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Lumbar Puncture??

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Posted 1/19/2014 12:19 AM (GMT 0)

Hello. I am between diagnosis. My MS specialist has me getting a lumbar puncture on Monday. Is this effective in ruling out Lyme as well as diagnosing MS? I know no one is a doctor but I figure people here have been though it. Anything you can tell me would also be appreciated.

Posted 1/19/2014 1:49 AM (GMT 0)
Not effective for lyme - really low accuracy. I wouldn't do it unless it where a must. It can really screw up your body if you have lyme.
Posted 1/19/2014 2:32 AM (GMT 0)
Hmmm. Well what options do I have? Go see a LLMD first? My vision is getting so bad.. I just want some answers...
Posted 1/19/2014 3:55 AM (GMT 0)
I wouldn't do it. I had three, and the last two gave me a spinal headache--really awful. You need to seek medical advice, but I put a "no" to lumbar punctures on my living will.

And the third time I had one, the doctor doing the blood patch hit a nerve, and then they told me I had to leave the hospital, a-------s. I could barely walk!

M
Posted 1/19/2014 1:34 PM (GMT 0)
Hey opugirl, isn't it really low sensitivity? I think if you test positive on the lumbar puncture it is a high indication of Lyme (high accuracy). The problem is a high percentage of people who have Lyme are falsely diagnosed negative with this test (low sensitivity). So they are lead to believe after high hopes of this procedure that they don't have Lyme.
Posted 1/19/2014 3:52 PM (GMT 0)
@ccpoly - high specificity but low accuracy. You are right that it is a high indication of lyme if you test positive. Overall it is a low accuracy because of the higher number of false negatives.
Posted 1/19/2014 4:46 PM (GMT 0)
My dr thinks it's a total waste of effort - my neurologist wanted to do one just 2 months ago, but my LLMD refused. When she heard I had Lyme for such a long time, she then decided that it's not worth doing it.
Posted 1/19/2014 4:50 PM (GMT 0)
Back in 2006 I had a LP and it left me with a bad headache for a week and I missed work the whole week. I would go the Lyme route first, I've had it for 15 yrs and never recall a tick or a bullseye but I am very active outdoors.
Posted 1/19/2014 5:27 PM (GMT 0)
Hi opugirl, just want to make sure our terminologies are the same so we can describe things the same. Still learning here but from my understanding when referring to Lyme specificity:

Specificity is how accurate a test is. For instance, if a test is 99 percent specific then it is 99 percent accurate in the sense that it produces false negatives 1 percent of the time for people with Lyme. Specificity doesn't take into account the chances of a false negative it only addresses how accurate a positive result is.

For example, if someone tests positive for a highly specific test, there's almost no refuting that result. It is a highly accurate test.

However, if someone with Lyme tests negative for a highly specific test, it doesn't mean the test isn't accurate, it just means the test has low sensitivity.

Does this sound right?

Post Edited (cppoly) : 1/19/2014 10:44:16 AM (GMT-7)

Posted 1/19/2014 6:06 PM (GMT 0)
Would is the DNA test called, a PCR? That's one of the tests that came back positive for me. Otherwise, you need an LLMD to look at the Igenex Western Blot.

My PCP told me that it's very difficult to test for Lyme. I think he agrees there are a lot of false negatives.

Margaret
Posted 1/25/2014 10:01 PM (GMT 0)
To Learn Lyme--I think she will not have the LP until Monday but I have a question for you. In your above post you said that for $200 she could have a Lyme Test from Igenex. I am going to be paying over $1100 for the Lyme, Co-infections, and Exam when I see the LLMD. So how in the world did you get such a cheap price and where?

Please let us all know!
Posted 1/25/2014 11:30 PM (GMT 0)

Hello everyone. The procedure it’s self went fine. I had no issues the first few days but then I got a terrible migraine for 2 days. It was so intense it made me natious. Then just like that it was gone. Today I have no headache whatsoever. Just back to my “normal” symptoms. I have two doctor’s appts on Monday. One is to see an LLMD and the other is the follow up with the MS doc regarding the LP. So I guess I will listen what they both have to say and make my treatment decisions from there.

