Topic: Mino is the toughest drug so far...did you herx on it?
tickbattler
Unregistered
posted
Hi all,
My husband just added 200 mg minocycline to his protocol and it is creating his biggest herx yet. He gets dizzy and nauseous and his head starts buzzing like crazy and he can't sleep.
He has recently cut his dose in half by leaving out the evening dose. That does help some. He plans to work his way up to the full dose slowly.
Has anyone else had this reaction to mino? If so, how long did it take for you to see some improvements?
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Someone here who no longer posts had Lyme for 18 months. She's cured with 1 month of Mino. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Mino can be a very effective drug and some do fine with it. However, others can have very harsh reactions with their ears, exactly as your husband describes. It can be toxic to the ears but there are things that can help. If not, he might ask to be put on a different medicine.
Taking B-6 might help reduce the vertigo and nausea. It worked in one study with mino, anyway. Ginger may be of some help. Capsules are best (500 mg, 3x day) or even tea from your kitchen spice rack.
NAC is also something that may help. Taking other supplements to help support the liver can also help protect the ears.
Your husband should be sure to drink plenty of water and eat a high fiber diet. Liver support such as Milk Thistle and a high fiber diet will help get some of the toxins out of the body so less recirculate.
posted
Mino was really bad for me. The dizziness never went away and I developed such a terrible headache and stiff neck that I ended up getting a spinal tap. Had to stop it because I couldn't see or hear, the headache was so bad. I kept trying for two months and it didn't get better. Too bad I couldn't tough it out; it seems to work really well for others.
Posts: 236 | From Washington | Registered: Jul 2008
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Jill E.
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I couldn't get past 150 mgs. because it made my already horrible central nervous system symptoms worse - dizzy, spacey, disequilibrium problems.
My dad couldn't tolerate it - made him way too dizzy - and he can tolerate anything. Same thing with a Lyme/Bartonella friend of mine. She has a constitution of steel and it made her too dizzy.
I don't know how much is a herx with Mino and how much is a side effect of that particular drug but I had to give up on it.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
Mino was the first drug I was put on. I'm just recently diagnosed. Those headaches, dizziness, neckaces, etc. lasted 10 days for me. Then it mostly subsided. I wasn't sure I was going to be able to do it but called my doc and she encouraged me to stick it out. She said most herxes last 5 to 8 days. Hope your husband feels better soon.
Posts: 123 | From Montana | Registered: May 2009
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Vermont_Lymie
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Highly recommend starting at a very low dose and very slowly working up to a higher dose.
Posts: 2557 | From home | Registered: Aug 2006
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tickbattler
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posted
Thanks for all of your replies. This gives us some hope that it is the right drug!
Yes, it definitely ramps up the nervous system for my hubby and also causes nausea. I hope it passes soon.
He is continuing the low dose for the next week or two and we will see what happens. He still feels a bit dizzy from the single dose!
blinkie
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Member # 14470
posted
yes, hubby and I both had dizzyness. That is a side effect of the drug but it will wear off after two weeks. My hubby also ramped up and it was better.
Posts: 1104 | From N.California | Registered: Jan 2008
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ping
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Member # 6974
posted
tickbattler
I was on 400+mg Mino for about 5 years. It was my primary drug of choice and I'm glad I made the decision. FYI - Some manaufacturers make it in 50mg doses and this makes it much easier to titer up than adding a full 100mg dose and knocking yourself silly. It's a great drug for neuro issues. Watch out when you add Flagyl, as Mino creates lots of cysts when taken at higher doses.
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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a) how/if did mino help people with bad neuroLyme?
b) how did you titer up successfully?
I am having trouble going up to 100 mg/day, I'm OK with 50mg but I took 100mg/day only ONCE (yesterday!) and it knocked me right out with an extreme headache!
In fact I get similar headaches with any abx or antiprotozoals that get into my CNS (tinidazole, atovaquone, artemisinin, lariam etc).
I used to be able to take more mino without the awful pusnishment, but that was before I had taken antiprotozoals which I suspect break up cysts of all kinds (not just Bb cysts), so the mino might be hitting a lot harder
Nelly
Posts: 416 | From france | Registered: Oct 2001
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Pocono Lyme
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Yes, definitely a tough drug for me, but once I was able to take full dose, it did help with CNS symptoms.
I had to do 50mg every other day to start and it took months to get to full dose. It was worth it.
-------------------- 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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I pushed through it -- lots of neuro symptoms during it. I was only on for 2 months. Got really toxic (from it or all abx, I don't know), so LLMD pulled me off.
I miss it. I loved that it went into the CNS and the brain. I always knew it was doing something.
Does this mean I can't go on again? Not sure, but we are going a different path. I was VERY glad that I stuck through the room spinning and the tinnitus and the constant tear for the first week. It really helped me, IMO.
I think I was on 300mg, 2x daily. But I don't remember.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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linky123
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posted
Unfortunately, I was unable to tolerate it. Took one dose at 100 mgs. and got short of breath so had to stop it.
Had to borrow one of my aunt's O2 tanks and suck in some air. Still a little short of breath a week later.
I do have asthma, and think it really aggravated it.
I was really disappointed, my llmd says it's one of the best drugs for lyme.
I was willing to tolerate about any symptom to take it, but the shortness of breath was too much.
I hope your husband gets some relief soon. It can be tough waiting out these herxes, but will probably be worth it in the long run Take care and God bless.
Linky
Posts: 2607 | From Hooterville | Registered: Apr 2009
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ping
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quote:Originally posted by steven: 400 mg mino? for 5 years? jesus! how did it help you?
im on 200 mg since april. didnt help much so far, but ill give it some more time.
