Well haven't been on in a while, but wanted to update all.
I have been off IV for 6 weeks and I currently am on Mino,Zithro,Bactrim,Malarone and Tindamax.
To be honest with everyone, the straight year that I was on IV, I felt no difference.
To me it seems like Mino is one of the better ABX out there.
I have been on IV Doxy,Penicillin,Zithromax,Tygacil,Clindamycin, Vancomycin and Invanz and felt nothing....
I don't know if it is the freedom of not having to do IV 2x a day that makes me feel more sane or the fact that maybe Mino is the key.
I still have the port in place (not accessed) so if the doc and I feel it is necessary to go back on IV, I can.
Well I don't know where I am going with this, but figured I would let everyone know whats going on.
The Zithro is a really high dose and I DO feel it! My ears mainly.....
I can't say I am feeling any better, but I think my morale is up!
Posted by radfaraf (Member # 11909) on :
How does it feel in year ears? I get tightness so bad that I won't try it again with Zithromax. They get really sensitve and start hurting and ringing from louder enviroments like a movie theater.
Tried Bactrim recently and got the same effect after just 4 days .
Posted by Hoosiers51 (Member # 15759) on :
So the mino is or is not helping?
Is it making you herx, you mean?
Because you seem to be saying mino is better for you than the IVs, but then you say at the end you can't say you're feeling any better. So I'm confused!
Posted by Kreynolds (Member # 15117) on :
radfaraf,
They get really sensitive and get the ringing in the ears...
Hoosiers51,
I am not sure if it is making me herx. I feel no difference between IV and oral is what I meant.
I can tell you that it is very strong stuff.
Sorry about making you confused, I was just making the point that the IV was a pain and the Oral Mino seems to be having a better effect.
Posted by njgirl14 (Member # 14174) on :
kreynolds
i am on a similar protocol mino, zithro, mepron and will probably add bactrim in next.
what is your dosage of mino and zithro?
Posted by Kreynolds (Member # 15117) on :
400mg of Mino and 1200mg of Zithro a day
Posted by hope4sofia (Member # 20577) on :
I'm sorry, I'm still an newbie. What is Mino short for?
Posted by Kreynolds (Member # 15117) on :
Minocycline, it's a tetracycline, like doxycycline...
Hope that helps!
Posted by Rumigirl (Member # 15091) on :
How is the sun sensitivity issue with the mino?? I know it is supposed to be less than with doxy, but it seems so extreme with doxy!
I want to switch from doxy to something that doesn't cause the sun sensitivity for the summer. I'm on the doxy for a recent tick bite (again?!) and as an additional abx to rocephin.
Posted by Kreynolds (Member # 15117) on :
I was on IV Doxy and oral Doxy and the sun was unbearable.
I had to live like a hermit. With the Minocycline it doesn't bother me as much.
I am able to stand in the sun for a long period of time unlike with the Doxy.
Posted by bettyg (Member # 6147) on :
ROY, WELCOME BACK !!! we were so worried about you and you hadn't posted on your caring bridge site too.
PINELADY wants to hear from you; perhaps pm her and include your link here; she asked that i contact her but i have to dress & leave in minutes for a funeral.
again, THANKS FOR CHECKING IN !!! hugs/kisses to you and special katie and son!
Posted by nenet (Member # 13174) on :
Hi Kreynolds, glad to see you back and doing ok (considering). Glad you aren't struggling with IVs at the moment, since you mention they have been a pain.
I am confused by your posts about minocycline, though, and am hoping you can help a brain-fogger out hehe. What do you mean by this?:
quote:Originally posted by Kreynolds: To me it seems like Mino is one of the better ABX out there.
...
the Oral Mino seems to be having a better effect. ...
I can't say I am feeling any better
...
I am not sure if it is making me herx. I feel no difference between IV and oral is what I meant.
To try to clarify my question, what is the effect? and why is it a better effect? When you say it is better, or effective, but yet you aren't feeling any better, what do you mean? Do you mean you think you may be finally herxing? But then you say you feel no difference between your IVs and the mino? I know that was a mess of confusing questions, I apologize.
I took mino for a while but had to stop since it was causing massive herxing and then worse, but I am always interested in how others respond to it, because it was effective for me for a while (meaning I had a herx and improvement pattern). Thanks in advance for your patience! [insert bonking over my goofy head with mallet emoticon]
Posted by Kreynolds (Member # 15117) on :
nenet,
Sorry about the confusing post. It was late at night and I was in a zombie state.
I was trying to say that the Mino seems to be hitting me the hardest ( all around).
I get small herxes from it and never have for a long long time.
I was also stating that in my opinion, it is one of the best ABX out there.
Although I don't feel any better, I know its doing more than the IV meds were.
Also the freedom of not having a PICC in or an accessed port is enough to brighten my day.
Does that help? Posted by nenet (Member # 13174) on :
Yes, that really helped, thank you! I am very glad to hear it is having an effect and making you herx. For many it is too effective and makes them herx too strongly (like me), so I can absolutely see where you are coming from, that it is finally making you herx.
As I understood it from my LLMDs, Mino has the best BBB penetration of the tetracyclines, at least of the oral forms.
Good luck with your continued treatment! I think I recall my first window of feeling a little better happened a few weeks after beginning treatment with mino. But again, I was on super tiny doses - 25mg every 3 days was all I could handle.
That window was a day where I actually managed to go with my husband to the store in the car, and then walk through the giant grocery store. This was my first time being able to do something like this in years.
Posted by 2roads (Member # 4409) on :
Can children take Mino or is it a teeth discoloring issues like doxy?
Thanks-
2roads
Posted by njgirl14 (Member # 14174) on :
kreynolds
wow those doses are much higher than mine. i am sure i am low at 200mg mino, 500mg zithro iv, and 2 tsp mepron a day. i tried to go up to 1000mg zithro oral and herxed extremely hard so had to back down.
glad you think this combo is working.
Posted by Kreynolds (Member # 15117) on :
2roads,
How old are your children?
My son is 3 and has Lyme and Bartonella and was prescribed suspension Zithro.
I think most pediatric LLMD's start with the Zithro because many of the ABX's are too strong for them to handle.
njgirl14,
I am on 400mg Mino, 1200mg Zithro, Malarone 500/200, Bactrim DS, Artemesia etc.....
Beleive me, I feel it... The Mino and Zithro combo are enough to knock me to the floor!
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