Went to see a new lyme neuro yesterday, she ordered a brain spec and a spinal tap which I will not agree to do. Why would she be ordering a spinal tap when I have a positive lyme pcr and brain lessions. She said she thinks I should be on iv rocephin but did not order it yet. Is she looking for more proof for the insurance companies? I am very upset, I do not want to have a spinal tap, don't see what it is going to show, she did say I have neuro lyme, no kidding, I have had it for six years. Please help. Diana
Posted by merrygirl (Member # 12041) on :
Spinal taps are no fun.
If you are on abx there is little chance of finding lyme there. Maybe she is trying to rule out other things.
Unless i am dying i will never do a spinal tap again.
You have pos pcr, doesnt get much clearer than that
Posted by lpkayak (Member # 5230) on :
bravo for you for refusing
she needs to explain to you why she wants it
"new lyme neuro" makes me nervous
where will you get the brain spec...do they do them in boston now? when i got mine only columbia was recommended
Posted by scorpiogirl (Member # 31907) on :
Hmmm... if you already have a positive Lyme pcr test and brain lesions then why is she ordering those two tests unless she's NOT convinced you have Lyme and is looking for malignancy. The reason I said that is because that was exactly what my Neurologist did to me! In fact, none of them believed me when I told them I might have Lyme Disease. One doctor went as far as telling me that "I know you WANT it to be Lyme but we have to rule out all the other bad stuff".
Anyway, my Brain Spec and Spinal tap didn't show them anything interesting. In fact my spinal fluids were "pristine". If I have to do it all over again I would never consent to either test. But that's just me.
Posted by erikjh1972 (Member # 20964) on :
find a new Dr. and fast.
Posted by dian (Member # 14335) on :
what do you mean, rule out malignancy? She has a positive pcr lyme from Igenex and she has brain lessions. I think because this crazy doctor did all quest lab testing and Nothing came out postive, she has to prove to the insurnace company why she would like her on iv meds. She did say she has neuro lyme and should be on iv meds but doctors would look at her recent quest lab and say she is negative to lyme now. No kidding, she has never came out positive from quest, only from igenex. I think it is a very invasive testing and we will not be doing it. She is the neuro doctor up in Harvard, Mass., that is all I can say. We are going back to her regular llmd and I'm insisting on putting her on tindamax, I heard it is a really good drug for cns lyme. Anyone have any luck with it. Can you tell me what drug is good for central nervous lyme? She was on tetra, doxy, biaxin/plaquinal, that's all for lyme. I am so mad at these doctors, everything is insurance companies these days.
Posted by merrygirl (Member # 12041) on :
Thats why in my experience there is no real value restesting over and over especially during treatment, and especially with quest. I say this because if you do test neg, then that can be used against you
Sorry kinda ranting... but she has pos pcr there is no morexx,x, ,, acurate testing than that, the only thing better would be to see spirochetes falling out of your eyes..good luck
Posted by Beagle (Member # 29698) on :
Wouldn't a Bone Scan also rule out malignancy?
Anyone know? I know that a spinal tap is next on the agenda for me, but I don't think I would agree to one either.
Ipkayak, a few places in Boston do Brain Spects. I got mine done at Brigham and Women's Hospital.
Posted by scorpiogirl (Member # 31907) on :
Well believe it or not many Doctors and Hospitals do not acknowledged an Igenix positive test! Even AFTER I got an Igenix positive they still INSISTED that just b/c I have Lyme does not mean I don't have brain tumors!! What they wanted was to do a brain biopsy and take samples out of all 3 lesions! At that point I freaked and checked myself out.
I was at a major hospital for 6 days and saw over 20 specialists and NO ONE would listen to me about the possibility of Lyme. So $250,000 later I got no answers!
In those 6 days I had these tests done.
Spinal Tap � Perfectly Normal Lupus � Negative Rheumatoid Arthritis � Negative MS- Negative ALS - Negative HIV � Negative Syphilis � Negative TB- Negative Hepatitis � Negative West Niles � Negative Lyme disease � Negative (so they said) 3rd MRI � 3 lesions Brain Spect Scan � Normal Echocardiogram � Normal Transesophageal echocardiogram� Normal CT-Scan of the abdominal- Normal Ultrasound of my uterus - to rule out the "bulbous" mass (I TOLD them I have a tipped uterus and I just had a uterine biopsy 2 months prior I DID NOT have cancer!).
