Topic: How have people ramped up on Minocycline? (most replies don't say how they did it)
Rumigirl
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posted
[I'm bringing this up again, as I want to hear what ways others have been successful in ramping up and tolerating it. I am not one of those lucky people who have no trouble with it.
{I just added that in the title, because most repies were from people who didn't have trouble with it, or couldn't tolerate it. I'm trying to figure out how to do it successfully---hopefully}
I began taking it last Monday at 25 mg (1/2 capsule) once a day, only late at night, due to becoming out of it and having worse balance issues from it.
I seemed to do sort of ok at that level, although it was hard to tell, because I WAS out of it and had more balance issues, but also was having trouble getting enough sleep, due to other stresses, so thought that was the reason
When I went up to 50 mg late at night, I had migraines or bad headaches in the am, and have been severely out of it and ready to fall into walls, etc : - ( Today I felt like I was on LSD or some other drug----sigh. Tonight after 25 mg, my balance is worse. I guess I need to go much slower yet. Suggestions/experiences?
I am taking NAC, etc. with it. I need to do more detox, too.]
I only tried one or two doses of minocycline once years ago. I was given 100 mg mino (+ rifampin, if I remember right). I took them both at once, if my memory serves me, and could barely walk!!
Now I think I should try mino again to see if I can slowly ramp up on it, so I might be able to tolerate it. I thought I saved some posts about slowly ramping up, but can't find them.
How have people who can barely stand up on it slowly ramped up successfully (I hope)?
I was thinking: use 50 mb caps once per day at night (when I don't have to walk around/function much).
When that is tolerable, take 1 twice a day, when that is tolerable, 3 times per day, and work up to 200 mg total, if I can.
[ 09-26-2014, 11:57 PM: Message edited by: Rumigirl ]
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droid1226
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rifampin knocks most people on their a$$. mino, i started with levaquin but the mino is 300 daily. no ramping. no problems yet.
GretaM
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posted
Agree with droid.
I just started full dose of mino. No probs except a slight increase in torso twitching around day 4-day 6.
Rifampin...whew! That one was tough-and I went super slow on that one.
My doc recommended staying at the same dose for 7 days with rifampin, then slightly increasing dose.
If you tend to herx with most abx, maybe that 7 day approach could work for mino?
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Keebler
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posted
- Liver support is required to help protect the ears / vestibular effect. That trouble walking is likely due to that.
GINGER capsules (in the therapeutic dose, not just a bit here or there, continual) & B-6 is also important - in addition to a good coverage of basic liver support.
There are several posts here about this very thing, minocycline's inner ear / vestibular challenges (it is ototoxic so protection, again, is "required" and what can help.
Tinnitus / ear link coming - I hope.
Total contents of my "health" folder just disappeared. It's empty. If that's gone, . . . well, time for a cup of green tea and a scream (modulated for my ears, of course!).
I have no idea how to find something that is just gone, folder there, no one's home. Nothing I do brings it up. -
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Rumigirl
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posted
I'm not as worried about the herx, although there may be one, as the SIDE-EFFECTS, which are immediate----my balance and being out of it was extreme and immediate. Many others have noted this side-effect.
Thank you, Keebler, for noting it. It especially seems to affect women this way, maybe because they are smaller.
I already have balance and perceptual problems thanks to TBD's, so it's not a small issue. In fact, I have had A LOT of terrible falls i the last year or so, the last one lead to a major injury and a very major surgery (from which I am still recovering).
Now that I write this, I have to think about whether this is a good idea! But my thought was to try to very, very slowly see if I can get beyond this side-effect, so that I will have something to take in the summer. Plus, it penetrates the brain so well, which I desperately need.
BTW, I did manage rifampin by ramping up very, very slowly. I have to admit, it was terrible for a while!!! Thank you.
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Keebler
Honored Contributor (25K+ posts)
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- I could not continue with minocycline due to the falls. I also deal with a lot of balance, inner / middle ear issues. No matter the cause (and wanting to go after that), if anything makes that worse, it may not be a good bet.
