Spinal tap, pros & cons, help!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/21/2009 1:51 PM (GMT -7)   
my nuero has it set up for me to have a spinal tap on thr. i have many pros and cons as to haven this done. i would love your input on this. thank you.
 
1 i fell out a 2 story window when i was 5 y/o landing on my back. then when i was around 25 i was in a car wreck and bubbled  some dics in my back. i was told then not to ever do another situp as i could wind up in a wheelchair.
 
so needless to say i am more then a lil scared to have this done. my PCP told me its to check and see what stage lyme i am in. the ID sent me to the nuero to rule out MS. he stated he didnt think i had MS, but that i tested positive for a new exposure to lyme.
 
i wonder if the nuero will treat me for lyme. i plan to ask him at my next appointment 3 weeks from now.
 
i have also been checking every lead i get, and all reads lead to a dead end. i have found out there is 5 cases of others who was reported with lyme here. but havent as of yet found anyone who treats for it.
all Dr.s stating there is no lyme in this part of Tx. what a crok of bull!!
 
ya'll understand me, i wish the Dr.s would. maybe ya'll can send me some good bad ticks. i'll give em to my Dr. then when he gets lyme  he will treat others with it. lol
 
it just blows my mind we have to go thro this crap. and i know its just a matter of time b4 i dont have the mind to be blown away. so sad, so wrong, so injust.
   RD
                                                                                                                 
 
still looking for answers
 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/21/2009 2:09 PM (GMT -7)   
I'm hoping Ticker sees this and can shed some light on the spinal tap. She is very knowledgeable.

I'm looking out for you as a friend as I don't want them to not find Lyme and then you're really in a bind.
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/21/2009 2:24 PM (GMT -7)   
CG, thank you so much, as i count you as a friend too. but seeing as i have the test witch shows positive on IgM, i dont see how they can say i dont have lyme. and i also show 10 to 15 lesions in my brain on my MRI. its just baffels me that they will not treat me for it. all they want to do is run test after test to no avile. i see it as pointless at this point.

here is my feelings on it. i am sitting idealy by as lyme has full run over my body. the Dr. know this but turn there heads. i know more then they do and thats not saying much. i do knwo that lyme can damage my body and brain and possably kill me. yet they do nothing to help me or sto it.

then added to all this, i am on a county program here with only so much money a yr for medical. all the needless test will eat it up. and by the time they do wake up. i will be out of set money and then cant get treated. this is what scares me the most.

if and when i win the lotto or PCH i will be setting up a trustfund to help others like myslef. to pay for transprtions and treatment. this is my goal in life now.
   RD
                                                                                                                 
 
still looking for answers
 


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/21/2009 3:05 PM (GMT -7)   
Frango, thank you

i agree and think this is needless, but they want to rule out MS 100%. i belive i got infected in 2000 - 2002, or it could of been as soon as 2006. since i have lived in Tx. i know i have not been bit by a tick here.

i have lived with pain most all my life, due to sports and horses hard not to get hurt. and most of my troubles in the those yrs was just pain. and tummy troubles. everything else including the pain i was always able to make exsuse for. now after reading the sx for lyme it all makes since.

as of now i do not have the brain issues other then my eyes and headaches. i want to be able to fight this b4 it comes to that. this is my biggest fear. cause then i will now have a body or brain. i will just be.. the living dead. this is no way to live in my book.

and its so sad it can be treated. and the medical communtly turn us away. i find this to be a crime.

as for my body fighting a infection i know my WBC is up and has been for a yr now. but my Dr. thought it was fighting the arthirtis they knew i had but not what type i had. all test for RA come back normal. even the rtumatoligist i whent to asked if i was ever double jointed b4. like it goes away..lol then stated that all my joints show the wear and taer of someone who is. he also stated i had arthiris but didnt knwo what kind. this was 1 yr ago.

i guess i have seen every quak Dr. out there in my screch.
   RD
                                                                                                                 
 
still looking for answers
 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/21/2009 3:41 PM (GMT -7)   
RD,

If it is to rule out MS, then I say go for it. Make sure your doctor knows about your accident when you were a kid though. I had it done and I didn't feel any pain...just pressure. The anethesiologist talked me through the whole way. One thing you do need to know is not to stand up right after the procedure. You have to stay lying down for so many hours. I don't remember how long or it could cause a very bad headache. They didn't tell me to stay lying down and I got up to use the bathroom. I didn't get a headache, thank God. So, just wanted you to know that.

Anyway, good luck with whatever you decide. I'm rooting for you!
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/21/2009 3:50 PM (GMT -7)   
CG thank you for all our support :)

¤°´¯BIG.¤*¨*¤(¯`´¯)¤*¨*¤.Hugs¯`°¤.
   RD
                                                                                                                 
 
still looking for answers
 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/21/2009 3:57 PM (GMT -7)   
Let me know if you do decide and remind me the day before so I can say some prayers for you.
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 655
   Posted 6/21/2009 4:01 PM (GMT -7)   
I think Frango was trieing to say that they may be trieing to shut you up with a negative spinal tap for lyme. If you have a pos test already you may want to stick w that as proof. and not give them a false spinal tap to use against you.
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/21/2009 4:06 PM (GMT -7)   
Veronica,

That's what I was trying to say too, LOL. I hope they don't do that. It will piss me off! She does need to rule out MS though.
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/21/2009 4:12 PM (GMT -7)   
lets just say if it showed up negitive on the LP. it wouldnt shut me up. as i do have in black and white a positive IgM. and i am not easaly bullied. i think its why my PCP told me i wasnt alouwed to even bring up lyme to him anymore. as i was begging him to treat me every time i saw or talked to him.

