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    Old 09-13-2007, 04:02 PM   #1
    cindys601
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    Neuro Visit Lyme Vs Ms

    Saw the neuro for the 1st time. He read my labs from my pc and said "you tested positive for Lyme" I was comepletely shocked!! My pc said all was neg. The neuro says this raised a red flag and wants to repeat the lyme. He also said that he wants to do a nerve test but he doesn't think this is neurological. I left his office confused!!

    I called my pc when I got home and he explained the positive test came 1st, then the westrn blot was negative. He asked me how my appointment went with the neuro and I told him. His response was he does not believe I have Lyme and is leaning towards ms.

    He is such a wonderful man. I have been with him for so many years and when I go to him, its like visiting an old friend.

    He said "cindy, I wan't you to convince this dr that your not crazy. This is my advice so take it. Don't give up until you get the answers because we know something is wrong"

    I have heard so many people that say their drs think they're crazy so my next question was, how do I convince this neuro that I'm not crazy because I know drs do tend to concider this? He answered that crazy people go to the dr with complaints then finally they just give up. So dont give up. Go through all his tests, give him the chance, and as each test turns up negative, push the next step.

    So for all of you out there who are trying and don't seem to be getting anywhere, I guess you can believe your not nuts!! Cuz your still here looking for the answers!! Maybe this is a game the drs play to find out if we're really sick.

    Just an added note that i have an appointment with a local neuro but had a November appointment. He's supposed to be good but I jumped in with this guy cuz he could see me sooner. I told my pc and he agrees, that I'm keeping that door open and not cancelling that appointment unless I need to.

    Hope everone had a happy day!!~ Cindy

     
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    Old 09-13-2007, 04:14 PM   #2
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    Re: Neuro Visit Lyme Vs Ms

    You have a wonderful PC and he is absoloutly correct let this neuro run his test.

    Keep searching for the answers,don't ever give up on your health,you know how you feel.

     
    Old 09-13-2007, 04:27 PM   #3
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    Re: Neuro Visit Lyme Vs Ms

    Sounds like you have a good doctor. As to the Lyme Disease, a second work-up would be a good idea. Lyme disease needs to be treated as early as possible to alleviate longterm problems.

     
    Old 09-13-2007, 04:36 PM   #4
    cindys601
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    Re: Neuro Visit Lyme Vs Ms

    My sx have been there for about 13 years so I sure do not hope its lyme!!

     
    Old 09-13-2007, 06:04 PM   #5
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    Re: Neuro Visit Lyme Vs Ms

    Cindy - Lyme CANNOT be diagnosed from a western blot. They have found that western blots show BOTH false negatives and false positives...they are not accurate for Lyme. 100% accuracy can be gotten from either a spinal fluid sample, or from blood work sent to a major Lyme blood center. Ask about Igenex, in California...my doc (in New jersey) had mine sent there after I had 3 negatives from Western Blot...turns out that I am one of the lucky ones, who really is negative for Lyme...but theres no way of knowing, until you get the right tests done.
    I agree, dont cancel the other appt, keep it, and ask that neuro about Igenex, Lyme and why you are hearing what you are hearing...you might also check out the Lyme board here, on this healthboard site- theres alot of good info to be found.
    Good luck..
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    Old 09-13-2007, 07:22 PM   #6
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    Re: Neuro Visit Lyme Vs Ms

    Cindy, MSJayhawk is right -- it IS best to treat as soon as possible but I've personally read accounts from people who have had latent infections and treatment still does help. Lyme, like MS is mysterious and some think there's actually a potential connection -- or at least that it's possible that MS is also bacterial in nature (at least in some cases). Just so much we don't know.

    Lyme can be detected by WB and ELISA but both these tests are not regarded to be very reliable. IGeneX is the place that is recommended -- if you call they will send you a kit for free and if the doctor wants to repeat the test, I would certainly discuss it with the office beforehand to let them know that's your preference. That said, while IGeneX is regarded to be the most reliable, just be aware that there is still a problem in general with false positives and false negatives for Lyme. There is really good help on the Lyme board here if you want to check it out and there are even some people who were originally on this board but then went on to discover they had Lyme.

    Good luck and keep us posted!

    Last edited by Bearygood; 09-13-2007 at 07:22 PM.

     
    Old 09-14-2007, 08:00 AM   #7
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    Re: Neuro Visit Lyme Vs Ms

    Hi Cindy

    Bearygood gave you good advice.

    I Just wanted to chime in on the lyme dx too. I was dx with MS 8 years ago and every neuro (6+) I went to swore I didn't have lyme. Guess what I do have lyme and untreated it has caused me many neuro problems including difficulty walking. I was dx with lyme 2 years ago but have probably had it for many many years more than that.

    Igenex is the best place to get tested. Even the best tests are only about 60% accurate. False positives are rare and I know many people who never get a positive test result. Even the CDC says lyme is a clinical dx. Spinal taps for lyme are about 5% accurate. I have had that done twice (for MS) and because of potential side effects of that invasive procedure I would not recommend it for lyme.

