tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I read on someone else's post that many people advised against a spinal tap.
Shouldn't I get one to rule out MS? I had an MRI that was supposed to be done with and without contrast but the radiologist didn't sign off on the contrast injection so it was only done without.
I forgot which member said their lesions didn't show without contrast but were very obvious with.
My insurance probably won't cover another MRI but my new Neurologist wants to do a spinal tap to rule out MS even though she says she doubts it's MS and that she thinks it's Lyme.
Should I do it? My Western Blot only came back 1 band positive (41) but my Mycoplasma was VERY positive.
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
Hey, Why do it? Kinda like the nerve conduction tests.
What will they do diferently and there are no FOR sure test anyway.
I think it is an added expense but most importantly it is a medical procedure for the DOCS, not for you. Never agree to a nerve conduction test. It is painful and tells us nothing.
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Thank you all for the input.
It's funny. I couldn't get a straight answer as to why I should do it from the Neuro.
Too late on the nerve conduction. It was EXCRUCIATING!!! Only had it done from the elbows down and they said mild carpal tunnel. This was right before I totally crashed and was having terrible pain in my arms.
You're exactly right, so they found carpal tunnel. Big woop! So what?
Posts: 2541 | From Northeast | Registered: Jan 2008
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I just read a couple of your threads. Are you double dog SURE you have the right,,or even real lyme litterate pro's on your side??
This spinal tap and NO flagyl really has a regular person scratching ones head and wondering!!
MAYBE time to seek a second opinion from another true blue LLMD. THAT may cure what ails YOU!!!while--IB--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Hi Just Don,
No I'm not Double Dog sure. I was just diagnosed in December and have been suffering so long without a diagnosis that I'm impressed just with the fact that she diagnosed me without a CDC positive result and wants to treat me long term.
Also, she is close by and accepts insurance. I looked into other LLMD's and found only 1 other that accepts insurance and I didn't hear good things about that one. Since I can no longer work due to the Lyme, I cannot pay over $600 for an initial visit and then $300 for every visit after that.
I also can't drive long distances due to Neuro symptoms so I need someone close by.
My LLMD referred me to a Neurologist because of my extensive Neuro symptoms. The Neuro also believes it's Lyme and wants to see how I do with being on abx a little longer before deciding whether or not we should do a spinal tap.
I am interested in getting a second opinion but the bottom line is I can't pay for it. Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
I know two people that did spinal taps. It was horrifically painful. One had spinal fluid leaking for days. she said the pain was so bad she asked her husband to kill her cause she couldn't get out of bed to do it herself.
Neither of their tests told their doctors anything. An mri is supposed to rule out ms. Although with everything I 've been reading about "leaky brain" im not sure about that anymore.
Posts: 102 | From ny | Registered: Feb 2008
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I went the "MS" route for a while also.
I did the evoked potentials testing and also a spinal tap. Both provided some interesting data, further persuading the neuro I had MS. However, it would be impossible for such a test to rule out or rule in MS. MS diagnosis involves a whole constellation of stuff. Since lyme mimics MS, neurologists ALWAYS get this wrong.
I had numerous brain lesions evident on an MRI without contrast shortly after being properly diagnosed with lyme. The same lesions were still there a year into treatment on repeat MRI with and without contrast -- it made no difference.
If you have abnormal test results with evoked potentials or spinal tap testing, it will serve to confirm in a neuro's mind that you have MS, even though identical results can be caused by lyme.
It sounds like your doctor means well and at least is trying. However, I hope you can get tested through IGeneX for coinfections, or perhaps through Fry Labs for bart/babesia. These are not things a non-LLMD typically even looks for or if they do, they do not know how to follow up or what lab to use.
Flagyl, while rough, is an amazing drug for its ability to get you much better. Or Tindamax in its place, though Flagyl is much cheaper! I believe the ILADS guidelines call for a cyst-buster drug in combination with your other orals.
Maybe your doctor could consult with an LLMD about your care, if he's amenable. Most LLMD's are glad to help out other doctors, particularly ones who seem as if they might be listening and learning.
There is little to be found in a spinal tap if you already know you have lyme. The percentage of people with known lyme who test positive in spinal fluid is less than 10%. That's a REALLY invasive test for not much reason I can see.
