posted
Good wishes sent. It *is* scary when your legs don't do what they always did. Sometimes I go in the restroom and just cry for one minute, not long enough to get my face red, and then stop and go wash my face. For some reason that helps me remember it is not the end of the world, but gets some upset out. Tree
Posts: 146 | From South | Registered: Aug 2012
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LisaK
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posted
Thinking of you! )))
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Hang in there! You haven't started treatment, have you?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Hope you are okay! Are you eating and drinking enough
Good thoughts---
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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joalo
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posted
I'm so sorry you are feeling so awful. My legs feel like that sometimes when I herx.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Greta,
So sorry this is happening to you. That "jell-o legs" thing affected me, long before I even knew I had lyme or new that it can be very common with lyme and with inner ear dysfunction that can go with lyme & toxicity states.
I would go home now, if possible. Be very careful around traffic and stairs. Call your LLMD. Rest.
You might see if you can take tomorrow off.
To stay safe, it's now important to ALWAYS support your body, in a triangle sort of fashion. A 3-prong approach: hold on to a railing when going down even just 1 or 2 stairs.
Try to stay to the side of large door ways.
When crossing a street, do not stand right out frong on the curb.
I had all that "legs giving out" stuff and got really hurt - a lot - before I got a cane. You may not want to hear this but it's time to get a cane for your own safety.
Be sure your LLMD knows about this, of course and there are some support measures such as magnesium and ginger (the inner ear could be triggering this and ginger can help).
That this happens on a "slight slope" or "stairs" seems to suggest the inner ear involvement.
The magnesium helps because this could be a kind of short seizure - and the inner ear can trigger that. Magnesium can help prevent these drops.
But you do not need to know what, exactly, is going on - this just frequently goes with having lyme and it can get better. Still, for now, stop off at a men's clothing shop and pick up an attractive cane. Ask if they can cut it to length for you.
Some pharmacies also carry canes. I suggest a pretty bamboo one. They are lighter weight and stylish.
For a simple explanation, tell folks that you just seem to have a knee that is "catching" lately.
You do not need to lean on the cane but just keep in along your weakest side (the knee that might seem to go to jelly the most). That cane will become your "tripod" point only if you need to use it. Otherwise, just let it barely tap the pavement or even keep it a couple inches above until you need to hold tight.
When standing at a cross walk, while waiting, be careful to not let your eyes (and inner ear) get jostled by the movement of traffic or sounds.
Look down, at the patch of clear pavement in front of your feet if you need to orient yourself.
Ask your LLMD who they might suggest for some "vestibular" training - or a PT to help you learn now to best keep a can at the ready.
This is just for now. Just like an ankle wrap for an injured ankle. Just a helper. Once I finally allowed it into my life, my bamboo cane saved me from so much pain and physical hits. Let it help you.
Some medications made this far worse for me. Wellbutrin was one of those. Be sure your LLMD is aware of everthing you take.
Some antibiotics that affect the ears can also be involved. Be sure liver support is tip top to help the inner ear, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's okay to cry. Reasonable. Find somewhere you can do that. Allow yourself. Then you will be able to find some shred of humor, somehow (well, at least you're not supposed to pilot the Space Shuttle later today). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Getting too hot can do this. Even just one degree can make a difference. Try to stay cool. Soft ice packs may be needed to be stashed in freezers everywhere you go.
Blood sugar drops can also turn the knees to jell-o. Be sure you are getting enough carbohydrates (only complex, of course) to hold blood sugar steady. Not getting enough protein, too.
Certain foods and food additives also triggered the leg collapse thing for me. You might be getting something sneaking into your foods.
Be sure you are not taking any thing that has added glutamate or glutamic acid, either. Detail:
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. Also for inner ear support. -
[ 07-25-2013, 08:11 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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GretaM
Frequent Contributor (1K+ posts)
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posted
Hi all, Thank you for your kind wishes. Reading them really helps me to not feel so alone with these crazy symptoms.
Tree-Thank you for your good wishes. I had a few tears in the washroom today. You're right-it helped to relieve some pressure, emotional-wise. It was easier for me after to hold my head up and stand straight after releasing a few tears. Before I felt very defeated.
Lisa-thank you for your well wishes
Lymetoo-thank you for your support. I started back on mino yesterday, and started cryptolepsis Monday. I didn't put two and two together until I read the thread. Maybe it is the mino, although I didn't have this last time I took it BUT this time around I am taking the mino on an empty stomach. Maybe it's more potent?