Steven,
Mino is a great but weird drug. I've found that those who are successful with it are helped greatly, for others, it has very little effect. (Sometimes, in very advanced cases, it's just too late; sad, but true.)
The main problem, IMHO, is that because the drug is a tetracycline, as doxy is, that it really does take larger doses to be effective (400mg, like doxy). The reason that LLMDs won't rx at larger doses these days is because most people just can tolerate it. When I first started tx years ago, I was fortunate to have a cooperative doc who let me give the larger doses a whirl. He told me about a year after starting the 400-600mg that I was the only pt he'd ever had who could handle such high doses and was amazed.
If you can make it to 200mg., again, IMHO, see if you can talk your dr. into 300mg., esp. if you're a big guy. 200mgs. might work eventually, but it takes a very long time.
Again, I'm not a Dr. I can only tell you what worked for me and I was infected for almost 50 years by the time I found out and started tx.
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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posted
First time I took it I began with a low dose pulse and herxed EVERYWHERE. Completely got rid of my arthritis. Had to go off 5 months later because of a severe never ending headache.
Tried it again a few months ago and went immediately to 200mgs a day and was fine for a week, then herxed like hell and landed me in the ER with panic attacks and nervous system problems, dysautonomia, real major herxes. Went off and now am treating bart.
Posts: 770 | From USA | Registered: Jul 2006
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posted
First time I took it I began with a low dose pulse and herxed EVERYWHERE. Completely got rid of my arthritis. Had to go off 5 months later because of a severe never ending headache.
Tried it again a few months ago and went immediately to 200mgs a day and was fine for a week, then herxed like hell and landed me in the ER with panic attacks and nervous system problems, dysautonomia, real major herxes. Went off and now am treating bart.
Posts: 770 | From USA | Registered: Jul 2006
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posted
First time I took it I began with a low dose pulse and herxed EVERYWHERE. Completely got rid of my arthritis. Had to go off 5 months later because of a severe never ending headache.
Tried it again a few months ago and went immediately to 200mgs a day and was fine for a week, then herxed like hell and landed me in the ER with panic attacks and nervous system problems, dysautonomia, real major herxes. Went off and now am treating bart.
Posts: 770 | From USA | Registered: Jul 2006
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tickbattler
Unregistered
posted
Thanks all for your replies. My husband has continued the once daily (100 mg) dose for the past week and is now doing much better on it. The buzzing and dizziness and insomnia is much improved.
Like many of you said, he just need a couple of weeks to get used to it (or to get through the herx). The neuro symptoms have calmed down and are more manageable. In another week, he will plan to ramp up to the 200 mg/day.
TerryK
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posted
I hope your husband is having his liver enzymes checked regularly.
I was on it for 6 months. Had all the symptoms you mention. I developed very high liver enzymes and hyperpigmentation. Still have some of the hyperpigmentation several years later. I will never take it again.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Keebler
Honored Contributor (25K+ posts)
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posted
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Tickbattler,
Glad to hear things are working out better. What kind of liver support is your husband taking?
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For anyone on any kind of antibiotics, also be more protective of your hearing. Hearing damage can occur at lower decibels for those on abx.
In-the-ear pods are best avoided as the sound/pulse is just too close to the auditory nerves and can cause damage at even low volume, according to some ear specialists.
Ear plugs should be worn when around even a hairdryer or vacuum - or in city traffic, at a bowling alley, etc.
One way to wear headphones may be to get the broader button kind and put them in front of the ears, not directly over the ears. Sound will still travel through the bone and ear plugs can still be worn in noisy environments. Still, keep the volume as low as you can. These would still be too close to the auditory nerve to rock out.
posted
Hi. I have had lyme and babesia for seven years. Started treating end of October. I was rx's 200 mgs of Minocycline one in am and one in pm and Bactrim one in a.m and one in pm. I also took B6. My facial tics, numbness, dizzyness, vertigo headache, burning pain went away in under a month. It did return I believe that was a herx. Now for the past 2 weeks I have been doing four days on and 3 days off which seems to be helping with the rest of my joint pain.
It worked really well for me so far. However, I still get brain fog from time to time but mostly in the afternoons.
Also seems when I have 3 days off I am very tired and when I get back on the abx feel better.
It takes so long doesn't it?
Posts: 46 | From NE Ohio | Registered: Nov 2008
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ping
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Member # 6974
posted
quote:Originally posted by steven: thanks for sharing your experience. how are you now? 90 %?
Don't know if this message was mean't for me or not, but if so, yes, I would say 90%, at best. Since I was born with this infection and it wasn't discovered until I was almost 50 years old, I may never be 100%.
However, my Lyme is now in remission and I'm going to try the A.I. tx to try and rid myself of what I call "leftovers".
TerryK - Very surprised to hear about your high liver enzymes. I've not heard of anyone on Mino having that particular problem. They have every other neuro problem you can think of, but not liver enzymes. Interesting. Is the reading normal now?
Hyperpigmentation definitely IS a problem. Had what we call Mino stripe on my cheeks, where a woman would normally apply blush, had two brown, diagonal splotches. (Had it removed with laser.)
Wishing everyone the best with Mino. It's rough, but it saved my life.
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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TerryK
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Member # 8552
posted
Ping - yes, liver enzymes went down when I went off - as soon as we found out they were high.
My hyperpigmentation went from the top of my feet, up the front of my legs to my knees. Brown, speckled spots.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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tickbattler
Unregistered
posted
Keebler - I'm afraid my husband is not taking anything for it at the moment!
What would you recommend if he's on rifampin, artemesia, malarone and mino?
Can milk thistle be taken with malarone? I thought not.
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It's a great drug for neuro issues. Watch out when you add Flagyl, as Mino creates lots of cysts when taken at higher doses.
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