Keep asking questions!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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adamm
Unregistered
posted
According to the guys who created the Lyme bacterium as
we now know it,
if Band 41 shows up and you don't have the syph or an
active gum abscess (and you would know if you did--
it hurts like nothing else), you have Lyme. (And even if you
didn't, the Mycoplasma alone could certainly explain what
posted
Hi, hope you're feeling a little better! i just wanted to respond to your post on having a spinal tap. I had one done a few years ago (I was 23) and I was ok. HOWEVER!!!! The reason I didn't have an lasing issues was because the doctor used a SPROTT needle. Much thinner, and worms its way into the fluid rather than just puncturing it. It's a German needle and there are no headaches or side effects when it's used correctly. If you're going to have a spinal just to rule out MS< I wouldn't bother. But if you're going to have one done to see if the bacteria have spread to your spinal fluid, it might be worth it. BUT INSIST INSIST INSIST on a Sprott. If they say no, or they don't know how, or it's too expensive, that's bullsh*t and go someplace else. There is no need to suffer through one when there's a method out there that is painless. Good luck!
Posts: 9 | From Orange County CA | Registered: May 2006
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posted
Before I was finaly dignosed with Lyme my neurologist wanated me to do a spinal tap.
She convinced me it was worth the risks (my mind was mush then so she probably could have convinced me to do anything)
Read the paperwork outlining the dangers and risks...its the paper you have to sign to have this test done, they do this for a good reason....leagal liability.
My spinal tap was the worst experience in my entire life!
They hit a nerve and a very large male nurse (now I know why he was there) had to jump on me and hold my body on the table as I convulsed uncontrolably in SEVERE pain.
And the fluid had blood in it so most of the things she wanted to test for couldnt be.
My opinion, it doent make sense and is definitely not worth the risks associated with this procedure, find a good LLMD.
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
IMO, NO!!!
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
So most of you say no. I guess that's an easy decision for me. Thanks!!!
In regards to MS, isn't the treatment for that steroids for the most part? If that's the case, then even if they thought it was MS and they were wrong and it's Lyme then I'd be screwed if they tried to treat for MS, right?
Or, maybe all of this could be Mycoplasma. I insisted on getting retested even though my doctor said 6 wks. of Doxy was more than enough to get rid of it and guess what! Yup! Still positive!!!
So now I'm off Ceftin and on Zithromax.
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
Hi I had two spinal taps, one blood patch from it, and a horrific nerve test EMG. I would NEVER agree to have these done again. I cannot even talk about it because it was so horrible...I cry when I think about it. The jerk doctor just said..yes you do have severe neuropathy...this proves it. LIKE I WAS LYING. The pain was so bad I could not describe it in words. I also had two skin punctures on my legs. I would not agree to any of these ever again. MIND YOU ALL THESE TESTS CAME BACK AND THEY STILL MISDIAGNOSED ME. The so called expert in NYC also charged me 5600 dollars for the EMG. Yes I obviously have some anger associated with this Monica
Posts: 422 | From CT | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
This should answer many of your questions about MS.
This absolutely excellent article is ALL ABOUT MS & LYME. Written by an ILADS neurologist:
Considering Cpn (Chlamydia Pneumonia) might be a good idea. Treatment mirrors lyme and may be more easily covered.
You said your mycoplasma test was positive. If you need more information on treatment, a fabulous researcher, Garth Nicolson, Ph.D., has done great work on mycoplasma. Some of his articles are at www.immunesupport.com.
His site is: The Institute for Molecular Medicine - A nonprofit institute dedicated to discovering new diagnostic and therapeutic solutions for chronic mycoplasma infections.
posted
I guess I'll be the only one to say that I would do, and I did do it. For me, I wasn't scared of a spinal tap because I had them weekly when I was younger due to having cancer (they had to constantly check my fluid as well as inject chemo into my spine). I had another one about a year ago, and even though no abnormalities were found, I'm still glad that I did it. The procedure went okay, and was just sore for the rest of the day.
As far as the NCV/EMG (nerve conduction studies), I didn't have horrible experience with those either and would do them again. I've already had them 7 different times in the last 2 years all over my body including my tongue w/ the EMG needle. I don't have a lot of tolerance for pain, but I needed to rule out other stuff too.
Posts: 20 | From Portland, OR | Registered: Dec 2007
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posted
As far as a spinal goes I had one done for my symptoms as well as the EMG and the evoked potenitals. I still have yet to be diagnosed however the Doctor thanks i either have MS or a virus that should get better in time.
