LymeNet Flash: Minocycline... your reactions to it?

This is topic Minocycline... your reactions to it? in forum Medical Questions at LymeNet Flash.

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Posted by IckyTicky (Member # 21466) on :

Does anyone else have "herx" reactions like I do to this med?

It isn't my normal herxing...which usually involves increased muscle and joint pain. Mine is mostly all neuro/CNS issues.

It causes me to not be able to sleep. I have nightmares. That old internal vibrating is back.
Headaches where light bothers my eyes. Whole body tremors. Increased muscle twitching. And just a general ICKY feeling.

Also.. it makes me depressed, where I don't really care about anything at all.

I do believe I have Bart. And I was + for RMSF, Mycoplasma P., West Nile and EBV.
But my LLMD doesn't really seem to want to treat co-infections. It's just one oral abx at a time and has been for the last 4 years.

I'm grateful for that much because I can't afford to see another LLMD but I know it isn't enough.
I think I felt my best when I was on Zith for 6 months.

Is this a normal reaction to Minocycline? I took this med before, awhile back, but I sure don't remember it doing all of this back then.

Posted by IckyTicky (Member # 21466) on :

^^^

Posted by triathlongal (Member # 31684) on :

Well, I can say that when I was on it a few years ago I had the worst neuro. symptoms.

Never knew if it were side effect of the med or herx or both but either way I had such a hard time on it I had to switch to doxy.

My hubby is on it right now ( not for lyme) and when he increases his dose to 200 mg.s he gets some mild depressive symptoms. I strongly believe the depressive symptoms are from the meds (I work in Psych./Ph.D. Clnical Psyc.).

Posted by bcb1200 (Member # 25745) on :

What's your dose? Mino has excellent CNS penetration...but it is also a more toxic drug than Doxy, etc, so there are high side effects.

I jumped right in with 400mg / day and had increased dizziness (a common side effect), tinnitus (ditto), and other issues which could have been either side effect or herx.

Posted by IckyTicky (Member # 21466) on :

I'm on 100mg twice a day.
I didn't realize there were high side effects though. I should probably read the pharma info better.

Posted by jwall (Member # 22999) on :

I'm not doing well on minocycline either. Same type symptoms - lots of neuro. problems. Some of my original neuro. problems that had gone away are now back. Very discouraging. I have only been on it for one week though. I have 3 more months of minocycline, along with a bunch of other oral meds. I am hoping the symptoms lessen as time goes on.

Posted by WPinVA (Member # 33581) on :

I've been on mino for a couple of weeks, had previously been on doxy. With the mino, I had a lot of muscle achiness at first, which is interesting because that is not one of my usual symptoms. Also chills and hot flashes. I think it must have been a herx because it's become less intense over time.

Posted by rera2528 (Member # 29886) on :

I felt the worst when on mino, but I had also doubled my flagyl dose, so it's hard to know what was making me feel so terrible. I was nauseous all summer, weak, tired, foggy, low energy. I didn't have a ton of pain or the other CNS symptoms that I had at the beginning of my treatment, but I definitely did not feel well until I got off that cycle of meds.

I was down. Very little made me very edgy, and I didn't feel as hopeful as I do now.

Posted by IckyTicky (Member # 21466) on :

Thanks for your experiences [Smile]

Posted by chootik (Member # 11221) on :

I noticed more stiffness, specially in the neck and shoulders.

I also got more feverish and just a fluish feeling all over. I guess that makes sense if Mino is more toxic, maybe it was that side effect

But I have to say that I have neuro issues and I felt that it was very good for that. I just felt that it was def. killing things.

I stopped but will start up again shortly. Maybe more detox would help to get rid of the herxing or side effects.

Anyone get more feverish with Mino?

Posted by ktkdommer (Member # 29020) on :

I'm on month 3 of mino. I am just hot all the time. Not sure why. Otherwise, nothing I can blame on the drug.

Posted by chootik (Member # 11221) on :

Kari,

Do u have fever or do you just feel hot with no fever?

I feel the same but I get fevers with Mino.

Posted by IckyTicky (Member # 21466) on :

chootik: I FEEL more feverish on Mino..but I never actually have a fever. I get hot flushes and hot hands and face.

Posted by jwall (Member # 22999) on :

Same here - feel feverish, but never have a fever...usually in the afternoon. I did this a lot when on mepron too.

Posted by BackinStOlaf (Member # 23725) on :

I started it a few weeks ago. I got very dizzy in the beginning so doc lowered my dose and I just upped it again to 200 mg a day.

I've never herxed this much on any other drug. My tingling is worse, I have bad twitching, I feel hot in my head and nerves. I'm taking this as a good sign though that it is doing something

I am also on bicillin right now

Posted by Jamers (Member # 28016) on :

Doxy hits Bartonella and if Mino is stronger than Doxy maybe that's the reason for the neuro symptoms?? Just a thought.

Im on Doxy with Rifampin for Bart, just started and have the worst headache ever, which I know can be a side effect of Doxy...or herx..who the heck knows!

Posted by WPinVA (Member # 33581) on :

Yes, I feel little hot flashes all the time! Not too big of a deal, just a slight flush in the face. I didn't connect it to Mino until reading all of the posts above.

So does Mino hit Bart too? I didn't know that. I'm already on Mino for Lyme and about to start Rifampin for Bart.