I tried many times. It was my "last hope" (well, I've since found others.) But it caused me serious falls, torturing vertigo. All my supports did not matter to MY ears.
Yes, it has good brain penetration. However, Minocycline can very vestibular toxic. It could be that some have damage there, first. I have a "hole" in some of my circular canals. So that could be part of why I just can't touch any ototoxic or vestibular toxic medicine.
But if the liver and kidneys are taxed to the max, the ears can be damaged. The inner / middle ear system is the first body system to detect toxins. That's why MCS (fake scents, chemicals) seems to clobber, too. Right to the balance system.
I'm not sure what support methods you had in place first, though. If none, perhaps backing up and getting the vestibular protection going first, then try again?
I certainly understand your wanting to try it, work through this. With the right kinds of protections for your ears, it may settle down.
Some do okay with this, some really don't. But be sure to have the very best protection in place. All of it.
But, if not, be mindful that there are still other options. I hope you can find that Tinnitus thread because there are "required" things to consider when taking minocycline.
IMO, for those with ear / vestibular issues where ototoxic meds pose a risk (and the supports are not working so well for them) . . . RIFE may be the best approach, or with a LL ND and something like Zhang's protocol with Allicin, etc. -
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Judie
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Mino was awful for me. I couldn't stand or sit up. I was stuck laying on the floor trying to will myself up.
After a week of this, my neck swelled up and I was allergic. My body never got use to it.
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Keebler
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Member # 12673
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- My computer guru just helped me find my lost files (Yippee!). I know there is a lot here so you may have scroll a ways to find the minocycline posts.
Best of luck to you. I hope it all works out very soon so you have some smooth sailing.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Rumigirl
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Oh, what a balancing act this---and trial and error all the way.
My doctor today said to start with 1/2 of a 50 mg capsule, which I will take late at night.
Yes, Keebler, I, too, have not only a lot of balance and perception issues, thanks to TBD's, but as do you, and lot of ear problems, and in my case very bad hearing (I need to get hearing aids).
The balance issues are especially ironic and hard to bear, as I used to be a professional dancer!! Dancing, skating, swimming, biking, doing yoga, etc., etc. were my greatest joys in life.
It is really hard that so much has been taken away from me, but most of us here know that one all too well----as do you, dear Keebler!! (Did you see my response on your post about Bill Cunningham?).
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Keebler
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- Yes, Rumigirl . . . I probably just didn't know how to phrase a response.
But, I love Bill Cunningham. My clothes are a disaster . . . no way to really have laundry washed so I wear only what can be rinsed out and hung in the shower.
I don't go anywhere so, that's okay. But, I love the irony of delight with dear "Bill" and must giggle over the prospect (not right word) of how the (former) 20-year old me would react to my "okay-ness" of managing.
I do have a spinner that will zoom out water from hand washing and then the whole apt. has rods everywhere . . . my entire wardrobe takes days to dry (pure cotton, so I thought that would dry fast but does not) but it's so good that I have that.
Still . . . and this is all about the irony I enjoy each week when I "spend time" with "Bill" -- I'd like to be able to go out and have a nice meal sometime and he would be a top choice just to be around that sheer delight of his with anything fun.
I do think color, style can really lift us. And many of the themes he highlights are just from a regular person's creative use of what they have. Hmmmm. Wonder what I might come up with.
See, that's why I did not leave a reply to your comment. I just can't stop when Bill Cunningham's exuberance is on my mind! I think he'll have another video tomorrow (I think). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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My MD prescribed it when my pharmacist couldn't get Doxy and I had suffered another suspicious tick bite.
Doxy makes me extremely sun sensitive. I still have scars from my last go round with it.
I couldn't even get within 10 feet of a window.
No major side effects with Mino at all at full strength except stomach upset if I take it for too long and mild loss of balance. Nothing I couldn't live with.
Make sure and take your pro-biotics pre-biotics religiously while you are on it, yogert, etc.
Really kicked neuro symptoms for me.
-------------------- Why don't they make Front Line for humans? Think about it! Posts: 78 | From North Eastern Missouri | Registered: Oct 2009
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Keebler
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- Nemo,
Glad you mentioned how well you did. There are a few who do just great with minocycline and I always wonder if there is something they just do differently than those who get the vestibular clobber -- which is way more than just the mild balance issue you describe.
My vision (thanks to inner ear) would not settle. It was as if the room was flipped most of the time. But my ears a mess to begin with.
If there is anything that comes to mind that may have been unique to your plan at that time, it might be of help to mention it.
For instance, B-6 is supposed to help soothe the vestibular clobber and nausea. But they found that out just because a few tried that and it really helped them.
I would love to know what else might make a difference. I wish I could have continued with it but it was just impossible, even with many tries. Others with this same effect would also be glad to find something to help, too.
To start with, was your inner ear / balance system really good as you started minocycline? (Maybe it's just tougher in those whose ear / balance system is already compromised?). -
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Judie
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For me, I didn't have any balance issues before trying minocycline.
It was the first time I was infected with Lyme and I was treating early too. My only symptoms were the rash, increase in allergies and fatigue prior to mino.
Posts: 2839 | From California | Registered: Jul 2012
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posted
I ramped up on Mino from 50mg every other day all the way up to 200mg a day.
Unfortunately I can't tolerate full dose for too long so I tried cutting back to 100mg for about 2 months. That didn't seem to be helping so now I do pulse it at full dose (200mg). This way I can at least have a couple days a week which aren't dreadful.
I do think it's chipping away at things, but slowly. No quick gratification here on this journey.
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Rumigirl
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Member # 15091
posted
up
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Rumigirl
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posted
Up for more replies. I'm still struggling with it.
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posted
Im pulsing it right now. Just one dose monday-Friday. Then weekends off. Next week im gonna try two doses monday through Friday, I dont have as many appointments so dont really have to do much driving.
How do u take it?
Posts: 908 | From Albany | Registered: Nov 2008
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posted
Im pulsing it right now. Just one dose monday-Friday. Then weekends off. Next week im gonna try two doses monday through Friday, I dont have as many appointments so dont really have to do much driving.
How do u take it?
Posts: 908 | From Albany | Registered: Nov 2008
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Rumigirl
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posted
I'm taking 25 mg (1/2 of a 50 mg capsule) once daily, at night (so the vestibular effects won't bother me when I have to go somewhere).
When I tried upping it to the whole 50 mg capsule, late at night, I had migraines or bad headaches in the am, and was severely out of it and ready to fall into walls, etc : - ( The next day I felt like I was on LSD. Then after 1 day off and going back to 25 mg, my balance was worse.
So I took a night off from it again, then went back to 25 mg. My hope is that if I go slowlly enough, I can work my way up. I did that with rifampin, which I am not on now. The rifampin was a rough ride until I had slowly gone up in dose, toughing out the side-effects/herxes.
I'm not on anything else right now, which isn't good, as I've backslid from being off treatment for a while in order to retest some of the pathogens.
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Rumigirl
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quote:Originally posted by jlcd1: Im pulsing it right now. Just one dose monday-Friday. Then weekends off. Next week im gonna try two doses monday through Friday, I dont have as many appointments so dont really have to do much driving.
How do u take it?
jlcd1, what dosage are you taking? And did you start with a full 100 mg dose? If so, did/do you have those side-effects of your balance being off, and being out of it?
Thank you.
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posted
Ill send u a pm with my dosage, but yes I do feel off balance especially at night a while after I take it.
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Rumigirl
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Thank you, jlcd1, I'll answer your PM soon.
up for more replies.
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Rumigirl
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Well, I went up to 50 mg only late at night, which makes me out of it and balance off after it. But the next day---OMG, I am soooo out of it, despite detox. Well, maybe I need to do more detox, but there is only so much I can do!