That was a year ago. When I recently switched my LLMD I was asked to have all my medical records forwarded to her so she can see my FULL medical history. Well what do you know... everything was there but my Lyme test done at the hospital was missing!! Yet the doctor's notes said my test was "Slightly positive". We have been trying to tracking this test down but no one at medical record seems to know where it is!! How weird is that??
Posted by lpkayak (Member # 5230) on :
just fyi...in more than one case these docs have dx brain cancer...done surgery---sometimes disabling patient...and then said...oh sorry...it wasn't cancer afterall
do you remember the woman whose surgery was shown all over...they went in anc found a very large worm???
i know of two ppl who were told it was most probably brain cancer but it wasnt
one became disabled at 30 a mother of two and teacher
the other died...an older man
Posted by lpkayak (Member # 5230) on :
Dian...who is the Neurologist? There is only one Lyme Literate Neuro in Mass (Dr. R). I hope you are seeing her. I doubt she would order a spinal tap.
Do the SPECT, but not the tap.
Posted by dian (Member # 14335) on :
Actually bcb, it is Dr. R in Harvard. She is the one who ordered the spinal tap and no, we are not doing it. I do not believe she is looking for anything other than lyme and I doubt if it will show up either. A positive pcr is all we need to prove out lyme and we also had two positive western blots from igenex on lyme and bart. We will not be going back to her anytime soon. thanks for posting to everyone.
Posted by jbaer (Member # 31938) on :
Not that I know your doctor, but it might be that she needs to do this in order for your insurance company to pay for treatment. You and I both know its rediculous, but that is what insurance companies make you do. Get the policy and procedures for the code for lyme treatment from your insurance company and find out with what your dealing with first. If it is not needed, your doctor sucks:} If you have to have it, load up on abx and detox meds so the lyme comes out into your system so the damn thing shows something bc its gonna suck!
Posted by BackinStOlaf (Member # 23725) on :
A spinal tap is not likely to show anything so it is more of a reason for them to say you don't have lyme.
Posted by amk33 (Member # 13206) on :
My llmd did a spinal tap to rule out MS. (looking for oligiclonal bands) She said that finfing evidence of lyme in spinal fluid is like trying to find a needle in a haystack. I would never do one again...got a horrible heafache for days!
Posted by racer (Member # 30438) on :
I did the spinal tap (while having Postive Lyme PCR and lesions) - it was pretty easy actually. Dr. Foley at Nashoba did the LP and he did a great job. I believe it was to rule out MS and other issues.
I have the same LLMD - and believe that she is very thorough. You have to get all your questions answered right then and there though, or it will be tough to get answers, since she is so busy.
I just got my PICC in this week, finally.
Posted by nybasketball212 (Member # 28309) on :
Wow definitely seems like you should be getting a spinal tap. Especially with lesions, you need to look out for MS. Everyone on here will tell you to ignore everything and blame everything on lyme. Very dangerous.
Tons of things are shown by a spinal tap. Very safe, quick procedure. Scary that you haven't had one done yet.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by merrygirl: Thats why in my experience there is no real value restesting over and over especially during treatment, and especially with quest. I say this because if you do test neg, then that can be used against you
Sorry kinda ranting... but she has pos pcr there is no morexx,x, ,, acurate testing than that, the only thing better would be to see spirochetes falling out of your eyes..good luck
- how many times can I say "amen" in one day?
Posted by tickled1 (Member # 14257) on :
I had 10 oligoclonal bands in 2008. Was told MS or Lyme. Neuro wanted to see how I responded to Lyme treatment. I have responded somewhat but have plateaued. I wonder what the results would be if I had another spinal tap but I will never go through that again. I wonder if it would change anything. I haven't consulted with my neuro in a couple of years.....
Posted by jeninma (Member # 31544) on :
To anyone whose seen Dr. R in Harvard... How do you get an appointment? I have called a few times (left messages) and my son's LLMD (pediatrician) even called on our behalf. It's important that we see her ASAP. Thanks in advance for any tips
Posted by Lymetoo (Member # 743) on :
up for dian
jeninma... Did you read what dian wrote about this doctor?