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» LymeNet Flash » Questions and Discussion » Medical Questions » anyone struggling,walking?

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Author Topic: anyone struggling,walking?
beatlyme
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I was wondering about others whose legs have failed them>I can only walk ,BARELY,using a walker,,very weak legs,amongst other problems.Been struggling for 8 months.On biaxin/paquinel,,not much notice,also have full body twitching,dizziness,anxiety,etc.etc.Loosing hope!
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steelbone
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Are you seeing Dr D by chance?

--------------------
All The Best,
Paul
[email protected]

The harder you work the luckier you get!

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beatlyme
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yes,you know the protocol,ha?
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steelbone
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pm sent

--------------------
All The Best,
Paul
[email protected]

The harder you work the luckier you get!

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njgirl14
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beatlyme

I am struggling too. I use a walker or wheelchair. I have the weak legs and sometimes even standing with the walker is hard.

I think it is babesia. I have read leg weakness can be a babesia symptom although most drs don't see that as a typical babs symptom. Evertime I stop mepron I can not even stand up from a chair.

I can not work, drive or do much at all. I hardly leave my house other than dr appts. It is hard on my 2 kids.

I can relate to what you are going through.

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bettyg
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welcome beatlyme! so glad you found us!

WELCOME, would you like a FREE copy of my newbie package of 118 pages info galore sent by a PRIVATE MESSAGE here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?

I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!

also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.

most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!

If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you!

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peto
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Hi there,

I too suffered from weakness-especially legs, swollen knees. I

could not drive or even hold a coffee cup. Since starting Biaxin and

Plaquenil 2 months ago, I am doing much better. Climbing stairs is

hard, but walking improved! I have started physical therapy and am

getting progressively stronger. Do you think you have any

coinfections? I have Bartonella and I think that was contributing

to overall weakness. 8 months and no improvement seems

harsh. Maybe it is going to take some time, or maybe you have

not found the right combo of medications yet?

Take good care.

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METALLlC BLUE
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I struggled terribly, however overtime, with cycling antibiotics, it took me about 4 years to really force through and recover enough of my health to start my rehabilitation.

I did my rehab at home, stretching gently, initially all I did was move my legs or arms gently, for 5 reps, or maybe 10. I would do some gentle crunches on the floor etc.

I got myself an exercise mat, and I began with that. Eventually as my strength improved I could walk, then I started riding a stationary bike. My diet and nutrition was important, so I eat often.

I had a lot of trouble eating given my digestive tract was destroyed, so for a while I relied on bodybuilding supplements. I used to weight train prior to my illness becoming debilitating. Bodybuilding supplements can be highly effective for providing needed nutrition in a condensed method. Whey protein can be useful for blending or shaking in a shaker bottle with some water or some milk (Or whatever you can tolerate).

At any rate, I began making complex shakes as my G.I. system healed. I'd add cottage cheese, oatmeal, protein powder, yogurt -- you nail it, and I put it into my shakes. Olive Oil, Eggs (I don't recommend others do what I did with raw eggs). Lot's of fruit.

These types of meals helped my muscles grow and keep the inflammation reduced a little bit. It helped my digestion significantly, bowel movements were much better etc.

As my muscles and joints healed I began doing squats, leg lifts, push ups. All my joints still pop and crack even today, but by warming up for 5 minutes, spinning the arms, lifting the legs doing hip raises and throwing some gentle punches, I could get my joints ready. Wearing a big sweat shirt is important for the joints and muscles, as well as sweat pants. This keeps the heat in, which is what you need when exercising, especially with Lyme.

Finally I began lifting heavier and heavier weight. I got a lot stronger over 2 years.

So, at first, do very little, just moving a little as you feel the antibiotics helping you. Aerobic exercise eventually will be the goal. Moving the joints gently like on a stationary bike or an eliptical would be good.

Start small, then begin walking without the cane as the antibiotics work. It may take a year, two or even three, but you'll know when you're ready.

The most important thing, is to treat this like a challenge, like you're determined and passionate about meeting this challenge head on and building the fire inside to make your will as though it were iron. Will and faith in your ability to create the outcome -- constantly thinking about it, and saying to yourself that you can do it -- will be key.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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justwondering
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Difficulty walking has been a persistent symptom, although it does come and go with severity.

When I am herxing or having a bad day, it is definitely worse.

It is from pain, stiffness and just a feeling of not being able to coordinate my legs the right way.

Family says they can't notice it, but it makes me self conscious.

Anyway, I hope you find relief of this with treatment!!

