posted
I am about to start Minocin, 200mg 2xday. I've previously been on IV Rocephin, Doxy, Biaxin, Zithro, Omnicef, and Septra, all of them except the IV longterm. All had varying results and varying degrees of helpfulness. The doctor I have now is a strong believer in Minocin. My friend, however, who sees the same doctor, told me that when he rx'd Minocin to her he told her to start off slowly. She also said she's seen some posts here on LymeNet that say the same thing about this drug. I am curious as to what other people's experiences have been with Minocin and whether they started off slowly or just plunged in.
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter started on 100mg, and she was in so much pain she couldn't move.
I got permission from the doctor and split the 100mg capsules (I bought the 00 gelcaps at the health store).
With the 50mg caps, she started twice a week. And, I have to tell you, that was her limit.
It was a couple of months before she could gear up to 50mg every day. Then she started taking 100mg.
After four months, she is now up to 200mg daily and doing GREAT. I mean, this is the best she has felt since she was 14 (six years ago)
Kill the bug, not the patient.
Posts: 2903 | From AZ | Registered: Feb 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I was advised to start mino very slowly. And it was absolutely necessary.
My llmd said to start with 50mg every 3 days. That had a powerful impact, even though I had been on abx for almost a year when I started mino.
I stayed with 50mg every 3 days for about 6-8 weeks; then worked my way (painfully) up to 100 mg every other day. Then I switched to 50mg every day, and now am working up 100mg/day. I started the 50mg every 3 days in June.
I also started plaquenil and bicillin shots in the summer, after starting the mino.
The herxing and/or side effects with mino were very intense. Starting at 100 or 200mg/day would have killed me! I would not have been able to tolerate it at all.
In August, when I increased my mino dosage to around 50mg every day, I had a full fledged panic attack for absolutely no reason while waiting in line at a grocery store, for the first time in my life. Personally, I would proceed cautiously slowly and cautiously!
Posts: 2557 | From home | Registered: Aug 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I jumped right in. My LLMD thinks you need to shock the buggers.
I did not have severe herxing from it, so this was a fine way to start it for me.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Minocycline is a good broad spectrum bacteriostatic antibiotic. It is MUCH more effective for chronic infection when taken with Benicar. Higher doses of minocycline can actually be immunosuppressive.
Posts: 246 | From Grass Valley, CA | Registered: Jun 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
That's probably why it's the number one choice for those with autoimmune diseases, like on The Road Back.
But, they prefer low dose, pulsed, minocycline.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
I think that they are also worried about the dizziness side effect from the minocycline. In the past I have not been able to tolerate it at all bc of the dizziness.
This last time I started at 50 mgs 2x day and had no problems so I moved up to 100 mgs 2x day. I was on it from august until just a few days ago.
However, my dizziness has been horrible for the past month - verging on seizure activity. Cutting out the mepron only made it worse, plaquenil helped it and then made it worse (herx I think).
Finally a couple of days ago I dropped the mino and my dizziness is gone.
Go figure. Did I just start having the brain/inner ear herx a month ago? Or did I just start to experience the side effects after so long on it? I dunno!
A strange drug but I think it was realy helping me. The anti--inflammatory effects immediately got me to stop limping when I first started it this round.
I am also on mepron and zith and now plaquenil.
Don't know if this helps! I think that pulsing it every few days actually magnifies the herxes- maybe because you are not getting the anti-inflammatory effects that might counteract the herx??? I only know that I was warned that it might be worse if I only did it every few days than if I took it every day....
[ 21. January 2008, 08:46 PM: Message edited by: luvdogs ]
Posts: 589 | From Rhode Island | Registered: Jun 2006
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posted
Dizziness is a fairly common symptom reported by those on MP when they are taking minocycline. The really interesting part is that the dizziness COMPLETELY GOES AWAY in time! Could this be the result of killing the bacteria that are the true root cause?
