Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Our daughter is taking minocycline and Rifampin, dose is supposed to be 50mg of mino twice a day and 300mg of Rifampin twice a day.
she had to stop and restart meds back in Dec. Since then had a hard time getting back to her full dose.
Lately see has mentioned her eyes get blurry, so Dr. had us reduce the mino to 50mg once a day, we see him in a couple of weeks. Eye blurriness is side effect from Mino. It seemed ok at 50mg. She is at 300mg of Rifampin twice a day.
She also mentioned that her sight seems more vivid, can't really explain.
Today she said when she woke up, she had a hard time focusing, her eyes felt like they were shaking.
She has an eye Drs. appt next Wednesday, this is the earliest we can get in.
She also takes Milk thistle once a day, vit D3, vitamins, and probiotics.
Any one have any thoughts on this, any one experience this? She has Lyme, Bart, Erhliciosis, Myco P.
Wondering if the meds are causing a problem or the disease?
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
The shaking eyes is Nystagmus. I've had it, so has my children with Lyme. Maybe it's part of a herx. But my 9 yr old had it before starting abx.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I did that on doxy. It was a herx for me that was relieved somewhat with B12IM and electrolyte replacement. The optic nerve is known as the second cranial nerve, it is considered part of the central nervous system.
It may help to what conducts the electricity through the nervous system and things we can add to complement what has been lost in the infection of Borrelia and other organisms. Especially in demylination. See-
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- What age range is your daughter?
Is the eye doctor Lyme Literate? That is best but, of course, not everything is lyme so a basic check-up is good. Checking blood glucose would also be a good idea.
If sent to a ear specialist, try to get one who is LL. Many try to push steroids so be aware that can be a disaster with lyme. If steroids are recommended, consult your LLMD first.
Ditto to IckyTicky's reply.
Nystagmus really comes to mind when I see "eye shakiness" and mino. Nystagmus is common with lyme and also common when the liver is overwhelmed.
Vestibular symptoms are very common with lyme and mino really pushes that.
B-6 and NAC have been used in mino studies to help. But NAC is not without differences about how to take it.
I'm not sure Milk Thistle just once a day will cover it. Mino needs more liver protection.
MAGNESIUM is the number one supplement that can help stop nystagmus. It's also good for the liver. I can't comment on dose right now for your child - your LLMD may be able to do so.
If you cross -search at PubMed "nystagmus, magnesium" you'll see some connection.
I have so much more on this but I simply have to lie down. I can't read all of your post or the replies right now - so sorry if I've a glaring omission or duplication. I should not have even signed on but was waiting for puff of energy to move. Still, you can glance through the links below for what might be of help and I'll check back later.
You might save this set of links to your computer file for reference.
For those who are sensitive or pained by even normal or soft sounds (sounds not even at noise level). Caution, though, not everything suggested here is good for lyme patients and some suggestions can harm us. We generally need to protect ears more, rest them more, and not push sound therapy beyond what is comfortable for us or the adrenals just get trashed. Adrenal support can help.
Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Keebler, she is 14 years old.
Thanks for the links, I have been reading them and the others you have posted last time from my blurriness post.
This all seem to be noticeable since we went back up to the 100mg of Mino, but of course, today the eye shakiness was with only 50mg of Mino.
The eye Dr. is not LL, but hopefully will be able to take a good look at the vision.
She does have a convergence insufficiency also. We are doing vision therapy for that. Wonder if it is related?.....
The LLMD told us to stay at 50mg once a day on the mino, of course this was before the incident this morning.
I wonder if it could be herx related as three weeks ago we went back to full dose of Rifampin and then about 10 days ago back to full dose of mino.
Thanks to all that replied, sounds like it is Nystagmus.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Not sure if these are in with the Mino notes in the Tinnitus thread or not, but they were in an odd place in my file, so I'm thinking they got left out: -------------------
Vestibular Reactions Associated with Minocycline Jay A. Jacobson* and Brenda Daniel
ABSTRACT
Excerpt: . . . Several recent reports have indicated that minocycline, a drug effective for meningococcal disease prophylaxis, is associated with a high incidence of vestibular side effects. . . .
posted
My son was diagnosed with an eye muscle disorder right before we figured out it was lyme. He didn't have it when he was younger and just started showing symptoms of it around age 9 which is not usual. If you read about it on line they usually get this when younger.
It has improved and he barely complains of it anymore. He's been treating for 1 year this March.
He did herx a lot and when he did all of his symptoms got worse. Maybe this is what is going on??
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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posted
Jane, sorry to hear your daughter is having issues. My son was having eye issues, (hallucinations & then loss of vision), so I know how scary that can be. Hoping Dr. J can figure things out asap....
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Songbird, I hope your son is doing better, overall.
Jane, I'm always torn with the question of mino for those with inner ear problems. The nystagmus, itself, can come and go and is more of a muscle spasm thing, for myself, anyway. It may be alarming but, it can resolve.
The thing that puzzles me is that some people do okay with mino and some don't. I wish I could account for the different reactions as mino can be a wonderful drug and has helped many with neurolyme.
Somehow, this has to all work out. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Amy,Songbird, Keebler, thanks for all the information. It is so helpful. It is encouraging to read that the eye issues have improved with treatment.
I will update after we see the doctors.
Hope these symptoms improve for all, Jane
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
just wanted to update after the eye Drs. appt, she said that there have been no changes in our daughter's sight.
Everything, optic nerve etc was healthy, no vision
changes.
She said that the blurriness is probably related to the Mino, and the shaking could be from our daughters focusing problem. ( focus convergence).
However, everything seems to be better since reducing the Minocycline.
So, maybe it is a mixture of Lyme, medication and the focusing issue.
Once again thank you for all the great information, it has been very helpful.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
Back in November I tried Mino, but I couldn't tolerate it. I got week, shakey, more fatigued, and dizzy. I was contacted by someone else on the board here who had similar problems. For some reason women have a harder time with mino than men. The medical information on it includes this information and a high rate of women needing to discontinue because of side effects.
I have been on Doxy, Biaxin and Mepron for several months now and don't have those problems. In fact my eye twitches are much better. Maybe you could see if your LLMD would be willing to try the doxy instead of the mino. By the way, my son has never had a problem with the mino.
I hope things are better soon.
B4lyme
Posts: 144 | From PA | Registered: Nov 2009
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