This is topic Anyone come back from bad neuro? in forum Medical Questions at LymeNet Flash.


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Posted by Neville (Member # 5890) on :
 
Hello,

My story is a long one, but I'll just say that I

was off abx for several years and doing passably

well. Then early this year I started having some

bad neuro symptoms. Weakness, dizziness,

headache, muscle spasm. They got better for a

few months and now they're back and my Dr. says

I'm starting to tremor a little. MRI was

normal. I started back on abx today and will see

Dr. J in SC in a little over a month (I saw him

years ago). Naturally, I'm concerned about

long-term debilitation. So, anybody come back

from the edge of this with treatment?


Just looking for some hope.

Neville
 
Posted by Nicole_Denise (Member # 20620) on :
 
Hi

I know a friend of the family who's daughter had absolutely debilitating neuro symptoms.

She couldn't feel her feet from her ankles down, or her hands.

She was so nauseous she couldn't keep fluids (even water) down.

She was bed-ridden, and had to get fluids through an IV.

She went on IV antibiotics for 5 months, and got a lot better.

And now- after just less than a year of treatment (hardcore oral antibiotics) she is 90% better.

She hasn't had a muscle twitch in 6 weeks, and it was muscle twitches (minor ones) and cramps that were last to leave.

So there is definitely hope!

[group hug] Good luck with your treatment!
 
Posted by Neville (Member # 5890) on :
 
Thanks for the reply, Denise!

It helps so much when feeling lousy and staring

down this kind of trouble to know others have gone

down this road before and have had positive results.

Thanks again.
 
Posted by sixgoofykids (Member # 11141) on :
 
I had bad dizziness, balance problems, disorientation, very weak, trouble reading, trouble talking, trouble writing, no short term memory, got lost driving, etc.

Now, aside from some minor short term memory problems that still seem to be improving (but I don't know whether it will ever come back completely), I'm fine. Feeling about 100% normal these days .... with a few minor symptoms that pop up here and there.

Bart treatment was important for my cognitive symptoms. I did long term abx, strong combos. After 20 months switched to Bionic 880 (there are threads on here and a lot of info on my blog, look at Oct.). Now I use the Bionic about once per month and take supps to keep my immune system strong and kill parasites.

It can get better. It takes perseverance and constantly evaluating what treatments to use. Go with your instincts.
 
Posted by pepperspeck (Member # 18837) on :
 
8 years ago I could not walk without serious difficulty, could not walk up or down stairs. I did not have the strength to pick up a pot off the stove and dropped more dishes and glasses then I care to remember. My muscles and my brain were not connected.

I remember sitting in tears because I could not figure out how to put my bank statements in monthly order to prepare them for tax preparation.


I would get lost going to a place that was familiar, I'd get lost in a mall that I should have been able to navigate blindfolded.

After long and aggressive treatment,along with exercise, the neuropathy improved and things improved. I still have issues, but am so thankful that I am not were I was and most importantly I did not continue to go downhill.

Cognitively, I can say that with the exception of periodic brainfog, I am near normal. [Big Grin]

As I was going through it, I did not ever think that I was getting better though. I am glad I never gave up and never will. So, yes, I feel that there is always hope.
 
Posted by sixgoofykids (Member # 11141) on :
 
Pepper, I had forgotten about holding something in my hand and it just falling on the floor, it was like a brain disconnect .... like my hand forgot to keep holding the object.

The bank statement provided a huge challenge ... I remember when I told the PA that I balanced the checkbook for the first time in months and she considered that great progress.

You are also right about exercise. It played a huge part in my recovery. Also eating right and detoxing.
 
Posted by Neville (Member # 5890) on :
 
I really appreciate all the encouraging responses! I'm not new to Lyme, but I am new to these aggressive neuro problems. Fog I've always had, and arthritis, and fatigue, minor cardiac issues and more. These all either improved or I learned to live with. But losing balance, feeling shaky and weak all the time, and now having blurred vision is somehow more disturbing than any of what I had before.

Thanks for the hope,

Neville
 
Posted by karenl (Member # 17753) on :
 
You can have blurred vision from mold.I have it when I enter a building which is not mold free.
Read personalconsult.com and type mold in the seach field.I also have blurred vision when I detox too quick, then I see thing double.
Watch if it happens in the same buildings, like stores with paper...
 
Posted by BugBarb (Member # 210) on :
 
I had bad neuro lyme...overall weakness, right sided weakness mostly, all sorts of weird neuro feelings...buzzing, loss of sensation, "ants living uder my skin", serious brain fog, crushing fatigue...etc.

I was on pairs of antibiotics for six years.

I recovered over 90%.

I'm back due to reinfection with different symptoms.
 


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