posted
Hi, I have tested positive for both the IgG and IgM and now my neuro wants to do a spinal tap before deciding what course of action to take.
I have 3 lesions on my brain from 2 MRI's one in the central part so MS was suspected at first and then ruled out.
I have had testing done for Lupus due to bizarre neurological things like double vision in one eye, numbness, etc. During those tests, he also tested for IgG and IgM, both of which are positive. The lupus stuff was negative.
I had meningiencephalitis from Lyme back in '94 so I know I have had it.
But now he wants to do a spinal tap to confirm Lyme? Don't the IgG and IgM already do that?
Can't I assume that my problems are probably chronic Lyme and don't I already know I have it in my spinal and brain since I had the meningitis and encephalitis?
Does anyone have advice on what I should do?
Could those IgG and IgM levels be testing positive after all these years and this NOT be a recurrence?
I'm stressed out and don't know what to do, any help is appreciated.
ps-any good dr's in the Cincinnati area?
Nancy
Posts: 11 | From Cincinnati, OH | Registered: Jan 2006
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I am new to the board but I am sure others will be along to help you.
I have been down the spinal tap road before..actually 4 times. Everything I have read and my LLMD told me indicates that spinal taps aren't always accurate anyway.
Just my opinion..if I had a positive Igg and Igm I would go running in the other direction in a spinal tap was mentioned. Most neuros are not specially trained in lyme anyway..is yours? Does he want to do the spinal tap to rule in lyme or to rule out MS?
I am not to familiar with the boards but if you goto the doctor thread on the main foruam board and ask for a doctor in your area someone will private message you.
Good luck to you and I hope you get into an LLMD soon. I don't mean to scare you but spinal taps aren't that easy to go through. Have you ever had one before?
posted
YES, I've had a spinal tap before and it was horrid. So, do you agree that positive IgG and IgM is enough at this point and it's just a matter of getting some treatment started? Thanks for your input. Nancy
Posts: 11 | From Cincinnati, OH | Registered: Jan 2006
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posted
That would be good enough evidence for me. Lab testing is so unreliable. There are many people being treated with negative tests, including myself.
Were you treated by a LLMD before? Most doctors don't know much about treating this disease. My first round of abx was from my primary doctor. I had no idea what herxing was. I thought I was going to die. I found out about herxing on the web. I mentioned it to my primary and he had never heard of it either. Do you know what they call the guy who graduated last in his class of medical school??? Doctor !!!!!!
Bottome line is I would find a LLMD and start treatment.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Nancy,
Let's see..you had lyme BEFORE. Now, you're having neuro problems including vision problems and numbness. You have brain lesions. MS has been "ruled out."
And this doc even KNOWS you have a positive IgG and IgM?? Yikes!
Generally speaking, IgM represents CURRENT, ONGOING infection. Meaning, yeah, bacteria are having a blast in you!
The success rate of a spinal tap in locating borrelia burgdorferia is something pitiful, like around 20% or so. That's a pathetic reason to do one. In fact, I can't think of much reason to do one, except your doctor probably is thinking old school and believes that's the "final analysis" on whether you have lyme. In fact, it's 'zackly the opposite.
From Dr. Burrascano's Guidelines:
"Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb can be detected in the CSF in just 20% of patients with late disease. Therefore, spinal taps are only performed on patients with pronounced neurological manifestations, if they are seronegative, or are still significantly symptomatic after completion of treatment."
Run away!!
All you need to do NOW is find an LLMD. And test for co-infections too. And get started!
(You can send a nice little progress note to your neuro duck!)
Lots of us have brain lesions on here; relatively common with lyme and might even go away with treatment.
Keep us posted!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Tell the neuro that you will have a spinal when:
Pigs fly...
or when
All men remember to put down the toilet seat...
or when
Fonzie doesn't want to kiss a girl...
or when
The NY Times prints an accurate article about Lyme...
or when
The sky turns green and the grass is blue....
or when
HE gets one... and pays for yours too!
This is YOUR body.. YOUR money.. YOUR risk.. and YOUR health. You DO have a say in what is done.
If he can't see the handwriting on the wall.. tell him to get off the porch until he is fit to hunt with the big dogs!
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Totally unnecessary. Find another doc who knows what they're doing!
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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Carol B
Unregistered
posted
My Primary Duck threatened a spinal tap and i said no way hosay. He didn't know squat about lyme. Fortunately I found an LLMD-and she's never even mentioned having one done. I do have some neuro lyme symptoms, still no need for a spinal though. Even my neuro said okay no spinal necessary.
Doc's may be authority figures, but I am learning that I can be an authority figure,too-especially when it comes to decisions about my body.
posted
Risk isn't worth the reward IMO. Spinal Taps can mess you up. A friend of mines back has never been the same since she had a spinal tap. She has bad lower back pain she never had before the spinal tap.
I have read that the spinal tap only picks up Lyme in the CNS fluid 10% of the time. Besides you already have positive tests. Sounds like the doctor either doesn't believe the lyme antibody tests or is trying to rule out other possible diagnosises. I would find an LLMD.
Posts: 649 | From United States | Registered: Dec 2003
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I would not take the test but if you need to keep working with this doctor (IMHO there are valid reasons for working with a doctor who is not lyme literate) then I'd try to educate him on the thinking of the experts (LLMD's). If you don't care about bringing this doctor along then ditch him and find someone else.
If you do care to keep him and you think he might be open enough to actually learn the truth about lyme then I'd ask him some questions and educate him on the statistics.
Some questions I'd ask: What will he do/think regarding your lyme diagnosis and treatment if the test is positive/negative?
If you refuse to take the test, how will that change things in his view?
In other words, do you need a positive spinal tap in order for him to believe that you have lyme or for him to stay involved?
I'd have him discuss this with my LLMD if possible. If not possible (it seems to me that many LLMD's are not open to working with other doctor's) then I'd talk to my LLMD and get his/her explanation for why a spinal tap is not necessary and present that to my doctor.
Then I'd take Dr. B's info to him/her, highlighting the spinal tap info. I'd look for any ILAD's info that I could find about it. Also, I'd look for any other studies that help to clarify the issue. In addition, I'd find something that discusses the risks. Then, I'd outline the risks/costs VS benefits and present my info.
Basically, even if you had a negative, it would not change anything regarding what an LLMD would do for treatment but you should get that opinion directly from your LLMD.
When I had Equiv ELISA and an IgeneX positive IgG, my fibromyalgia doctor said that I would need a spinal tap for him to treat or I could go to a specialist in lyme. He is following my case with my LLMD and I hope to educate him so that he can help the many fibro patients that he treats, some of which undoubtedly have lyme.
My fibro doctor has saved me thousands of dollars by requesting tests for me that would not be covered under my LLMD who has opted out of medicare.
Your doctor may be trying to cover himself because I think that some doctor's think that you cannot have lyme without a positive spinal tap.
If you think he can be educated, I'd try that. The more mainstream doctor's hear about lyme and the alternative evididence, the better.
I fully understand that some doctor's are not open no matter what the evidence states. Other's are too afraid to buck the system. In addition, trying to bring someone along can be very time consuming and tiring BUT if you can, please do. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I would not do the spinal tap. I had positive western blot test for lyme but negative in the spinal fluid. It is not worth the stress and pain. Just my opinon. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10219 | From Illinois | Registered: Aug 2004
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posted
Thank you all for your help. I have requested info. for an LLMD in my area to no avail so I think I'm going to have to go the 'education' route with the neuro.
My husband is a professor so we don't have the funds to go out on our own here, insurance is a must, unfortunately, so I can't really alienate the neuro since they are the first person to even listen to me and all my wierd symptoms without making me feel crazy in the first place.
I'll go the rational, would treatment change with spinal results, etc, route and I'll keep you posted. I really am grateful to have found this site. ~Nancy
Posts: 11 | From Cincinnati, OH | Registered: Jan 2006
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Re: finding a doctor
You are just a few hours from Pittsburgh. You may want to try finding support groups there who may be able to recommend a dr.
Check support groups on the upper left hand corner of this screen.
Also, you may want to contact the Pa. Lyme group: lymepa.org
Wish you success! N.
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
I would first ask him why he feels that is needed. He may be trying to rule out other possibilities that he feels should be examined prior to start of Lyme treatment. There are MANY MANY neurological infections besides lyme. In fact a subclinical lyme infection CAN AND WILL make other infections more serious. Infections that may not cause symtoms otherwise.
