Minocycline Self Study

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

Postby Loriyas » Sun Sep 09, 2007 6:31 am

Brock
That is exactly how I felt when minocycline, so it's probably not your imagination! I am currently off (I hope temporarily) so I'll see what transpires. If I have any problems then it will show that it was the minocycliine helping. Will let you know.

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Postby viper498 » Thu Oct 04, 2007 8:56 am

Update:

I am still doing fine. No relapses yet (knock on wood). I have noticed that my knees hurt alot! I am quite sure that this is not a problem related to MS. I am just too fat (An almost typical American ;-) ), and it is really starting to affect my knees. Blah. Wish I could lose some of this damned weight.

I've not had any symptoms return and I've been going steady with the Minocycline 100 mg Twice a day. I just wish I knew if my remission was due to minocycline or a typical MS remission. I guess thats the million dollar question eh?

Brock
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Postby viper498 » Tue Nov 06, 2007 8:52 am

Update:

So far so good... Nothing negative to report.
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Brock, Book Recommendation

Postby lyndacarol » Tue Nov 06, 2007 7:27 pm

viper498--You may want to read the book I mentioned in the Reading Nook, Good Calories, Bad Calories by Gary Taubes.
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Postby viper498 » Mon Nov 26, 2007 12:17 pm

Update:

Went to doctor last week for knee problems... Told him I wanted him to check my Liver Enzymes. He called me wednesday and said they were elevated again. Just went in again today for more blood tests, I guess I'll wait and see what those turn up to be.

I have had liver enzyme issues for the last five years. Some times they are up and sometimes they aren't. This is even pre-MS pre-Rebif. Not sure what is going on yet.

I am taking minocycline, 4000mg of Omega-3, 1000iu Vit. D, 300mg Iron (ferrous sulfate). I've done research on Minocycline, and it can cause your liver enzymes to be elevated. I wonder if this is the malfunction this time? Neither my AST or ALT levels were over 90 so they are just slightly elevated. I'll post my findings.

Brock
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Postby tory2457 » Wed Nov 28, 2007 7:07 am

Hi Brock,

All medications go through the liver so it could be a combo of Rebif and Mino..I have my liver checked each month as well.

Have you tried NAC? the good folks from the CPn Help site can offer you all sorts of reading about the benefits of NAC and the liver...

I take NAC (with vit C ) and so far my LE have been good..

just curious,,what type of knee problems are you having? and did you have knee problems in the past?

be well,
tory
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Postby viper498 » Thu Nov 29, 2007 1:47 pm

Tory,

My right knee is messed up. I think its always been a little messed up, but its been worse. THe problem is if I lay my leg straight, it flexes from right to left, and it certainly shouldn't do that. My doctor was really surprised to see this. My other knee hurts frequently, but it doesn't do that.

Brock
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Postby tory2457 » Fri Nov 30, 2007 7:40 am

Brock,

It sounds like your knee is a "herx"...or die-off! And this is exactly what you want.

If I remember correctly you are under a doctors care who has only prescribed Minocycline? imo, Mino isn't enough to eradicate all that is going on..

Mino works extremely well,,,,but I believe we need other abx in conjunction with Mino to get the best results.

I say this because "testing" is so UNreliable....we don't have the means to pinpoint each and every pathogen that I have or you have.
for instance,,,much talk of Mycoplasma lately- to name a few of the pathogens...that are believed to be part of this.

Have you "pulsed" the Mino yet?? A well informed doc would do that after a few months...

Pulsing is beneficial in "NOT" becoming resistant to the Mino..

I have been on abx for 13 months,,,,,my doc has never Just prescribed Mino,,,other abx is used in conjunction with Mino.

for instance: I am currently on Mino, Biaxin, and Plaquenil..

Last month I was on Biaxin and Plaquenil.. Month before it was Tetracycline and Flucanazole,,,etc.

Maybe Brock you might think about a doctor in your area who understands the infectious cause of diseases? such as a Lyme doc..at the very least, these doctors understand antibiotics.

I cross my fingers that you continue with Mino...and not look for a "magic" bullet. From the research I've read,,,,,it will take more than Mino to eradicate these pathogens. and unfortunately it's usually a long process.


:) tory
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Postby viper498 » Fri Nov 30, 2007 8:15 am

Tory,

As always I appreciate the information. I don't know what is meant by "pulsing". The doctor that prescribed it is my Neuro and it is a sure bet that he/she doesn't know much about infectious diseases or Lyme.

I really do not feel that my knee problem is at all related to a "herx" die off, but rather wear and tear and being over weight. The problem is very physical in nature. A knee should not be able to bend from left to right like that.

