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Did I mention my spinal lesions have healed?
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Author:  Amyloo [ Sun Aug 23, 2009 6:40 pm ]
Post subject:  Did I mention my spinal lesions have healed?

About three years ago I was in a wheelchair. This was when I had all my testing done, including brain and spinal MRI's. In addition to many lesions on my brain, there were two on my T-spine.

Well, just a couple of months ago we repeated the MRI's. No new lesions on my brain, but the two on my spine have healed! :jumpy: And :jc:

I can't prove it, but I bet it's a direct result of Ceftriaxone and company. Onward.

Author:  Cog1st [ Sun Aug 23, 2009 8:44 pm ]
Post subject:  Re: Did I mention my spinal lesions have healed?

AWESOME AMY!! PRAISE GOD!! :kicking: :woohoo: :jumpy: :danc: :bounce:

What a dream come true - wow, I am so happy for you! Lesions can disappear with treatment. You give me such hope. I have brain lesions and sometimes I wonder if they are getting the best of me. Scary.

Thank you for this wonderful news! How long did you go misdiagnosed/undiagnosed? If you ever feel like submitting your story to me, I'd love to have it for the stories section. It would help many!

How is the Septra going??? Did you start Rifampin yet?

My leg pain has been utterly intolerable and I am frozen right now - afraid to go forward afraid to stay where I am. This combo could help me if only I could get it in my mouth.

Love,
Dana

Author:  silver [ Mon Aug 24, 2009 12:00 am ]
Post subject:  Re: Did I mention my spinal lesions have healed?

YAY! :jumpy: :jumpy: :jumpy:

So nice to hear good news Amy, congratulations...praise the Lord! :prayer: :woohoo:

Author:  krissy [ Mon Aug 24, 2009 6:52 am ]
Post subject:  Re: Did I mention my spinal lesions have healed?

AWESOME!!!!!!!!!!!!!!!!!
I'M DOIN THE HAPPY DANCE!!!!!!!!!!!
:woohoo: :woohoo: :woohoo: :woohoo: :woohoo:

Author:  Amyloo [ Mon Aug 24, 2009 12:02 pm ]
Post subject:  Re: Did I mention my spinal lesions have healed?

You guys are all so cool. Thanks for the rah-rahs!!


Dana, I am on Septra, but haven't been back to the dr. to get the Rif. yet. I am handling the Septra fine, but I must confess I am only taking half of what the dr. Rxed. That's just me, that's how I roll. :D

I'll give you my nutshell story quickly: in 2000 dxed with myofascial pain syndrome (mostly neck issues.) In 2003 dxed bi-polar. In 2005 I had such deep bone pain that went on for months, went for a bone scan. (I really thought I had bone cancer, and I am no pain wimp.) Dxed Fibro 2005.

Continued with symptoms (blurred vision, bladder issues, leg spasticity etc.) In November 2005 legs stopped working due to spasticity. I spent five weeks in a wheelchair. Side note: I look back now and I realize I never wondered "will I ever get out of this chair?" I just kept on keepin' on. :jc: Dxed MS in 2007.

Spent a year on Copaxone (not an immune suppressor; the only MS drug that is not.) Continued to decline. Went back over my labs, saw the Quest Lyme panel with two positive bands that my Neuro called "probably false positives."

Ran my own Igenex, CDC positive on the IGm, but not the IGg. Also positive for Babesia and Bartonella.

That pretty much covers it. Oh, I did have one neuro who tried to dismiss the lesions in my brain as "nothing". When I asked him what would cause them, he replied (wait for it....) "It's just magic." No lie. I just thanked him, got a copy of my MRI report and hit the next doctor. Love to you all today.

Dana, I'll pray for your leg pain. I love Aspercream for the joints, don't know if you have tried. :love:

Author:  Cog1st [ Mon Aug 24, 2009 3:11 pm ]
Post subject:  Re: Did I mention my spinal lesions have healed?

Amy,

Your story is amazing - isn't it crazy how WE as the patient must put everything together? I remember when you came here and the MS diagnosis...thank God no immunosuppressants..phew!

When I learned I had brain lesions last summer, I literally fell on the floor and cried. My first thought was, "well that explains all this hideous pain, my nerves are going through demyelination". Then I remembered I had a brain MRI in 99, I was told it was NORMAL. I never got a copy so I asked the radiology place to compare them - and then send me a copy of the 99 report. I fell on the floor again (not really - but nearly fainted!) when the report from 99 said I had brain lesions!
I didn't have any pain in 99..I had the MRI after seeing a (nut-case, sorry couldn't help myself) neurologist about migraines and vertigo. He told me the MRI was normal then!

Really - it was a blessing in disguise I didn't know. I would have thought MS and gone off looking for help and who knows, I might have embarked on MS treatment...oh, really, thank God I didn't know. But it was sort of a relief because I lived at least 8-9 years with brain lesions (probably a lot longer) and had no pain. So, I knew the brain lesions didn't just appear and create the horrible pain and that my pain could get better w/treatment.

Well that was winded...lol!

Thanks for the tip on Aspercreme, I forget about stuff like that, I will take ibuprofen, it doesn't help leg pain though. Another good one is Biofreeze, which I think I have...good idea.

By the way anytime I start any new drug I always start w/half doses, always! How are you doing, good, ok, indifferent? Septra can kill both Babesisa and Bart. Awesome abx. I am hoping it does alleviate your leg pain, because then I think we can safely assume the leg pain is co-infection related possibly.

:hands:
Dana

Author:  Amyloo [ Mon Aug 24, 2009 7:28 pm ]
Post subject:  Re: Did I mention my spinal lesions have healed?

I am having HUGE increase in knee/shin/ankle/foot pain this last week or so. Maybe due to Septra, Hmmmmm? Gotta get to dr. this week for the Rif. Love to you, and prayed hard for you this a.m. :console:

Author:  Cog1st [ Mon Aug 24, 2009 8:26 pm ]
Post subject:  Re: Did I mention my spinal lesions have healed?

Sounds like a bart herx, well supposidly shin pain is Bart, been there - UGH!! Thank you always for your prayers, they are always needed. I am in a tailspin right now. Really feeling cruddy and have many options and sometimes it is overwhelming, I prefer a miracle healing, but why do I get the feeling I have more fire to go through?
Know you are always in my prayers too

:pray:
Dana

Author:  istherehope [ Tue Aug 25, 2009 7:33 am ]
Post subject:  Re: Did I mention my spinal lesions have healed?

So glad to hear that the lesions have healed! that is such great news! and gives hope to so many.

You really have an amazing story... praise God you didn't do the MS typical treatment... I will continue to pray for you. Glad to hear that you are holding your own and really making some progress!
j

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