Posted by chootik (Member # 11221) on :

Thanks guys for the feedback.

I'm not sure about Bart but I'm taking it for both Lyme and Mycoplasma. It's def. giving me more herxing that anything before, def. more than Zithromax.

I think we should def. up our detox on Mino. If it's toxic that could be why we're herxing on it more.

Posted by Geet3721 (Member # 15751) on :

I'm no week three or four of mino at 50 mg bid dropped down from 100mg bid because of muscle pain and wow feverish feeling and a general ickiness definitely kicking in also nausea and a little loose poop but intermitent. I've been on mino 100 mg bid before and I feel it truly got me far so I'm hanging in and even going to increase when I can

I'm also upping the detox which I've been slacking on. Feel better. Mino does Cross the bbb so its probably beating up some meets that were hiding out [Smile]

Posted by Jennifer70 (Member # 30280) on :

im on mino now, started about three weeks ago i think. Im having alot of neuro symptoms. Anxiety, more spacy, depressed, numbness and tingling in hands/feet/and face, head pressure and migraines, chills...to name a few.

I've heard mino is great for crossing the blood brain barrier. Makes sense that it's causing alot of neuro stuff. I was taking twice a day and backed down to once this week because of all the neuro stuff. It was getting to be too much.

Posted by aMomWithHope (Member # 19255) on :

If it causes anxiety/intrusive thoughts as a herx, how many weeks before those feelings subside?

Thanks!

Posted by Dekrator48 (Member # 18239) on :

Mino made me feel dizzy, unbalanced and like I was walking drunk.

Posted by terv (Member # 29410) on :

I have been on mino since January. Since then I have had tremendous fatigue (listed as a side effect) which never seems to go away. In June, I developed numbing in my hands and feet (also listed as a side effect). The only good thing the mino seemed to do was get rid of my TMJ pain which was my main symptom. So it seemed like I traded in my TMJ symptom for a whole new set of issues.

3 weeks ago I decided to stop all my abx which included mino and azith. I couldnt take it anymore. It seems to me that after 8 months on a med the fatigue (which it caused) should have improved. 4 days ago the fatigue started to improve. Unfortunately the TMJ stuff has kind of come back but I can live with it.

Posted by Geet3721 (Member # 15751) on :

Terv,

are you seeing a LLMD and do they know you stopped your abx?? the pain coming right back I think is a sign that your symptoms are still there. I did something similiar awhile stopped all abx my LLMD told me to I was in "Remission" yeah not so much and after being off abx for 8 months I had new symptoms and the ones I had worsened.

Just please be careful I would hate for that to happen to anyone else.

Posted by terv (Member # 29410) on :

Geet3721,

Yes I am seeing a LLMD. In fact I have an appt tomorrow. He will find out tomorrow I stopped the abx. My new symptoms developed while on the abx and haven't gotten any better. He tends to blame everything on a herx and the fact that these new symptoms haven't disappeared tells me that they aren't herx. To prove this to him was the main reason I went off of it.

I haven't developed any new symptoms while being off the abx. Just my TMJ has sort of come back but it is manageable.

To be honest I am starting to think I was better off with my lyme body before treatment. I didn't have stamina issues, numbness in my extremities, brain issues and could drink a beer and not get a terrible headache afterwards.

Thanks for the concern. I do have an appt with a new LLMD in January because of all this.

Posted by Geet3721 (Member # 15751) on :

I understand what you mean alot of my symptoms only presented after beinging treatment all and all i felt better before starting abx. However the fact that all these crazy symptoms have happened to me while on abx tells me there is treatment that needs to be done. Good luck with new llmd and hang in there we will get better.

I personally would be afraid to not treat and have lyme and friends progress worse.

Posted by Harmony (Member # 32424) on :

How do you know if the symptoms are a Herx or side-effect of the drug or progressing disease without check???

I am not so sure about any of it.

I have been on mino since August, so two and a half months.

I did have horrible CNS symptoms after my June bite and bull's eye rash, so I was glad to get on the drug!

It did cut the twitching in the calves and the burning/tingling soles of my feet and the seizure-like feelings when I lay down - very grateful for that! At first it only helped about 20% but with time it reduced the symptoms by over 50%, this took 8 weeks.

During the 8 week I got the worst chest pain, left only, it woke me up at night, sometimes my left arm would go numb during the day, stinging pain in ribs and left shoulder, could be heart, one LLMD thought it was the tissues around the heart, EKG borderline abnormal, but ok. Throbbing in my heart area, neck, and calves drove me crazy. I could feel my heart beat hard without touching it and had anxiety attacks.

That did go away, so I hope the mino killed something in the heart tissues.

It comes back now about once a month but only 20% of what it was. So I am thinking it is a Herx.

I was on only mino for the 2 months, so I know it must have been that or the disease running its natural course??

I hope it was the mino and it killed some bugs!

Good luck to everyone!!!

Posted by CD57 (Member # 11749) on :

Minocin (brand) gave me crazy, rippling neuropathy across my scalp and face which became unmanageable....and this on only 50mg! Brand is STRONG.
I read on LymeMDs blog that he has noticed that Minocin caused what he thought was auto-immune neuropathy, and he would quickly back off. Doxy did not seem to do this.