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» LymeNet Flash » Questions and Discussion » General Support » Spinal tap Monday, wish me luck!

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Author Topic: Spinal tap Monday, wish me luck!
tickled1
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Hi there,

I decided to go ahead w/the Spinal Tap despite everyone telling me it would be a mistake. The reason I decided to do it is not to look for Lyme, but for Mycoplasma in my CSF.

I keep testing positive for Myco but my Lyme Dr. doesn't believe in chronic cases of Myco so I'm thinking if they find it in my CSF that maybe she'll take it more seriously.

Anyway, please say a prayer that all goes well for me. Thanks everyone!

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Lymetoo
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Good luck. You've got about a 20% chance of finding it....but if you're gonna do it.. I will pray and wish you the best!

--------------------
--Lymetutu--
Opinions, not medical advice!

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tickled1
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Thanks Tutu,

A 20% chance of finding Lyme or Myco?

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Lymetoo
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20% chance of finding Lyme. I assume it isn't much better for finding myco.

Contact Wild Condor. She may know for sure.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Munch
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I thought there was a whopping 14% chance of finding Bb in CSF. What if you get your hopes up that you'll get an definitive answer only to find another non-answer?

How will they guarantee your CSF sample will be tested for all 8 known strains of mycoplasma?
Can the Ducks even agree on which strains cause human disease? Is it a coincidence that mycoplasma is a collateral finding in a lot of illnesses?

According to Leslie Taylor, ND Stealth Pathogen article these strains "may" cause the following:

http://www.regenerativenutrition.com/content.asp?id=267

"Mycoplasma genitalium
Arthritis, chronic nongonococcal urethritis, chronic pelvic inflammatory disease, other urogenital infections and diseases, infertility, AIDS/HIV

Mycoplasma fermentans
Arthritis, Gulf War Syndrome, Fibromyalgia, Chronic Fatigue Syndrome, Lupus, AIDS/HIV, autoimmune diseases, ALS, psoriasis and Scleroderma, Crohn's and IBS, cancer, endocrine disorders, Multiple Sclerosis, diabetes

Mycoplasma salivarium
Arthritis, TMJ disorders, Eye and ear disorders and infections, gingivitis, periodontal diseases including even cavities.

Mycoplasma hominis and Ureaplasma urealyticum
Pelvic inflammatory disease, infertility, non-gonococcal urethritis, vaginitis, cervicitis, amnionitis, pyelonephritis, post-partum septicemia, neonatal pneumonia, neonatal conjunctivitis, Reiter's syndrome, peritonitis, wound infections (C-section), low birth weight infants, and premature rupture of membranes.

Mycoplasma pneumonia
Pneumonia, asthma, upper and lower respiratory diseases, heart diseases, leukemia, Steven-Johnson syndrome, polyarthritis or septic arthritis, CNS disorders and diseases, urinary tract infections, Crohn's and Irritable Bowel Syndrome, Guillain-Barr syndrome, polyradiculitis, encephalitis, and septic meningitis, autoimmune diseases.

Mycoplasma incognitus and
Mycoplasma penetrans
AIDS/HIV, urogenital infections and diseases, Autoimmune disorders and diseases

Mycoplasma pirum
Urogenital infections and diseases, AIDS/HIV

Mycoplasma faucium, M. lipophilum and M. buccale
Diseases of the gingival crevices and respiratory tract"

What about the strains they haven't discovered or named yet? If they don't have a good test for it how do they know it is or isn't there? If they don't run the "right" test how will they prove or disprove it's existance?

My neuro wants to do a spinal tap because of my sarcoid diagnosis. No thanks!

After having a painful bone marrow biopsy (BMB) to confirm a diagnosis of Polycythemia Vera, I'd just as soon keep my body fluids to myself. Not enough marrow was extracted to make a diagnosis.

