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anna1980

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Gi everyone.This is my first post since a lonf time.IM still without diagnosed.As you remember or not, I had twitching since 10 months.My first emg was clean, second also but third was full of sharp waves and fibrilations.I also had 2 tests positive for Lyme, but after 6 months of abx there is no improve.Now I feel tired and it is hard to get up every morning.My tongue seems to be flat and my legs are weak and I cant walk like I walk a couple months before.Ive been to 5 neuros (one is my friend, was neuro muscular neuro, one was an assistent of the head of the clinic).All 5 said, that Im healthy, all my reflexes are ok, strnght exam ok, no clonus, no Babinsky sign etc.All said, that my EMG is not a good one because it was made by not really known lab. and made by the assistant.Im so confused, all said "no ALS, stop visiting neuros blah, blah, blah....".I just want to shere with you with all these crazy things, because Im freaking out.My family and my boyfriend do belive in neuros diagnosed, but me not really.You are so great and always gie me strnght.
 

CindyM

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Hello Anna- so nice to hear from you again! How are things over in Poland?
It is amazing and very discouraging that it takes so long to solve some of these neurological issues, isn't it? Being in the same boat as you, I can certainly sympathize. Hang in there! About the only thing you can do is focus on your family and friends and do as much with them as you can, while you can. At least that works for me, most fo the time!:-D Regards, Cindy
 

ltr

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Anna, I am so glad to hear from you. I have wondered about you quite often and had imagined that you were cured and went on with your life. So, I hope you know how disappointed and sad I feel for you that you are still sick. I know what a struggle it is to get a diagnosis and treatment, only to find that you have more symptoms. The good news is that after 10 months you would probably know for sure if it was als. I know there are those rare cases that drag on for much longer. Even though you know there is something drastically wrong, try to believe that it is not als and maybe look into other things that it could be. Keep in touch.
 

anna1980

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Thanks girls, it is so good when somebody understands what you feel.Im tired of those neuro's visit and words :You are healthy".By the way I was hoping that somebody will explain me one thing.I cant walk longer than 1,5 hour because of fatigue and pain in my, back, legs, heels etc.But 2 weeks ago Ive been on my friend's wedding and I wore high heels.I could dance, walk without pain and fatigue.What do you think why high heels making my walking easier?
 

Jamiet

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Anna,

Hello.... we are in the same boat. The thing is, that your lyme test you took are very very very accurate with a Postive. The DNA test for the lyme is the most accurate if the DNA is found. It's 100% when +.

So, you must keep with the treatements ok. I see you are on orals, you need to switch to IV. I have started IV Rocephin 4 days week, 2x's / day. I had a mediport put in my chest, as my abx will be a min. of 6 months or likely a year.. I am also taking orals for babesia. The IV seems the best way to fight lyme, it works for 99% of people that use it. I have to pay from my pocket, it's a litttle expenisve, but obtainable.

You need to get with your doc and get on the rocephin. Listen, it may take 4 - 8 months for the IV to work ok. Go to lymenet.org and look up the stories. At least 1/2 of them didn't feel better until the 6, 7 or 8th month, so you need to keep at it.

We are in the same boat. We don't have ALS ok, we gotta keep pressing forward with treatmenet.


rgds,


jamie
 

ilgal

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You know Rocephin is ceftriaxone which is now in a big clinical trial for treatment of ALS? Also given twice a day via central line (port in chest). I'm being screened to be in trial.
 

pldo

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Jamie,

Are you feeling any better?
 

anna1980

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I know that Annamarie probably has her DX and Im terribly sorry.But I want to share with you great news.I had 4th EMG yesterday.And is totally clean-they did only 4 muscles, but 2 of them were with fibs. and waves in the last EMG.So I think it is very important to do EMG in a good clinic.So I know that is something wrong with me, but I hope it is only Lyme.
 

CindyM

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that is good news, Anna. Keep up with your treatments and stay srtong and positive. Cindy
 

pmbenb83

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Wow, that is very good news! Thank you for letting us know and please keep us posted on how you are doing. It is so nice to hear good news, which gives hope to those who are still undiagnosed.

Take care.
Pam B in Va
 

Jamiet

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Anna,

Can you get ceftriaxone in poland. It's also called Rocephin.. It is done by IV, you need to get on it.

rgds,

jamie
 

anna1980

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Jamiet,

I've been on a this abx for a 45 days and after that I took orals.Right now Iam not taking any abx, because my body need to rest from all those pills.
 

kathmc

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lyme meds

Hi,

I understand what you are going through with Lyme. A wristwatch or earrings felt like they weighed a ton back then. I would have to take them off. I was sick for 8 years when a test came back positive. I was on oral antibiotics for 4 & 1/2 years & it was 6 months before I even had thoughts of doing something that required any energy.

A word of warning, the lyme bacterium can become resistant to a med--esp when you discontinue it. Good luck. ALS seems like uber lyme to me--so much of it is alike.

kath godell ( a shortened Polish name )
Lexington, Ky.
 
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