hi, this is sunra's boyfriend. we need some help with something. her head pain,swelling, and brain symptoms have been so severe that her neurologist is putting her in the hospital tuesday to run tests for meningitis, etc. She's really nervous about getting the spinal tap. But her LLMD agreed with him. but we didnt get a chance to discuss it much with her as she went away on vacation. So now we have a neurologist who isn't very knowledgeable about lyme running the game.
It's obviously not a test she wants to repeat, so while they're doing it, are there any tests we should request? (keeping in mind we are very limited on funds and she only has medicaid)
She had me go to the igenex website to look up info, but I'm having a hard time figuring out what's what. She already has a positive blood test for lyme. She had read that Bartonella can sometimes be picked up in the spinal fluid and not blood. Is that true? What about Babesia?
The problem is that the neurologist will not be open minded to sending a sample to one of these other labs. How do we go about this? I'm overwhelmed trying to help figure this out. any suggestions? also, is it even possible to get an igenex test kit so soon, and without her LLMD? she is being admitted at 7am on tues...not much time to figure this out.
she wanted me to note here that the lumbar puncture is not being done to diagnose lyme, but to check the pressure, meningitis, etc. (although the neurologist will probably put a lot of stock in the lyme result and ignored us when we told him it only picks up 20%) But right now she needs the test due to her symptoms.
thank you. sorry for all the questions!
Posted by flossie (Member # 3384) on :
hi there
sorry to hear this, it's no fun.
it's been a couple years since we went through similar issues w/ taps etc, so hopefully others will be along soon to help as well. i don't know where you are... but if you're near igenex (northern ca) you could go pick up a kit. otherwise i would call them first thing on monday, tell them it's urgent and regarding a tap being done the next day, and ask to speak to the director. he's a totally lovely man, and can probably help you figure out what would be most useful and how to frame it for the neurologist.
in our case, the taps were done by our llmd, who sent vials off to MDL and Igenex for PCR's... it was actually quite helpful in that we got a positive PCR for m. fermentans which then led to a really useful change in treatment. but of course you know how lucky that is... very often the results are negative no matter what lab you have them done at and even if you KNOW the infection is present. anyway.... the few pieces of advice i have are:
-- call igenex, and/or if you are in NY area call MDL & ask for lab director/medical director & see what advice they can give about how sample needs to be treated shipped etc. if you have a very clear request for the neurologist, with name of tube, type of storage, amount of fluid needed etc, plus provide ready shipping container (styrofoam cooler, frozen gel packs, etc if needed) it might be more likely they will draw what you ask)
-- be very careful about moving your girlfriend after the tap. post tap headaches are truly horrible, and you want to avoid them if at all possible. if you can, have a station wagon or other transportation that she can lie down in to transport her to/from tap. she should be prone as much as possible for as long as possible afterwards.
-- consider PCR testing for m. fermentans (only at MDL, not igenex)
-- consider asking neurologist to take sample of CSF and save it, frozen, if they will not consent to sending it elsewhere, or if you don't know for sure what tests should be done in time to request the right things. that way your LLMD can request whatever tests they want on the sample when they return from vacation, and/or you can do more research with labs, and you will have the CSF waiting. i believe all PCRs for coinfections can be done on previously frozen CSF, but of course you should probably double check this with the labs. our LLMD always took an extra vial and saved it for later, just in case... it's not easy to get, as anyone who's had a tap will tell you!
best of luck, flossie
Posted by trails (Member # 1620) on :
Does the LLMD have a secretary or nurse that could help you with this stuff?
MDL typically does NOT allow patients to order testing. They will only allow it if the doc orders it. or of course the secretary or nurse.
I would call the LLMDs office and see if there is ANYONE who can order the tests for you and make sure they know the time constraints. MDL can get the stuff to you overnight, but it might not be fast enough. Make sure to let the nurse know that they need to ask what can be done if you dont recieve the proper vials and such before the procedure.
AS far as the neuro sending the stuff---dont worry. I have had biopsies done and the surgeons didnt even blink at me carrying in my biohazard bag with all the instructions for how to send the stuff off for them. It is very easy--the hospital will drop it off at DHL--they already do this with other tests.
I agree with flossie on everything. And if the headache gets worse (even days after) call the hopsital and make sure to take action immediately. I have had to have a blood patch from a spinal that didnt heal--the headache the worst, ever.
good luck, you are doing the best you can, Trails
Posted by chroniclymie (Member # 7697) on :
the neurologist should probable do a pcr on the spinal fluid and also a test for MS also. spinal taps are not very pleasant ,in fact it may have been the wost thing i've ever had done awake. make sure they wait 4-5 minutes for the lidocaine to work before they do the tap. this way it will be numb. usually they do it right after giving the lidocaine and most don't realize it takes 4-5 minutes to get numb. most dentists don't know this either. frozen specimen for future is very important in case they screw up one of the tests. good luck, docdave130
Posted by Michelle M (Member # 7200) on :
Hi, Sunra's boyfriend!
You are a very devoted boyfriend. Good for you.
Have her drink about 10 gallons of water and lots of Coke before the tap. (A tip from a nurse.)
This will cause her great indignity because, like me, she will NOT want to use the bedpan and will try and "hold it" till her lying-flat time is over. HAH. Tell her to just give in and save herself the agony.