I'm recovering from a horrible fall, hamstring ruptures, major surgery, and recovery. Plus, my back is horrible from all this, Sigh.
What a mess. This mino is unreal. We'll see how much I can tolerate. I'm only at 50 mg once a day for Pete's sake! I don't see how I can ever take it in the daytime---unless I can slowly, slowly work up. Arghh.
It's the only treatment I'm on righ now, which is NOT sufficient. I'm supposed to take tinidazole with it, which I do tolerate, but can't add that until the reactions from the mino subside---if they ever do.
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It certainly makes me feel more wobbly overall; standing up funny, running into doorways. It's quite an annoyance, but I put up with it in the hopes that it means it's working in my CNS.
I haven't reached any point when I'm on it that I feel relief yet. I'm going to give it another month and then switch off.
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surprise
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I hated Mino. It was one of the last antibx I did, so whatever Lyme I might have had left, it was at a very low count, and Bart,
my point being I really believe it wasn't a herx, but the drug itself. Yes, dizzy all the time, and just- hated it. Didn't ramp up. Did it 4 weeks, then said forget it.
Sorry it's not working out- can you switch? Hang in there---
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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GretaM
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Rumi-just thinking out loud here.
What if you stopped mino...started taking tinidazole.
Tinidazole kills ketes rounmd bodies and protozoa.
Maybee if the tinidazole knocks some of the bacterial load down... When you take mino, your body will be better able to cope with the side effects?
Yours is definitely NOT a herx. It is for sure a side effect.
Sorry you are struggling so with the mino.
I agree, detox detox.
What methods of detox do you currently do regularly?
My doc gave me "the talk" about regularly detoxing with binders and I've been good with it for about 4 months now.
Am wishing now I was more regular with the detox back when I was on 5 abx. Haha. Coulda saved many tears from the head pain.
Anyways, hope you're doing OK today.
Greta
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Rumigirl
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I had to go back to 25 mg only at night again (for the second time). Yesterday, I was in such bad shape from 50 mg the night befor, that I had to do IV glutathione (which I have to do almost every day anyway), etc., etc.
I still couldn't leave the house until the sun was setting (on a gorgeous day that I had missed entirely, as almost every lovely day. I could only go hanging on to my husband, because I was so out of it, and my balance was horrible. Even that way, it was very, very dicey.
That was from the 50 mg the previous night. Can the side-effects of the mino last that long?? Or at that point, is it die-off?
I don't see how this is going to work. I have so much PT to do to rehab my hamstrings and for my back. I have to be able to get around. And it is very, very dificult to do that because of my hamstrings anyway. No way could I get around the way I was whenever I took 50 mg the previous night.
I'm only at 25 mg at night, or 50 mg, when I can afford to be that out of it the next day. And I'm really out of it for many, many hours after 25 mg the previous night!! In spite of IV glutathione, etc. Arghh!
Greta, I think you are right; I should probably can the mino and just take the tinidazole. But first I will try the mino a little longer. Sigh.
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canefan17
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For those who take 1/2 of the 50mg capsule... how'd you do that?
Pop the capsule open and pour it into water?
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Pocono Lyme
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Mino with Rifampin was one of the toughest combinations I've done.
When Doxy at 200 mg nearly killed me, LLMD decided to do Mino (starting into the summer).
I did 50mg every other day and it was still rough. I wasn't safe walking many days. I wasn't prior to this combo but it was worse.
I did manage to get to full dose in about 6 months. At one point, I read someone's post here about doing better on full dose and that gave me the motivation to just do it.
I'm not saying to do that at this point as you're obviously not ready. I think I did it when I was up to maybe 100 mg daily.
I think I initially did 50 every other day, then 50mg daily, then 50mg one day 100mg the next, then 100 mg daily,...
Before doing this combination, I felt like I needed an alignment like a vehicle as I was "pulling to the left". Walking into walls.
When I started the combination, I started pulling to the right. It put me down a lot but was worth it in the end.
I feel for you.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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