penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
I have pretty bad neuro lyme and was just given Mino last week. My LLMD is easing me into this (working up to 2 100mgs twice a day) which scares me because I'm only on just 1 100mg twice a day now and I can barely walk without feeling like I am going to fall over. I always feel like I am on a rocky boat. My nausea comes and goes (mostly triggered by moving vehicles) but this feeling of being unbalanced is horrible. Will it just get worse as I increase my dosage? Or am I just herxing and by the time I increase it next week I will have adjusted? I'm still working full time - but if this gets worse I don't know if I can tolerate walking to the train etc.
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- penguingirl, due to vertigo and eye stuff, reading solid text is difficult for many here.
So that more can read and reply, breaking up text as below is easier on most of eyes and brains. I added the bullet to more easily find key detail: -----------------
penguingirl writes:
I have pretty bad neuro lyme and was just given Mino last week.
My LLMD is easing me into this (working up to 2 100mgs twice a day) which scares me because I'm only
� on just 1 100 mg [mino] twice a day now and I can barely walk without feeling like I am going to fall over.
I always feel like I am on a rocky boat. My nausea comes and goes (mostly triggered by moving vehicles) but this feeling of being unbalanced is horrible.
Will it just get worse as I increase my dosage?
Or am I just herxing and by the time I increase it next week I will have adjusted?
I'm still working full time - but if this gets worse I don't know if I can tolerate walking to the train etc.
(pengungirl - Boston, MA) -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- penguingirl,
it's best to copy and print this out for easier reading. Apologies for the length but each step is important for your safety in traveling home from work. Print out and take it one step at a time.
I'm so sorry to hear this. I have studied inner/middle ear stuff for years as that's the system that has toppled me.
Yes, this is a common effect for some lyme patients to even low dose minocycline.
You may need a different Rx. And support measures can help.
RIGHT NOW: If you can, send a colleague/friend out to get you -- or call a store close by and see if they can deliver to you:
� Magnesium (Glycinate or Citrate or a blend. Not oxide.)
� Ginger capsules
� Ginger Tea can help (if that is in your lunch room) but it is not nearly as effective as the CAPSULES.
� Vinpocetine - I just read how that seems to help protect against ototoxicity.
� Sublingual B-6.
� Eat a nice snack.
------ nice to have for when you get home:
� L-Methionine or D-Methionine
� NAC (N-acetyl-cysteine)
� Milk Thistle
Take both magnesium and Ginger capsules as soon as you can with a good amount of water and a light snack. Be sure not to go hungry as that can cause low blood sugar and make vertigo worse.
I'd wait until you get home to take the other three on the list (they are all liver support but it's best to do at home for the first time).
=================
GETTING HOME TODAY
I am concerned, though, for your "vestibular safety" as you approach the train tracks on your way home.
� Do you have a nurse at your work? If so, ask for his/her help regarding how to mitigate the inner ear upset. How to place your feet, how to stop and start in a crowd, etc. You should do this now as you will need instruction to safely make your way home.
� If there is a cane from the HR department, a health office, etc. at work that you could borrow, just to have at your side, that will be a sign to fellow passengers to give you just a little more elbow room - necessary for your eyes to tell you where you are in space.
Using the cane, for balance is totally different than using it for a sprained ankle. It takes some practice. Practice before you leave the building. But, mostly, it could be your "third" leg if you get tossed off balance.
� If your work station has fluorescent light - see if you can have someone find you a regular lamp with a regular light bulb. Energy-saving fluorescents can make vertigo worse.
� It is important to lie down and rest before you start for home. Try to elevate your head/upper torso to a 30 degree angle as that is the easiest position for the inner ear. Get as quiet and still as you can with deep, slow breathing.
� Avoid being around smelly stuff - so if the couch in near the rest room, hide any colognes that may be on the counter and avoid all "air fresheners" - smell can stress the inner ear.
� Avoid "sharpies" or smelly pens, inks, glues, etc.
� Can a coworker accompany you home? Can a friend meet you at your work and do so?
� Can you get a taxi part or all of the way home?
� Can you leave early to avoid the rush hour (well, I see that's in motion for your time zone already). So, can you stay past the rush hour?
� Do not get too close to the tracks, or to a cross walk, etc.
� Wear ear plugs to help prevent startles from the train whistle. However, ear plugs can also increase vertigo, so you may want to leave them with just a bit of wiggle room so the seal is not so tight as to increase vertigo.
Ear "muffs" - like used for lawn and construction - are better for the ears to protect but also not create the degree of vertigo that ear plugs can cause when walking.
� Be aware that a sudden noise or flash could cause you to startle, jump, jerk or fall down. Keep a safety zone at all times so that if you do fall, you are relatively safe.
� If you get dizzy in a crowd, stop. Look down. If possible, look straight ahead then for where you are going. However, if people walk between your vantage point and your body, that could toss you off the track (or, literally, onto the tracks). So, stop and look down at a clearing in front of your feet. Proceed slowly.
� Do not fiddle with your belongings while you are walking. Keep what you need handy to minimize distractions.
� Have a plastic bag in case you might need to vomit. (This is why the ginger capsules matter so much, in advance, they can prevent that.)
� Hum a cheerful tune while you walk. In the ear pods can make this worse but if the music helps to distract or keep a rhythm, be sure to keep it very soft in volume.
� Seat facing forward. Do not read on the train. Look straight ahead and, when you come upon light shining through sidebars, etc., close your eyes so that the fast pulsating of images does not topple you.
Good luck.
==============
Some researchers have minocycline on their ototoxic and vestibulotoxic lists (Bauman). Some do not (Hain). For myself, I find it extremely vestibulotoxic. Many do. Yet, some do fine with it.