i didnt care who treated me just as long as someone would. the ID is a jerk. i do not like his so called bedside manner. and he was in the wrong to hold my test in his had and tell me there was no lyme in this part of Tx. this is what pissed me off the most. and so i tryed to go over his head. guess i pissed him off too...lol

at lest it got me some abx if not enough. but hoping it will hold me over till i can find someone welling to work with me.
   RD
                                                                                                                 
 
still looking for answers
 


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4198
   Posted 6/21/2009 5:04 PM (GMT -7)   
Just make sure you get a copy of the spinal tap report - I've been lied to by many incompetant doctors.
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), probiotics, homeopathy.


Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 6/21/2009 5:06 PM (GMT -7)   
Hey! I should have mailed my last tick to you! I found out on Friday they didn't test it. I know I sound dumb, but I can't remember what the reason was. I was at work at the time I spoke to the girl from the Drs. office, and had gone right back onto the doxy as soon as I was bitten, so it doesn't really matter I guess. The Dr. had said that those tests aren't always accurate either, but was still going to send it out.

I would tell you to come here to PA, at least you could get treated, but my yard is so full of ticks, I wouldn't blame anyone who never wants to visit me here!

Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 6/21/2009 5:19 PM (GMT -7)   
RD,

As for the spinal tap, my husband wasn't going to let that happen if they had wanted to do that. I don't know what the right answer is for that. The ID Dr. would have thought about it only if I had a severely swollen joint or more neurological sx, but I don't think my husband would have been agreeable to that even then. That was the one thing he was against.

But your circumstances are different. And only you can decide what is right for you.

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 6/21/2009 7:00 PM (GMT -7)   

Hi RD.  I have not yet read the replies, so I apologize if I repeat information already posted.

The neurologist said the spinal tap is being done to see what stage Lyme you have?  From what I understand, spinal taps show Lyme in less than 5% of cases.  I do not believe that Lyme doctors order this test to test for Lyme.   If the test is being done to test for Lyme, I highly recommend that you research this further before gettting it done because of how unreliable this test is for Lyme disease.

If you have the test done, make sure you follow all directions for what you need to do after the test.  I believe you have to lay flat for a certain length of time or you can get a very severe headache.

 

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 6/21/2009 7:04 PM (GMT -7)   
RD, I think you should do it. VSF can be sent to Igenex forvPCR ( see my post below. On urine testing)... And good luck

stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 6/21/2009 8:08 PM (GMT -7)   
Everything I have read says that spinal taps are NOT used to diagnose LD. They are used to rule out everything else.

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/21/2009 9:52 PM (GMT -7)   
this was order by my nuero, not my ID. the nuero said he didnt think i had MS tho. but i guess it wants to be sure. i asked my PCP why he would do this as i am agenst it. and the PCP told me it was to help rule what stage lyme i was in. this is when i found out there was 3 stages to lyme.

as for getting a copy of my test. i always get copies even b4 my Dr. does most times. if i do this. its done at the hospital here and all you have to do is sign the pappers to resive copies. you get it right then and there.

thank you all for responding to my post :)
   RD
                                                                                                                 
 
still looking for answers
 


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 6/22/2009 7:47 AM (GMT -7)   
A spinal tap is not a good test for Lyme.  And if the neuro is saying he does not think you have MS, I don't see why you should get the test.  This is just my non-medical opinion.
 

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/22/2009 11:53 AM (GMT -7)   
thank you ticker
   RD
                                                                                                                 
 
still looking for answers
 


minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 6/22/2009 2:23 PM (GMT -7)   
A spinal tap is definately NOT[code] a good indicator for Lyme. I had one a some years ago (before being treated by an LLMD)at the insistence of a moron of an ID doctor who knew absolutely nothing about Lyme. I even had a positive WB test with a bulls-eye ---the works. The spinal tap was clear and negative and she insisted I didn't have Lyme.

Long styory short I have had late stage- chronic Lyme for years along with many co-infections.

You must lay absolutely flat for a day after the test or you will get a worse headache than you might have now. If I were you I would try to see through the incompetence and ignorance of these so-called doctors and not let anyone put me through more tests that will eat up your deductible. You need treatment-Period.
Diagnosed 2003 Lyme, Babesia, Bartonella, Micoplasma,Hashimotos Thyroiditis. Have had since early nineties. [/color]

<FONT color=#0000ff>Outstare The Darkness--The Light Will Come!


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/22/2009 9:35 PM (GMT -7)   
minerals, thank you for the advice. i am taking it all to heart
   RD
                                                                                                                 
 
still looking for answers
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, December 18, 2014 8:18 AM (GMT -7)
There are a total of 2,298,691 posts in 255,247 threads.
View Active Threads


Who's Online
This forum has 159728 registered members. Please welcome our newest member, johnnywyoming.
307 Guest(s), 19 Registered Member(s) are currently online.  Details
Katebirch, imagardener2, AngMichelle, Sunny Pseudo, NY-Sooner, Utahgal, Audrianna, Eph, getting by, Fronton, testing123, Purgatory, opnwhl4, ISU-CycloneFan, bananagirl, franko63, herefishy2001, Momtogigiandquinn, Shaba.Doug


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest  Follow HealingWell.com on YouTube
Advertisement
Advertisement

©1996-2014 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer