kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Well, the mepron/zith combo has been thrown out the window. After five months of that pain and agony, we are moving in a new direction.
We are hoping that the five months of depression, extreme pain was worth it and some bugs were killed. She was having too much stomach, brain and spinal cord pain. Her ANA titers are elevated again.
I've been doing a search on here regarding mino. It seems some have had good results with it. The theme I've seen is "start slow it packs a punch".
We are planning on starting Tues/Thursday. She has been ordered 100mg capsules (I believe, I haven't picked it up yet). Some say to spill out half, take the other half on the next dose.
So, are we on the right track? Would this hit Lyme, Bart and Babs?
I will go back to The Road Back and check out what they say. I started in that group when my duaghter was diagnosed with fibro.
I just want to know if this made an improvement in your treatment.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Kelmo.
Definitely start slow. 100 mg is good. I don't split but it couldn't hurt.
Don't be surprised at: dizziness, heart palpitations.
It gets better (or did for me) in about a week.
I now take 100 mg two times a day, for total of 200mg a day. S'posed to be neuroprotective, whether it's killing or not. A good thing.
Hope your daughter sees improvement on it. Don't let the initial herx scare you off!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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cootiegirl
Frequent Contributor (1K+ posts)
Member # 3216
posted
I don't know how old your daughter is, but I can speak from my experience with mino....it has been my magic bullet. It can be a tough drug to tolerate but it does pack a punch against the buggies, esp lyme and bart.
In my case, I got up to 300 mg a day and tolerated it well. I started out 100mg three times a day then went to all 300 at bedtime with my llmd's blessing. I DON'T recommend that but it's what I could tolerate and worked for me because I got a little lyme stupid about remembering to dose 3 times a day! I know am pulsing the same dose - 4 days on, three off, and doing really well.
Best of luck to your daughter with this med - I hope it works for her! cootiegirl
Posts: 1728 | From New York State | Registered: Oct 2002
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tailz
Unregistered
posted
I'm supposed to start minocycline here myself, but my doc has yet to send me my malaria retest slip - mine was equivocal and I hesitate to start this med until I get the blood redrawn.
I hope this one works for your daughter - keep us posted.
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
My best wishes for your daughter. I started mino a little over one month ago, at a very low dose. I am taking 50mg every three days. I am also taking a high-dose of amoxy with that now.
I could not take more mino for the first month. I think it is helping, but it is hard to tell after only one month, as the side-effects have included headaches, irritability, and head pressure. It is the toughest antibiotic that I have taken yet, compared to doxy, amoxy or zithromax.
I asked my doc if these effects from mino were because it was treating a neurological infection or if they were side-effects of the drug itself. He said he did not know. No way to tell if it is a herx or just a mino side-effect!
Remember that she should take at least 1000mg (or 1.5g) Vitamin C daily while taking mino, as that seems to prevent teeth from turning dark. Also, probiotics of course.
Everyone reacts differently, so I hope she has an easy time with it, it is an effective treatment.
Posts: 2557 | From home | Registered: Aug 2006
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Mino worked for me. I felt off balance the first week or two that I was on it, but fine after that.
Do not split the dose! You must take the capsule whole, and with plenty of water. It can cause a horrible burning sensation if it doesn't make it to the stomach quickly. Which is why you never split the capsule -- it must be taken whole. Also, it is best not to lie down for about 30 minutes after you take the mino.
I hope that you daughter has the same wonderful results on mino that I had.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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Cobweb
Unregistered
posted
I have tried to take mino earlier in treatment and it incapacipated me-well it was weird-I felt the worst I have ever felt in treatment with pinpoints of feeling the BEST-like actually clear of any head issues.
NOw I have been on orals and IV for over a year, and am willing to try again-ramping up slowly. If I survive the herx then I truly believe I will be in the homestretch of winning my life back.
Before I just had to drop out of the race. I swore I wouldn't go near mino again-but I'm hoping the bacteria load is down enough for me to handle it.
Take Care, Carol
ps- my daughter has been taking mino daily, prescribed by dermatologist for three years now with no side effects-except clear skin-which is her goal.
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Mino was fine the first time I took it. When symptoms returned, I went back on and it was too much for me. The herxes were too hard for me to handle this time around. I'm now on rocephin which I'm tolerating physically well, mind wise, it's tough with any of them. Keep us posted, I hope she does well.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
I don't have any experience to offer...
Just best wishes for a positive outcome. Your little one (well not so little) needs and deserves to have a good outcome soon.
And I have heard relatively good things about minocycline.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Thank you all for taking the time to post your experiences, that is what I needed to hear.
Lou, even though I'm disappointed we can't split the dose, I understand why and will take your advice.
We are planning on taking it two days next week. Tues and Thursday. I'm thinking of doing that for a month then ramp up to MWF.
Wouldn't it be nice to feel halfway normal by Christmas?
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I was doing a search on minocycline and thought I would update and bring it back up. I would also like to know how everyone who started taking it last Summer are faring.
My daughter had a rough couple of months on it, but by the end of the year, she told her doctor that it was the best drug by far.
She still has pain, but she has improved to about 75% function. She has been on it seven months.
After a while, did you had a second drug to give it a boost?
Posts: 2903 | From AZ | Registered: Feb 2006
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Wow, great news that your daughter is up to 75% on mino!
I, too, started mino around the same time she did (I think shortly after your daughter). It was a tough transition, and the first few months were horrid.
Beginning a few weeks ago, I would say that I've been functioning about 65 - 70%. Which is amazing. This is the best I've felt in years.
I do still have headaches, although not as frequent or as incapacitating as previously, so that has also improved.
I can't attribute it all to mino, as we've also been adjusting thyroid meds, and so the higher dose of thyroid meds is likely making a difference as well.
It will be interesting to see if this continues for both of us, and whether your daughter's LLMD opts to add in any other meds.
Please keep us posted... and I'll be watching this thread with interest.
Take care, Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Can anyone tell me about anything you did IF vestibular symptoms resulted from mino ?
I get terrible tinnitus, vertigo and just can't continue it. However, it's the only drug I can really get . . .
I've read in several places (and on PubMed) that it can be ototoxic, but one researcher does not have it on his list. Still, lots of people do okay with it.
B6 is being used with minocin in trials with austic kids to calm down the vertigo . . . so the B6 may be vestibular-protective.
Anyone here found anything to help regarding tinnitus mainly ?
Anyone taking the minocin, or time-released ? any difference? I hear it's really expensive, though.
Vermont-Lymie: Vit. C at the same time? or just regularly, maybe a few hours away from mino ?
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