I started abx (minocycline) this Mon, and have been on Samento for about 2.5 weeks.
I haven't felt this good since I was on prednisone (before I thought I had Lyme) back in August.
My W. blot is still pending, but my LLMD already gave me a clinical dx.
Anyway, each day, I've just gotten better and better. I'm working full days no problem, exercising, my thinking is getting more clear...
I don't mean to sound unhappy to be feeling so much better, I'm just confused and full of self doubt.
I started to feel sick in summer '07. Things had progressed to where all parts of my life were affected. My rapid improvement has me wondering if I ever really was that sick, or if I just inflated my symptoms in my mind?
Could this be a sign that I have something less serious?
Any comments or ideas are appreciated. I hope others who are in discomfort find relief, too, and hope this post doesn't cause any offense.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I just mentioned in another post a local woman said she has cured 90%+ of her Lyme symptoms (had it since Feb-07) with 25 days of Minocycline so sure it seems plausible.
Come to think of it maybe I better get myself on this miracle Abx!! Why not?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
That is so funny, because I am currently on Minocycline and Rifampin.
I started the Minocycline first, and felt great! I was waking up early on my own, it was like a miracle.
Then, when I started to add the Rifampin in, I became the sick version of myself again. I decided to stick it out a little longer on both drugs together, but I am tempted to just drop the Rifampin to see what happens.
My LLMD said he wasn't opposed to me just being on Minocycline.
It is interesting you had this same reaction to it, Wonko.....and that it wasn't just me! VERY interesting....
Who knows, but congrats and good luck!
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I told my PCP I was on Biaxin/Ceftin and she said she's never Rxed those for Lyme. She uses Doxy or Mino. I wonder if I would've done better staying on Doxy.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Well based on this thread, why would you pick Doxy over Mino?
I have also done extensive rounds of Doxy, and didn't feel better from it at all. That is why I was so surprised when on my second or third day of Mino I started feeling good.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
posted
Thanks guys, I feel almost in disbelief. I hope I continue to feel better.
I can still tell somethings are off, but the relief is so huge, I'm kinda in awe.
seek, I'm sure everyone responds differently to different meds. We all probably have our own unique mix of bugs and natural defenses. I hope your LLMD works with you to get you on the best plan.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
| IP: Logged |
posted
Hey, I felt GREAT on abx (doxy) for about three weeks, before I . . . . FELL OFF A CLIFF! Which only lasted for about four bedridden days, & then - better yet again! At about 7 weeks another backslide - less severe - and since that time (almost two years ago) it's been mostly slowly but surely better, using oral doxy or mino. I've had a few more minor backslides, interestingly, mostly in the fall.
I think you're on the right track.
Best -
otm
Posts: 314 | From east coast | Registered: Oct 2007
| IP: Logged |
Shosty
Unregistered
posted
Mino is great. There is also a natural rhythm to Lyme, that sort of waxes and wanes, and that intensifies with treatment, I think.
So, if you start feeling worse again, don't despair.
On the other hand, if you continue to feel more well, all the better!
IP: Logged |
posted
Thanks. Yes, I have always noted some oscillation in my symptoms. The swings have gotten bigger, and I'm on an upwards one now, but I know it could be precarious.
I'm optimistic, but realistic too.
I know it sounds weird, but the huge sudden improvement had me really thinking I must have been nuts, I must have never been sick. I think I was physically in such bad shape that got all my attention, so my emotions are out of shape, if that makes any sense.
I feel better about things now, thanks for the replies.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Strange that you should mention Mino. My LLMD mentioned putting me on that antibiotic next. Said it worked well for some of his patients. I sure hope it will do for me what it is doing for you.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Minocycline crosses the blood brain barrier and exhibits an anti-inflammatory effect.
Verification that inflammation plays a very big part in causing symptoms.
Minocycline was one of the first abx that my LLMD used on me and it made me VERY sick. Increased my liver enzymes and caused hyper-pigmentation. Very powerful abx.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Minocycyline is a neuro anti inflammatory.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
posted
I think my LLMD did pick it specifically because of the properties above listed: it crosses blood/brain and is anti-inflammatory.
I have lots of neuro symptoms and brain lesions on MRI, and my CRP and SED rate are both high. I'm still waiting for my blood results for W. blot and co's.
Like I said, I haven't felt this good since on steroids, which are also strong anti-inflammatories (though NOT appropriate for Lyme, as I later learned)!
Today I'm not quite as mighty as yesterday, more stuttering and struggling for words and more fatigued, but I'm still above my usual baseline!
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Well unlike steroids it won't suppress your immune system and will kill bacteria (though could cause yeast issues longterm?) Also samento helps with toxins.
Good for you!
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Wonko,
Congratulations and glad to hear it.
I too was very fortunate to start treatment in May of 08 (contracted lyme last fall) and continued to get better from the start of treatment, with a few small set backs.
I often questioned it because so many have horrible herxes and I didnt. (I learned quickly how lucky I was/am)
Its really wonderful to hear positive results. Heres a big applaud for you!!!
Posts: 1127 | From atlantic city, nj | Registered: May 2008
| IP: Logged |
posted
Glad you're feeling well so fast. Since Minocycline is one of the abx. that has a significant anti-inflammatory effect as well, it is probably due to those effects, I'd imagine. Whatever it is, enjoy the benefits!
Posts: 371 | From CT | Registered: Jun 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/