No active lesions! YEAH for parasites?!!!

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No active lesions! YEAH for parasites?!!!

Postby Egggirl » Tue Feb 28, 2012 3:24 pm

So I sure did not get on here keep anyone posted with how I was doing! I am feeling good.

I finished the pig whip worm in October. NO treatment after that. I had an MRI the end of Jan. as part of the study I was in. The study was blinded but they got permission to give me the results of the last MRI to help me decide if I wanted to start the shots or not.

NO active lesions! How about that! :-D
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Re: No active lesions! YEAH for parasites?!!!

Postby mrbarlow » Tue Feb 28, 2012 3:32 pm

Thanks Egggirl - that is excellent news. Probably a good idea to get on hookworm now as a longer term treatment and keep the monster at bay.

Please keep us posted as to your progress.
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Re: No active lesions! YEAH for parasites?!!!

Postby Egggirl » Tue Feb 28, 2012 3:40 pm

I just copied this to my original post under Drug pipeline. MrB. I am going to take my chances and hold out for the next phase of the study. I know that I can tolerate this very well and I just feel if there is anyway shape or form for me to wait I will since studies are so important in providing new possibilities for all of us.
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Re: No active lesions! YEAH for parasites?!!!

Postby Lyon » Tue Feb 28, 2012 4:20 pm

Thanks Egggirl, awesome to hear. I was going to mirror what barlow said but it sounds like you know what you're doing and.....although it's not exactly what you might want or is best for you, I think they actually do want to leave you off treatment for a while so that numbers go back up and will actually be confirming when you get in the next phase and back on the ova...hopefully.

For the sake of curiosity, how long have you had MS and how progressive was it before starting the worms? You seem pretty happy, did the treatment seem to make an obvious difference?
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Re: No active lesions! YEAH for parasites?!!!

Postby Egggirl » Tue Feb 28, 2012 5:21 pm

Lyon,

I think they expected the last MRI to already show MS activity but the docs and myself are blinded to previous MRIs so I really have no idea how long I have had no active lesions. Of course if I don't participate in the next part of the study I don't know if they would even have access to my new MRIs. I do go to the MS clinic at the hospital in Madison but Dr. Fleming is not my doctor. Plus I have to consider how long it will take before they can start the next part of the study. I have to talk to my regular neurologist and get his thoughts but at this point I am ok with waiting 6 months and having a MRI done through my insurance.

Symptoms started in July 2009. I ignored it too long. I was diagnosed as CIS in Nov 09. I did have IV steroids right away as I had a numb tongue and wouldn't you know I talk for a living and love to eat. I also could not tell if I was drooling. :-D Seriously though it was pretty worrisome my face and eye were also numb and I was having balance problems. I also took balance therapy. I had 1 brain lesion and decided to wait to start the shots. 6 months later in May of 2010 I had 5 lesions. I then swayed back and forth what to do and started the study in July 2010. I had an MRI every month for 5 months then 10 months of treatment ending Oct 2010. So I have no idea of course how many lesions I had by the time I started the ova in Jan. but I was having new tingling and fatigue and I felt cognitively just slower than I had been.

I have to say a couple years before being diagnosed I had strange sensations and balance problems but really just ignored them.
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Re: No active lesions! YEAH for parasites?!!!

Postby Egggirl » Tue Feb 28, 2012 5:23 pm

Since I have already been through the observation period for the end of the study I can start the shots right away if I want to. Or whatever other treatment I decide.
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Re: No active lesions! YEAH for parasites?!!!

Postby Lyon » Tue Feb 28, 2012 5:30 pm

Egggirl wrote:Since I have already been through the observation period for the end of the study I can start the shots right away if I want to. Or whatever other treatment I decide.
Not sure what you're getting at....if you start another treatment you have to drop out of the T suis study?
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Re: No active lesions! YEAH for parasites?!!!

Postby Egggirl » Tue Feb 28, 2012 6:46 pm

I think they actually do want to leave you off treatment for a while so that numbers go back up


I just meant Phase 2 does include an observation period at the end, which I have already completed. The study doctors will not be checking me any longer for increased MS activity. All other diagnosis at this point and treatment discussions will be with my regular neurologist and is not part of the study.
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Re: No active lesions! YEAH for parasites?!!!

Postby Lyon » Wed Feb 29, 2012 4:13 am

Thanks Egggirl. I've lost track of the whole thing so I'm wondering if the people you're talked to sound pretty certain that there is going to be a "next" phase of the trial or how long it might take them to get it underway?
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