person doing it didn't have the requisite skills, were most >uncomfortable even if the others they had were a breeze. Moral of the >story - if you must have one done INSIST on an experienced and >sympathetic person to do it. > >It is my understanding that so called " spinal headaches " are usually >caused by spinal fluid continuing to leak from the puncture site and >this can be easily remedied by use of a " blood patch " which is a very >simple procedure that usually brings almost immediate relief, yet for >some reason many places will just let the patient continue to suffer a >horrendous headache.......... :-( > > > My spinal tap itself was not too bad, or at least the procedure itself > > was > > not that bad. But after it was over I got the worst headache I have ever > > had in my life, and it lasted for at least a full day. > > >-- > . > ,-._|\ Covington > / Oz \ > \_,--.x/ > v > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2007 Report Share Posted April 24, 2007 > > Hi everybody > For those of you that have had spinal taps done on your children (ours > is 12 years old) is there something you can tell us to help us through > it? And should we be suggesting any particular studies be done? Any > tips at all would be very encouraging as we're finding the thought of > it all pretty daunting although we realise it's something we have to > do to try to help our son.......he is having weekly headaches and > vomiting. Thanks so much for this site - it's been a lifesaver. > > Debbie - mother of Hans 12 ? > South of France > what on earth a spinal tap does that go with ? i know of a friend whos son is like that . have you heard of migrianes of the stomach. look it up its another syndrome . good luck char Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2007 Report Share Posted April 24, 2007 > > Hi > Spinal taps are done under sedation with younger children.... depends on the tolerance of the child... When ph was young he had 3 spinal taps at different time.... He did end up having aseptic meningitis... (no viral or bacterial loads isolated, only very high White Blood Cells) > > The main thing to do AFTER the tap is to keep the child laying flat on his back, giving time for the small puncture hole to close and prevent leakage. > > Otherwise not so much to tell. > > It is also a good idea the day before to hydrate your son well.... Also helps with the procedure. > > As for Char's comment regarding or any Periodic Fever syndrome and spinal taps... The doctors may want to rule out a meningitis during a high fever, and they may want to look for chronic White Blood Cells in the cerebro--spinal fluid. > > It is an indication sometimes in Periodic Fever Disorders. > > God Bless > Fran > Fran Bulone RN > Mom to ph 7yr CIAS1 mutation 11/05; Dyspraxia 11/06; Dyslexia 12/06 > Waxhaw NC > / > http://www.caringbridge.org/visit/josephbulone > > > Quote Link to comment Share on other sites More sharing options...
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