Remember, I am still not completely sold on the Lyme disease theory. I figure if I still continue to have problems while on minocycline, which is probably a good bet anyway ;-), then I will pursue the CAP protocol. I doubt that there is any Lyme literate doctors in my area either. Which means I'll have to travel a ways to get to one. I don't mind doing that, but I also don't have a huge amount of money to spend.

Also regarding MS, for what ever reason, starting last night, I have a burning sensation on my lower right leg and the bottom of my foot. I've had no other problems and now I fear that this may be the start of a relapse? I can't believe it!!!! I haven't even thought about it until the last two days and now I am having this slight symptom. Mind over matter? who knows. I hope it doesn't spread. I find the timing to be really interesting because I was just thinking about all of this in the last two days due to the "What works thread". *Sigh*

Brock
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Postby SarahLonglands » Fri Nov 30, 2007 8:56 am

Hi Brock, being someone with torn ligaments when still in my teens, due to cross country running, I think you are right about your knee problems. Loose some weight: our next door neighbour had to have two knee replacements and that was exacerbated by her weight.

You have reported doing very well on minocycline, so you should certainly keep with it. If you wanted to investigate infectious causes and try the CAP protocol, you might try getting either your neuro or family practitioner to work with Charles Stratton at Vanderbilt. That way you can stick nearer to home.

I hope it isn't a relapse, but I have had several periods of a burning sensation spreading out from my foot on CAP. With me it always lasted just a few days and heralded improvement, so I guess that was a die-off reaction, but from Cpn, not lyme!

Sarah
Last edited by SarahLonglands on Sun Dec 02, 2007 6:52 am, edited 1 time in total.
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 tory2457 » Fri Nov 30, 2007 12:05 pm

Brock,

Your questions are exactly the reason finding a doctor who is educated in Cpn and all that goes with.it..would be your best bet. There's so much to this.

You live in Missouri? if so, there's a very good doctor you could compare notes with. If you have ins you should be covered.

Lyme doctor's treat lots of MS patients,,, they have an understanding of all these pathogens. They do treat for Cpn, and Mycoplasma Puem,,and Babesia, Bartonella, Ehrlichia,,,,,

Most neuros and GP's don't have a clue! and frankly would be a waste of time.
of course, I'm sure there are some that do have open minds, but most will turn their noses to this.

Actually, when it comes to the CNS lyme doctors will be more aggressive,,,,,they will treat with Minocycline and something else.

I have to wonder if some here aren't seeing the success because treatment isn't agressive enough!

I have been on a much larger spectrum of abx,,,but also for longer periods of time. Then off to a different protocol...and so on.

but again, my doctor is treating me for lyme and Cpn.

I'll wager that your going through a herx,,die-off. I hope you continue with Mino and report back how things go.
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Postby CureOrBust » Fri Nov 30, 2007 3:33 pm

viper498 wrote:...it is a sure bet that he/she doesn't know much about infectious diseases or Lyme.

I really do not feel that my knee problem is at all related to a "herx" die off, but rather wear and tear and being over weight. The problem is very physical in nature. A knee should not be able to bend from left to right like that.
Should you not see a specialist for your knee? an ultrasound or CT (read by the knee specialist) may tell you exactly the cause.
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Re: Minocycline Self Study

Postby NHE » Sat Dec 01, 2007 8:45 pm

viper498 wrote:The problem is if I lay my leg straight, it flexes from right to left, and it certainly shouldn't do that.

My knee did that once years ago. But it was only after I tore a ligament in a skiing accident!

NHE
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Postby SarahLonglands » Sun Dec 02, 2007 6:52 am

There Brock, that makes two of us as well as you!

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 » Thu Jan 03, 2008 2:59 pm

Update:

Well, no relapses to speak of. All is fine. I didn't take Minocycline for a week or so because my script ran out and I have been so busy. I got back on it and have been pretty consistent. Sometimes I forget to take it, or sometimes I forget if I have taken it or not so I don't take it at all because I don't want to risk taking 200mg in one dose.

I think the only MS related symptom I have at all is a very slight warm feeling on my right lower foot and lower outside leg. Not noticeable at all when I have pants on, but I can feel it when lying in bed. It feels more like a remnant of the relapse that happened to me in February - March '07.

I finally went to an orthopedic surgeon about my Knee. He said that I have a deficient ACL. Apparently I hardly have one left. So I have surgery scheduled on February 21st and he will rebuild it. Its an outpatient procedure and should only take about 2 hours according to my doctor.

I just keep living and not thinking about what could happen to me in the future with regards to MS. I read everyone’s bad experiences and it makes me somewhat emotional sometimes. The ones that really scare me are the individuals that were healthy, and even after having MS for a few years were fine but then, all of a sudden, have a relapse that is terrible and then start going down hill from there. It’s not fair that any of us have to go through these things but I know life isn't fair. Although no matter what I do I always come back to this site. Its home base for me.

Brock
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