I'm only on 100 mgs and feel horrible (meaning, I'm still the same as I was when I started). I've been on it about 5 weeks. My doctor is adding Zithromax next and said I would stay on 100 mgs for the time being.
Has anyone taken only 100 mgs and noticed a difference, or do you really need 200? Every time I increase the dose I experience dizziness for about 3 weeks and increased anxiety too. I don't even know if I can make it to 200.
Thanks,
brooke
Posted by Tincup (Member # 5829) on :
Hey Brooke...
As you know we all are different.
I could only take 10 mg of mino every other day... so 100 mg daily is a lot. And that was the ONLY antibiotic I was on.. not a combo.
So you are taking a hefty dose as far as what others can and do take.
You don't have to be nasty to your doctor.. but be firm. If you get worse with a higher dose.. they need to know. We don't want you weaving and falling and feeling sea sick all the time.
And...
Don't be talked into something you know will make you bad. I've done that before because I didn't want to be on the street without a doctor.
Now I don't do that. Nearly kilt me to do more meds than I knew I was able to do.
Never again.
Hope you feel better soon... little baboon.
Posted by lymielauren28 (Member # 13742) on :
Hey Brooke,
I'm supposed to work up to 400 mg of mino, but I don't know how in he world I'm gonna do that!
100 mg makes me worthless and when I get up to 200 I feel like I'm about to die.
Mino is one of the toughest drugs to tolerate herx-wise, but also one of the most effective orals from what I hear.
Lauren
Posted by METALLlC BLUE (Member # 6628) on :
The key to Mino from my experience is going up in 25 to 50 mg increments over a period of a month or two to reach 100 then 200 and so forth. The doses should be incrementally increased in this way to also prevent a strong Herxheimer reaction.
I'm not certain this will work for "everyone" but the logic is consistent with what I've observed in others. Minocycline is bacteriostatic, meaning it won't kill, it'll only slow the infection down unless the dose is very high, 200mg or higher.
However, doctors are inclined to only have patients start at small doses with such a strong drug that can cause the sharp side effects of vertigo and dizziness.
Posted by VB (Member # 16824) on :
Hi there,
I started mino at 300 mg right off the bat. I didn't experience significant herxing (at least nothing worse than in the past with other meds), but DID experience really bad nausea and dizziness.
You know the feeling that you get when you've been on a cruise for a few days and then try to walk on land, but you still feel like you're swaying with the waves? That's kinda what it felt like + nausea.
I have to take with food, even though you're not supposed to.
For me, Zith (in addition to Mino) made my stomach issues worse.
I could't tolerate it at all and did MUCH better (both with my stomach and with symptom improvement) on Biaxin.
Note that I had been on other types of abx for at least 6 months prior, so that might have been the reason for the minimal herxing.
Posted by disturbedme (Member # 12346) on :
I started on 50mg every other day and it was tough. Gave me awful neck stiffness that I NEVER had before that.
Posted by Keebler (Member # 12673) on :
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Brooke,
Sorry to hear it's so rough.
Some people do okay on mino - or zithromax - or both.
Others experience varying degrees of dizziness from either one of them. Sometimes it gets better. If you find that it's very tough, be sure to ask your doctor if you can switch to another plan.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links
=======================
The Road Back Foundation at www.roadback.org may be a place to see what helps others. I talked to someone there a while back and they said that the pelleted, time-released MINOCIN was easier for some.
========================
This book, by an ILADS member LLMD, holds great information about treatments options and support measures:
Medication should be distributed according to your weight.
I am on 100 mg of mino a day for the next 6 months. I feel like crap. I hope that is a good sign!
Posted by dmc (Member # 5102) on :
I was on Mino 100mg 2X day and Diflucan 100mg 2X day for over a year.
I wasn't told to start slow at all...I'm a MS type lyme patient so probably just had to "go for it".
Posted by brooke (Member # 16606) on :
Thanks to everyone who replied. This is the only place I know to get reliable information.
I forgot to say that I got a migraine exactly 4 weeks after increasing the dose from 50 to 100 mgs and my doctor just said it's a herx reaction? My neck is really stiff too (thought it was my pillow). She said to back off until the migraine goes away. It's odd because nothing helps it - Excedrin, Advil, caffeine, etc. It lasts all day and all night. Imagine trying to put a Lego castle together with a 5 year old in this state. Ugh.
