As i said on past post I have had many lyme symtoms and had a western blot with the 41 IgG band positive .
I have a neuro appointment on the 14th of april and I am so worried that they are going to tell me it is MS.
Which from what i read they more than likely will.
Can a dr. tell the difference between lyme and MS?
Posts: 36 | From south carolina | Registered: Mar 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I would say your average neurologist cannot. I'll tell you a story. I have a friend who has very bad Lyme disease and many brain lesions. In the area where she lives the law allows that you
can take two spinal tap fluid samples and send them to two different labs for analysis. One sample was sent to the place the facility she was in uses and the other was sent to a place her LLMD uses.
Given that she had the lesions and she was in a non lyme literate facility they were looking for MS. They did not believe in Lyme and told her Lyme could not be her problem or cause the lesions.
When the spinal fluid came back the facility she was in told her she had MS and was bi-polar.
The sample that her LLMD sent out came back positive for lyme. She knew she had lyme and
had been treating it for years but my point is had she not been lyme literate herself, she would have ended up with a MS dx.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:I am so worried that they are going to tell me it is MS.
It's a neurologist... he/she most likely will tell you it's MS. But that doesn't mean s/he's RIGHT or that you have to LISTEN to them and go by THAT particular diagnosis.
The majority of MS cases are lyme. As are many, many diseases actually lyme.
Please look into finding a lyme literate doctor as soon as possible.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
I do have an LLMD that can see me in july that i have found here in SC .
I am looking forward to that.
Posts: 36 | From south carolina | Registered: Mar 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Drop the neurologist and get to the LLMD. Call to be put on the list in case of cancellations.
In the meantime, you can study up on what you can do for yourself. Better yet, call that LLMD's office today and ask for a reading list and some suggestions for what you might do in the meantime.
You can search MANY threads here for "MS" and find good articles that will help.
See the "Newbie" threads by both Treepatrol and BettyG, too.
Best of luck.
Oh - if you do see that neuro, you will likely be advised to do a lumbar puncture. Search that term here, too, and you will see that is it not a good idea.
Steroids, in all forms, to are to be avoided. Again, you can search that term and find out why.
I'd post all this again but am worn out. I may check back later and see how you're doing, though.
posted
I was dxed with MS in dec of 07. I took daily injections for a year, only to watch my health decline. It was only through my own advocacy that I found out I do, indeed, have lyme.
I have many brain lesions and two on my spine. My LP was neg for lyme, but also neg for MS, and yet my "neuro" had no problem with the MS diagnosis.
My advice: see the neuro, but be prepared. DO NOT do the LP; they are not worth it. (I've had two, both resulted in nasty spinal headaches.)
Let the neuro order any and all MRI's. STAY AWAY from all steroids. And do as the above poster says, get on the waiting list for the LLMD. Maybe the neuro visit will provide you with reports/tests that you can take with you. God bless, if I can help in any way let me know.
Posts: 374 | From United States | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Excellent advice from Snailhead. I forgot to consider that some of the tests done now can speed along your LLMD appointment later. And, in case there are other things going on, the neurologist and certain tests (though not a LP) might be good.
Before you see the LLMD, be sure to have arranged for the actual MRI slides - NOT just the report - to go to the LLMD. Now, that may be on a computer disc. He will need to SEE it as some radiologists are not able to interpret results for lyme patients.
You will need to sign a special form a the place the MRI is done and have that LLMD's address, etc. with you. The MDs office should have nothing to do with this. It would go through the imaging office itself.
Be clear that you request the full visual for the LLMD but do not emphasize the LLMD part of this. If asked, this is simply another doctor whom you will be consulting.
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Keep in mind, MS is a term for "we have no clue what is wrong!" They slap a name to a set of symptoms and close the book on you, then send you off with some MS meds to make life somewhat tolerable.
How about they do their job and find the F#$%@&$ cause! I hate these people. You or anyone should not have to suffer. I wanted to slap my neurologist silly, I tell you.
Made me sick and he was supposed to be the best. Yea, the best joke he was. The NUMBER ONE THEORY for what causes auto-immune disease is an infection! Go figure! I even had mainstream doctors tell me this.
He then went on to say there is no way right now to figure out what infection you may have. Really? I live in Chester County, PA, or should I say LYME CENTRAL! Hello!?
These doctors have their heads so far up where the sun don't shine.
Sorry, rant over.
I hope you get what you need and see an LLMD! Please.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
i have lyme, western blot says so. along with sky high RMSF titers and LLMD dx of babs and bart.
My neruo (who i do love, he is lyme friendly and actually got me dx. lyme, was "aytypical MS" at first)..neuro trained some in NY so if familiar with lyme and how it mimics MS. wish I would have know- i went through the whole MS work up including spinal tap (which i thought i would die from, no exaggeration was laid up for over 3 wk flat in bed) anyhow- all my docs here thought it was a slam dunk she has MS with hx of lupus for yrs. do the testing just for confermations sake.
my neuro was stunned when ms testing was neg. and then tested for lyme "just in case" as he knows it can mimic other diseases. as far as he knew--- lyme was not in tx??? now, never was i asked if lived anywhere else; by any dr over the yrs. i did- military brat and when lived in MO played in woods every day!! lots of tick bites.
so, do your own homework, neruo would be good to get a full neuro work up for reflexes, abnormal findings in relation to CNS, peripheral and autonomic nervous system dysfunctions, MRI's are usefull. Lab testing to rule out other possibilites (other auto immune reactions). but personally i would AVOID spinal tap- let LLMD give his opinion on that.
good luck on both appointments. and on top note, my neuro was smart enought to go to western blot, avoided Elisa as he did know that the elisa test is very pooor and not accurate so yeah!! for him
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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posted
oh, and i have brought my neuro info on lyme as well now that i know, and have given him websites that are medical- like ILADS. he has been very receptive ,just does not want to be involved in the abt tx as he knows the liability as well.
as for my tx iwth him, i am a lyme induced MS case in his eyes and tx's as such. he has helped with the neuropathy, muscle pain-spams-twitching. and has referred me to have neuopsych testing. needt o schedule as may help in disability case
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
All here have great posts. I was dxd MS in 1988 found out lyme in 2003. I used the MS lable to my advantage for SSDI. I say I have Lyme induced MS for every new MD appt.
Docs say it "makes sense" since they know deep down inside, there must be a cause for our immune systems to "suddenly" begin to damage self.
Neuros just look cross-eyed since they only know what drug company studies have shown.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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