Surprise-thank you for sending good wishes my way. Yes, had regular food today and my s&c and water. It is quite hot-maybe I am dehydrated? Or maybe a potassium thing? My heart felt OK but I have been sweating today.
Joalo-thanks for the hugs. Boy do I need them today! Maybe this is a herx...the crypto is new, the mino I've taken before, but in the past took it with food. The first time I fell was 9:40 ish. I took the mino at 5am and the crypto at 6. Tonight I am seeing if my legs give out around the 4-5 hours after I took the evening mino and crypton. (haha-crypto)
Keebler-thank you for your kind words and for sharing that you had the jello knees also.
The tip about standing to the side of the doorways is great! Someting to grab if my legs go.
I don't feel dizzy or have vertigo, but you're right, the stairs and slopes are where my legs go, so it makes sense. And the mino I started again yesterday. Crypto on Monday. Maybe the mino is affecting my ears?
I will look for a fun cane this weekend. The knee-catching is a GREAT reason to give.
I will have to phone the space shuttle and cancel my gig. Haha.
I have been very hot and sweaty these last few days. I have been reading books placed in the 1800's-so I'll call these episodes "the vapours" If this was the 1800's, there would be men swarming me and fanning me after a collapse. Phooey
Will ginger tea work in lieu of ginger capsules?
Thank you for your compassion and kind words everyone. I really think I would be a basket case without you all and this forum. Especially today.
It is hard to explain these symptoms to people without lyme experience, because they just don't understand how something can come and go symptom-wise.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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lyme in Putnam
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posted
Good thoughts.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
I like the idea that it could be vestibular-triggered.
As an alternative idea, it could be temporary dysfunction of the brain's communication with the thigh muscles. Walking on a slope and stepping on stairs both require more from the quadriceps than plain walking. How does it feel when you, at home, support yourself well with both hands (like holding back of a chair) and do a small squat down and up?
At work, when your hands were touching the railing, did the touch make your legs stop jello-ing? Or were you leaning some weight into your hands?
I have problems with my leg becoming less responsive sometimes so this is interesting.
Hope you get a good and restorative sleep.
Posts: 146 | From South | Registered: Aug 2012
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Well, kudo's to you for putting one foot in front of the other to go to work- so hard, I know.
It sounds like a herx to me - crypto/ mino/ Tindimax that's a full load-- hang in there, almost the weekend, hope you rest -- take care--
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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linky123
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posted
So sorry you are having a bad day. Sending up a prayer for you.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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BoxerMom
Frequent Contributor (1K+ posts)
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posted
My husband and I both get the weak legs. It is Babs for me.
I have also cried in the bathroom and put my head down on my desk at work. It does help to acknowledge how awful you feel, even if only for 2-3 minutes.
This is temporary. I think it's a sign of progress.
posted
Greta, Even with a diagnosis, no one knows for sure what causes the body's reaction to it.
I think you are really brave to be putting one foot in front of the other. (Pun intended)
I believe that TF had terrible problems with muscle weaknesses. She is now in remission and has been for a long time.
Take heart.
Posts: 538 | From kentucky | Registered: Nov 2011
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GretaM
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posted
Thank you so much for your kind words, and encouragement. I can't begin to tell you how much it helps me to keep puttering around here, and not giving up.
The squat thing is impossible. It seems like the quads? (the muscles on the top of my thighs), can't support my body weight when my knees bend. I tried going down stairs today...bad idea, my legs gave out, but I was doing the railing thing Keebler suggested so I didn't fall down. I sat down on the step and then went back up.
Elevators only now...
I am going to put some comfrey salve on them tonight to see if it helps.
Thanks again for all your support everyone. I would likely be a bubbling ball of tears without it. Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Dekrator48
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posted
I am right here with everyone else, holding you up, Greta!
You have shown perseverance and strength by going to work even when you are sick and scared.
I am saying a prayer for you. May you feel His comfort.
God has a great plan for your life and He already knows that you will make it through this!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
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posted
- Glad to hear that you will avoid the stairs for now. Going down is likely more tricky than going up, though.
If you are doing squats for exercise, I would stop and just walk or do mild pilates, tai chi, qi gong (that strengthen core and balance).
Squatting is very hard on the knees and back. I ruined my knees with squats.
Likely, this is more about your brain / ear / nerve messages to the legs than about lack of squats.
