posted
Treatment started in march - doxy 28 days - zith/malarone 21 days - biaxin/cipro 21 days 3weeks off for full co-infection tests - not doing to bad - so far the mycoplasma results came back and levels are still high - started Minocycline 2days ago and today I feel workse that when I started the doxcy - burning in arms - some in legs - mild rash - took my 2nd dose today - thought I was going to die - who has some pointers on the best way to take this stuff - I thought the hard part was over. thanks
Posts: 582 | From milwaukee wi | Registered: May 2005
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posted
john, minocycline has good penetration, but as you have already found out, it causes quick herxing too!
I had a similar experience, and had to reduce my dose and ramp up slowly. If your reaction is tolerable, you may want to ride it out, but if you have any question please, please contact your LLMD!
Also, please know that mino can produce some nice improvement as the die off goes down. I wish you well!
robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
I had a hard ie when I sarted mino as well. It has brought me a long way in the past few months though. Stay with it, but if you herx to hard slow it down. Call your doc for the bes advice.
posted
I had so much trouble getting on mino the first two times I tried...I just couldn't do it at first. Mino is the only med that made me plead for somethign else. Other drugs made me so dizzy I vomited, or gave me heart palpitations, or increased pain etc. but on mino I felt so dizzy, so out of it and my head hurt SO bad, that I called the MD those first two tries and got a different prescription. This was even w/ramping up slowly.
Last fall, I finally was able to get on the mino, and it has really, really been helpful. I have had some of my most "normal" times on it. At this point (my 5th year of treatment) I take the mino with zithromax and amantadine.
I agree w/everyone that ramping up slowly helps. Try that. If it is still too hard, your bacterial load might be too high and the mino will be good for you in the future, when you are ready for it.
posted
My LLMD started me on 50mg of Mino a WEEK. It wasn't too bad. I did herx alot and stayed in bed probably for the first month. Then it got easier.
I am now up 200mg a week, and feeling better. I don't herx as much on 200mg now then I did on 50mg when I started.
And like Achey said, you may want to call your Dr. and see if he/she can ramp you up slowly. Mino does last in your system alot longer then doxy.
Take care, Lisi
Posts: 986 | From Michigan | Registered: Dec 2004
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daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
I just started on minocycline. The last couple days I've had some bad headaches. However, I also just started flushing my nasal passages with a neti pot and himalayan salt and water. It really cleared out the sinuses and I could breathe so clearly. Then in the evening I began to get a headache and was hoping it was not fluid I poured in my nose which may have gotten stuck in my sinuses somewhere. I'm hoping the headaches are from the minocycline because I did like using the neti pot. Anyone else get headaches with mino?
posted
I am on Minocycline too, 100 mg 2 times a day along with 2000 mg of Biaxin a day. I have been on the Mino for 3 weeks. Feeling very weak and nauseated. My dosage seems high compared to others here. I don't which is the norm,,,,,,,a low or high dose. Perhaps the 2 abx will do their job, I can only hope, because I have this treatment till September along with many supplements.
Good Health to All!!
Posts: 17 | From Stoystown, PA USA | Registered: Feb 2004
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Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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liz28
Unregistered
posted
Mino is one of the only two antibiotics I can't take, because the side effects are so severe. Although everyone seems to find that it is one of the strongest available antibiotics, it also seems to cause a lot of problems.
You should know that the other antibiotics you are taking are "mid-range," helpful for some people but not the strongest drugs out there. To me, they are in the "old faithful" category, and have been surpassed long ago by other medications. So if you can't tolerate mino (which you can't tell until after the extreme herx ends, after about two weeks), please be aware you have other options.
Unfortunately, the mino herx can be beyond anything you'd ever expect. Please, if you have just started, make sure you have enough food and water in your home to last several days, and that your car keys are safely locked away. The first time I took mino, the herx started on Day Four, and I couldn't walk for about five days.
[This message has been edited by liz28 (edited 20 July 2005).]
posted
thanks to all of you who responded - I need it - I am now on my 3rd day and still alive...I think. I don't think I could have tollerated this ABX when I was first being treated - I think I will be able to cope but its like my memory is gone - I keep forgetting what I was suposed to do - It Like walking around in a daz - From what You all told me - its strong and it definataly is causing a big herz.
Posts: 582 | From milwaukee wi | Registered: May 2005
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi John,
I took Minocin for about a year, and herxed bad, but it did help me to get where I am today. If I ever did go on it again I would do so at a lower dose.
posted
Dizziness is one of the side effects listed for this drug, so it is open to question whether herxing is responsible for all such problems.
However, my experience was like lyddie's in that a couple weeks of mino, the first time around, made me too dizzy and I had to stop. Now I can take it without this problem, or mostly without it. So, if very low dose doesn't work, you can always come back to it later and try.
Posts: 8430 | From Not available | Registered: Oct 2000
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Hello all,
I started minocycline a couple days ago, with flagyl, and wanted to ask if others took it with food or on an empty stomach.
I am sure that the pharmacist where I bought it told me to take it on an empty stomach for best absorption, he is out of town so cannot call him now.
I did the Doxy a year ago with food, this mino so SO! tiny, the caps, wonder how it could help me, I get sick from the sun, since lat year from long term lyme, and wanted to try the mino as many on the Marshall Protocol, get sick from the sun... and the Mino helps them.
I dont feel that it is going to help me, am on the 3rd day, and not much happening. I have been on 50mgs 2 x's a day, and normally I herx like heck by now, on a low dose antibiotic... I am having brain fog, LOTS of brain fog, never had brain fog like this, hoping the lungs and throat imrpove more.
ALSO, for those that get sick from the sun, because of lyme NOT the antibiotics, which antibiotics helped you the most? I cannot stop antibiotics now, and not sure if I am wanting to do the MP at this time, so am trying the minocycline, and asking others now. thanks,
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
I am so glad to read all these replies. I started on 200 mon,wed,fri. It put me in bed for 4 months . Then major improvement. I am all neuro.I was taken off and put on just zithromax. When the dr. added it back he did 200 daily by the 4th day i should have been in a hospital. I had to back off. I am still on it mwf. It has been a wonder drug for me. I felt like a baby when I could not do it. I see now that I am not. thanks
Posts: 433 | From new york | Registered: Dec 2004
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quote:Originally posted by johnlyme1: Treatment started in march - doxy 28 days - zith/malarone 21 days - biaxin/cipro 21 days 3weeks off for full co-infection tests - not doing to bad - so far the mycoplasma results came back and levels are still high - started Minocycline 2days ago and today I feel workse that when I started the doxcy - burning in arms - some in legs - mild rash - took my 2nd dose today - thought I was going to die - who has some pointers on the best way to take this stuff - I thought the hard part was over. thanks
Posts: 582 | From milwaukee wi | Registered: May 2005
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posted
Wow -I thoughtthis threat was dead - Well I only lasted 2 weeks on the Mino - That was about 11 weeks ago - They had done a full panel of co-infections and found that my Babs titer and Myco titer went higher so we switched to Zith/malarone/art. I had 52 days of the zith while pulsing the malarone/art 21 days with one week off but staying on the zith. The Babs symptoms are gone. But Myco is still low positive at 960. I havebeen off abx 3 weeks and they took another full co-infection panel. I can feel the myco coming back - After awhile you really can tell the differences in what is hittng you. Of course, I am also feeling the nuero lyme acting up but I can still function yet. I am regrouping - I want to make sure that with what ever is used next that we also hit the myco atthe same time. I am also suspicious that Erlichi is still present, my last test did show 1:80.
Posts: 582 | From milwaukee wi | Registered: May 2005
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