Posts: 246 | From Grass Valley, CA | Registered: Jun 2007
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posted
I suspect the off-balance feeling from mino is just a side effect since it has been noted in studies of healthy people. In my case it was extreme but went away in a few weeks, and didn't come back cyclically the way herx sx do. But my hunch is that it's especially bad in people with Lyme because our nerves are already inflamed.
Also, I did need to ramp up slowly on mino due to severe neuro herx.
Posts: 621 | From US | Registered: Jun 2006
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posted
Think carefully about what "just a side effect" really means. Seriously. Think about it. Couldn't this "side effect" actually be an immune response to a sub-clinical bacterial infection in these "healthy" people?
The dizziness I experienced absolutely cycled with antibiotic dosing (blood concentration since I am taking it every other day). It also occassionally returns when I add a new antibiotic to the mix. The dizziness also used to be worse with excessive exposure to sunlight.
I have no doubt these mino side-effects are indeed herx. I haven't read any other sensible explanation.
Minocycline definitely penetrates some tissues better than other antibiotics. A related antibiotic, clindamycin, seems especially good at generating neuro-herx in some people.
Posts: 246 | From Grass Valley, CA | Registered: Jun 2007
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quote:Originally posted by B R H: Think carefully about what "just a side effect" really means. Seriously. Think about it. Couldn't this "side effect" actually be an immune response to a sub-clinical bacterial infection in these "healthy" people?
Absolutely. I wouldn't discount this possibility. Though I'm more suspicious when "side effects" are reported in patient groups like lupus, MS or RA as opposed to acne or healthy controls. But still the possibility is there, I don't think we'll ever know for sure what's a herx vs. side effect for many of these things.
Posts: 621 | From US | Registered: Jun 2006
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posted
One of my LLMDs hypothesized that many "side effects" are indeed herxes. I think that if we were to look more closely, we would see these side effects are most common in :RA", "MS" patients and the likes. coincidence?
I can't figure out why the dizzines on my last round of mino only hit when I first went off the mepron after many months of being on both, then went away when I went back on... then stayed for good, and then only went away immediately after going off the mino.
Like somebody said above, mino seems to have the dizzy "side fx" / herx when mixed with different abx, albeit it is perfectly capable of causing on its own. I guess the other abx / antiparasitics can potentiate it, make it go deeper and then trigger the dizziness again?
I am very confused by this one and will review with my LLMD in 2 weeks in more depth.
Posts: 589 | From Rhode Island | Registered: Jun 2006
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Last night i started haveing bad body jerks and tremors and today they got much worse. It has been really bad. About every 5 seconds my entire body will jerk.
My spine has also been really achy and stiff.
I never anticipated such a bad herx from only 100mg a day of this.
Why are the herxes so instense? does anybody know?
My LLMD wanted me to work up to 350 mg of minocycline! I never really herxed on mepron or zith and I assumed I was tough and could handle anything.
NOT MINOCYCLINE! I hurt so badly and also had a really psychological herx--a lot of anxiety and depression, and I was already taking lexapro.
I am now back up to 200 mg where I'm going to try to stay. I get a little dizzy, but mainly I have a lot of pain. My spine, my neck, my shoulders--it's like mino is waking up all the pain.
My LLMD said this means the drug is working--according to him, "Minocycline has tremendous penetration."
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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posted
Minocycline is a key antibiotic used in the Marshall Protocol. However, it is only taken every other day & the dose is slowly ramped up from 25 mg to 100 mg.
I had BY FAR my most serious herx reactions with minocycline on MP. It was even stronger that the herx I got from IV Rocephin! Unfortunately with Rocephin, the herx lasted a few days & that was it. Like many here I relapsed not long after stopping each Rocephin treatment despite follow-up with long term oral antibiotics.
With minocycline, the herx started about 4 hours after each dose & usually lasted less than a day. It was so encouraging to see such an obvious response to the medication, not to mention having more control over exactly when you herx. The small periodic dosing is also so much easier on your intestines!
Posts: 246 | From Grass Valley, CA | Registered: Jun 2007
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