Minocycline Self Study

Tell us what you are using to treat your MS-- and how you are doing.

Postby tory2457 » Tue Jun 05, 2007 7:45 am

gibbledygook,

Do you supplement with a good probiotic?

With Doxy, I personally had to take it with food. Just the opposite with Mino, that I take on an empty stomach.

Folks who don't use probiotics to counter the abx killing the good gut flora can have trouble tolerating extended abx use.

Making your own Kefir is another great way to take care of our flora.
Here's a website on Kefir: I found it fasinating, and now my entire family makes Smoothies with Kefir!
http://users.chariot.net.au/~dna/kefirpage.html

I actually bought the Kefir grains on ebay, (less expensive than from his website). it turned out these very grains are sold by Dom. :)
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Postby tory2457 » Tue Jun 05, 2007 8:12 am

Brock,

A doctor I am Not,,,,so I can answer you this way.

Your symptoms are very close to my symptoms over the years. Nystagmus, numbness, L'Hermittes, active lesions in both brain and spinal cord. No lesions active currently, last was in 2002, etc.

with that said, do I think you won't have a die off reaction? I can't believe you wouldn't, even with the low dose of Minocycline you are on. I think, like the rest of us you will "feel" symptoms return, or inflammation caused by the mino,,,,and then you will feel better.

I have for these last months "relived" so many of my past MS symptoms; it's incredible. the MS hug, the tightness in my legs and neck, tingles and more tingles....and then it passes, and also gets better!

Sometimes, I scratch my head and ask wow....things come back, and then the diminish and I feel better, and the next day it happens over again.

I hold on to the IT GETS BETTER, and remebering this doesn't happen overnight!

tory
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Postby viper498 » Tue Jun 05, 2007 8:15 am

Tory,

I hope you are right about the "it gets better" part. I think that is what I want, I think that is what all of us want.

I just want some of it to make some sense to me, but maybe that won't be possible. Who knows. I sure hope that I see results with the Minocycline though.

I am also taking Rebif, so this will of course cloud the mind of my doctor if I do see good results.

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 tory2457 » Tue Jun 05, 2007 10:12 am

yes, it is what we all want. We all want to get better.

As for you remaining on Rebif, I know my doc doesn't have a problem with that...

I intend to post my MRI results (in July). I will post my regimen, and the in roads I made since I began treatment with these simple antibiotics.

For me, I held on to the fact each day symptoms began to resolve...slowly. Then I'd compare what I used to be faced with, Copaxone and steroids, and my neuro hoping I wouldn't need a wheelchair.

These are my reasons that I stayed on this course, and I'm happy I did.

tory :)
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Postby SarahLonglands » Tue Jun 05, 2007 1:23 pm

What if I have no adverse reaction to the ABX once off steroids? What does that mean?


Brock, muddying the waters, I'm afraid to say that I never had what Tory refers to when she talks about "herx to heal" - For the first few days I was slightly fluey, a few night sweats, and for the first few weeks I slept a lot. Then I woke up with a clear head, clear speech and hadn't even started the second antibiotic. I had a lot of pain in my most badly affected arm during a flagyl pulse about six months into treatment. This moved around from my shoulder to my fingers but thankfully eased off at night. Those are the only real reactions I had, the rest was just getting gradually better. So it isn't necessarily going to be easy for you to judge, I'm afraid.

Sarah :?
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby viper498 » Wed Jun 06, 2007 4:35 am

Update:

Doing good. Very little numbness in my hands. No numbness anywhere else. No increase in numbness in the evenings. It seems as though what little numbness I have left is going away. No brain fog today. I feel good. Still tapering off of Prednisone, still taking rebif.

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 viper498 » Thu Jun 07, 2007 5:58 am

Update:

Cautiously optimistic, but hardly any numbness in my hands. Which means all of my symptoms are pretty much gone. Was it the Mino? Or prednisone, or Rebif? Or was it the natural course of the relapse? I really wish I knew.

I will keep taking the mino and the rebif and see if I can keep the dang relapses away...

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 viper498 » Fri Jun 08, 2007 7:53 am

Update:

No numbness in Left hand, very little in Right hand. This last relapse started in my right hand. Maybe it has more damage to that bundle of nerves?

