This Is MS Multiple Sclerosis Community: Knowledge & Support

I'll start posting my Minocycline experiences here instead. I will copy and paste from a post I made in the general forum. This should catch everyone up:

I decided to follow this regimen for Mino:

For the first 5 nights, i will take one 100mg dose, afterwards I will begin taking a 100mg dose in the morning and one in the evening.

I am currently on my fifth night (already took it tonight).

Considering that what I am going to say is anecdotal, take it for just that, anecdotal evidence.

The morning after the first night of taking Minocycline I noticed greatly reduced numbness in my hands and torso. I said nothing to my wife about it in fear it was all in my head. I didn't want to Jynx it. However during the evening it started to return but mainly just in my hands.

Well now, being on the fifth night, I have no numbness in my torso, at all, and currently the numbness is returning in my hands, making it somewhat difficult to type this.

This has happened each evening, the numbness returns, but in the morning, when I wake up, it is almost non-existent again.

I am also taking prednisone, but I definitely did not start having this change until the morning after I took my first dose of Minocycline and then each morning after, other wise I might say that the exacerbation is just taking its course.

I will begin the twice daily dose of Mino tomorrow. Lets see if this changes whether the numbness returns in the evenings or not. I am VERY curious.

Also, others have reported feeling really badly after taking Mino. I actually have felt really good. A noticable difference in mental clarity, for the better.

The first night I had a really hard time going to sleep though, and I was hot, even sweating. I haven't had that since the first night I took the mino. All in my head?

I can say with certainty that for me, at least for the last four days I have noticed a definite improvement in my symptoms. I noticed nothing when just taking prednisone, and I am noticing that, like I said, in the evenings the numbness in my hands only, starts to return. Somethings up.

When researching Minocycline I noticed that it has a very short metabolic half life in the human body (11-22 hours), could this be the reason for the numbness returning in the evenings? Has my body completely metabolised the 100mg dose and the effect it had on me in the morning is no longer possible in the evening????????

I'll keep all updated with my experiences.

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

Brock - Thanks for the post and for reporting your experiences. I started my husband last week on Tuesday on Doxy 100mg so I will be very interested to see your mino experience.

Daisy

Daisy,

How is your husband doing on the Doxy? Because I am likewise interested in his experience. I will keep posting here good or bad... Hopefully all good!

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

This morning...

Same as the last four mornings. Very little numbness in my fingers, no numbness in my torso. None! My hands were good enough for me to resume typing about 85 WPM on my keyboard. Finally. I took my morning 100mg dose of mino this morning, so lets see if the numbness creeps back again this evening.


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

Hello again, Brock!

Glad to see that you moved this discussion, here, where you'll be able to have it remain more accesible for all to read

I will be following your progress closely, too...curious as to how one is doing on antibiotic monotherapy, without developing a resistance.

I just learned the hard way abou this, with doxycycline. Here's an URL should either you or Daisy be interested in reading about my experience:

http://tinyurl.com/2ewxqo

Brock, I wish you the best!

Daisy, that you are one of the most intelligent, objective-minded caregivers, I've ever had the chance to meet here; is beyond words for me. Your husband is SO very fortunate!

--Minai

Update:

It is 9:15pm CST. At this time yesterday the returning numbness was more than evident, it affected my typing quite a bit. Tonight, This is not the case. I am typing just fine. The only numbness I have is in the outer flesh of my palm, both hands, and both pinkies, and it is very mild. SO, this is improvement for me! I did not take my mino this morning until 11:00 am and I took it with food (went to lunch with people from office). This could have affected the efficacy of that dose. Tomorrow I won't mess around though. The catch is that I am supposed to take the Prednisone with food, first thing in the morning, so I have to time it just right, or skip lunch.. It wouldn't hurt me to skip a few meals anyway.

I still know that ONCE AGAIN there is an improvement of my symptoms. Whether I can attribute this to the Mino or not is probably speculative though. Lets see what happens tomorrow.

Brock

A little off topic, but if I could ask, what dose of prednisone are you taking?

Cure,

I need to look on the bottle to see. I do know that it is a tapering dose. Each week I take less. This week I am taking 4 pills for 5 days (i know... not quite a week).

