2nd Relapse in 3 months

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

thoughts

Postby notasperfectasyou » Mon Jun 04, 2007 10:01 am

Brock,
I'm sorry to hear you're having a tough time. Is you dx RR? Steroids helped us when we were RR but now that we are SP they really don't have a lasting effect. We did IVIG for the last relapse and it seemed to work very well and continues to.

I will say that I've started reading the abx boards and I've found them to be very interesting. Unlike some other ideas like glyconutrients that don't seem to have any logical basis for working, the abx folks seem to be a growing group with some genuine researcher folks and a handful of results. Then again, I have to say it's like pulling teeth getting real info about the abx - I don't think there have been much published research on it.

Good luck and keep posting. napay
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Postby viper498 » Mon Jun 04, 2007 11:42 am

MSResearcher,

I will definitely update my thread in Regimens with any info related to taking mino or my MS status. I proceed cautiously because who knows if the progress I have witnessed will last or not. It really does make a difference though. I will post again regarding this morning in the Regimens section.


Naypay,

My dx is/was RR MS. I surely hope that in two years I wouldn't have converted to SP MS, although I guess it could be possible.

I noticed the same thing regarding ABX. I've been following the canadian research though, and it looks really good. Good enough for me to start on mino myself...

Brock
History:
Diagnosed 06/05; Nystagmus - Right Eye: MRI Numerous active lesions
MRI 07/06 - No active Lesions
Relapsed 03/07; Right leg, numbness
MRI 03/07 - A LOT more active lesions than the first MRI
Relapsed 05/07; Both Hands, numb; Torso, numb
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Postby notasperfectasyou » Mon Jun 04, 2007 11:52 am

I'd love to know any good links you find on the abx. Also, I've not run across any info that says Solumeduol (sp?) is dangerous like other kinds of steroids that we hear about in the news. Maybe it is, but I think "Steroids" is just as general a tern as "Chemotherapy" - just because the drug fits in the class, doesn't mean it has the same side effects as the rest of the class. Just thinking out loud. napay
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Postby viper498 » Mon Jun 04, 2007 11:58 am

Naypay,

I like to refer to this one article, just published last month. I have been waiting on the results of this particular study for 2 years. I was very happy with what I read. See below for URL link:

<shortened url>

There are a few more on Minocycline on Pubmed, but as you know these studies are rare, unfortunately, because I think it should be pursued much more diligently that it is now. There really is something to this, although like I said, I won't speculate as to what right now.

Brock
History:
Diagnosed 06/05; Nystagmus - Right Eye: MRI Numerous active lesions
MRI 07/06 - No active Lesions
Relapsed 03/07; Right leg, numbness
MRI 03/07 - A LOT more active lesions than the first MRI
Relapsed 05/07; Both Hands, numb; Torso, numb
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Postby Chris55 » Mon Jun 04, 2007 1:05 pm

Brock--my daughter has already decided if her supplements ever stop helping her, she will go directly to another alternative, i.e., Mino, LDN, the antibiotic regimen, etc. I really want you to keep us posted as the Mino might be a great "next" choice if it ever comes to that!

Keep thinking positive too!
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Postby viper498 » Mon Jun 04, 2007 1:16 pm

Well it could possible be a great alternative, or fall back for her. Hopefully more official studies are done to research the actual mode of action.

Brock
History:
Diagnosed 06/05; Nystagmus - Right Eye: MRI Numerous active lesions
MRI 07/06 - No active Lesions
Relapsed 03/07; Right leg, numbness
MRI 03/07 - A LOT more active lesions than the first MRI
Relapsed 05/07; Both Hands, numb; Torso, numb
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Postby robbie » Mon Jun 04, 2007 2:06 pm

mode of action.

Hi Viper dosen't mino mostly have an anti inflamatory property used to treat acne.
Had ms for over 19 years now.
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Postby viper498 » Mon Jun 04, 2007 2:14 pm

I thought Minocycline was used to treat acne due to the ABX activity. The question is... If it works for treating MS, then why? Is it because its killing off bacteria? Or is it because it has anti-inflammatory or neuroprotective properties that are beneficial to the MS disease process. Thats the million (more like billion) dollar question.

Brock
History:
Diagnosed 06/05; Nystagmus - Right Eye: MRI Numerous active lesions
MRI 07/06 - No active Lesions
Relapsed 03/07; Right leg, numbness
MRI 03/07 - A LOT more active lesions than the first MRI
Relapsed 05/07; Both Hands, numb; Torso, numb
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Postby Chris55 » Mon Jun 04, 2007 5:13 pm

One quick comment about Mino...it is in the Tetracycline family. I take a drug--Periostat--which is also in the Tetra family for periodontal disease. It is a pill form, 20 m. twice a day. It does NOT work like an antibiotic.

They have found that the body releases enzymes in response to gum inflammation from infection. These enzymes cause gum detachment but they do not know why. Periostat drastically reduces the number of enzymes getting through. This not only stops gum detachment, it actually causes a small degree of reattachment. Do not confuse this with plaque--I stiil have to floss durn it!