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beatlyme
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you people are encouraging me tremendouly!
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lou4656
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For anyone who is interested in walking/exercising:

Please join us in the Hikers/Walkers group in General Support. You will find a group of us Lymies there that are trying to incorporate walking/exercising/just moving back into our lives.

We encourage each other . . . share ideas . . . hand hold . . . give hugs . . . motivate . . . whatever support is needed in getting moving again.

We would love to have others join us [hi]

--------------------
LouLou

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lymeladyinNY
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Dear beatlyme, walking has been one of my single biggest challenges since becoming a Lymie.

Leg collapse and hip weakness were my first symptoms.

Last summer I beat back bartonella and my walking improved significantly. In fact, my wheelchair was forgotten in the back of my van for months.

Unfortunately, the bartonella seems to have returned with a vengeance and I am now using the wheelchair again. I can barely shuffle along. And, boy, do my legs ACHE!!

I'm not going to get discouraged, though. I have a phone appt. with my LLMD on Thursday and I'm hoping she'll put me back on levaquin, which is what helped me the first time.

"One step forward, three steps back!" [Roll Eyes]

- Lymelady

--------------------
I want to be free

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beatlyme
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hang in there lymelady,,you'll do it again!
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METALLlC BLUE
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Oh yeah, you can do it, seriously. Remember you have a lot of tools are your disposal. Don't be afraid, remember -- the impossible just takes a little longer. I say that all the time. Even when you're in pain and everything seems to be turning to ****, just remember it's part of the process. It's a persistent battle, with intermittant break periods. Well, you have to take breaks, but the infection won't!

Just give yourself all the weapons you need. The biggest one really is your attitude and the willingness to choose recovery. Wishing and wanting aren't enough, you have to choose it every single day, sunshine or rain, pain, whatever -- you have to choose and totally dedicate every minute to making it happen. Your LLMD, your supplements, friends here, books, whatever you can use to aid your recovery, use em' -- fight fight fight!

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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Lymetoo
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GET TREATED FOR COINFECTIONS!!!! Staying with your dr will not accomplish that goal!!

PS...You have two threads on the same topic. You can delete the other if you want.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Rianna
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I could not walk any distance, well actually was bed bound for years and then when treated for lyme things improved. With Lyme treatment things improved gradually although I became intollerant to AB's due to my neurotoxin load, recently before going back on to AB's I did 3 months of the Toxin removal protocol Actos/CSM/IV Glutathione - With high dosage NAC/Vits and mundipur and my walking has improved by 30-40%. Mind you the herx from drawing out he toxins was far worse than any AB I have ever taken - but the benefits now are so worth it

So things do improve over time as long as you treat Lyme/Co-infections and Neurotoxin load all the way through your antibiotic regime as these neurotoxins in them self can totally debilitate you.

Rianna

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METALLlC BLUE
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I agree with Rianna. Take co-infections seriously. Dr. D doesn't.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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tic chick
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Beat,

I struggle with this daily.

People look at me like I'm drunk. [dizzy]

Maybe I will prove them right and tie one on ;(

Is this instability from Lyme or Babs?
Tic

--------------------
Adversity is the diamond dust heaven polishes it's jewels with. Robert Leighton

Daily world-wide prayers welcome for the Lyme Community - every day at 6:00 p.m. Pacific Time and 9:00 p.m. Eastern Time all faiths welcome!

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METALLlC BLUE
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It can be both, though Babesia often is heard more often in that context to be the more severe of the two.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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Rianna
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Balance/vertigo inability to walk far for me was Babesia and Neurotoxins, I had a positive romberg test and could not stand up for any long period and after toxin removal protocol this improved dramatically - I had it for 7 years so bad I had to attend a balance clinic.

Its still there and flares when babesia flares but very different than before neurotoxin removal. Hopefully another high babs protocol wil help it further

Rianna

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METALLlC BLUE
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Once again Rianna hits the nail on the head. Take detox seriously. Ask around for information. You have a lot of options in that respect.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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beatlyme
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thanks to you all for all the useful information ,and encouragement
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lou4656
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Beatlyme -- There are a number of Lymies who are struggling with walking in the Hikers/Walkers group in General Support.

We would be happy to encourage you . . . support you . . . hold your hand . . . in your effort to get moving again.

Hope to see you there.

--------------------
LouLou

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tic chick
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Below is a thread from Oct 07 regarding problems with balance & walking.....

http://tinyurl.com/3utjwv

Tic

--------------------
Adversity is the diamond dust heaven polishes it's jewels with. Robert Leighton

Daily world-wide prayers welcome for the Lyme Community - every day at 6:00 p.m. Pacific Time and 9:00 p.m. Eastern Time all faiths welcome!

