and I have yet ANOTHER question...

[Erin]

(text in italics is a quote from where I'm finding my info)

Doing some more reading tonight.

I'm thinking of asking for a lumbar puncture. (eeeeek!)

I read on another website, that if the doctors cant tell if you have Lyme or MS, they do an LP, and if it's Lyme, the CSF will show increase in lymphocytes and positive PCR.

If it is MS, it will show oligoclonal bands, positive kappa chains, CSF synthesis of antibodies, increased protein.*

I'm thinking that this might be the only way to find out which one I have. Has anyone else here ever had a lumbar puncture???

I'm totally terrified of having an LP, but I really am wondering if this is the only way to find out whether it's Lyme or MS... An LP sounds painful and scary, but it really sounds like it'd be better than getting shoved back into an MRI machine (my claustrophobia is stronger than my fear of having big needles poked into the back of my spine)

Anyone have any suggestions or advice? I'm going to ask my regular doctor about possibly getting an LP on monday when I go to visit for a possible UTI.

* http://www.medhelp.org/forums/neuro/archive/14061.html

[tmptmp]

This is an issue I would spend a good deal of time discussing
with my doctor. Why I think it might be pivotal if it can sort
out MS from Lyme and then what he thinks, yeah or nay and medical
reason why -- other less invasive tests might be just as valuable
at the moment.

First, I would do all my homework and then have a long open talk
with my doctor. Pros, cons, dangers, benefits, the whole thing.
And when its done, take some days to think seriously about what's
been said between you.

Erin Wrote:
..I'm thinking of asking for a lumbar puncture. Anyone
..have any suggestions or advice? I'm going to ask my regular
..doctor about possibly getting an LP on Monday when I
..go to visit for a possible UTI

[Matthew's Mom]

Erin,
Now I must look at my LP relults. I know mine showed no bands but elevated protein.
I was dxed with MS without the bands, due to MRI results of brain, symptoms etc.

I was scared to death to have the LP, even cancelled once. Finally went in and the procedure was not as bad as I expected. They did it under flouroscope so they could make sure needle went in the right area ( I have desicated discs in back) I did get a headache but not so bad to need a patch.

Although alot is made of bands needed for an MS diagnosis, the main reason for the LP is to rule out other problems, like infection etc.

From my reading since my LP I understand it is usually used as a "last resort" test, but others may differ with me.

Pam

[blimeyitslymie]

Erin,

I had an LP. I had terrible headache afterwards and needed a patch. Not an enjoyable experience that I would do unless I really had to. Didn't show lyme, although I did have a positive western blot a couple of months later.

From what I understand, LPs are not a reliable source for identifying lyme. I don't remember where I read it, but a low percentage of people with Lyme had it show up in the spinal fluid ... anyone else remember that????

Good luck,
B~

[lymebytes]

I definitely would not recommend having a spinal tap to test for Lyme. Spinal taps show Lyme is less than 5% of cases. It is an invasive test. I have never heard of a Lyme doctor ordering this to test for Lyme disease.

[Erin]

ok... just checking.

I'm starting to get impatient about figuring out if this is Lyme or MS. I've been diagnosed with MS, but havent been totally convinced that's what I have, and cant really get a doctor to even consider lyme...other than getting my regular doctor to do the blood draws for a western blot.

[tangye5]

Please have a Lyme test done by the IGENEX Lab in California. They are highly respected and after 17 years of trying to find out why I had had a brain rupture and dizzy spells, chronic fatigue that made me fall away from everyday living. A once active runner, tennis player, OB nurse, wife and mother. I had become a sick patient with poor eyesight, brain fog, unexplained rashes that could not be identified, malaria type symptoms on a cyclical basis, joint pain and headaches that took me out. IGENEX sent my test results to a Lyme Literate doctor and I had two types of Lyme (Borrelia B., Borrelia Hermsli and Babesia Microti and Babesia WA1). The Babesia was most likely causing the malaria symptoms and a chest catheter was placed and three IV meds. were introduced and my eyesight returned, my thoughts were clear and the fatigue is lifting. I was also found to have been born with Clamydial Pneumonia. I have spirochettes, walless cells, and cysts, this disease could have been prevented in 1989 when I took the engorged tick into an army hosp. in Texas. I was told not to give Lyme disease a thought because it did not exist in Texas. So now I am on long term IV therapy, which the infectious disease doctors do not believe in. Without it I would have died several years ago. When this disease is studied and given the money needed I will bet that half the patients that were diagnosed with Ms., ALS., Chronic Fatigue Syndrome, Gulf War Syndrome, Fibromyalgia, Lupis, and Alzheimers - will be found to be Lyme positive. Several autopsies done on the plague of Aszheimers patients has been found to have Borrelia throughout. This is really scarry and it sure seems that the government is doing a great deal to cover this up. Get the tests done by this reputable Lab and then get to a doctor that specializes in Borrelia (Lyme). Thanks to an Island near Conn. back in the 1970's the military allowed a German (former Nazi), work on making ticks a bio weapon. He sure did and now we all are suffering because of this cover up. I believe it was called (PaperClip). Look it up. Best of Luck to you.

[tangye5]

Please have a Lyme test done by the IGENEX Lab in California. They are highly respected and after 17 years of trying to find out why I had had a brain rupture and dizzy spells, chronic fatigue that made me fall away from everyday living. A once active runner, tennis player, OB nurse, wife and mother. I had become a sick patient with poor eyesight, brain fog, unexplained rashes that could not be identified, malaria type symptoms on a cyclical basis, joint pain and headaches that took me out. IGENEX sent my test results to a Lyme Literate doctor and I had two types of Lyme (Borrelia B., Borrelia Hermsli and Babesia Microti and Babesia WA1). The Babesia was most likely causing the malaria symptoms and a chest catheter was placed and three IV meds. were introduced and my eyesight returned, my thoughts were clear and the fatigue is lifting. I was also found to have been born with Clamydial Pneumonia. I have spirochettes, walless cells, and cysts, this disease could have been prevented in 1989 when I took the engorged tick into an army hosp. in Texas with oral antibiotics. I was told not to give Lyme disease a thought because it did not exist in Texas. So now I am on long term IV therapy, which the infectious disease doctors do not believe in. Without it I would have died several years ago. When this disease is studied and given the money needed I will bet that half the patients that were diagnosed with Ms., ALS., Chronic Fatigue Syndrome, Gulf War Syndrome, Fibromyalgia, Lupis, and Alzheimers - will be found to be Lyme positive. Several autopsies done on the plague of Aszheimers patients has been found to have Borrelia throughout. This is really scarry and it sure seems that the government is doing a great deal to cover this up. Get the tests done by this reputable Lab and then get to a doctor that specializes in Borrelia (Lyme). Thanks to an Island near Conn. back in the 1970's the military allowed a German (former Nazi), work on making ticks a bio weapon. He sure did and now we all are suffering because of this cover up. I believe it was called (PaperClip). Look it up. Best of Luck to you.

[Erin]

I have had an Igenex Western Blot. It came back with a few bands showing, just not enough for the stupid doctors to say, "Hmmm....I think you have Lyme..."

I'm going to get another test at Igenex for the co-infections, to see if that'll bring something up.