I made my hematologist revisit the slides from my BMB. That was when I learned they didn't test
my marrow for infectious diseases. They just ran whatever tests the doctor ordered.

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mtree
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prayers to you Laura........

they are not the funnest thing to do...but if ya gotta do it......
I'll be thinking about you and hoping its quick and painless..... [bonk]

[Smile] mtree

--------------------
worrying about tomorrow takes its strength away from today

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tickled1
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Thank you for all the info and positive thoughts. I'm sure I won't sleep tonight.......
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Geneal
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I sure hope you get the answers you are looking for.

Sending you positive thoughts and prayers.

Hugs,

Geneal

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listenswithcare
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How did the tap go? Are you okay? When will you get results?

Robin

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WildCondor
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In my experienced opinion, it's a total waste of time and money....and a LP is NOT fun!

Good luck, but they miss 80% of cases of Lyme, Mycoplasma you can get a blood test for.

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tickled1
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Not doing so good. Hope I at least get some info from the results.
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Lymetoo
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PRAYING you will be OK and that the test will show something you need it to show! [group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

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tickled1
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thank you so much TuTu! Gotta go lay flat again.... [shake]
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mtree
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laura....

I hope your feeling better today......

I'm thinking about you..... [Roll Eyes]

[Smile] mtree

--------------------
worrying about tomorrow takes its strength away from today

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Lymetoo
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Don't overdo ANYTHING, Laura.

--------------------
--Lymetutu--
Opinions, not medical advice!

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tickled1
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have to get blood patch tomorrow
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MysteryGirl44
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Good luck! [Big Grin]

--------------------
"Life doesn't have to be perfect to be wonderful."

www.myspace.com/lymediseaseawareness

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Lymetoo
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quote:
Originally posted by laura j:
have to get blood patch tomorrow

*&&%$%.. D*** ducks!

--------------------
--Lymetutu--
Opinions, not medical advice!

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tickled1
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got my blood patch. feeling a little better.

what a HELLISH experience this whole thing has been!!!!!!! [puke] [shake] [Eek!] [toilet]

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Lymetoo
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Over the past 7 yrs, I've heard way too many horror stories on this. I will not do it unless my very life is being immediately threatened.

Let us know how you're doing tomorrow, OK?? [group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

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tickled1
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My headache is better today after having the blood patch yesterday but am noticing a flare in other symptoms like bone pain, fast pulse and feeling like I'm not getting enough air.
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mtree
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Hi Laura........

glad thats over with.........for you.....
when I had mine it was a horror show ....

hope your feeling better soon.....
[Roll Eyes] mtree

--------------------
worrying about tomorrow takes its strength away from today

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tickled1
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Thanks mtree,

I guess I was just hoping it wouldn't happen to me. Boy was I WRONG.

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Lymetoo
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Get lots of rest! [group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

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tickled1
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I am Tutu. It's hard with a 2 yr. old but my husband took all this week off from work to take care of her since I couldn't even lift my head off the pillow.

Thanks everyone for your kind words and concern! [group hug]

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Lymetoo
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Tell him we said he's a jewel! I'm so sorry this turned out badly.....Now, if that test will just SHOW something positive!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Tincup
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Ouch ouuuuchhheeeee..

Hope you are better soon! Good hubby too!

And for you others...

I will be opening the shelter soon and you all are welcome to join me.

I know NONE of us want to be around when she gets negative tests after all this. I am quite sure she will explode!

So run! Jump in the shelter and go down deep! Save yourselves! She's about to BLOW!!

I'll leave the door open!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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tickled1
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I just told him. He said he had no choice! (he really didn't) but thanks! [Big Grin]

My Neuro said it will take awhile for some of the tests to come back but so far there isn't any evidence of acute infection like meningitis but she said there were some cells in my spinal fluid but nothing of major concern. So I asked if that was normal and she said she wouldn't say it's exactly normal but wouldn't elaborate further yet.

I can't wait till all the results are back!

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