When you get onto a elevator, do not watch the doors close. Put your focus on a point that is not going to move (well, the whole car will move, of course, but no added motion that could confuse your ear/brain balance center.
Our EYES keep us steady as much (or more) than our inner ear. And if the inner ear or brain balance systems are stressed in any way, the eyes take over so when that gets jumbled with sudden motion, flashes, etc., all bets are off.
[If you can avoid fluorescent lights at your work station or anywhere you go, do so.]
As you get off the elevator, move to one side, away from others until you are ready to move along.
Be mindful of escalators, too.
As you walk near the sides of hallways be mindful of doors that may suddenly open, though. That can be a bit tricky.
I hope you are feeling better soon. Get some roller skates and see if those help! At least you'd have some adventures to report, eh? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Real proud of you I know is sceary when your legs go out at least I got new glasses the last time I fell and a good look at the blue sky hang in there and I mean hang on there. Go home and have a strong probiotic......
Posts: 47 | From new england | Registered: Jul 2013
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GretaM
Frequent Contributor (1K+ posts)
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posted
Dekrator-thank you so much for your kind words and your prayer. When I woke up this morning, I felt like I wasn't in this fight alone anymore
Keebler-GREAT tips about the elevators and escalators! Will be very useful now that I will be avoiding stairs like the plague! And thanks so much for your support. It really make a difference in helping me keep my chin up, I feel empowered by having tips to help prevent this. Make a big difference! Haha! Rollerskates! I sure would decrease time spent limping around! I'd need a siren too, to warn people of my approach! Haha! Lifted my spirit
Gonzo- your post gave me a lighthearted chuckle and helped my spirit too. I wear glasses also, so I can relate! What made me really chuckle was your comment about a probiotic. Yes, in the good days pre-lyme, it would be "go home and have a strong drink", now for us it's, "go home and have a strong probiotic". Haha! Funny Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Keebler, I don't think she is doing squats for exercise - I had asked how it felt to do one squat as part of checking the brain connection to the quads as a second possibility besides vestibular dysfunction.
Keep us updated, Greta?
At one point at work there were days when I thought I would have to leave but wouldn't be able to walk to my car. Eventually I made a couple of friends who I would be willing to have help me walk if needed, and got a walker.
Posts: 146 | From South | Registered: Aug 2012
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quote:Originally posted by gonzo: Go home and have a strong probiotic......
- That is funny! That's the only drinking I get to do!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- treeinatreem,
Thanks for that explanation. Makes sense, now. Missed that part the first time around.
Greta,
Are you getting enough SEA SALT & water? And adrenal support. Green Tea can help, too.
I just remembered that, for me, when this happened for certain periods of time it may have been connected to a low blood pressure from standing or being up too long (any time at all).
All the things mentioned above can be involved but so can POTS or NMH. Sea Salt and adrenal support can help until you ask your LLMD if this might be part of it all.
Check side effects of all Rx you may be taking to see if any lower blood pressure or cause syncope (fainting, but that can also come as tiny short spurts which could appear as legs giving out). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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GretaM
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Member # 40917
posted
Hi Keebler,
My legs are feeling much better today and I am wondering if it was either a herx from the crypto, or a combination of being overheated and maybe low on electrolytes (low blood pressure).
Of course when one is trying to reproduce the cause, in a safe environment, it never happens. haha.
And I am still on the hunt for a cane. It seems to me to be something very handy to keep around. The only ones I could find were plain metal ones, similar to crutches.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
I have two wood canes waiting to donate...not sure how much it is to mail, I would just ask mailing reimburse cause I just got laid off - but they are free. Curved handle, one basic wood, one wood with a spiral cut in it from Wales.
Posts: 146 | From South | Registered: Aug 2012
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posted
GretaM I've noticed that my legs give out when I'm surrounded with too much stimulation and stress. It just drains the energy right out of my body. Florescent lights really do a number on me on those bad days. Also 'too much stimulation' took on a whole new meaning with Lyme. What was normal for me before was WAY WAY too much for me with Lyme. I carry ear plugs to use in situations where there is a lot of noise that I can't escape. Make sure I have dark glasses in the car and keep a cane in the ready. A wheelchair was a necessity for awhile. Wheelchairs and canes are just tools--not part of us or who we are. It was difficult to start but I found that when I took advantage of the tools available I had more energy to do other things that I wanted to do and didn't burn up my energy on getting from here to there. Hugs.
-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
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