I think she plans to increase the dose by 50 mgs every few months. If I have to suffer in order to get better I'll do it, even though the brain fog is so thick I feel like I'm on the verge of a mental breakdown.
Thanks everyone!
brooke
Posted by Keebler (Member # 12673) on :
-
Are you taking magnesium? That should help decrease head ache. You can take it to bowel tolerance and then back down a bit.
Fish oil, too.
And liver support.
The excedrin, advil and caffeine can all put further stress on your liver and that, in turn, can make a herx worse. That may be why they don't seem to be working for you.
Good luck with all of this - and the legos, too. Are there some playmates that can be called in for your daughter - old enough, though, so that you can rest?
If you have family - or a neighborhood or social network - or are a member of religious group - perhaps you could build a group of people to help you get through this and your daughter may just think she is very popular.
=========
Measures for pain management are discussed here:
This book, by an ILADS member LLMD, holds great information about treatments options and support measures:
I'm a little better today. It's a dull headache instead of a migraine. I'll restart the minocycline in a few days. Must be powerful stuff.
brooke
Posted by pab (Member # 904) on :
quote:Originally posted by brooke: Thanks to everyone who replied. This is the only place I know to get reliable information.
I forgot to say that I got a migraine exactly 4 weeks after increasing the dose from 50 to 100 mgs and my doctor just said it's a herx reaction? My neck is really stiff too (thought it was my pillow). She said to back off until the migraine goes away. It's odd because nothing helps it - Excedrin, Advil, caffeine, etc. It lasts all day and all night. Imagine trying to put a Lego castle together with a 5 year old in this state. Ugh.
I think she plans to increase the dose by 50 mgs every few months. If I have to suffer in order to get better I'll do it, even though the brain fog is so thick I feel like I'm on the verge of a mental breakdown.
Thanks everyone!
brooke
Brooke,
Mino can cause increased intracranial pressure and you can get really bad headaches. I just started Mino (50 mg) and I'm hoping my intracranial pressure doesn't get any higher. When it gets high, I feel pressure in/behind my eyes, the base of my neck, and in my back.
I take Diamox when the headache gets bad.
Posted by onthemend (Member # 13454) on :
Same as VB, plus stiff neck like disturbed. I started at 200 mgs, went up to 300 mgs.
It has helped my mental issues AMAZINGLY. I have had some side effects, but nothing I can't tolerate, and the improvement in what I always call my 'higher level thinking' + energy has been just great. Prior to that I took 400 mgs doxy or doryx for many months.
The sometime dizziness/motion issues/nausea/ear ringing is not great, but I love the other changes it brings me, so I've stuck with it. I did experience headaches for about the first month, they did taper off and now I really don't have them at all anymore.
Hope it works out for you.
Best -
otm
Posted by brooke (Member # 16606) on :
otm,
That is encouraging and I really need encouragement right now. I am determined to stick with this.
Do you remember when you started feeling better? My main symptom is the brain fog (I'm so out of it I feel like I'm going crazy). I also have short-term memory problems. This has been going on since 1993.
Thanks for your reply!
brooke
Posted by onthemend (Member # 13454) on :
Hey Brooke, by the time I was originally diagnosed & treated, I'd been sick for about 1 1/2 years and was essentially bedridden. The physical symptoms were horrible - all the classics at a very extreme level - and the mental ones equally bad. It was actually cognitive/memory loss issues that threw up a HUGE red flag for me.
It took me only about 2-3 weeks on doxy to get out of bed and start functioning pysically - sort of! - again. I had tough backslides at about 3 and 6- weeks, then lesser ones thereafter - I suppose those might be herxes, or wax & wanes, Cheryl-style. But the point is, after 1 1/2 years of continuously deteriorating health, there was an almost IMMEDIATE change for me with abx. I don't mean cured, I just mean, I coud feel the brakes going on in my downward health spiral - I literally felt it come to a screeching halt. Which is different than feeling better, though!
