Recently I have had an MRI that showed lesions on my brain. I just had a lumbar puncture to test for MS and lyme disease.
Both came back negative. I never thought I had MS but I do have many symptoms of lyme. I did not receive a copy of my results yet.
In the past band 41 has always come up positive int the western blot. My question is what should I do next? THe neurologist wants my to have another MRI in January.
I would like to look more into lyme, but I do not know how to convince my doctor to do this. Maybe I should find a lyme specialist in this area?? If anyone has any suggestion as to how I should approach my doctor I would be very thankful.
At the moment the worst symptms are pain in my joint. (Keeps jumping from one to anothre right now its my Left knee) weak mucsel when standing still in legs and weak grip and blurred vision.
[ 23. November 2007, 01:51 PM: Message edited by: cat65 ]
Posted by cjnelson (Member # 12928) on :
Definitely seek out a LLMD (Lyme Literate Medical Dr) and have your Western Blot run through Igenex labs.
My understanding is that Igenex runs on more strains and they do not only go by CDC guidelines. CDC guidelines, by their own admittance, is NOT criteria for diagnosis but tracking. They will state if you are positive by CDC criteria and Igenex criteria.
Do avoid steroids until you know for sure as they can suppress the immune system making it much more difficult to recover if you end up being positive. This is more of a precaution until you are certain.
Have you ever been on an antibiotic and had an "odd" reaction? More curiousity in this question as it can be an indicator of Lyme too.
Hope thishelps...
Happy Thanksgiving!!!
Posted by timaca (Member # 6911) on :
Maybe have a doctor treat you with traditional treatment like abx for 6 months and then come back and do a MRI.
Make a complete list of all lyme related symptoms that you have had, no manner if rarely or daily for how ever long you think you have had lyme.
Hand him a copy & you sit with your copy facing him and ask him to please explain each and every one of these symptoms.
Do you have a very detailed list of lyme symptoms? I wonder if Tutu has a computer url of Dr C symptoms list? Sometimes that one sx list you post is too general and Dr C's list used to be more detailed?
Let's see if Tutu can get you a list?
Pam
Posted by djf2005 (Member # 11449) on :
def get to a llmd, get all the panels done, virals and tick borne illnesses as well.
keep in mind, all the tests for all these thingds are flawed, so your dr may go with a clinical dx.
do not just blindly accept a ms dx.
there is a ton of good info on here. you will be sure to make the right decisision.
pm me if i can be of further assistance.
humbly
derek
Posted by Michelle M (Member # 7200) on :
MANY of us on LymeNet were first misdiagnosed as having MS (me included). Many, too, have multiple brain lesions.
The good news is that if from lyme, these lesions CAN go away with proper treatment.
Your neurologist will most likely know very little about lyme.
You really MUST consult with a good LLMD (Lyme Literate Medical Doctor). Please post your city and state in the "Seeking a Doctor" section of this website and see if you can turn one up. Believe me, they don't all just automatically assume you have lyme -- they do work to rule out other disease processes first.
Band 41 by itself isn't absolutely indicative of lyme but it's likely that not the the best lab was used. An LLMD would likely use a lab that specializes in tickborne diseases such as IGeneX, as mentioned above. They test ALL bands, including a couple REALLY specific to lyme that other labs omit under the guise of "you could have had the lyme vaccine therefore we better not include those bands!!!
Also, neurologists rarely even THINK about co-infections, which can and do travel hand-in-hand with lyme and cause you much misery. Sadly, most neuro's have never even HEARD of them, though in some places up to 60% are co-infected with one or more of babesia, bartonella, etc... -- along with lyme.
Try and stall the neuro -- politely, of course!! -- and see if you can get an LLMD appointment. Usually discussing this with the neuro will only earn you scorn, no matter how right you may ultimately be, sad to say.
Good luck!!
Michelle
Posted by CaliforniaLyme (Member # 7136) on :
CAt*)!)*!! What Michelle said*)!)*!)!
We have a person in our local group who would have been diagnsoed MS but was diagnsod Lyme first who had 9 brain lesions heal- completely go away- on longterm Iv Rocepihn!!! We have had other people who have had lesser miracles*)!!!
We have had many peopple diagnosed MS come through our local group and all have been put on IV Rocephin and all have done well- literally- all have those 2 commonalities-!!! One was put on IV Rocephin 3 times for one month each but she is in full remission now*)!!!!!!!!!!!!!!
Definitely see an LLMD!!! We ended up getting so many MSers because a local family practice doctor REdiagnosed every single MS diagnosis he got with Lyme- and treated- and almost all were seronegative- blood negative- for Lyme!!! But they have done well-
Some people get full remission- some just get better- but heck, better is great*)!!!!!!!!!!!
We have had 2 MSers leave wheelchairs and one, that one I referred to above, leave behind one of those 3-pointed-bottom canes-!!!
So is Lyme tx worth it?? Heck yes*)!*)!
It could not be Lyme with you but as of my experience facilitating a support group in which I have seen all this, I am very suspicious that much of MS IS Lyme disease plain and simple...
Bestest wishes, Sarah
Posted by sixgoofykids (Member # 11141) on :
If you want to be properly checked out for Lyme, you need to see a specialist, an LLMD (Lyme literate MD). Post on seeking doctors and someone will send you a name of one.
Posted by cat65 (Member # 13890) on :
Thank you all so much for your help. By the way this whold thing started because one of my doctors checked my b12 level and it was 209. While searching for the reason the level went so low I ended up with an MRI.... Iam going to the other board to post for a doctor. Thanks again.
Posted by tailz (Member # 10014) on :
Personally, I would avoid getting any more MRIs.
I had at least one of these, a few CT scans, and even a SPECT scan, and I'm electrosensitive - the worst thing they could have been doing to me. Check my signature for more info.
Posted by timaca (Member # 6911) on :
cat~ Any B12 less than 400 is a problem, no matter what the reference range of the lab is.
See a medical doctor pronto...you should be on B12.
B12 could be causing all of your problems.
If you have ANY GI problems whatsoever, gas, bloating, etc...then also get tested for celiac disease.
You could have celiac disease (gluten intolerance) and this could be causing you to malabsorb B12, leading to your problems.
Timaca
Posted by bettyg (Member # 6147) on :
cat, you've gotten excellent advise from all.
yes, i sent her my newbie package with ALL SYMPTOMS in Fri, 23 Nov 2007 21:36it that tutu posts to newbies!
cat, thanks for breaking up your solid text too! i learned a lot about you now.
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