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!
Posted by Lymetoo (Member # 743) on :
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!
Posted by laura j (Member # 14257) on :
Thanks Tutu,
A 20% chance of finding Lyme or Myco?
Posted by Lymetoo (Member # 743) on :
20% chance of finding Lyme. I assume it isn't much better for finding myco.
Contact Wild Condor. She may know for sure.
Posted by Munch (Member # 11323) on :
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:
"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.
Posted by mtree (Member # 14305) on :
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.....
mtree
Posted by laura j (Member # 14257) on :
Thank you for all the info and positive thoughts. I'm sure I won't sleep tonight.......
Posted by Geneal (Member # 10375) on :
I sure hope you get the answers you are looking for.
Sending you positive thoughts and prayers.
Hugs,
Geneal
Posted by listenswithcare (Member # 10719) on :
How did the tap go? Are you okay? When will you get results?
Robin
Posted by WildCondor (Member # 434) on :
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.
Posted by laura j (Member # 14257) on :
Not doing so good. Hope I at least get some info from the results.
Posted by Lymetoo (Member # 743) on :
PRAYING you will be OK and that the test will show something you need it to show! Posted by laura j (Member # 14257) on :
thank you so much TuTu! Gotta go lay flat again.... Posted by mtree (Member # 14305) on :
laura....
I hope your feeling better today......
I'm thinking about you.....
mtree
Posted by Lymetoo (Member # 743) on :
Don't overdo ANYTHING, Laura.
Posted by laura j (Member # 14257) on :
have to get blood patch tomorrow
Posted by MysteryGirl44 (Member # 10201) on :
Good luck! Posted by Lymetoo (Member # 743) on :
quote:Originally posted by laura j: have to get blood patch tomorrow
*&&%$%.. D*** ducks!
Posted by laura j (Member # 14257) on :
got my blood patch. feeling a little better.
what a HELLISH experience this whole thing has been!!!!!!! Posted by Lymetoo (Member # 743) on :
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?? Posted by laura j (Member # 14257) on :
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.
Posted by mtree (Member # 14305) on :
Hi Laura........
glad thats over with.........for you..... when I had mine it was a horror show ....
hope your feeling better soon..... mtree
Posted by laura j (Member # 14257) on :
Thanks mtree,
I guess I was just hoping it wouldn't happen to me. Boy was I WRONG.
Posted by Lymetoo (Member # 743) on :
Get lots of rest! Posted by laura j (Member # 14257) on :
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! Posted by Lymetoo (Member # 743) on :
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!
Posted by Tincup (Member # 5829) on :
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!
Posted by laura j (Member # 14257) on :
I just told him. He said he had no choice! (he really didn't) but thanks!
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.
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mtree
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