The spinal wasn't that bad and after hearing some of the horror stories above I guess I was lucky. My results came back and my doctor states this "your results came back at the high end of normal, not yet abnormal". have no idea what that means he said I could be on the verge of something we will just have to wait and see.
So as far as getting a spinal I guess its up to you.
Posts: 10 | From Delaware Ohio | Registered: Feb 2008
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I didn't read the whole thread but I vote "no" is there's any way not to.
Nothing is worth that 10 day internal headache from the spinal fluid leaking and trying to rebalance. In comparision migraines are a picnic.
Additionally, the place in my spine where they tapped is messed up and have repeated bulging and/or herniated disks there.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
If I did do it I would be doing it to rule out MS since I only came back 1 band positive on WB (41).
Posts: 2541 | From Northeast | Registered: Jan 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
What about treatment for mycoplasma? Are you following the work of Garth Nicolson, Ph.D. on that ?
Might that treatment also treat possible lyme and you could just get on with a treatment protocol ? Might the mycoplasma be causing most of the symptoms, anyway ?
A spinal tap may not be of any help dxing MS either.
However, the Goldings article above does mention CSF under MS, but you might call her office and see if she has any updated papers on that. I would scour the literature for solid proof that the tap is necessary.
Can you take ten days out of your life as some others have had to afterward. If you do it, get plenty of food in the freezer, etc. and have a circle of friends who can help you out.
If you do it, a specific needle and specific techniques are best. and then follow the instructions precisely. Do not get up until they say so.
But, most importantly, what exactly is it that would be expected in MS CSF ? Would it be the same as "fishing" or is it guaranteed to be there in every person, every time, with MS ?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I printed out the protocol by Garth Nicholson and gave it to my "LLMD". Hopefully she read it b/c when I first went to see her she told me that the 6 wks. of Doxy I already completed was enough. WRONG!! I just got retested by my PC (who also diagnosed the Myco) and I still have it.
When I came up positive again she had nothing to say as she had just switched me from Ceftin to Zithromax anyway. All she said was "The Zithromax will cover that then".
So what if I didn't have my PC test again? What if we didn't switch abx? Ugh!!!! I really hope she reads it in detail!!!! She seems great in every other way but when it comes to Myco she has a long way to go.
So what is CSF? I guess I better read up on MS some more also.
Posts: 2541 | From Northeast | Registered: Jan 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Sorry everyone!!!
I just realized I repeated myself in the last post with something I already said earlier. Lyme Brain!!! Posts: 2541 | From Northeast | Registered: Jan 2008
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But, if I have understood this whole thread properly (and I wouldn't swear to that either, with my Lyme brain), I just wanted to say that your neuro is probably just trying to get closer to a proper differential diagnosis, since you did not have a clear positive test for Lyme.
That's my situation too. I know that one of the things which enabled my LLMD to have confidence treating me for LD without great WB test back-up, was the fact that I had had all of these other tests (including the MRIs and two, count 'em, two LPs!) which had come up negative also. As you said, it's not that the LP will rule Lyme in or out - it's that it CAN be illustrative on MS (but not definitive, of course). Perhaps before feeling comfortable treating LD, your neuro wants to make a very educated, most-probable-condition guess - and 'mostly' ruling things out or assigning relative probabilities to them is a way for her to get there.
The pressure and scrutiny that docs willing to treat Lyme are under makes it any easier for the docs to step out on this, either. Yeah, it could be that some things are just wanted mainly 'for the file'or to CYA & show an abundance of diagnostic caution. I do well understand the limitations, dangers, etc of all of these various tests, but with MS as my original number one suspected condition, having the LP was worth it to me - even though it is not a definitive MS test.
My PERSONAL LP story? My first one was by a radiologist at Columbia. LP experience okay - aftermath, I wound up in the hospital with the headache from hell. I was checked in right before Christmas! My second LP was done many months by a super MS specialist, who did it with the smaller needle (as mentioned in post above)& I had no problems. It's a creepy concept, and I had some physical discomfort during the procedures(but nothing compared to Lyme!).
So - - I think the experience can run the gamut. One thing you CAN count on, it costs money! For me it was worth it, just to handicap my chances at having MS a bit lower than that of having LD - especially since I was going to be taking high dose abx based on the Lyme dx.
Should have pm'd this!
Good Luck Laura. I did have lesions which did not show up on non-contrast MRI, by the way. They jumped out on contrast MRI.
otm
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