The brain was a lot slower, I'm sorry to say, Brooke! And a lot more subtle. I'd have to say about 7-9 months for reading again with any level of comprehension (I was a voracious reader, maybe 2 -3 books per week in my prior life!), just now (2 years into treatment) I am back to multi-tasking and actually remembering random, helpful stuff, and I must admit I still cannot add/subtract/multiply/etc with any facility. That will mean more to you if I tell you I had a 20 year career in finance?!!?!!
My LLMD told me that often the mind is the last to come back. That has been my experience. In addition to cognitive, driving, functioning, over-stimulation, memory, word-finding, sentence completion, etc etc etc problems, I also lost all of my 'creative' abilities/impulses. I had, after several months, some concrete improvements with doxy/doryx, BUT it's been the mino that has taken me to the level of mental quality/accuity, where - if I am remembering this right!!!LOL - I used to always be at!! I do think taking a high enough dosage to cross the blood/brain barrier is KEY to getting this improvement . . .
As for acclimating to the mino, I would say 4 - 6 weeks for me, and I still have little issues every now and then - rarely, and as I mentioned, not enough to make me stop taking it. I take 100 mgs in the a.m. & the remaining 200mgs around 8:00 at night - that way, if there is going to be nausea or dizziness, it happens while I'm sleeping so is less bothersome. I don't know if I could take a 200 mg a.m. dose without some side effects that might impede my functioning.
It is always difficult to say with absolute certainty that it is a specific med that gives any increased improvement - sometimes you don't know if it's the meds or just where you are in your path of recovery or a combi of the two things that has led to the new level - but I think I'm quite sensitive and observant to the changes in my condition, and I believe mino IS the thing that got me to a new mental and energy level.
Brooke, what I've learned from this whole (stinking) experience is that it takes a very strange combination of patience/resignation, but at the same time never giving up, to stay on the path to recovery with LD. And the recovery is not like normal sickness - okay I'm sick, I take medicine, I get better, better again tomorrow, and better again the day after that. It takes a long time, it plateaus, it takes two steps forward and one - or even three! - back - - just stay with it.
I hope you have a positive experience over time with mino, but if not, there are many other things to try and I am sure you will find your answer. Just make sure you have a great doctor guiding you through this process, and even though it is tedious and time-consuming, try to keep a good record of your symptoms/condition, you & your doc can find helpful clues to successful treatment in that info.
Best -
otm
Posted by brooke (Member # 16606) on :
Thank you for taking the time to write all of that. It's nice to hear some good news for a change.
I feel like I'm mentally disabled, if that makes sense. If I didn't have a 5 year old I would stay in bed all day long. It's too much effort doing anything and everything these days.
Your post did give me hope though.
Thanks again,
brooke Posted by brooke (Member # 16606) on :
otm,
I tried to respond to your message, but your mailbox is full.
brooke
Posted by dguy (Member # 8979) on :
IMO the right abx dose is that small enough to provoke a tolerable herx. That dose will vary from on person to the next, depending on, for example, the degree of infection. When I started mino, I herxed on 25 mg.
Posted by onthemend (Member # 13454) on :
Hi Brooke, I'll try clearing some out.
otm
Posted by mjo (Member # 7876) on :
In the first post anxiety was mentioned. Mino increased my anxiety level to a point beyond belief. It was frightening! Has anyone else had anxiety like this?
One day I stepped out of the shower and wanted to put lotion on my skin, but the choices of lotions right in front of me--a jar of rich cream, a squeeze tube, and a new pump dispenser--were too overwhelming.
I wanted to use the pump dispenser, but it had one of those tops where you have to turn it to the right point to get it to pump when it's new and I couldn't deal with that.
I went without lotion because it was just too much.
I find this absurd. If I could take a shower, surely I should have been able to apply a lotion. What is going on when this happens?
In addition to the unbelievable dizziness, which did get better, and feeling like I was going to pass out, mino was definitely the hardest drug I've taken.
Posted by Ocean (Member # 3496) on :
mjo, Oh hon...I hear ya on the inability to make decisions. I've never treated for Lyme (yet, see a new LLMD next month), and I have those problems now. Like it's almost like my brain just pauses and I'm unsure of what I'm supposed to do.
I could not decide how to spell Massage today. I kept thinking Machage. It was very frustrating.
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