posted
I went to the family doc today for follow up after one month of ABX. He had sent me for the echo cardiagram, and now wants me to have a spinal tap. If anything shows up, then he will send me to the ID doc. That would be for the IV antibiotics. Also, wants me to do another month of doxy. Does this sound right? Thanks to all who post on this site. I felt very well informed and knew exactly what I wanted to ask today. Just curious about the spinal tap. That is not something I really feel like doing.....
Posts: 25 | From Lancaster PA | Registered: Aug 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
A spinal tap is very invasive without much benefit. A positive spinal tap is pretty definitive proof of Lyme. A negative spinal tap means absolutely nothing, but some doctors will try to use it as proof of no Lyme.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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quote:Originally posted by avonrealtor: now wants me to have a spinal tap. If anything shows up, then he will send me to the ID doc. That would be for the IV antibiotics.
The only way I'd have a spinal tap is if my life depended upon it. A spinal tap is approximately 20% accurate in finding Lyme disease.
If the test is negative [will likely be] then the ins company can use that against you and will not pay for future treatment for lyme.
YOU DON'T WANT TO SEE AN ID DUCK ANYWAY....SO DON'T DO IT!!!!
Just my biased non-medical opinion!!!
Please make an appointment with an LLMD today!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Like Aniek said, a positive spinal tap is proof of lyme, a negative spinal tap means nothing. I think you can find this info at www.columbia-lyme.org...and it would be helpful for you to print out this info to take to your doctor should you decide to go ahead with your spinal tap.
Spinal taps can also show other issues...so it is not all bad to get one.
I had one...it was normal for everything. And I do have lyme.
I should mention to have someone drive you home afterwards. I had to drive myself 2 1/2 hours home and it was brutal.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
I had one too, and I will not have another one done again,period.
It did have the benefit of pretty conclusively ruling out other possibilities-in my case, MS was still very vaguely on the table- but I'm not sure it was worth it. It took me over a week of lying absolutely flat to recover.
If you do get one done, one neat trick which I heard way after the fact is to take caffiene pills right afterwards, and perhaps to repeat. No sugar, or other bad things like the coke they suggest,a nd way more than a cup of coffee will deliver. That advice came from the chief of anesthelogy at my nearby hospital....
good luck- Julie
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
If the spinal tap is being done to rule out possible MS than it would be a reason to get it done. I would request an MRI first to see if there are any lesions specific for MS..if they are even considering that disease as a possiblity.
If they are looking for something else I wouldn't have it done through my PCP. I would goto a neurologist and make sure they are looing for specific bands.
As others have said..if it is stricly for lyme I would not have it done. It is less reliable than blood work and can be much more painful. I have had several.
It can help your treatment if it comes out positive but really hinder it if it's negative. In my opinion, any doctor who suggests a spinal tap for lyme isn't willing to treat it without positive results. That would not be the kind of doctor I would want to start my treatment.
posted
When I first began to try to find out what in the H*#! was wrong with me, I went to a neurologist. Nice guy, overall, but by the time he'd finished all of his testing, he'd decided that I just needed a shrink. I did/do have more white matter lesions than he expected someone my age to have but he didn't think to test me for Lyme - after all, it's not in Alabama.
Then he suggested a spinal tap. I was scared and said "no" although I was almost ready to get any and every test possible to try to figure out what was wrong with me.
When I finally found a LLMD, he did tests through IGeneX, which came back very positive and he convinced me to have the spinal tap too. Even though I was scared, I agreed to have it done.
The spinal tap was a 'breeze'. I had no pain during and no ill effects afterward. BUT IT DID SHOW ELEVATED PROTEIN IN MY SPINAL FLUID! And also, an anaesthesiologist did the procedure, using guided imaging - it wasn't just some nit-wit poking around with a long, sharp needle.
The LLMD got those results and said that, as far as he was concerned, the elevated protein level in my spinal fluid was another indication to him that I did, in fact, have Lyme.
A friend of mine, however, had a spinal tap just this past Friday and had a spinal headache for 3 days before she finally had to go to the emergency room, on Monday, for a blood patch. She's been through hell BUT says that it will be worth whatever she has been through or will go through to try to get more information regarding what is wrong with her.
I think that if you've been sick for a long time, you'll get any test they'll give, just to try to get a diagnosis and treatment.
I, for one, would have it done. That's me, however, and every one has to make the decision for themselves, based upon their confidence in the doctor(s) that they see. < that's a group 'conference'.
Posts: 66 | From AL, USA | Registered: Jan 2005
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
I agree that a spinal tap might very well be warranted if a LLMD (and only a LLMD) thought the clinical evidence was genuinely murky- could be MS, could be lyme, or if lab indications pointed to something other than lyme that ONLY spinal fluid could verify.
In my case, I had already had a perfectly normal MRI, my symptoms were textbook neuro-lyme, and duh, I had been (insufficiently)treated for lyme 4 years prior.
That said, it was actually my exceedingly great LLMD who DID order the spinal tap, so that he could test the CFS for Bb, every known co-infection and every other possible anything, he being a most thorough man.
Had I known how slim the odds were of actually capturing a live lyme beastie, etc., or of coming up with a meaningful result of any sort related to lyme, I would not have done the tap. Yes, the pain was dreadful, and down here in Baltimore I was told that unless I was vomiting uncontrollably a patch was not warranted and would not be given to me, so no relief there.
More to the point, I just don't believe in any kind of invasive procedure, or med for that matter, that is not absolutely necessary.
But it's definitely the kind of decision everyone has to make for themselves, and as I have read again and again on this board, everyone's lyme circumstances and experiences are unique.
julie
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
I know I'm in the minority here but a spinal tap saved my life. Wouldn't have been able to diagnose a mycoplasma infection with out it. Blood, urine, everything else was clean.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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posted
Dear Julie, I was being treated for Lyme when I had a Spinal Tap. I think my doctor was trying to find any cure for my headache, so she wanted to relieve any extra pressure. Of course, the neurologist just happened to test for Lyme and it was negative. (My titer was off the charts on the blood test) Obviously, the reliability of the ST is in question, but I must warn you that after I had mine, I had the WORST day of my life--a headache you can't imagine. I had to get a blood patch. I just wanted to warn you that that is a risk you take getting the ST. -Em
-------------------- -Em
"Thank you, Oh Lord, for giving me the power to control my pain" Posts: 59 | From Missouri | Registered: Sep 2006
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posted
Just wanted to let everyone know that I went ahead with the ST, because of the discussion I had with the doc. It was a procedure I hope not to repeat, but, I will just feel better knowing that I did do it. I went home with an extra strong cup of coffee, went to bed, and never got a headache or any side effects. I am still waiting results, I also, did get results to another blood test. and there is not any change from 6 weeks agao. I guess that is good??? I have started the second month of doxy. I really feel like CRAP!!!! I guess that is good also???
Posts: 25 | From Lancaster PA | Registered: Aug 2006
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posted
Look for SunRa's recent posts about all that went wrong with her recent Spinal Tap. Just say no! hats
Posts: 956 | From MA | Registered: Nov 2004
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