posted
Ok... I'm going to have to try and not get my hopes up but... I am so damn excited right about now!!! I was on doxy for six months and received little to no benefit whatsoever. I've been on mino for only a week and a half, and yesterday was probably the first day in almost TWO YEARS where I cannot recall having any sort of major headache... if I had anything at all, it was only minor. Plus, I just passed another big test... the sneeze factor. For the past two years, if I would sneeze, I would always, ALWAYS get a headache afterwards. Well just before, I had a massive sneeze, and guess what? NO HEADACHE! Well perhaps a tiny little amount, but I think it's related to the fogginess up there at the moment... but when I used to sneeze, I'd be in severe pain for about 20 mins after. Oh wow... I mustn't get excited, I mustn't get excited...
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
It is very encouraging to have some good days.
I recently had almost 2 weeks of being able to sit upright until about 2 pm.
I am not sure why. I did take the rocephin daily instead of 5 on and two off.
And I was in cooler climate in the mountains.
I only missed two lunches and two dinners during the past 2 weeks.
I even was able to sit up for the other meals for the most part.
Then I came home and had a one of those days I don't want to repeat again.
I am doing better now as I can lie on my back and open my eyes and type this.
Hears to hoping we get the right combo that works for us and regain our health.
Right now, I am just happy when I am able to sit upright more than I need to lie down each day and to be able to get out and about.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Good for you yippie
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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liz28
Unregistered
posted
Thank you so much for sharing your experience. I've been having the same one this week, and am thrilled to see this may not be a placebo or coincidence.
Almost two weeks ago, I had two silver amalgams removed from my teeth. My mercury toxicity symptoms got better, but I went into a neuro Lyme relapse that nothing could stop. In desperation, I started breaking up mino capsules (which my LLMD dislikes for some reason--the reason changes every time I bring the subject up) and taking little doses of 20mg twice a day.
This started last Friday. Within two days, I showed noticeable improvement of the neuro symptoms. Last night, I was at school, and literally forgot to take all my abx and supplements. I was busy reading something, then I went home, pulled out my pill container, and saw I'd skipped all these doses because I felt so great.
So far, there has been NO HERX (keeping fingers crossed, though).
lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
so happy you're feeling better rainmaker...
liz,
capsules arn't supposed to be broken up..youcan't measure the correct amount ..that''s probably why he was upset....you can't tell how much your actually taking... unless a pill is 'scored', or with a line down the middle of it, it means there is not an equal amount of the med inside anwhere..so even if you seem to cut it so it looks like you're taking 20mg, you could be getting all of hte medication one time in that small amount, or NONE of it in that small amount..there's no way to know for sure..it's unpredictable.
the only true way to know the dosage is to take the whole pill, or if you break a scored pill, one with a line down it..thaat line tells you there is an equal amount of the medication on either side of that line..otherwise when you just cut any pill in half that doesn't have that line on it, one 'half' could have the whole pill dosage on one side all squished together by the machine that made it, and there could be nothing in the other 1/2....
so he's probably concerned that your not being consistant in what your taking, and tht makes the spirochetes becomes immune to hte medication and get used to it, and become less effective ...
hope this helps
Lisa
[This message has been edited by lla2 (edited 08 September 2004).]
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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posted
Thanks all for your well wishes. My specialist has put me on 4 x 50mg (I started on 2, then went to 3) mino tablets per day... guess we'll see how it goes.
Why is it that I've read so many comments now about LLMD's NOT recommending mino? Is there something we should know about? I know that it is much more concentrated than doxy and has much greater lipid and BBB penetration, plus it will also put a greater strain on the liver... so I guess it is more risky, but what else? Liz28, the fact that your LLMD seems to be making up a different excuse each time sounds very dubious to me.
Lisa, you're probably on to something there about breaking the capsules up. However, one advantage we do have with the Bb spirochete is that it is a very slow divider, which means much slower generational change, which means (in theory) that it should not be able to adapt or become resilient to certain types of antibiotic as quickly as the other 'regular' bacteria that pervade our bodies. But this is only in my limited understanding.
Had bad acne most of my life, of course now my skin is clear, but if you can't get it and you got acne, see a dermatologist and this drug is usually there first choice in treating acne. Just a tidbit of info, some might be able to use.
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