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» LymeNet Flash » Questions and Discussion » Medical Questions » HELP-On ABSx 2+yrs; pos. for Lyme, Now Doc. wants MRI for MS? Opinons...

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Author Topic: HELP-On ABSx 2+yrs; pos. for Lyme, Now Doc. wants MRI for MS? Opinons...
fiddler
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Hi all- seems to be a popular topic these days...this MS and Lyme stuff.

I tested Elisa positive and IgG positive over two years ago for Lyme (Through Quest)-had 'typical' Lyme symptoms at that time.

I have been on a plethora of orals since then. Yes, I have herxed at times (definite Herxs)- in between those times I have mostly been a in a lot of symetrical nerve pain. Currently going to the LLMD J. Clinic. I started seeing him last year. At that time Dr.J did an exam, and said I had "severe Neuroborrialis" (However you spell it..).

OK, so last week I went to see my LNP to get my referral to J. clinic updated (have to do that yearly). And.. she says "Well, did you ever get that brain MRI to check for MS" - I said "No" because Dr.J said it was not necessary. (In fact what Dr.J actually said was "You don't have MS. If you get an MRI it might show irregularities. If that will upset you, don't get it"- at which point I decided not to get it).

Sooo...My LNP (who is not LL- but doesn't think I am crazy..at least not that she has said...) said "Well, I want you to get a brain MRI before you get this referral updated".

In the meantime, I have been having a lot of MS sypmtoms (which I have had in the past, had gone away some, but now back with a vengeance)-such as:

Tingeling in lower legs
Weakness on right side
Numbness/poor reflexes on right side
Nerve pain

So...should I persue this MS crap given that after 2+ years on ABX's I am perhaps not much better than to begin with?

Could Lyme have become MS?

How can I go about finding a LL neurologist? I don't want just anyone reading that MRI? Can one really tell the difference between a Lyme MRI and a MS MRI?

I AM GETTING REALLY SCARED.

Help in Maryland...

-Sarah

ps- I went to those MS symptom charts- I have many of the symptoms...but then again I also have many Lyme symptoms....

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[This message has been edited by fiddler (edited 12 June 2005).]


Posts: 58 | From Leonardtown, Md, usa | Registered: May 2003  |  IP: Logged | Report this post to a Moderator
brainless
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With a nonLLMD, that MRI could cause trouble.

There's a new LLMD, neurologist, in CT. Do you want to travel? Email me if you want his name.

[email protected]


Posts: 210 | From lalaland | Registered: Jan 2005  |  IP: Logged | Report this post to a Moderator
Melanie Reber
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Hi Sarah,

I wanted to start off with a few MS misdiagnosis links for you to read through.

Lyme and MS: http://www.geocities.com/lymeart3/ms-index.html http://flash.lymenet.org/ubb/Forum1/HTML/012144.html http://flash.lymenet.org/ubb/Forum1/HTML/012549.html http://flash.lymenet.org/ubb/Forum1/HTML/012584.html

It has been awhile since I have checked these, but hopefully, they will still be active.

I suppose my first question would be for your LPN...how will she be able to distinguish LD spots from MS spots? Is she up to date on what LD MRIs look like? Perhaps, you can print some info for her to get her up to speed so she can understand your dilemma.

I understand that you want someone who knows what they are doing to do the MRI, but these questions will just help your doc to think of this in a different way.

My next thought would be to have doc J do a phone consult with your LPN to try to explain his reasoning behind his advice. He does consults with my local doc here, and I have found him to be very good at working with my doc to come up with solutions for me.

I think it is important to have all of your healthcare providers on the same page, and when we try to get in the middle, there usually is a problem.

Now, about your symptoms...I wouldn't dare try to say that you ``don't'' have MS...but what you are experiencing sounds very similar to what I have felt most of the time through my first year of treatment. My first tentative diagnosis was MS, and MS was also suspected years later by a neuro until he ran some more testing on me. So, MS seems to be a common diagnosis when docs really aren't too sure what is up.

