posted
Hey guys sorry to write again but i can barely type this post. It hurts to swallow now (left side only), left shoulder extremely weak, left hand is hard to use, still strong but pinky and ring finger wont do what i want it to do, i keep mistyping things. EMG a month ago would have found ALS right? It came out completly normal.
Does ALS move this fast in one month? Doctor keeps saying it is not ALS, he would have seen it in the EMG and in nero clinical exam. I did start Biaxin about 8 days ago and now it seems i am having very hard times, right pinky still numb. Going to see neuro again within the next two weeks. Maybe he will say something different this time.
I want to believ this is Lyme but how do you keep up hope? People in my life are thinkin I am not that sick but i truely am. Having a hard time talking today. Life is no good right now.
Posts: 167 | From Los Angeles | Registered: Jan 2006
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quote:Originally posted by luke339: I did start Biaxin about 8 days ago and now it seems i am having very hard times, right pinky still numb.
Hmmm...sounds like the Biaxin is kicking up the keets! Remember, you will get worse before you get better. That is extremely difficult to get through and to keep your sanity, so I would suggest you do ALOT of reading here.
Be sure to go to Treepatrol's links and read all the ones about ALS. Most neuros would be able to find ALS. They are NOT good at finding Lyme.
Hang in there. At least you now have hope of getting well!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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suki444
Unregistered
posted
Hi You are over a week into antibiotic therapy and things get worse before they get better, the worsening of your symptoms is the bugs dying and is a normal reaction. Just keep going and get a knowledgeable Lyme doc.
Lyme can be misdiagnosed as ALS or MS, but for you, the damage has not done that or the tests would have shown it up.
I too was terribly ill, M.S. type symptoms and started on an antibiotic similar to you...I felt awful, limbs and hands weak and my pinkies visibly shook, got a all over dotty rash...I continued with antibiotics and these symptoms have gone!
It just takes time, and a lot of it ... just hang in there and check in here when you need support!
Life is cr*p with Lyme, but it gets better..honest
hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
welcome aboard!!
there is help and hope here, honest!!
on the way to health and wellness
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
hey luke339
Just remember that when you have lyme and you take your abx your, symptoms can worsen before they get better,due to herxing. You can even get symptoms you never had before. Your killing off the ketes and stirring them up. The die off can make you feel worse before you get better.
It can take a long time- depending on how long you where sick before treatment,how viralent your strain is & any co-infection.
If you had true ALS I don't think you would have any reaction with the abx. Spyhillus(s.p.?)and lyme are just about the only bacterial infections on the planet you can herx from.
Other infectins you start to see improvements quite soon.
Hang in there.
Don't listen to the people who say you are not sick. They just don't understand how complex lyme is. Pay them no attention.
I promise it gets better.
you will have good days again.!
You may get worse before you get better. This is just the way it is with alot of people.
Keep picturing yourself whole and healthy. Hold on to this picture . It is not that far away,
never give up hope.
Where there is life , there is hope
It just may take some time.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Force be with you Luke---especially when trying to convince others how sick you feel when you like just FINE.
You look:
you feel:
I recommend HIGHLY recommend the book "You dont LOOK sick" it is inspirational AND funny.
Sounds like you are stirring up the disease. Go slowly. DOnt over do it.
Slow and steady wins this race. trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
One of my worse symptoms of my neuro-lyme was stammering, stuttering, mixing my words etc. Especially because I deal with the public every day and got so frustrated with my ability to speak. (Short term mrmory also tanked....
I was diagnosed last August, put on Doxy for 2 months, tetra for 1 month, then finally got to see my LLMD. For last 6 weeks on IV Rocephin and 1500 mg Flaglyl every day.
I can talk normal, but still have numbness in face. Very depressed, weepy, and fatigue is back. Just came down with bronchitis, a sinus infection, and yesterday a urinary tract infection.
And to top it all off I quit smoking on Monday.
But in answer to your post.... I swear I was getting there...my friends and even husband treat me the same way. And how can you be so sick when you look so good? They do not have a clue. It took me a long time to just accept the fact that I have this disease, now I'm trying to deal with coping with it.
I come to this site ALL of the time to get advice and inspiration from some really wonderful people who have been where I am now. Hopefully one day I can do the same for others. It's amazing how much support you get from perfect strangers when you get none from your friends and family. Go figure. I'm in the same boat as you, so let's both hang in there, and we'll get through it.
The wall was built, but each brick took time. Feel better, Jill
Posts: 203 | From Jacksonville, FLorida | Registered: Oct 2005
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quote:One of my worse symptoms of my neuro-lyme was stammering, stuttering, mixing my words etc. Especially because I deal with the public every day and got so frustrated with my ability to speak. (Short term mrmory also tanked....
I can talk normal, but still have numbness in face. Very depressed, weepy, and fatigue is back. Just came down with bronchitis, a sinus infection, and yesterday a urinary tract infection.
The getting worse before you get better is a common theme here, Luke. Almost our anthem!
Speaking of short term memory...Mo just burned the supper again....
posted
Biaxin is really strong...I called my lld crying after a few days on it cause I was so sick...neuro stuff, pain, unable to talk right or type right, hard to read or watch tv even ...he told me that unless I was throwing up, it was indeed a herx and could last for weeks and to hang in there...it does pass (and it did).
Best to you, we know it's not in your head here
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