Walking from my desk at work to the car is a struggle.

Anyone have a similar experience? How long did it take before you got your strenght back?
 

I hope to give you wonderful uplifting news to cheer you, but this could go either way. some folks go through this for a short period of time, and recover quickly.

Mine progressed to episodes of paralysis...but I am doing quite well in that dept. now!

The important thing is that you keep your doc informed of everything....keep a log, rest when able, etc. If possible, rest before and after any outing or walking-this always helped me.

Park as close as possible to your destination, and combine errands. Spread the errands out throughout the week, and have a permenant rest time if possible where everyone you know, knows about it, so that you can rest and heal.

Don't panic, just try to use your brain about resting and minimal exersize. Try to conserve your energy as much as possible right now.

Take care-terter
 

Nic has about the same problems. One of his first symptoms of Lyme (after the EM and feverlike symptoms) was stiffness in his hipps. Now his right foot is total paralysed and his left foot almost. At the moment his right hipp begins to paralyse. But Nic's battle started allmost eight years ago.

For success stories, you can take a look under every message under 'wheelchair', use your search-machine on this board to find them.

Good luck & Greetings from Holland,

Nic & Ingeborg

------------------
It never was so dark, or it will be light again.
 

I used to find I was too exhausted to walk that far --that my legs would burn as though I had run a mile and had lactic acid buildup. That alternated with difficulty from joint pain and muscle tightness. And still later, I had problems walking more than a block because of hypersensitive feet due to neuropathy.

Each problem waxes and wanes. While you don't want to stress your body, not moving can cause atrophy fairly quickly. Some of this may worsen or improve as treatment continues. I've found that all improved greatly over time.

Good luck.

My problems are related to muscle pain, atrophy, stiffness and fatigue/weakness (my neruo says no weakness is present). I have no paralysis and minimal sensation loss. I definitely have more problems walking when I'm in pain than when I'm not.

The problem is also more prevalent in my left lower leg than my right, although both my hips hurt equally as much.

I'm very nervous about it leading to not being able to walk. I hope that the new abx that I'm on turn that around.

 

I am back on the abx for 2 months now and am seeing improvement to the point where I can actually consider going shopping (just for fun!). But there are good days and bad, of course. Today is not good because my legs are killing me; I suspect because I've done more walking than usual over the last few days.

There are times when my legs feel like tree trunks and too heavy for me to lift. There are other times when I feel pretty darn good.

Mathias, I hope you are doing better. I know what you mean about walking from your desk to your car! My office complex is large and it's a hike just to get to the ladies' room!

I've been on IV Rocephin for almost 4 weeks and I think I may be seeing some very slight improvement.

I also have good and bad days. It does seem to be somewhat dependent on how much I do.

I'm planning on starting some light physical therapy this week to help build up my strength.

Do you consider your problem to be weakness or fatigue? I see my problem as being weakness with fatigue on top of that.

How long have you been sick (sounds like quite some time)? How long were you on abx before? Are you on IV or oral abx now?

Thanks for bringing this post back up!

 

That kept me going for about 10 months, and then things got bad again.

The heaviness in my legs feels like weakness, but my leg muscles are very well developed. I think what has happened is that somewhere in my central nervous system signals do not get to the muscles to work. I was told by a physical therapist that I have an upper motor neuron disorder. For instance, I can't go grocery shopping and "scan" the aisle. I'll end up feeling like I was hit by a bus.

I would be happy if I was back to the way I was in 2001. It was much better compared to the way I am now.

I have to believe that I can get better. It will just take time, medication and determination.
 

Your PT told you that you had upper motor neuron damage? That is interesting. Do you recommend your PT (by email?). I just started going this week. Definitely don't think my PT is qualified enough to determine that.

As for me, I've lost some muscle mass but I still test as being quite strong. My legs always feel incredibly weak though and if I do too much I get exhausted easily.

 

I read your posts and think you and I got bitten by the same tick. You seem to always post about my symptoms.

I've just started having muscle pain, joint pain and weakness in my legs. Last night I was at a reception, and was fine, until I left. Suddenly I felt like my legs couldn't hold me up.

I think mine is the start of a herx.
 

That is interesting.

If it were a herx for me, it would be an awfully long herx. I actually think that I have some nerve/muscle damage at this point. Hopefully, PT will reverse some of that damage.

How are your blood test results for lyme? Are you seropositive or negative? Just curious due to the symptom similarities.

[This message has been edited by Mathias (edited 22 April 2004).]
 

I tested positive on an Elisa, and IGM Western Blot. I don't remember the bands, but they weren't the CDC guidelines.

My LLMD believes I have salmonella and strep as co-infections. I'm not 100% sure in believing that yet.

I definitely needed the PT. I don't know if it was damage, as much as my muscles no longer knowing how to work correctly. It took months for me to be able to relax my shoulder blades. What I thought was relaxing was actually tensing.

Are you taking any medication to treat the muscles as a symptom? In my case, I think it was the addition of Flexeril, a muscle relaxer, that allowed the PT to work. I'm also hoping it will reduce pain from herxing.
 

So far nothing has been prescribed for the muscle problems other than extra magnesium.

I've also tests positive (barely) by ELISA. Negative IgM and Band 41 IgG Western Blot.

I definitely need the PT.

Cave,

Thanks so much for the boost and gentle reminder.

The past two days have been pretty bad (I had some real strange tongue symptoms) and I think that has made me a little depressed about my prognosis.

That is an interesting thought about the problem with the signals from the brain. Maybe that is my problem too, since neurologists say I'm not weak but I feel extremely week.

Do your muscles twitch? Mine do constantly.

 

Don't be shy if you need something for the pain. I was seeing a pain specialist before I got the Lyme dx. He's what many would call a duck probably, but he's helped me treat my pain symptoms so I can function.

My LLMD agreed I should continue seeing him, because he is helping the symptoms while we attack the lyme.
 

Also, going grocery shopping is equivalent to running the marathon for me. The therapist also told me that walking down the aisles and scanning them for products is very difficult for someone with my problem. (She offered this without any input from me). Now when I shop I keep my head down and head for the areas I need to go to. It does seem to help.