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

Update:

Woke up this morning. Couldn't feel either of my hands. OH NO! OK, so it wasn't MS... It was the way a slept. Very cruel to say the least. I definitely wasn't laughing. So after got the blood flowing in my arms again, all was fine.

I do have a headache that won't go away this morning, and brain fog.. I felt very focused yesterday, where as today not so good. No numbness on my chest, abdomen, or back and just a tiny bit of numbness on the palm and fingertips of my hands. I would say the lowest level since this latest relapse. I am satisfied with my progress so far regardless of the remedy...

Has anyone had issues with hyperpigmentation? I am wondering if this could be an issue for me later down the road? I've been told to take Vitamin C supplements to keep this from happening, but I can't find any other information that indicates that this is a good preventative method. Will Mino cause hyperpigmentation in all people, or just some?


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

Hi Brock,

Glad to hear you're tolerating Minocycline.

Regarding hyperpigmention my doctor continually asks if I am taking enough vitamin C daily. I take at least 3000mgs daily. My doc is always happy to hear that, and yet tells me to watch for freckles.
Do I think everyone gets hyperpig? no, like most drugs not everyone reacts the same.

Here's a link for you which sites research on vitamin C and hyperpig.


5. WHAT IS HYPERPIGMENTATION? Minocycline can cause discoloration of the skin anywhere on the body. This is called hyperpigmentation. Large daily doses of ascorbic acid (vitamin C) may prevent this phenomenon. (Bowles WH, Baylor College of Dentistry, Texas A&M University System Protection against minocycline pigment formation by ascorbic acid, J Esthet Dent, 10(4):182-6 1998)

Dr. A. Robert Franco, a rheumatologist practicing in Riverside, California, says that hyperpigmentation occurs in about 10% to 20% of patients taking minocycline (Minocin) on a daily basis and over one year. Occasionally it may appear earlier. It occurs less frequently with patients taking Minocin on a three times per week basis. It may be necessary to switch to another antibiotic. It is usually reversible after discontinuation of the medication, but fades slowly and sometimes not completely.

http://rheumatic.org/faq.htm

Brock,

When are you off prednisone? and will you continue with Mino after you're off steroids?

There are key questions I have for you as you make that transition.

I also can't suggest enough that you begin to take a quality probiotic Theralac or Florastor....abx kills both good and bad bacteria. Yogurt is good, but not sufficient from all the reading I've done on lymenetdotorg.
I even make my own Kefir...

the best,
tory

Tory,

I should be finishing up my prednisone prescription in another 2 weeks or so. I will absolutely continue taking Minocycline afterwards. I am in it for the long haul.

I have never heard of those probiotics you speak of? Can those be purchased at a local store? What questions do you have as I make that the transition off of prednisone?

Brock

Hi,
I have hyperpigmentation affecting my face in small patches which a small amount of makeup covers up. I figure that's the least of our worries! I try to take supplements of C,D, E whatever but have not been very rigid about this not least because both minocycline and doxicycline make me feel sick.

Good luck with the mino!

_________________
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,

Brock,

Regarding probiotics: no, neither can be found in a health food store.

www.theralac.com
www.florastor.com.
Florastor offers Saccharomyces boulardii (very important) to replenish this yeast.
I supplement with S.boulardii while taking Theralac.

Theralac needs to be refrigerated, I'm not sure about Florastor.

Either one is a good probiotic.

Questions for you when you are done with prednisone,,,
as the steroids leave your system and Mino is the only thing in your system:

IF you begin feeling rather lousy, will your neuro say this is a flare up? I would hope this is not the case.
I would rather tend to say this would be a Jarish-Herxheimer reaction. The die off makes us feel lousy,,,then we then feel good.
The saying is we must Herx to heal.
Expect to feel lousy, even though you are on a low dose of Mino daily,,,,try to keep this in mind if you hear that you now are having a relapse (because you are off steroids).

Not to cause you confusion....but, it's this very reason some of us "think" a relapse is the effect when it's the die off caused by abx.

Keep posting,
tory

I will look in to those probiotics....


I will also use good judgement as to what is a relapse and what is not. I don't let my neuro tell me what is and what isn't. If you are correct that there is a kill off process then it might make me a believer of the infectious cause of MS. What if I have no adverse reaction to the ABX once off steroids? What does that mean?

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