He may also feel that the IgG positive is indicative of PAST lyme infection. You did not mention how the positive was defined, was a CDC positive a Igenex positive or was it a "lymenet positive". Many people on here know of only one thing, that is LYME... This is understandable as it is often quite an ordeal to get a proper diagnosis and treatment, regardless, it is a supreme dis-service to other sick people to say run away from their current Dr. without knowing all the details of the case, details which can ONLY be obtained through detailed case review, something that is always lacking on lymenet.
If the current Dr exhausts all other diagnosis and will not consider Lyme nor a trial treatment as a last recourse, then you should look at other Dr's but a Dr, still on the hunt for the problem is doing his job, a job that is often very difficult and possibly dangerous given the litigious environment in this country.
As far as your past lyme infection, with the past history, I would strongly suggest that you also consider the posibility of a co-infection, either tick bourne or otherwise, the acute menegial problems you mentioned would be atypical for lyme alone and back in 93, co-infections were not as well understood (not that they are now either).
If the Dr wants to do the LP to confirm lyme, then he is working using the classical methods which simply state that if it is a CNS infection then there should be something in the CSF, low glucose, odd protiens, free floating organisms etc.... If this is the case then the classical way to deal with this is to ask if the risk and pain of a LP is really needed given the fact that the IgM is positive. In classical terms, IgM is a clear sign of active early infection (or re-infection in this case). If he is trying to cover his butt on starting IV for neuro lyme, then a positive IgM is a pretty hard to refute, especially if IgG is also positive.
In trying to discuss with him the likelyhood of neuro lyme, DO NOT use stuff from the internet PERIOD. A better choice is to use published guidelines for somebody. If you read those guidelines (even from IDSA or CDC) they leave the posibility open for persistent neuro lyme and even the father of lyme disease himself (Steere)clearly states that this occurs in a chronic form, more specifically chronic neurolgical lyme. If you need the reference I can provide you with the citation.
There is a lot of controversy on the ability to detect lyme in the CSF, perhaps it is more easily detected in early stages but in late stages it is somewhat less likely. In fact there are publications by Donta in which he feels that the bacterium never actually crosses into the CSF but instead only sits in the out lining of the small blood vessels that are in the brain, these become inflamed, reduce the diameter and cut of blood supply. I think that lyme is more complicaed than this but I also feel that this is a big part of the problem.
Have you done a SPECT study? This might be more useful than a LP as it can visualize the blood flow patterns in the brain. If there are flow deficits then you have two options (not including vein obstruction which would have been found by now... at least one would hope)). Option 1 is some sort of infection, option 2 is some sort of auto inflamatory disease. Unfortunately the cause of these problems can be many and it may be impossible to find the cause. This being said, given the past lyme infection and given the known possibility of a reoccurance of Lyme and given the the past lyme was confirmed as having a neurological focus then the most prudent route would be to put Lyme high on the list of possibilites but still consider some of the "more common" causes first. This ultimately means trying a broad spectrum anitbiotic that has a good brain penetration ability to see what happens... (ceftriaxone is typically used for this).
I can in no way second guess your Dr, nor can I give medical advice but If you have not considered the points that I have written above, perhaps you should prepare yourself with a bit a background information encompasing these points so you can discuss it with hime on your next visit.
I hope this helps. Feel free to PM me if you would like more info on the above references.
Posts: 1184 | From north america | Registered: Feb 2003
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
refuse. stay away from neuros. worsst test i ever had...it was pos for lyme but i was still refused iv. no need of it. get a reall llmd.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Sounds like this doc is trying his best to rule Lyme OUT. He has enough to go on if he knows at all what he is doing. Chances are he does not believe in chronic Lyme. You have a clear history of Lyme. These tick-borne diseases can go into remission for long periods of time.
Get to a LLMD. A LLMD will treat you with the info already available. No need to put yourself through the trauma of a spinal tap. They are not always accurate anyway.
Posts: 2276 | From NC | Registered: Oct 2000
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
The LLMD I am currently seeing wants me to have a spinal tap. Her rationale is that if LD shows up it will mean IV treatment.
She actually compared it to an epidural?!
I think not.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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