For some, this vertigo / dizziness improves. For others, it does not. For some, the things that help manage a herx can settle down the inner ear effects. Liver support helps to manage a herxheimer reaction.
To help: Magnesium, Ginger capsules, light snacks.
I would call your LLMD, though, NOW, and ask his advice and request other options. Good luck. -
[ 11-02-2010, 04:50 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- What you need to know now is mostly above - and suggestions from others who may post with emergency advice for your safe arrival home.
For your study file: --------------------------
Specifically for LYME patients - lots of details about ears and what can help:
� of the way down page one, there are lots of LIVER LINKS:
posted
You may have to back off to the 100mg a day until you tolerate it better. I never was able to take the 300mg that was recommended.
Check with your doctor. Mino can really make you dizzy and off balance.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
Thanks Lymetoo and Keebler!
I did send my LLMD an email today - I decided to just not take my second dose today. I might even skip tomorrow morning's dose.
Actually my boss noticed my extra wooziness today so he let me go home early today.. so I was able to beat the rush over commuters on the train.
I didn't get to the store to get the ginger capsules and magnesium, etc. Do you normally find them at your local pharmacy (ie CVS)?
I was wondering why my ear was starting to hurt!
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Glad to hear you managed. Please print out the details above so that you know how to prevent falls from vertigo. It can happen in an instant, so you have to prepare and practice responses in advance.
A big box store is not the first place I'd buy supplements but you should be able to find a small bottle of a decent product while you search out the optimal brands.
Ask the pharmacist for the freshest brand of Ginger capsules, organic is preferred.
As for magnesium, a blend is best. Mag Glycinate and May Citrate are two of the the most absorbable forms. Mag. oxide is cheap and not very good. Avoid that one.
Take magnesium WITH FOOD, as you are experiencing some nausea and while mag is usually fine on an empty stomach, starting out - for you - I suggest it in the middle of a snack or meal.
Ginger capsules can be taken with or without food but, with food may be best at first. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Assuming CVS is the only place you can go near your work, and assuming the store carries same choices as their website, these are the only two choices that I would consider from their site.
I am not necessarily recommending these, but for now, they should be okay. You can call and have them set aside for you. See if they have anyone who delivers.
DO NOT TAKE MAGNESIUM OR CALCIUM TOO CLOSE TO ANTIBIOTICS. Separate by a few hours, at least. These minerals can weaken the antibiotic's therapeutic dose. --------------------
[ 11-03-2010, 02:01 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If you have a natural foods store or organic market near you, they would have better choices. See if they carry packets of a greens formula called "Green Vibrance" as that would be great to have on the go.
www.vitacost.com and www.iherb.com are both good sites, too. Both are in the west, though. It'd be best to find a supplier nearer to Boston.
For Ginger Capsules, I prefer the Eclectic Institute -Organic and Freeze Dried. Gaia and Source Naturals are also good brands. -
[ 11-03-2010, 02:02 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
I found most of the things on your list at GNC and Vitamin World.
Nature Made Milk Thistle 140mg Vitamin Worlds' Magnesium Citrate 100mg. GNC's NAC 600mg Vitamin World's Vinpocetin 10mg Nature's Way Ginger Root capsules Timed Release Stress B Complex with C500
Of course this was all before I saw your above post!
Well I am sure I will need to refill in a month or two so I can have more time to shop around online too for better brands if need be..
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
| IP: Logged |
penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
Oh I just noticed the powder supplement I am already taking 3 times a day (RibosCardio) has Magnesium Gluconate 40mg.
I hope it didn't reduce the abx I took in the morning.
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sounds like a plan.
Nature Made Ginger capsules are fine and they will work. I had not taken enough in advance of the boat trip, but that brand rescued the rest of the day for me after a failed attempt on a whale watching boat off the Oregon coast. As you are in a port city, you might want to steer clear of ocean-going boats right now. River trips are easier, though.
If you continue with mino, ask your LLMD to refer you to a LL Physical Therapist who can teach you vestibular safety - someone trained in "vestibular rehabilitation" but who is also very lyme literate as many PT's who do vest. rehab. can be out to lunch from the unique stuff lyme brings to the inner/middle ear.
A Qi Gong (Chi Gong) class might also be good, so you learn how to feel the bottom of your feet and align your body. Tai Chi involves too much turning of the head, IMO, though. I could never do that.
I've very drawn to helping you as I was in grad school at BU when I first got very ill - so I know Boston. And I also have been through the paces with inner ear stuff and learned so much.
First rule: sit down, no matter where you are, if you ever feel the need.
I'll see if I can find some YouTube short videos to explain a few key points of vestibular safety tips. But rest and and a shower comes first. I'll see what I can find for you later. Maybe others have some training tips, too.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
Thanks Keebler!
Yeah I have to walk very slowly and move my head slowly. I don't bend over to pick up things. I just squat slowly down. Luckily I am very flexible.
No more heels for me.. Uggs is what I wear to commute to work.
I am just hoping this will pass eventually sooner than later?
It's a good thing I don't have to travel for work for this ear pressure would not work on the plane!
Thanks.
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I just saw your note - I don't now how I missed that - except that it takes me a long time to compose a post.
Don't worry about the RibosCardio you already took. 40 mg is not that much. Just time it differently next time. Also, realize that there is a certain amount of magnesium that naturally occurs in many foods and that is okay.
It is best to avoid dairy, though, around abx. Even the calcium in milk, or that added to soy or almond milk can negate the effects.
For some, taking mino in the evening works best to get used to it so that your work day may go more easily. Your LLMD should be able to offer help, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic