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High dose Minocycline?

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Posted 2/3/2016 1:45 AM (GMT 0)
Hi all-

So I was wondering if anyone has done higher doses of mino...like 400 mg a day. My current plan right now is 200 mg a day and 500 mg of azith. My stomach does NOT like azith so I have stopped taking it. It's too hard on my digestive tract. Minocycline is no problem at all- even when I do 200 mg at the same time.

My next llmd appointment isn't until the 11th of this month so I will definitely talk with her about switching up that part of treatment.

Also, being over 3 months in to treatment for Bart, Myco, and possible lyme, I have been experiencing a lot of muscle symptoms- gurgling, twitching, stinging etc. Is this the abx getting to the bacteria and a herx reaction happening? LORD I HOPE!
Posted 2/3/2016 3:11 AM (GMT 0)
I have only done 200 mg per day...I haven't heard of anyone doing 400 mg daily.

Are you taking Zith on an empty stomach? I can't remember if I took it with food or not...maybe you could try that (check with your Dr.)

What about adding a different antibiotic to the current dose of mino? Usually two antibiotics are used together.
I have seen Ceftin paired with mino before.

Or, in my case, we were targeting bartonella and added Rifampin to it.
Posted 2/3/2016 3:12 AM (GMT 0)
It does sound like a herx to me.

Are you doing enough to detox?
Posted 2/3/2016 3:51 AM (GMT 0)
I was on doxycycline (which is in the same class as minocycline) 200 mg twice a day - so yes, it is ok to be on that dose. However, I couldn't tolerate the doxy at that dose, so I switched that up but was on zithromax 250mg twice a day along with doxy before I switched - and was fine with that. Sounds like you are on the same regimen I was on (a tetracycline plus a macrolide). It worked great, I had bart too. Maybe that's why the zithro is hurting your stomach? are you taking it with food, or together with anything else? Doxy/minocycline and zithro is a very good combination for bart.

i also had a TON of muscle twitching, yes, most probably a herx for you - I knew when I was herxing bc the twitching would go haywire!

are you taking magnesium? it didnt help me, but it is supposed to help with the muscle twitching. They say that lyme deprives the body of magnesium which in turn causes the muscles to twitch.
Posted 2/3/2016 10:31 AM (GMT 0)
I was on Mino 300mg / day. It is much harder than 200, i started to develop intracrannial pressure and all the fun stuff associated with neurological side effects of mino. I was not able to tolerate 300mg a day for too long (one week), had to drop back to 200. At some point it gave me really high pulse, above 140 lying down.

I was taking 300mino , 1500 cipro, 1500 tinidazole, all at the same.

Please be careful with higher doses.
Posted 2/3/2016 1:09 PM (GMT 0)
I forgot to mention that I take Plaquenil as well. Will this help the Mino work better as well, or is that only targeted for the Azith?

I have taken Biaxin and Ceftin in the past (not for lyme)... and never had side effects with either of those. I'll have to ask her maybe to switch to one of them.

As far as detoxing, I've only been consistent with the lemon water really. I have to get back to the dry skin brushing...and maybe even try a bath again (yikes)
Posted 2/3/2016 5:17 PM (GMT 0)
I take Azith, Minocycline and Omnicef....high dosages. So far...NOTHING. It's been two weeks (pulsing, on one day, off the next, weekends off) and absolutely nothing has happened. No side effects, no herx, not sure I'm improving but perhaps? I'm not getting worse, anyway. I was braced for the storm, I hafl wanted a herx to 'prove' to myself that this is really lyme but so far...nothing.
Posted 2/3/2016 6:00 PM (GMT 0)
Be careful if you do 400 mg of mino daily. Please check with your Dr.
Because of it's good penetration of blood/brain barrier, you may end up with more of the 'head' side effects - dizziness, light-headedness, etc.
It is not the usual dose prescribed for lyme.

Raincity - what dose of mino are you on?
Posted 2/3/2016 6:43 PM (GMT 0)
raincity - you are on three strong abx - you must be fighting a coinfection too - did you test positive for any coinfection? which one are you aiming to treat? what doses are you on, may i ask?
Posted 2/3/2016 6:51 PM (GMT 0)
What penetrates Bart better... Azithromyacin or Biaxin?

Dare I ask my doc about Levaquin?
Posted 2/3/2016 6:52 PM (GMT 0)
beware of levaquin - some serious side effects to consider.

zithromax worked for me, but alot of people prefer biaxin. Not sure - they both work the same.
Posted 2/3/2016 7:09 PM (GMT 0)
Careful with higher doses of minocycline like 400 mg daily.

