paralysis before treatment

Ive been doing tons and tons of research with no help. I would like to hear some stories of people with paralysis before treatment and if paralysis was reversed.

  Seems most info or movies I find is people experence paralysis during the antiobiotic treatment and then return during break to not having the paralysis.

 I have a friend that has had lymes for a while, probably 2-3 yrs before treatment. Before treatment started he lost the use if one arm and unable to walk without help. During the treatment of antiobiotics he gets worse and mostly bed ridden. During his break he goes back to normal, which is the paralysis.

 How many peopl that had paralysis BEFORE treatment had them reversed. Most info I find says the late stage lyme treatment can be cured but the paralysis damage is not reversed.

 He started treatment in july, 5 days oral and 5 days IV antiobiotics and then 2 weeks off. He will be starting his 4 round this week. We fly to DC every 4 weeks.  He has not gotten any better and has lost just about all use of the other arm. He is also experiencing lost of facial muscles with his mouth. He has a hard time talking and can hardly hold the straw in his mouth anymore

thanks for the reply, we are leaving tomorrow and was hoping for some answers. We go to the jemsek clinic in Washington DC.

in between the treatment protocol he does IV saline ringer to flush out the system. I alsom have him on herbs and suppplements. B12 shots, CoQ10, NAC etc.

The biggest thing that worries me is he is getting worse. During this break off the antibiotics his speech and mouth strength has gotten worse. And he'll be starting the antiobiotics again tomorrow.

I go to their house about 3-4 times a week and help with showers and his strength is not getting any better. I still have to pick him up out of the wheelchair to get in and out of the shower and help him walk. When he started the treatment he could walk alot easier with assitance.

My biggest concern was since the paralysis was there before treatment started, whats the chances of getting any back. Both arms have atrophy alot.

I too have serious physical problems.

I have lost the use of my left hand and arm. I cannot walk unaided and have drop foot on the left side. My left side is very weak. Lots of left hand and arm atrophy too. If my right side goes, I'm a goner! I also have muscle and joint pain from my hips down.

I have searched high and low for the same answers. I have read "stories" where people regain all their strength but the atrophy remains. In my case, I think the damage has been done but I am always hopeful.

I have been on antibiotics since July of this year and have noticed no change (better or worse). I have only been on IV Rocephin for 5 weeks.

Have you seen the move, "Under Our Skin"? It shows a few people with physical disability. Read about Dr. Martz. Dr. Martz had ALS like weakness and has regained almost all his strength. People DO recover!

It is very frightening to lose function and I wish I had a friend like you.

For now, just try and get your friend all the adaptive aids he needs. You can call your local MDA office for loaner wheelchairs, beds, etc.

When I first began losing physical function, I thought I had ALS so I was in touch with the ALS Association and the MDA for support. I still am an ALS "patient" on the Patients Like Me website because I have made many friends and they have very good ideas with how to cope with the loss of mobility.

After I was told I had Lyme and not ALS or MS, I thought I would get antibiotics and be much better quickly. Well, I have not had any changes. I hear it can sometimes take years to see any real significant changes and I have thought of going to see the same Dr. in D.C. as your friend. I used to live in D.C. so I have family to stay with there if my treatment in Michigan does not work out. Please let me and or the rest of us know how the appointment goes.

I'm sure Dr. J. will have better insight as to why your friend is getting worse. Maybe the bugs are just fighting back hard or the right combination of antibiotics have not been found.

It's sounds like your friend is in good hands with you as a friend and a well respected doctor.

If I do notice any changes, I will let you know. I too have not found anyone who has terrible physical symptoms so as sorry as I am to hear this tragic post, I feel less lonely knowing there are other people out there a bit like me.

Post Edited (Wiseguy) : 11/6/2011 9:24:22 AM (GMT-7)

When I found out I had Lyme, I went to the Internet to read everything I could find. There was a girl on you tube who had some treatment relapses and had to have a feeding tube placed because she had trouble swallowing and had lost weight. It sounds horrible but feeding tubes are not bad at all and don't have to be permanent.

A gastro doctor will be able to help.

My left side became very weak. I could walk but I couldn't support all of my weight on my left leg. My left arm was very weak and I couldn't use my left hand, it didn't work. I would strap my left arm to the steering wheel and use my shoulder to steer when I needed to shift gears. Obviously my brain wasn't working right either because I did this while driving around with my young daughter.

I would get better on antibiotics but the weakness came back shortly after I stopped. I ended up on antibiotics on and off for about 4 years. Eventually I was able to stop antibiotics without going backwards. I've been off antibiotics for over 15 years and I've been pretty stable. It took a long time to get the strength and coordination back in my arm.

thanks Dagger for the info. Glad to see you got your strength and coordination back, sorry it took 15yrs.

 We fly to DC today. We talked a lot last night and he says he is with peace with what is going on. I believe him because Ive known him for so long. He says this inst life, for the last year only being able to watch TV and the last 8 months or so have no freedom and getting worse.

 He's been off the meds this time for 10 days and last night he could barely talk. He says if it wasnt for doing it for his family he wouldnt. Sometimes I really cant blame him

Were in DC now and 4th appt is this afternoon. This will be 5 months of treatment and no improvement and has gotten worse.

The trip was hell becaue our flight got cancelled and we had to and had to do a connecting flight. It about killed him.by the time we were changing flights had to drag him out of the seat to his wheelchair.

Seems the census is the is going to be a long time befell any improvement. If any with the paralysis. He has no use of either arm,5 months he had use of one.he cannot walk without assisted more then 5 feet. 5 months ago he could get through the whole house as long as someone held his arm. No he is losing his ability to speak.for the last 5 months all he can do is sit on the couch and watch tv.he says this is not living and i have to agree.

his question is when is enough enough when your getting worse and no improvement? Will a doctor ever say your not getting better. He doesn't want to do this for years and nobody has any answers

Mook,
I am so sorry to hear of your friend's deterioration. It must be hard on you too! Have you asked your friend if he wants to try some other form of treatment? Or maybe use a doc that believes in abx and herbs? There are a lot of improvements being reported by those using both abx and herbs. I use herbs only and have had an amazing recovery so far, but I know that's not everyone's cup of tea -especially when one is so very ill!

Is your friend doing anything to detox? I can provide whatever information you need to show how important it is to detox if needed. We encourage members use detox baths and/or foot baths, dry skin brushing, and drinking lots of lemon water to help with detoxing. Those are the more gentle ways of detoxing when done slowly.

Since he's continuing to get more ill, and he is so far down now, maybe it's time to think about finding another doctor? If nothing else to get a second opinion.

Few years ago I had a brief period of paralysis in legs that lasted about 30 minutes. Drinking a lot and urinating helped for the next month though I was in bed most of the time due to leg weakness. Figured it's lyme. Then I started oral abx, 400mg doxy, 2000mg amoxicillin, 500 mg azithro. Herx made it worse one week a month. Within few weeks I could drive. After 3 months I could take walks at work with coworkers. 6 months later I was mostly fine. 1 year later I stopped abx. 6 months after stopping symptoms came back. I started abx again, lesser dose. After 9 mos I thought I was fine again. I stopped and it came back in a month. This time I had few second episodes of losing my right arm. It would just disappear as if I never knew how to move it. Then it would come back. This happened for a few days. That was 2 weeks ago. Now I feel OK for the past week. I don't know how much more I can take abx. I still have joint pain and pins and needles.