Getting ready to start...

A forum for the discussion of antibiotics as a potential therapy for MS

Getting ready to start...

Postby jenf » Tue Aug 31, 2010 5:51 pm

Scared, nervous, excited, and anxious... all at the same time! I've been "lurking" on this forum for a few months, and am now getting ready to start. I want to thank everyone in this forum for their informative posts, and to Sarah for responding to my PM's. I've joined a club that I didn't sign up for, but have found wonderful support from many knowledgeable people. I'm sure I'll be looking for much more in the upcoming months!
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
jenf
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Location: Albany, NY

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Postby agatha » Sat Sep 04, 2010 11:55 am

Hi Jenf and welcome,
Let us know when you start the abx and how you get on - we're all behind you.
with all good wishes
Agatha
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Postby jenf » Fri Sep 17, 2010 1:29 pm

Hi Agatha,
And thank you for your response! I just received the abx combo, and am going to prepare my body as well as I can for what's to come. Can you (or anyone) tell me how long before I should notice something? I've read about the herx reaction, and want to be prepared.

On another topic, my diagnosis of MS has never "felt" right, although it's only been a year and a half. Looking back, my first symptom was Bell's Palsy in 2006, followed by flu-like illnesses for much of 2008. I've done a great deal of research on Lyme disease as well, as much of my early history falls in lime with that bacterial infection.

In addition, after receiving Solu-medrol in the hospital last year, I ended up exploding into 2 months of misery. I was out of work, lost partial vision, had memory loss, cognitive impairment, tremors, etc, etc , etc. I recently read that people with a Lyme infection (though I've tested several times and always test negative) respond horribly to steroids. I'm wondering if anyone else has had this experience? If this is in fact something that can be attributed to Cpn as well. When I asked my Neuro about it, he brushed it off as "you may have had minor improvements you didn't notice". Really? Because those 2 months certainly didn't feel like improvements!!

I hate that we've all had to resort to being our own advocates with this diagnosis. Neuro's are happy just pumping us full of chemicals that do nothing for most of us. I just don't get it...
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
jenf
Family Elder
 
Posts: 106
Joined: Thu Sep 17, 2009 2:00 pm
Location: Albany, NY

Postby 1hunter » Sun Sep 19, 2010 3:28 pm

its tough, neros wont even discuss chronic Lyme and LLMD's (Lyme Literate Medical Doctors) think everyone that comes in their office has Lyme disease.
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Postby Tony » Mon Sep 20, 2010 3:41 am

Jen, take these Lyme symptoms serious. The blood tests and also the tests of the cerebro-spinal fluid mean nearly nothing, they have a sensitivity of max 40%.

Try to find a center that is specialized in Lyme, and do the better tests there (like LTT or PCR), though also these may be negative and still you are infected. However, for the LTT you shouldn't be on ABx I think.. And don't even try to talk to Neuros about this, they simply deny that chronic Lyme-infections exist.

Best whishes

Tony
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Postby jenf » Fri Sep 24, 2010 2:45 am

Thanks for your response Tony... And while I've already started the antibiotics, I've made an appointment with a LLMD in NYC. When I spoke with their office and had advised then I just started antibiotics (Doxy), they advised me they usually recommend their patients stay on them until their appointment.

I'm cautiously optimistic since I've been feeling so crappy shortly after starting the abx. But then again, all this means is that there's a potential die off of bacterial infection, no? It drives me nuts to be forced with taking matters in my own hands. I'm hoping this doc I'm seeing looks at the big picture, and will look at everything.

My older sister and daughter have both been having neurological issues, to the point of my sister being out of work and staring to get "worked up" (i.e. MRI's LP, bloodwork). She found out last week she's got Lyme disease in her brain!! We all lived in a hot spot for Lyme in upstate NY, and most of my family has been exposed. I'm so hopeful that this is the answer, but having my hopes dashed before, I'm scared it won't be. Then again, you can't force a herx reaction, right?? I guess time will tell.... until then, I feel like AWFUL!
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
jenf
Family Elder
 
Posts: 106
Joined: Thu Sep 17, 2009 2:00 pm
Location: Albany, NY


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