Think of it this way...
You get the MRI...it shows spots...you are diagnosed with LD and MS...soooo, what is the treatment now? MS has no cure at the moment, but LD certainly can be managed with the proper treatment and time.

If it were me, I would go for the thing that at least can be fixed, and let the other ``possible'' thing take a back seat while I wait and see.

I understand your frustration about being on meds for 2 years, and not seeing improvement. It most probably feels like you HAVE waited long enough. Have co-infections been addressed? How long were you infected before beginning treatment? Are you following all of the other recommendations on diet and supplements?

Just trying to help think of some options for you.
Melanie

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C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]


Posts: 7052 | From Colorado | Registered: Mar 2003  |  IP: Logged | Report this post to a Moderator
fiddler
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Thanks for your replys.

Melanie-

Yes, I have tested 3 times negative to babesia & erlich. at Ignex (including fish test for babs)- also recently tested negs for those two, but high titer for Lyme at Bowen (know they are controversial, but they gave me essentially the same results Ignex did two years ago...).

I am guessing that my Nurse Practicioner here is probably clueless about co-infection stuff.

I didn't think about having the J. Clinic possibly call her. That is a good idea.

I may look into MRI with someone who is LL- maybe that would help? I guess my docs. here got me worried that perhaps I was being blind in just assuming it is all Lyme (which I pray it is...).

Even in Dr.B's guidelines, though, I see that after a few years into treatment, if the patient is not responding too well...other things should be addressed.

I believe 4 neg. tests on babs & erlich. without having any specific symptoms for them...leads me to think I may not be co-infected. I was never tested for Bartonella, though. Again, I do not exhibit the symptoms for it...

As for meds. I have been on over the years:
Ceftin, Doxy (too low a dose though & for too short a time on that one), Mino (for many months), Biaxin, Flagyl, Augmentin, Placqunil, Zithromax (only 3 weks.), Omnicef (for a short time).. me thinks that's it :]..

As for diet, I am not a saint, but I am not too bad (no alcohol & so forth)-

Thanks to all.

-Sarah

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Posts: 58 | From Leonardtown, Md, usa | Registered: May 2003  |  IP: Logged | Report this post to a Moderator
MammaLyme
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Just sent you a private email with my testimony. I too live in MD.
Posts: 2173 | From Maryland | Registered: Jun 2001  |  IP: Logged | Report this post to a Moderator
Lyddie
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I have similar symptoms and have been on abx for 4 years. My LLMD says it can
take 5-6 for folks like us. My goal now is to be able to feel like I do on abx, which is functional but certainly not perfect, but get off the meds. My LLMD says this will happen in 1-2 more years, he thinks... I am starting to think I will need lifelong maintenance abx, but could at least get to a lower dose.

Have you done tetracycline? I improved most on this, then hit a plateau. Right now I am on mino twice/day, zithro twice/day and amantadine (which is an MS drug anyway), and this protocol is helping me a lot too.

I think you should definitely have an MRI, but have it orderd by someone who is knowledgable about Lyme. Eother your LLMD or a LL neurologist.

My family doctor and LLMD are urging me to check out both lupus (again!) and MS but I have already had an MRI and it was negative. MY EMG/nerve conduction test was positive however.

With some docs, who do't accept Lyme, if you get a negative MRI, they will start talking about a psychiatrist...beware!

If your MRI is positive, then it could be either Lyme or MS, but you will have a baseline to measure progress on antibiotics. You will get pressure to treat it as MS. I personally (this is just an opinion, I'm nowhere near medically trained) woudl still treat with abx even in this case, for a couple more years.


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janet thomas
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fiddler said-
I was never tested for Bartonella, though. Again, I do not exhibit the symptoms for it...


you need to watch the video of Dr j b

available at www.Lymepa.com I learned a great deal from that tape


Posts: 2001 | From NJ | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
janet thomas
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he also discusses SPECT scans
Posts: 2001 | From NJ | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
   

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