No other deficits, or problems. No adverse reaction to ABX - Mino.
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Postby viper498 » Sun Jun 10, 2007 7:22 am

Update:

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. Other than that there is no weakness of my leg, or any numbness. Has anyone had this before? 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 tory2457 » Sun Jun 10, 2007 11:08 pm

Brock,

Symptoms will wax and wane,,,very normal! Being normal I always found helpful.

I mentioned you sound a lot like me. I just had what seems to be pretty close to what you described about your right knee, a vibrating sensation in my left knee and tingly...different than other tingly sensations. It's scary, when something new happens and we can't be sure what May come about.

Hang in there, you're on Minocycline now and I am anxious to await if you like so many with PPMS halt their decline because of antibiotics!
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Postby viper498 » Mon Jun 11, 2007 6:31 pm

Tory,

Thanks a lot for your words. Everyone at this site helps me so much. I hate to get sappy... But it truly does help. All the advice, and from people who have been there and done that. Thanks!!!!

Update:

So the feeling in my knee is all but gone. I hardly notice it now, its so faint. My numbness has receded again. It is barely there now. I am sticking with my Rebif so far too.

I was reading on CPn Help.org the supplement list. I haven't heard of NAC. Do you think this is something I should add to my list of things to take? Also, if I could get one other ABX to take and add to what I am taking now, what would it be? I doubt my Doctor would be ok with this, but perhaps I can get it somewhere else? Either way maybe it would hurt to start taking another one to compliment the Mino. I don't want to over do it though.

Thanks again,
Brock
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Postby mjs » Mon Jun 11, 2007 10:15 pm

I've read that NAC might help with liver enzymes, which may be an issue if you are on Rebif and Minocycline.

Given that you also took steriods for the relapse, I'd be very heistant in attributing your improvement to the Mino. Not saying it didn't help, but steriods have a proven track record of hastening recovery from relapse.

Given that you've relapsed twice while on Rebif, and given the liver effects, consider whether you need to take the Rebif at all. Mino has shown really encouraging results on its own.

My wife is on no CRABs (persistently high liver enzymes, and allergic to Copax) and is taking quarterly steroid pulsing. She is (touch wood) doing well. We are keenly watching the estriol trials (not helpful for males, though) and Tovaxin.

Best of luck :)
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Postby viper498 » Tue Jun 12, 2007 12:11 am

MJS,

This is true, what you say about the steroids. However the only thing that makes me second guess them is that fact that I noticed no benefit from them until the morning after I took minocycline. It could be a coincidence... Thanks for the info about NAC. I will be looking for this at the store. I've had IV Solumedrol, and it truly did the trick on my nystagmus. Very quickly infact. Other than that, I've never had another pulse of steroids, that and this current of Prednisone. It is really hard to say what the improvement could be attributed too at this point, but I still put money on Mino.

Brock
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Postby SarahLonglands » Tue Jun 12, 2007 12:16 am

Hi Brock, here's a page about NAC (n acetyl cysteine.)

http://www.davidwheldon.co.uk/NAC.html
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby CureOrBust » Tue Jun 12, 2007 1:11 am

viper498 wrote:I was reading on CPn Help the supplement list. I haven't heard of NAC. Do you think this is something I should add to my list of things to take?
NAC on its own has been shown to be helpful for EAE, and is thought to be beneficial to MS (Not sure if any human trials have been performed). I would say Yes, but I'm no doctor. http://www.thisisms.com/article212.html

viper498 wrote:Also, if I could get one other ABX to take and add to what I am taking now, what would it be? I doubt my Doctor would be ok with this, but perhaps I can get it somewhere else?
If I am not mistaken, on the wheldon protocol, the doxy is a similar type of Abx as Mino, so I would guess Roxythromycin would be the obvious addition. I dont think its as common in the USA so maybe for you its Azithromycin. My GP prescribed these all day, so had no problem with prescribing them to me.

The second Abx is if you are wanting to attempt the abx protocol (ie anti CPn). I found that david wheldon is very responsive to emails, and he would be the best to ask.
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