Feel like hit with a bat

[kc]

Hi all,

I started the minocycline 5 days ago. (100mg the first day and then 50mg from then on). By day 3 I felt like my body had been hit with a baseball bat, especially between the shoulder blades. I am also very tired, but the good news is that my son is in school all day now so I can rest when needed.

I just don't get it 3 days into it and I can feel it. Does this mean my bacterial load is WAY high? I am always soo sensitive to things.

Now for the good news. One of my first ms signs was an inability to urinate. I have had to catherize myself since 1997. During the last couple of days I have been able to urinate about 3/4s of the way without a catheter!!!!!!!!!!!!!!!!!! Believe me this is big, the only time I ever had this happen was when I took Venus Fly trap (Carnivora). I stopped it though because I couldn't tolerate it.

That has given me more drive to continue.

karen

[Katman]

Karen

That IS a big thing! I certainly am not a doctor but it sounds like it has been 7 or 8 years for you. The only caution I have is be sure to do the "Flagyl thing" when it is time. That apparently is what kills the bacteria and if you leave them stored in your body they will return with the vigor of those released from the prison they were put in.

Keep reading and learning about this dragon that we are beginning to slay.

Rica

[SarahLonglands]

Karen,
If you want to treat MS as an infection, you must do it properly. To start with, take two abx which work in synergy to avoid the build up of resistance. This means mino/doxycycline and azithromycin in the first instance. Flagyl will come later.

If you and your doctor are really unsure about things, email either my husband or Charles Stratton. It doesn't matter what country you live in. If you want to email me first, you click on the button at the bottom of this posting. I can then point you in the right direction. You seem to be sensitive to many things. I was before treatment but am now much less so, so it is worth sticking with for this, quite apart from the MS. I'm sorry, I didn't notice your postings before: I must have been too busy, so please write!

Sarah

[ljm]

Is it correct that if you delay the flagyl there may be a re emergence of CpN which will be exacerbated (i.e. worse than before).

If yes, I'm assuming carrying on the treatment any further would be useless.

The fact is, I have been taking minocycline and zithromax but have only (as it would happen) started flagyl today. So its been 4 months since starting the regimen.

Would particularly appreciate a response from Sarah, if that is possible.

[Daunted]

What you're doing is fine!

I'm sure Sarah will chime in but I am sure I have read that Dr. Wheldon is in fact waiting for 3 or so months to introduce Flagyl these days.

[SarahLonglands]

Hi Lizz,

I was tucked up in bed, fast asleep when you posted.

No, the re emergence only happens if you stop all abx without either having used flagyl or not taken the other stuff for long enough. You could feasibly eventually rid your body of CPn by never taking flagyl, but you would need to take the other abx for years and years. The minocycline and zithromax you are taking holds the CPn in stasis. It will eventually be flushed out of your system as your own body cells are replaced. This takes a long time.

Daunted is correct about David waiting a minimum of three months before starting the flagyl. He always has waited that long, he did with me, but now, with some people he judges it best to wait up to six months, so don't worry at all that you have missed the boat.

Sarah

[ljm]

THANKS both Daunted and Sarah. I do remember hearing something similar from you a few months ago, thats why I wasn't rushing the flagyl...but a recent post got me alarmed that I had seriously screwed up. Another question (sorry if I'm hijacking this thread) is there any speculation on why ABX does not appear as effective in PP or SP forms (speculation via research or offline via personal reports).

[Katman]

Let's hear a definition of effectiveness. I have not heard that abx is not as effective for PPMS. Since I have improved SO much, and I am PP, I will have to see a comparison of the (presumably) RR and ?? people who have a much higher or even somewhat higher level of recovery than we do. Explain, please, to those of us who don't know that we are not supposed to raise our level of function beyond ______.

Rica

[LifeontheIce]

I have to support Katman. Sarah and I are SPMS and we are asymptomatic being once in very bad shape.
Barbara

[ljm]

I apologize, I thought I had read that ABX appeared not be be effective in PP, and possibly effective in early SP. Believe me, I am very happy to be corrected on this, and hope the good results will continue.