IGeneX will test the cerebrospinal fluid for lyme - I s'pose they'll also test it for babesia and bart and whatever else you request, as well. However, get ready 'cause it's really pricey. As you know, chances are extremely small of finding it there no matter how sick she is. My tap was negative in spite of a CDC positive western blot, with really positive *** borrelia specific bands. It just does not like to live in spinal fluid.
Make sure they do an "MS Panel," though I'm sure they're going to do one anyway...it has a lot of good markers in it which can be indicative of impairment in the blood brain barrier. They will also look for oligoclonal banding..(They'll say that is from MS, but YOU'LL know it can also be from lyme.)
Elevated proteins are a relatively common finding in lyme, indicative of brain infection or inflammation. The tap will tell you that.
One good thing was that following my tap I had a period of incredible relief of my headaches that lasted for several weeks. I joked with my neuro duck about coming in regularly for them (ha ha); actually some people have to (called therapeutic lumbar puncture).
Have her insist on a copy of her test results, which will likely take a couple weeks. (They try to grow cultures, etc.)
Call Dr. Nick Harris at IGeneX with questions; I'm betting that if you don't have their materials in time, it's still fine to do it with someone else's tubes & stoppers; just print off an IGeneX PDF form and check the right box & have your duck initial it.
Best of luck to you and SunRa...have her let us know how she's coming along!
Michelle
Posted by flossie (Member # 3384) on :
hi again
re deciding what to test for.... i'm sure you've thought of this, but when we were going through all that, it was always important for us to figure out what the repercussions of a negative test would be. i.e. if you already have a positive test for lyme and know that is in the body, will a negative test in CSF be ammunition for your ins. co./medicare or one of the less lyme literate docs to use against your GF's best interests? if so, maybe it's not worth the money and risk of negative result...
and, conversely, if you do not know one way or another about a co-infection, for example, what would a positive test tell you? would it change or effect your or your LLMD's decisions about treatment? if so, maybe it is worth spending the money and risk of a negative test.
in other words, i'd probably avoid doing any lyme testing in teh CSf if you know she has it and she's clearly got a neurologic infection. on the other hand, testing for bartonella and m. fermentans, which can be located in the CSF and mght require differnt abx choices might be very worht doing, financially and otherwise.
as for babesia, my experience is that you are most likely to see it on smear-based microscopy testing of blood (not CSF) , which Igenex does, both for WA-1 strain and microti. but i would double check that with nick harris, since he's the expert, for sure.
not sure about erlcihia, but ditto in terms of checking with igenex themsleves.
can't emphasize enough how impotant the m. fermentns idagnosis was for my BF, but Igenex doesn't do it -- they think the testing is not so reliable. and it's true, like with all PCR testing we did (with igenex or MDL) it's very likely you cna get false negatives... but i do have to say that the tests MDL did for us on M. ferm were quite consistent and helped a lot with treatment.
ok.... good luck....
Posted by bettyg (Member # 6147) on :
quoting Melanie M
Call Dr. Nick Harris at IGeneX with questions; I'm betting that if you don't have their materials in time, it's still fine to do it with someone else's tubes & stoppers;
just print off an IGeneX PDF form and check the right box & have your duck initial it.
That's the one thing I see everyone forgot to mention, printing off IGENEX'S required form!
completing it where Dr. MUST SIGN, DATE, SHOW A DIAGNOSIS CODE.
IGENEX IS PREPAY ALSO; don't know how that works for title 19/medicaid! Ask Nick Harris about that too!
good luck Sun Ra; will be praying you get answers and for your comfort level that day..Bettyg Posted by lymie tony z (Member # 5130) on :
personally they never found anything in my CSF...
I think this test is a waste of time, money and is painful to some...
Neuroborelliosis is the probable cause of the menengial symptoms...swelling headache stiff neck blurred vision and language or speaking problems...
I guess it would rule out other stuff but these neurological ducks DON'T get it!
good luck...........GOD Bless........zman
Posted by Foggy (Member # 1584) on :
Send that Phishy lil SunRa my regards & well wishes.
My 2 Taps showed no Lyme but did rule out other conditions, so it was of diagnostic value. It also convinced my duck PCP that I was truly ill. He said most who aren't bail at the sight of a turkey baster size needle
Do be sure she lays flat as often as possible & drinks the caffene. Those Tap headaches are brutal.
Posted by Lymetoo (Member # 743) on :
Any news on how the spinal tap went?? Hope SunRa is doing well! Posted by TheCrimeOfLyme (Member # 4019) on :
SunRa is having the tap tomorrow at 7 am, so she hasnt had it yet.
I have nothing to add except DONT drink ten gallons of water and a whole bunch of coke
I hope it all goes well for you. Its a good idea to have it frozen so that they can go back and check for otehr things.
Posted by SunRa (Member # 3559) on :
hey, it's me SunRa! for some reason my BF couldnt figure out how to reply, but we want to thank you all sooo much for the advice...he called the labs today and took note of all your suggestions.thank you!! can't type much now, will update you asap. eeeeeeeek i'm nervous Posted by GiGi (Member # 259) on :
Best wishes to you, Jen. Will be thinking of you. I had five of these in my early years before Dr. K. and they were not painful at all. Keep in touch.
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