    I suggest getting evaluated by a lyme literate MD. If you go on the lyme board you can make a new thread aking for LLMDs in your area. You may have to travel depending where you live. LLMDs are far and few between.

    I also suggest researching lyme as it is a very tricky bacteria, can evade the immune system by changing to cyst form(thats why your body doesn't produce antibodies) and is difficult to erradicate. If you have any inkling you may have lyme you should check it out thoroughly. The sx are very similar to MS and many Drs do believe there is a connection.

    I know people who are in wheelchairs because their lyme went untreated. I am not trying to scare you but lyme is serious stuff and I know that first hand. I wish I did not take my neuros word for it. They don't know everything I have learned.

    I wish you the best of luck and keep us posted.

     
    Old 09-14-2007, 10:51 AM   #8
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    Re: Neuro Visit Lyme Vs Ms

    njgirl, so you're on LDN and antibiotics?

     
    Old 09-14-2007, 12:59 PM   #9
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    Re: Neuro Visit Lyme Vs Ms

    Quote:
    Originally Posted by MSNik View Post
    Cindy - Lyme CANNOT be diagnosed from a western blot. They have found that western blots show BOTH false negatives and false positives...they are not accurate for Lyme. 100% accuracy can be gotten from either a spinal fluid sample, or from blood work sent to a major Lyme blood center.
    I'm not sure what makes you say that 100% accuracy comes from a spinal? It has been shown that people with Lyme often show the same thing in their spinal fluid that somebody diagnosed with MS show. Just like how lesions on an MRI are not 100%, because lesions are seen in both diseases.

    I had my Lyme test done at one lab, and all was negative. Then I had the same tests run through Igenex (including a Western Blot), and I was CDC positive. In any case, the CDC requires a clinical diagnosis for Lyme, which is basically what you get with MS, is it not? Spinals are becoming less and less important these days. Dr's are not relying on them as much as they used to. And considering lesions pop up with various health issues, I would say they're not 100% either.

     
    Old 09-14-2007, 02:49 PM   #10
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    Re: Neuro Visit Lyme Vs Ms

    I wanted to thank you all for your advice.

    But now I'm even more perplexed!! The neuro just called me and said that He was wrong about the lyme and the tests are negative. He wants me to come in next week to discuss things again. I think that when he saw a positive initial lyme, he had made up his mind that was the causes of my sx.

    I will be seeing him again on thursday. I plan on asking him if I order the test kit, if he'll repeat the lyme so we can be sure!!

    Also, I asked him about the possibility of ms and he said absolutely not. I never brought this up on my 1st appointment because I figured I'd sit back and see what he submised of my sx. But my pc feels this could be a possibility.

    I have so many symptoms consistant with ms such as tingling, burning sensations, weakness in legs, sensitivity to heat, confusion, and the list goes on. My newest sx is a burning, pain and numbness in my face and ear lobes. very annoying, I must say. And today at the store, I got inside and fealt my legs weaking and thought they were going to callapse on me before I made it out. I made it to my car and just fealt this overwhelming saddness that what is happening is just not me anymore.

    With all this, it seems as though both lyme and ms should be ruled out. What would make him say that this can not be neurological?

    Also, can anyonyone offer advice on handling my appointment on Thursday? I have learned alot here from all of you and know I shouldn't push too hard or seem to be a no it all but I know its important to seek a proper dx. Any suggestions? ~ Cindy

     
    Old 09-14-2007, 04:42 PM   #11
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    Re: Neuro Visit Lyme Vs Ms

    Cindy

    Sounds like your neuro is not so sure about the results.

    My suggestion is to seek out a LLMD and be evaluated. Most Drs are not up to date on lyme and I would not take any Dr's "This is not Lyme" other than a LLMD. The tests are flawed, even the best ones at Igenex.

    My neuro who is supposed to be lyme literate saiid my results were negative, but when I saw a LLMD she said this is definately positive CDC positive in fact. Two Drs looking at the same test results and two different dxs? I spoke to the President of Igenex (as the tiebreaker) and he said most definately positive. He gave me a detailed explanation of why it was positive. What I am saying is 1) tests are not near 100% accurate and 2) I would rely only on a LLMD to interpret the results and do an evaluation.

    Investigate this thoroughly as lyme can be as serious as MS if left untreated. The good thing is lyme is treatable.

    Bearygood - yes I am on ldn and antibiotics. ldn is being used by many drs for many different things. I go to a alternative Dr practice in addition to my LLMD and they are rxing ldn for lyme patients. Hopefully I am covering all bases (MS and lyme) with the ldn and abx.

    Cindy let us know how your appoint goes on Thursday.

     
    Old 09-19-2007, 03:20 PM   #12
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    Re: Neuro Visit Lyme Vs Ms

    I saw the neurologist today

    This visit was even more frustrating!! He asked me what my syptoms were that were troublesome and I said the tingling, electricity sensations in my body, the fatigue and my lack of ability to keep up in my daily activities. I was a very active, energenic person and this has just knocked me down so I just get through my work day (and I just barely do that).