One other interesting think I came across the other day. Long story short...I am having some extensive--and unnecessary--dental work done due to "gross incompetence" from my periodontist (I think he has a drug problem.) I did hours of research in an effort to understand what was happening. One thing I came across..when they get right down to the very nitty gritty, they do not understand the "why" of periodontal infection. They know there are staph/strep bacteria present but they don't really know what part they play in the scheme of things.

Again--my daughter is being treated for a strep bacteria infection with secondary fungal infection. Sure is food for thought...

Also, in all of my research I remain amazed at just how much they still DON'T know about so many different things!
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Postby viper498 » Sun Jun 10, 2007 10:55 am

Ok, so some numbness has returned to my hands only. I missed a dose of minocycline Wednesday night, I also missed my Rebif injection. The numbness started returning thursday-friday. Still exists now. No numbness anywhere else. Another thing to note is that on my right leg, if I tap on my knee I get a strange sensation that almost feels like a vibrating sensation in the middle of my back. Now I have an almost constant vibrating feeling in the middle of my back....

Other than that there is no weakness of my leg, or any numbness. Has anyone had this before (the vibrating)? I am sure it is MS related. Hopefully that doesn't mean I am about to have problems walking. With my luck though.......
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Postby scoobyjude » Sun Jun 10, 2007 1:21 pm

Viper, I've had that vibrating feeling in my knee and foot and it doesn't necessarily mean you are going to have walking problems. Sometimes for me it just lasts a few days and then disappears. This has happened both when I am having a relapse and when I am not. I just figure that the nerves are having trouble communicating. I try not to let it bother me much but of course it worries and annoys me. Just wait and see what happens. Don't think the worst until it's proven.
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Postby viper498 » Sun Jun 10, 2007 5:09 pm

ScoobyJude,

Thanks for the advice. I'll try to not let it get to me. I can't tell whether it is related to another relapse or not. I guess time will tell. It just kind of scares me. Its been kind of crazy with my MS here lately. I thought I was doing better after I started taking minocycline, but I can't tell at this point. Thanks again!!!! I really do appreciate it.
Brock
History:
Diagnosed 06/05; Nystagmus - Right Eye: MRI Numerous active lesions
MRI 07/06 - No active Lesions
Relapsed 03/07; Right leg, numbness
MRI 03/07 - A LOT more active lesions than the first MRI
Relapsed 05/07; Both Hands, numb; Torso, numb
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Postby Loobie » Sun Jun 10, 2007 6:30 pm

Viper,

Tim, that spends a lot of time in the Tovaxin threads, told me of using the 4 day rule. Wait 4 days before you worry about anything. I was driving myself crazy until I started using that rule of thumb. If it lasts 4 days, worry about it, if it doesn't, don't. The longer you have this shit, the more stuff like that happens fleetingly. By more I mean more frequently.

There is always something goofy going on with numbness or tingling. I just try and not get stressed about it until it basically remains unchanged for that long. That might help you with your stress level. I removed myself from an extremely stressful job into a "manegebly stressfull" job and it lightened up those kind of symptoms alot.

I used to think the stuff you read about stress and MS was BS. I don't know really how much I thought it was BS, but I just didn't want to deal with it. It definitely isn't BS. I should have just realized, by default of how much you read about it, that it was something deserving of attention. Getting stresed out will make your MS screw with you. I can say that from personal experience. I wish you all the luck in the world with the Minocycline. I truly hope for all our sakes that something is found that REALLY works!

Hang in there man,
Lew
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Postby viper498 » Sun Jun 10, 2007 6:54 pm

Loobie,

Thanks for the tip. I am on day 2 so we will see in another 2 days if I need to worry. But hell, if I have yet another relapse, that will have made THREE in the last three months. Does that mean I am converting to SPMS? although I seem to be recovering from each relapse so far. I do still have slight numbness in my hands. EDSS so far equals 0, I just seem to be picking up issues and then they go away. Damn this F'ing disease. This has not happened before, so I guess that means I am having some sort of disease progression. I am waiting for some remission. I hope it comes.

Brock
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Postby tory2457 » Mon Jun 11, 2007 12:22 am

Hey Brock,

I can understand where your head is,,,worrying if this could be the start of another relapse. Heck, I can't tell you how many times I went through that over the years.

You promised me that you would remain calm-remember? and not jump to the conclusion of this being a relapse...(not easy to do-I know). Minocycline crosses the BBB and it's job is to find your lesion and mend it, when it's mending it you will revisit symptoms; and some can be new. This isn't an easy fix, this bacteria is soooo smart, it can change from a spirochete to a cyst form than back to a spirochete.....hard to kill! It's this reason we don't find lyme when we get spinal taps...it already changed into a cyst form--called Pleomorphism!

keep your chin up, :wink:
and keep posting
tory
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