Saw a doctor on Friday who supposedly is more into treating lyme disease than my normal doctor, who at this point I don't trust at all.
She told me she has had great results with Minocycline and wants me to start that now and stop the doxycycline.
The dosage will be 100mg twice a day.
Any opinions would be appreciated.
Posted by Geneal (Member # 10375) on :
I couldn't take minocycline.
One common side effect is dizziness.
I had vertigo.
Couldn't walk. Couldn't crawl.
Couldn't take care of my children.
Also made me break out in little random bumps that itched sporadically.
Mino is supposed to cross the blood brain barrier better than doxy.
Maybe less sun sensitivity issues with it as well.
I started at 300mg (one in the morning, two at night).
It packs a wallop.
Good luck with it.
Hugs,
Geneal
Posted by Erica741 (Member # 15186) on :
Minocyline often has the side effects that Geneal described.
My LLMD started me on a mino/zith combo that I was on for a little over a month. A few weeks in, I started getting increasingly dizzy. By the time I saw my LLMD I had 24/7 vertigo. At that point, my LLMD switched me to Omnicef, which is generally better tolerated.
But my LLMD said he started me on mino because it is a very good abx for Lyme. He likes to try it out with most patients because it is such a good abx (much better than doxy he said) and the dizziness with many patients goes away after a few days to a few weeks.
I really hope the mino works for you! But if you do start experiencing dizziness - and especially vertigo - don't panic because it is a common side effect. If lasts longer than a week or two, then you can revisit your treatment plan with your LLMD.
Posted by kelmo (Member # 8797) on :
My daughter had the BEST results with mino. But, we had to work up veeeery slowly.
She started with 50mg twice a week. She has now been on it a year.
Big improvement. We have now added plaquinil.
Give it a try.
Posted by Keebler (Member # 12673) on :
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In addition to Kelmo's daughter, another person here this week says her husband does great on minocycline. I emailed her to see if he did anything special and "not really" but she replied that neither she nor her son can take it at all due to extreme vertigo and nausea. Many people report that as well as tinnitus from mino.
So, if you don't have any inner ear or balance issues and you don't have ringing in the ears (tinnitus) . . . you might try a very small amount and slowly work up . . .
Taking NAC (N-Acetyl-Cysteine) AND B-6 can help with vertigo/nausea and might protect your ears. I'd sure start this before you start the mino.
I hear that minocin might be better tolerated - ask for a timed released pelleted version. If your doctor writes "no substitutes" your insurance may pay for it. It is more expensive, though.
I hear from some of those at The Road Back Foundation that this form is preferred. That plan uses low dose minocin.
However, if you have side-effects of the ears, that is a sign that it can be toxic to your ears and you might have a back up plan in your back pocket.
Be sure to employ your liver support supplements, too. That is vital.
Resveratrol may be oto-protective against toxicity.
Okay, so this is in vitro and on rats, and it's fairly new, but this is a very safe supplement and very helpful in many ways. It had a moderate effect in preliminary tests with one of the most oto-toxic drugs of all, gentamicin.
So, it may be of help with other drugs that have lesser effects on the ears. It's in many patients' support protocols, anyway, so it is worth noting.
Resveratrol protects [rat] auditory hair cells from gentamicin toxicity.
Bonabi S, Caelers A, Monge A, Huber A, Bodmer D.
Department of Otorhinolaryngology-Head and Neck Surgery, University Hospital Zurich, Zurich, Switzerland.
Resveratrol is a naturally occurring polyphenol that is synthesized by a variety of plant species. It is abundant in grapes and grape products (e.g., red wine).
Resveratrol has demonstrated reactive oxygen species (ROS) scavenger activity, and it has been linked to nuclear factor-kappa B (NF-kappaB) activity.
We recently demonstrated that NF-kappaB is important to the survival of immature mammalian hair cells.
Therefore, we undertook an in vitro experiment to determine if resveratrol is able to exert some protective influence against gentamicin-induced damage to and death of auditory hair cells.
To accomplish this, we dissected the organ of Corti (OC) from newborn Sprague-Dawley rats and cultured the OCs in medium overnight for recovery.
We treated two groups of OC explants with different concentrations of resveratrol plus gentamicin for 24 hours; for comparison and control purposes, we also treated a group of explants with gentamicin only and we left a group untreated.
We found that resveratrol in both concentrations had a moderate but statistically significant protective effect against gentamicin-induced toxicity in vitro.
PMID: 18833534
================
Resveratrol is discussed at length in these books:
This book, by an ILADS member LLMD, holds great information about pharmaceutical and complementary treatments:
I had dizziness the first two weeks on mino, which has since gone away. Other than anxiety/depression that really spiked when I added Levaquin, I've had no other issues. It is helping! Take care Kris
Posted by Alv (Member # 15192) on :
I had the diziness also and I added that once I was on levaquin.It definnitly brought me to a higher level.
But you need to take up to 400mg.I take the whole thing at once and reaches the BBB better.
Yes I was on doxy but mino is better.I worked my way up for 2 months to reach that dosages and handle the diziness and the penetration in the brain.
Posted by StephenK (Member # 17573) on :
With minocycline, I am on 100 mg twice a day. Is this an adequate dosage???
My concern is that it seems everyone I talk to who has lyme disease is on Doxycline, I was on it, but was switched to this and was told I just needed to trust her with this.
Posted by mandy614 (Member # 16524) on :
Minocycline is tough. I started out at 400mg a day and had extreme vertigo. I cut back my dose after a few weeks and the vertigo went away.
It is stronger than doxy, doxy is "good" but mino is "better" for lyme.
Once you get through the first few weeks you should be feeling better.
Posted by METALLlC BLUE (Member # 6628) on :
I support her decision, however start at only 100mg per day for 2 weeks, then increase to 200mg. You want to avoid both side effects as well as a strong Herxheimer reaction. This will lessen it's effect.
I do hope this medication is being added to another combination of antibiotics rather than used alone.
Posted by onthemend (Member # 13454) on :
After taking 400 mgs doxy for 15 mos, I switched to 300 mgs mino to minimize sun sensitivity this summer. I experienced dizziness and some balance issues, and some ringing in the ears.
But I also experienced further improvement on the neuro Lyme side - which I wasn't expecting. It has been a real positive for my brain clarity, mood and momentum/enthusiasm/energy.
As always with me, I find it hard to know if the changes are a result of the medication itself or of the path my healing is taking. But the timing was striking, and I do think it was due to the mino.
I had good results with doxy, but mino seemed to bring something additional to the cognitive function party.
The side effects for me are minor & tolerable, so I've been able to stick with the mino.
best -
otm
Posted by nurselily (Member # 17265) on :
mino with plaquenil to help it get into the tissues was my adn my kids BEST treatment protocol..zith came my son ear tinnitis..
Mino was awesome..no nausea as with doxy and works more effectively
Lisa
Posted by treepatrol (Member # 4117) on :
The last 6 months of my treatment involved minocin and one other abx each change of abx. When I went off treatment in march and then I was rebitten a week or so again oct 18th08 and I started minocin and biaxin xl. It seemed to work better for me and less stomach disruption unlike doxy. I think it is a very good one. It is said to penitrate better than other cyclines and I beleave it.
Posted by StephenK (Member # 17573) on :
I am only on minocycline, no other antibiotic has even been discussed to be added to it. I am trying to do all I can do, but the medical profession does seem to be challenging.
Posted by StephenK (Member # 17573) on :
I am only on minocycline, no other antibiotic has even been discussed to be added to it. I am trying to do all I can do, but the medical profession does seem to be challenging.