    He said that my symptoms don't seem neurological to him. I disagree. Isn't all the tingling and burning I feel coming from my nerves? Maybe thats a silly thought but...

    The next thing he asked is how I fealt about sitting back and just seeing where this all goes for a while. I told him I was absolutely not willing to do that. I have sat back for over a decade and look where it got me!! I also told him that I have a very long history with my GP and his advice is not to give up until I find an answer. That my dr believes there is a problem and knows I'm not a person who seeks medical advice until its unbareable. I fealt he was dismissing my sx because he was perplexed. I still don't understand why he hasn't ordered an MRI to rule out other things?

    He has ordered a nerve conduction test for october 4th and decided he would put me on tetracycline for 10 days to "see what happens". (250 mg 4X daily) I will be off them for about 5 days before I see him again and he's wanting to find out if my symptoms will improve, then return when I stop them. I think he feels as though this will be an indication of the lyme dx. Any input on that?

    I haven't given up on all your advice about a LLMD but I have a home for mentally ill men and it's only me to care for them. I can only go to the DR when my hubby has a day off from his job which is 1 day a week, so that he can care for the men. So this definately is slowing down the process.

    Also, I had asked him about ordering a Lyme test kit and having him use this because it's more accurate. He shot that down, saying people can sell you anything, and rolled his eyes!!

    So I guess its sit and wait...

    Thanks for letting me vent!!

    Cindy

     
    Old 09-19-2007, 03:30 PM   #13
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    Re: Neuro Visit Lyme Vs Ms

    Cindy, you poor baby. Being dismissed like that is NOT what you needed to hear..
    About the Lyme test, why cant you order it from Igenex and have your PCP, whom you trust talk to you about it? I would try that route....as for the Neuro, I agree with you, everything points towards neurological- but theres no way to tell for sure..the nerve conduction tests might help your case. They will tell something....
    I would definately be in the market for another Neuro. Much as I know time is of the essence, and apparently tough to come by for you- I would definately try to find another one...even if you have to wait for the "first or last" appointment of the day in order to fit it in....it sounds like it might be important to get another opnion.

    Tetracycline is not going to do much for you....it wont hurt you. Studies have actually shown that it MIGHT help if this is MS related...they used to use Tetracycline to help people thru relapses..so there is a possiblity that you might feel better while on it...the low dosage that he prescribed wont touch Lyme disease, but again, it might make your sytmoms feel beter while you are on it...did he tell you to avoid the sun and being outdoors while on Tetracycline? And, if you are prone to yeast infections from anti-biotics this will give you one..be prepared to ask your Gyn for some Diflucan or another anti-yeast treatment...

    You can vent all your want. You earned that right! Im sorry things didnt go better for you..
    Hugs to you..
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    Old 09-19-2007, 05:21 PM   #14
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    Re: Neuro Visit Lyme Vs Ms

    Cindy, so sorry to hear this and I think it's safe to say that to us, your sx sure DO sound like they could be neurological!

    I also don't get what a short term dose of antibiotics would do for you, unless he thinks you have some sort of passing infection.

    What is this, the night of the bad doctors on this message board, LOL?

    I'm glad you have a PCP you like and I agree with Nikki -- Lyme test or not, I would certainly be making my next call to him, and soon. At least he will listen to you and based on knowing your situation, be able to offer you some good guidance.

     
    Old 09-19-2007, 07:06 PM   #15
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    Re: Neuro Visit Lyme Vs Ms

    Thank you both, for making me feel "not so crazy!!"

    This guy has my head spinning with no direction. I know I am perplexed and need help with whats going on but he seems doubly confused!!

    His best words of wisdom today was that If I want a dr to help me, then I need to help the Dr. He said it works both way. I am a smoker and he was refering to this.

    I know the risks and know I should quit and blah blah blah... But, I also know that smoking isn't the cause of my sx. He basically was telling me, if you want my help, you have to quit smoking. I fealt so manipulated by this guy.

    Quiting smoking at this point will only add to the stress factor. I have worked so hard not to let stressful situations bother me. I have heard all of you post this over and over. I find myself telling my family not to stress over the small things in life and follow your advice. I know smoking is unhealthy but whatever my body is going through is unhealthy too. My feelings, 1 step at a time.

    I almost want to not continue with this guy But my pc's words keep ringing in my head. Prove to him your not crazy, do all the tests he recommends and when he comes up with nothing, wait for the next test. Boy, do I now understand why so many of you become frustrated in this process.

    I have an appointment with another neuro on Nov. 4th which my dr has told me to keep in case I don't get anywhere with this guy. I may need this!!

    Can a regular pcp order an MRI or does a neuro have to order that? My pc said only a neuro is qualified to dx ms. But I'm wondering if he could suggest an MRI?

    I thank you all for being here!!

    Cindy

     
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