My MS Mis-Diagnosis please read!!!

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby sojourner » Sat Mar 14, 2009 7:48 am

Oh no, I'm not going off on Robbie!!!! If it seems that way, I am sorry......I am not.

I am just trying to get some info out that never sees the light of day, however, that doesn't mean the data doesn't exist.

I don't care how, when, where one had a lyme test; whether it was on blood, spinal fluid, serology or pcr.........Lyme tests are NOT to be used to diagnose Lyme disease.......The test, as it is designed, should be used for disease surveillance only-a much higher threshold set by the CDC.

There is study after study (sometimes on CULTURE CONFIRMED LYME DISEASE PATIENTS) that show the current tests miss MANY patients.

So how is it that physicians continue to use it???? That is a question I have never been able to get an answer to. I know we like tests, simple ways to rule in or out diseases and that is fine if the test in very accurate, but if it is not that is a HUGE problem.
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Postby sojourner » Sat Mar 14, 2009 8:30 am

[/quote] There are many Lyme forums on the internet.[quote]

I know, but I like it here, Peta.

The fact is there may be a lyme(bacterial/MS) link and my husband is and always will be MS diagnosed.......so I do feel I belong.

I am glad you received comprehensive treatment for lyme, and that you have remained progression free for 12 years.......as I said earlier, that is quite a feat!

Finally, the attempt to marginalize the entire lyme community (whatever that is) by calling docs and patients quacks and fools is unnecessary and telling.

Opinions such as these should be backed up by data. I'm not calling anyone a nut or a quack.....I think the vast majority of doctors and researchers are trying to do their best for patients, if some are misguided they are not that way on purpose. And we all know there are always froot loops in any community.

Can't we kiss and make up, Peta........Please :wink:
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Postby LR1234 » Sat Mar 14, 2009 8:54 am

I am not going to add fuel to this fire but....what is MS anyway?!! MS is the name given to inflammation in the brain and spinal cord where the body seems to be attacking itself. Every person who has "MS" probably has a different cause which is why we don't know what the "cause" is yet.

For example there are 100's of reasons why someone could have a headache, they still experience the pain but the reasons for that pain could be different.

I think MS is a name for a collection of abnormal lesions and an ongoing disease process aimed at the brain and spinal cord, but somehow it isn't actually a disease as such but the body reacting to something else and malfunctioning.
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Postby robbie » Sat Mar 14, 2009 9:17 am

It's every man for himself

I like that, it really fits ms
Had ms for over 19 years now.
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Postby sojourner » Sat Mar 14, 2009 1:44 pm

Well, good thing you aren't king around here, Peta.

Tell us, what did you find out about Andrew???? I googled him too and found nothing. I also googled myself and found many interesting things about ME!-It was fun!!

The trailer to the movie is actually a link to a pretty good documentary---won a Tribeca film festival award, and has been featured on national news shows. I hardly think poor Andrew was trying to pray on us helpless MS victims.......do you really?

I have a suggestion, if this thread bothers you so much why not just SOB. All this stress is not good for you, Peta--You know that!
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Postby patientx » Sat Mar 14, 2009 2:30 pm

Petakitty,

You were on IV rocephin (and other antibiotics) for 9 months!? Shamwow! Why so long?

I'm curious to hear a little more about your story. For instance, were you diagnosed with MS after clearing up the lyme? And what led you to the MS diagnosis? And how did you figure you had both and not just the lyme (I think many people would have just stuck with the lyme diagnosis).
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Postby sojourner » Sat Mar 14, 2009 2:50 pm

So what, people post on multiple forums all the time. I post here, MS world, CPn Help and lymenet (I don't do multiple posts--it's just not my thing), and I see many people who post the same questions and such. Heck, I know some people here who do that. I think Andrew using the same name in his multiple posts shows he isn't hiding anything. Just so you know, I don't know Andrew from Adam, but the principle here is he had something to say and him adding a link to a movie trailer is certainly not trying to "sell" anything.

As to me being nutty-----careful there, I am sensitive, Peta.

And no, you are correct, i don't have MS and I can't even imagine how that is and I don't pretend to. I am, however, surrounded by MS as both my husband and sister have it (and lots of others from out hometown in Pa). I obviously care deeply about them. My kids have been ill with this too.

As far as me not contributing-well who are you to judge? I actually posted several studies that relate to MS/Lyme in this very thread. Someone ( I know, I know, not you) might find them interesting or even useful.

Anyway, take a chill, you don't like me, think I'm nutty, that's your prerogative.

I still wish you would post a detailed account of your antibiotic treatment to include which meds you were on, how long, who treated you, etc. This is invaluable information to those of us inquiring about a possible ms/lyme link even if you feel the treatment was not successful or helpful. This site has that great antibiotic section and your input would be much appreciated.

Take care Peta, you have worn me out!
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Postby patientx » Sun Mar 15, 2009 10:56 am

P-Kitty:

Thanks for the elaboration. (For the record, I agree with most of what you have written about the whole lyme thing. I had a positive from, Igenex, started oral abx, but that's as far down that route I went).

Sorry for more questions, but why did the CDC get involved? I can understand if you tested positive on a standard lab's Western Blot, then the doc might report it to the CDC. But most of these LLMDs use Igenex.

And, in th end, what made you decide to start the Copaxone?
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