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4Seasons
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Check out the recent post by Bugg of "IMPORTANT - help with your leg pain", about hypomagnesia. My 13 yr. old daughter is now completely unable to put weight on her legs and is using a wheel chair since last week.

I'm going to up her magnesium and talk to the doc about testing her levels. She is fighting Babs as well.

Marla

--------------------
"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."
Anonymous

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beatlyme
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it's helpful to know I'm not alone battling this disease
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njgirl14
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Maybe those of us that are struggling with walking or can't walk could support each other in the exercise/walking. Don't know about you all, but I am more likely to do it if someone is checking up on me.

I know I need encouragement. The treadmill and exercise bike in my lvrm are getting more use hanging laundry on them (I know looks great!)

I was thinking of getting a pedometer(?thing that counts your steps).

Whose game??????????

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maureen2174
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NJGirl- where do you live in NJ? I have been meaning to ask you.
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KLewis
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Beat Lyme,
Fora few weeks now, I have been in a wheelchair most of the time. I started falling... I mean I stumble and have vertigo sometimes but then all the sudden withought those....I will fall, not put out the hnads to catch m yself but just check out for a moment and fall, head firt. The other day, I ws outside adn stood up to look at acow who was mooing and all the sudden next thing i knew I fell sidewaYS and hit the ground so hard I believe I haD A CONCusion. I felt terrible I haVE bruises all over my arms shoulders hips and legs...it's a; terrible picasso. lol. Then I have started haveing seizures. WE suspected by James noticed the other morning a full blown seizrue. WE suspectedthem at night adn Dr. C gave me some Klonopin to help with jerking, twitch and such but it is a mildk antiseizure meds and instad now, I'm seizing. I have tought with no experience that I had done so before beut had no way of really knwoing. How does one know for sure? I do't rremembr them...just get up off the floor or ground. James says it is weird I don't try and save myself by putting my arms out to stop the fall...I just fall.

The doc hoped it was the flagyle but i've been off of it foro a while now...and no good neews. just another sym ptoms which probably correclates to my mini strokes in October-december.

Please praY FOR ME.
pLEAES pray for my husband who has to put up with me.

I hate this and what it is doing to us all.

Bless you,
Sister KImberly

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Rianna
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Sister KImberly - Please get batronella checked as it can cause seizures. It is also sometimes better to calm the cns down with a Benzo (Small dosage diazapam for me works very well).

I wish you better
Rianna

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canbravelyme
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Sister Kim!

I have atypical seizures, which are difficult to receive a diagnosis for, by a non LLMD neurologist.

However, I've done considerable reading, and crashing to the ground as you're describing could be a tonic seizure:

www.epilepsy.com/epilepsy/seizure_tonic

Could you see a neuro? It doesn't have to be about Lyme. I'm on Lamictal and Lyrica, and I'm experiencing some life again.

Best wishes, [group hug]

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.

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njgirl14
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Sister Kim

I wanted to say to use whatever you have to help you like a wheelchair,walker or whatever. It is temporary and if you get hurt it will hurt your recovery.

I know cause in the beginning I didn't want to use a cane even though I needed it and I fell and broken something and had to have surgery. I have gotten worse as a result of the trauma. Be careful.

Maureen - Not to far from Pallone's office. How about you?

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KLewis
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Aw you guys are great.

I luv you!
Iam still mostly in the chair...better to be safe.
I looked up on seizures and it seems I could fit in 3 different catagories of then

Atonic Seizures (also called Drop Attacks)

Myoclonic Seizures

Generalized Tonic Clonic Seizures (also called Grand Mal or a Convulsion)

Althought I've only had one Grand Mal that I know of. I have the others often now.

When I raad "drop attacks", I was like okay...now I understand, lol.

Right now there is definately NO money to see a neuro.
We are still paying for the phone calls and such to Dr. C before my next visit in June.

I will call and see if he can give me something else to help in the mean time.

Any suggestions?

And any good reading on the connection between lYme and seizures?
Blessings and love,
Sister KImberly

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lymebytes
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I was just thinking the other day how LD attacks the legs. My legs hurt non-stop - from tendon pain to nuero and I have had weakness as well, but pain, pain, pain.

For muscle twitching take magnesium citrate, my anxiety is only relieved w/Xanax and it helps pain.

Vertigo and dizziness - had it - horrible, I sympathize.

Talk to you LLMD about ways to relieve your symptoms.

--------------------
www.truthaboutlymedisease.com

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