I was on minocycline daily for like over a year and I got thyroid issues... mind you they have gotten better now. Minocycline has a tendency to accumulate in the thyroid and can stain it black maybe eventually causing thyroid problems, and increased risk of thyroid cancer. This is mainly only for very long term use of mino.

In terms of how much minocycline get's into the brain.... 200 mg minocycline daily would get the same amount of antibiotic into the brain as 400 mg of doxycycline would.

Also... Clarithromycin is the better macrolide choice for bart. It is said sometimes bart can get resistant to azithromycin so be careful of that.

Also plaquenil improves many intracellular antibiotics including the minocycline. But it's effect on improving other antibiotics is much greater with the macrolide class. It improves intracellular pH. Be aware of side effects as this one can permanently damage the eyes! I stopped taking it just because of that reason.
Posted 2/3/2016 7:15 PM (GMT 0)
As Chapelle said - serious side effects with the fluoroquinolone class of antibiotics.
They come with a black box warning for tendon issues (including rupture)

Here is a link to a webinar on Bartonella that was posted a few months ago.
When I watched it, I had a lot of 'aha' moments...

This Dr. treats Bart with Rifampin and Biaxin.

www.galaxydx.com/web/2015/webinar-understanding-bartonella/
Posted 2/3/2016 7:57 PM (GMT 0)
Has anyone here successfully treated with Levaquin? I read an article by Dr. Singleton(?). He stated Levaquin is the most effective choice for Bart and the tendon issues are rare.
Posted 2/3/2016 8:24 PM (GMT 0)
I have read success stories with people using one of the fluoroquinolone for bart...but many Dr.'s don't prescribe it unless it's the last resort. (for the risks)
They also come with the risk of peripheral neuropathy.

www.medscape.com/viewarticle/809520

www.drugwatch.com/cipro-levaquin-avelox/

When I talked to my regular MD about the risk of tendon rupture..she said it is rare...but i still don't want to take them.
Posted 2/3/2016 8:25 PM (GMT 0)
the problem is, if you start to develop tendonitis, it may be the levaquin, or it may be lyme - it is hard to distinguish.

tendonitis is not as rare as you may think - also as girlie said, peripheral neuropathy is another concern, which can also be caused by lyme.

it can get confusing!
Posted 2/3/2016 8:39 PM (GMT 0)
i think that if you don't start jumping and doing loads of exercise, the risk of tendon rupture becomes even smaller. If you KNOW you can have tendon rupture because of fluoroquinolone , then while you take it, just take it easy, very little to no exercise, slow moves, etc.

at least most cases i read that are documented of tendon rupture in such cases were during exercise, load.
Posted 2/3/2016 8:43 PM (GMT 0)
I also read that taking magnesium helps - but check that out - I don't know if you take it prior to starting the med, and continue taking it while on the levaquin...or ?
Posted 2/3/2016 8:51 PM (GMT 0)
mpost, that's good to hear!!

jadams, when i said i couldn't tolerate the doxy at 400/day it was bc i was having severe sunburn issues and peripheral neuropathy as well. doxy is not known to cause that commonly, but it can happen
Posted 2/3/2016 9:27 PM (GMT 0)
That article by Dr. Singleton says 2 weeks prior to Levaquin treatment magnesium should be taken. Then, a few hours before or after dose during treatment.

I take magnesium now anyway w my current treatment plan. I don't see that it helps with the twitching at all.
Posted 2/3/2016 9:30 PM (GMT 0)
the same thing happened to me. I tried all different types forms and brands of magnesium and not one helped the twitching. could never figure out why.
Posted 2/3/2016 9:51 PM (GMT 0)
Me three....the magnesium didn't touch my twitches...
Posted 2/3/2016 10:00 PM (GMT 0)
How long before these symptoms started to diminish? Did you both have numb stinging in your thigh muscles? I believe this is where it originated for me years ago...never knew what was going on until it eventually started to spread and worsen the past 2 years.
Posted 2/3/2016 10:02 PM (GMT 0)
I didn't have numb/stinging in my thigh muscles.

Mine started out as upper body - radiculopathy (left side)...and then continued from there...symptom, after symptom...pretty much weekly.

I only had muscle pain for a couple of months...but it wasn't stinging nerve pain.
Posted 2/3/2016 10:07 PM (GMT 0)
All my symptoms have been left side as well...with the exception of my right thigh. The most bizarre infections these are....
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