IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
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.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
^^^
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
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.).
Posts: 151 | From North East | Registered: May 2011
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
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.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
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.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
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.
Posts: 618 | From NC | Registered: Oct 2009
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
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.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
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.
Posts: 447 | From Vermont | Registered: Jan 2011
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Thanks for your experiences
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
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?
Posts: 247 | From Ca | Registered: Feb 2007
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
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.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
Same here - feel feverish, but never have a fever...usually in the afternoon. I did this a lot when on mepron too.
Posts: 618 | From NC | Registered: Oct 2009
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
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
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
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!
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
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.
Posts: 1737 | From Virginia | Registered: Aug 2011
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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.
Posts: 247 | From Ca | Registered: Feb 2007
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posted
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
-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
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posted
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.
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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posted
If it causes anxiety/intrusive thoughts as a herx, how many weeks before those feelings subside?
Thanks!
Posts: 648 | From northeast | Registered: Feb 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Mino made me feel dizzy, unbalanced and like I was walking drunk.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
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.
Posts: 832 | From Somewhere | Registered: Nov 2010
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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.
-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
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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.
Posts: 832 | From Somewhere | Registered: Nov 2010
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posted
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.
-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
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posted
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!!!
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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posted
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.
-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
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.
Posts: 3528 | From US | Registered: Apr 2007
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