posted
hi, my llmd is starting me on this, just looking for any input at all regarding minocycline, any experiences with it etc, thanks, dee
Posts: 163 | From maine | Registered: Oct 2003
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posted
Hi Dee, I just started Minocycline Wednesday and I'm feeling pretty bad. I was on Doxy, Biaxin and Flagyl and saw no difference. I just hope I'm not have a bad reaction to the drug, I'm real dizzy. Good luck, Sara
Posts: 81 | From Nashville Tennessee | Registered: Oct 2006
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Cobweb
Unregistered
posted
Well, don't know if this is the kind of feedback you want or not-we really are all different in how we react to different meds-but-
Minocycline was the one drug I've been on so far where I thought I was going to die.-literally. I was so incapacitated I stopped taking it voluntarily(without notifying my doc-ooops).
Fortunately her response was "it's up to you whether you can tolerate it or not" I can tolerate high doses of Doxy, Ceftin, and Flagyl all at the same time-but minocycline-no way. Carol B
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Dizziness might be a side effect of the medication rather than a herx.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
I'm taking this for neuro Lyme...in addition to Biaxin XL.
I've not had a problem with it. As they said, everyone is different. I only heard horror stories before I started taking it. My pharmacist said clindamycin would have been harder to tolerate, but it was fine too.
Maybe my bacterial load isn't as high as some of you...
Happy mino-ing, Nancy
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I worked my way up slowly to a large dose. I've been on the high dose since early Sept. I started on minocen in May.
Everytime I increased the dose I had nausea and dizzyness which pretty much went away after a few weeks at the new dose. I also would feel like I was running a fever in the early evening and I would get the chills but my temp would be around 97.
I've had a lot of muscle problems since starting minocen - cramps and increased trigger points. Inflammation in a knee that has never bothered me before, to the point that I couldn't walk on it except to do the bare min for several weeks. I think minocen upregulates my immune system. I've had a heightened response to insect bites.
My LLMD put me on actos (down regulates the immune system) and questran to remove endotoxins and I think that is helping a lot. I am using a LOT of supplements and my husband muscle tests me constantly to help deal with inflammation and other symptoms.
I'm much more fatigued on minocen then before (and I was already very fatigued) and I had a flu like sore throat and swollen glands on one side of my throat for a month. I can usually nip any kind of flu in the bud with muscle testing but for the first time in years, it would not go away.
I'm tolerating minocen but I am not very functional physically. I'm able to function on the computer fairly well though and spend my days laying around.
Another abx will be added when I see my LLMD in November from what he said.
BTW - I'm also taking 400 mg per day of artemesinin for babesia so some of the fatigue could be from that but I'm certain that the dizzyness and nausea was from the minocen. I still have the nausea if I'm not careful to eat enough when I take the minocen.
Hope that is helpful. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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When I started on minocycline, I had a lot of "weird head feelings". It was odd. This lasted about 2-3 weeks and then settled down. After that, I only felt better and continued to feel better. Good luck, hope it works well for you.
Lunch
Posts: 17 | From PA | Registered: Jun 2005
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posted
My daughter has had the best response to minocycline. It has helped her fatigue and neuro symptoms.
Posts: 488 | From NY | Registered: Oct 2004
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posted
My doc gave me mino last week and aftr 4 days on it I was so sick I stopped taking it. I can handle the HERX and the Lymes itself, but I couldnt deal with the head stuff, dizziness and nausea. After reading Dr. B's recommendations I asked for Doxy...I dont know if I asked for the right thing...but I need to function and not feel worse from the side effects than the illness itself. Doesnt mean though that it wont work wonderfully for you...I hope it does! C
Posts: 45 | From NJ | Registered: Sep 2006
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posted
I started slowly, one capsule a day instead of two, for a week.
Have been taking it for a month now at full dose with no adverse reactions. However, I'm one of those people that rarely has a bad reaction to a drug.
Posts: 449 | From Vermont | Registered: Nov 2004
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posted
Thank you all for your help, i think i'll take advice and start at 100 mg daily then up to twice a day if i can tolerate it.
have been hearing a lot about nausea and dizziness, i'm not too concerned about this unless it's severe, i'm more concerned about having a neuro herx.
i have had a lot of neuro stuff and that to me is the hardest to deal with, ie horrible lyme rage, mental fog, and SEVERE insomnia. i can even take pain over that! wish me luck! thanks again, dee
Posts: 163 | From maine | Registered: Oct 2003
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Ditto, horrible. Am pulsing to work up to tolerance.
Posts: 1452 | Registered: Feb 2004
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
First 2-3 weeks: definitely knew was on a different abx. had nausea, some dizziness, uh oh- INCREASED insomnia. I think all of that was directly related to the abx itsef.
Herxing took form of going from pre-mino extremely exhausted to couldn't move for 2 days, major heart palps and much increased irritability my DH (very carefully) called "an edge."
All of that passed within a month. It wasn't till I added Malarone that I saw a huge improvement in neuro-symptoms, though.
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
My LLMD started me on Mino VERY Slowly, I think because I had such a bad reaction to one dose of doxy 200mg --- I was in a fetal postion and if I had a gun... well you know the rest.
So he started me on 50mg a WEEK. I did that for a few months then moved to 100mg a week. I only upped the dose when I started not herxing as bad.
Now I am on 200mg a week and doing good on it.
BTW-- its been almost 2 years since I've started Mino, and I am not saying that everyone should start or progress as slow as I did, but it has worked for me.
For example --My headaches used to be an 8 - 10 daily and now I may get a headache once or twice a week. and it would be a 2 - 3.
Oh and in the beginning of treatment I would sleep an easy 12- 15 hours a day, just couldn't get out of bed. That lasted about the first 4 months.
posted
slowly upping mino here too. Herxing badly, although not as bad as in the beginning.
It intensifies my neuro symptoms---muscle weakness, brain fog,sometimes makes me feel disoriented/high.
Herxes don't last as long now as when I first started. After my first dose, I couldn't move off my bed for 2 days.
I am able to sit longer at the computer now, though, and my fine motor stuff is a bit better.
Not sure if it's the mino, or happen to be having a better couple of weeks. But the weakness/fatigue right now is still disabling.
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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