 

I guess I started to suspect Lyme because I have so many symptoms and no answers. Some symptoms are typical of MS, and some are not. I can’t seem to get a definate diagnosis from anyone so I started doing me own research. That eventaully lead me to Lyme. I have about 30 symptoms and they are all on the “New to Lyme” thread. I do have an abnormaility on my brain MRI but I now have 2 neurologists that are hesitent to make a MS diagnosis based on this and my symptoms. Maybe she will be more confident after the LP results are in her hand.

 

It seems like even IgenX tests could come back negitive so the only way to really know if you have Lyme or a coinfector is to get a clinical diagnosis and then see if treatment eventually works. I’m going to take the IgeneX test anyway assuming the LLMD thinks it is even warranted.

 

I’ll keep everyone posted.

Posted 1/29/2014 5:44 PM (GMT 0)
Hello again. I went to see the LLMD. He said it is possible that I have Lyme but he wasn’t ready to make a diagnosis without tests. So I had more blood taken and am having tests done by 2 separate labs one of which is IgenX. I then went and saw the MS doc regarding the results of my lumbar puncture. She said based on the results she does not feel I have MS but there is still some blood work out that she wants to see… So yeah.. Basically they both told me that my symptoms were strange and they don’t know what to tell me.. Jusr like the previous 13 doctors. I guess we’ll see what the blood work says in a few weeks. I went ahead and had the full panel for Lyme and coninfectors done through IgeneX. I expect it will take a few weeks for results..
Posted 2/4/2014 5:38 AM (GMT 0)
I'm in the minority here it seems, because after my experience I would have the LP again. The day before I had my LP my blood work came back positive for Lyme. My doctor thought I should have the LP to rule out the MS because it is possible to have both and because my symptoms appeared more like MS than Lyme. I had no bad reaction to the LP and it did indeed rule out the MS and was positive for Lyme. This allowed me to start IV Rocephin immediately with no hassle from insurance.
Posted 2/4/2014 7:49 PM (GMT 0)
The LP didn't hurt it was the aftermath. I too had a spinal headache for days!!!!! One of the "O" bands was positive but my neurologist said that is Lyme BUT...if I ever wanted IV Rocephin and other stuff I can now get it without hassle like Nor Cal Lymie said. However...I would not recommend it. That headache was the worst!!! Geez!!!! Keep us posted about the IGenex testing.
Posted 2/4/2014 11:51 PM (GMT 0)
I do realize I was very fortunate and am so grateful for how it all played out. My doc was sure it was MS based on symptoms and history. My neurologist said there was no sign of MS in my MRI. So, I scheduled to go see an MS specialist at UCSF. The weird thing was, weeks before, I watched Real Housewives of Beverly Hills and after seeing Yolanda Foster I went back to my PCP and asked for a lyme panel. The day before UCSF it came back positive. The MS specialist did the LP and also re-read the MRI. You could clearly see the meningitis, which the first neuro dude missed. Then after the LP showed Lyme it was off to the races and I got treatment. I am praying we caught it in the acute stage, but I am also educating myself and taking steps for handling whatever may come.
Posted 2/5/2014 4:41 AM (GMT 0)
Had lumbar puncture during diagnoses. One of the worst things ever and I've had countless sports injuries lol.

Problem was they couldn't get it into my spine because my back ligaments were to strong due to lifting for my occupation so they stabbed ligaments and nerves (worst pain!) in 4 different spots before getting through to extract the fluid. Lay flat for 2 days like they said, tap spot never healed so I got migraines. Ended up taking 2 1/2 weeks to heal, couldn't stand for more than 10 min at a time before nearly losing sight and hearing due to fluid loss around the brain.

Needless to say I don't recommend it anyone unless they have too! Oh well, on my way to healing now!

LC
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