posted
I am trying to hang in there right now. Having a hell of a time swallowing on the left side for some reason feels like i am numb there and that my muscles are very tight. my muscles are stiffening up in my left arm, back, and hand (sucks cause i am a lefty). Still loosing muscle tone in my neck and shoulder and my tongue has spurts of weakness and cramping, seems to be happening more and more.
I guess i am loosing faith that i am gonna be healed from this. My so called LLMD (turns out to be a duck) turns out he was a pediatrition who took Lyme patients on the side. he said because i did not react to abx in the 3 weeks he had me on them he said he is not convinced its Lyme. I was on Biaxin 1000 Mg for 1 week and ceftin 1500 Mg for about 20 days.
I am scared right now thinking these ALS symptoms i am having are not going to be addressed in time. I do have an appointment with THE Dr. H on April 20th. I hope to get some help then, he is my only hope right now. I have twitching in new areas like my neck now, especially on the left side.
Anyway my neuro claims not ALS saw me 2 weeks ago saw nothing to be worried about yet he said. I wonder if they wait until you are not doing so well until they even hint to that. I wanna fight Lyme but I have not been given the tools yet.
Sorry so long just having a hard time now, tough to be strong when you are getting worse. My family and friends are getting sick of hearing that i am sick, they wanna hear the happy cheerful person i used to be 3 1/2 months ago. If I could be that person again i would at any cost.
I am only 31, sucks to be me right now.
Posts: 167 | From Los Angeles | Registered: Jan 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I am sorry you are going through so much.
I am also sorry you ended up with a duck.... I have had my fair share of them myself.
You said "he said because i did not react to abx in the 3 weeks he had me on them he said he is not convinced its Lyme."
That is b.s. cuz it took me 7 weeks before I had any results when I was first put on rocephin.
I know when you are getting worse it seems hopeless but trust me its not.
I am alot better than I was a year ago. I have had lyme (and constant symptoms)for 18.5 yrs.
I am getting back to being me. Little by little day by day.
I know at 31 a life time of illness is a terrible burdensome thought. (Although I think this is true at any age)
I am 29 and there were periods where I wondered if I was ever going to be able to see the light at the end of the tunnel.
Trust me its there even when you can't see it.
So hang in there. there is hope. hopefully your new dr. will be able to give you the treatment you need.
posted
Hang in there! I am so sorry that you are feeling so low. It is hard to not know what is going on.
You will feel like you are in good hands with Dr. H. I had been round and round with so many specialists and gotten my hopes up so many times that finally someone would tell me what was going on and would be able to help me. I can't tell you how many times I left another Dr's office and cried on my way how from the let down.
It was so different with Dr. H. He really listens, he spends a great deal of time really taking a thorough history. He is unlike any Dr that I have seen. I really felt like I was/am in good hands with him.
It is a mixed bag to finally know what it is. Relief to know what it is so you can start fighting it but it isn't an easy battle.
Your on your way, getting a good LLMD is the first step. If it is Lyme (and co-infections), he will be able to tell you and help you.
Hang tight!
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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posted
i just started flagyl today and will be going on iv if it doesn"t help. Today my eyes hurt. I have numbness side of face, upper arms legs, feel weak and spacey. I have hope, I got through this before and will again.Thats what is so great about this forum we understand each other. My friends can't understand why 4 mths later I am not better.
Posts: 41 | From new york | Registered: Mar 2006
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posted
I'm so sorry you're in such a state. You will one day be happy and upbeat....I promise! Take good care of yourself, eat healthy, and do everything you can to help your body.
I hope you will feel MUCH better once you see Dr H. It should be a good experience!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hey Luke,
Hang in there. Im 30 and i know it sux to be sick, i would give anything in the world to be able to go out to dinner and eat normal food...enjoy a baseball game etc. But, we both were inflicted with this dreaded disease.
I know it is tough and i hope this throat thing goes away for you. Ive posted to you before , i had something very similar...probably the scariest parts of this disease for me. I too thought i had ALS.
I'm betting you have some coinfections adding to the mix.
Hey but atleast you found out now that the first guy was a DUCK!!!
I didnt herx on flagyl many here herx off of a low dose, so i wouldnt go by that as a diagnostic tool.
Try to hang in there,
i found eating luke warm food helped with the numb feeling in my throat. It made it easier for me to eat.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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bettyg
Unregistered
posted
Luke, sorry to read you are having such a rough time of it.
You mentioned family/friends, please read & print off THE FORGOTTEN BY Paula Langhoff, I think was her last name. I forget so fast.
Nan reposted it DOUBLE-spaced. Had that to those giving you a hard time. Best wishes; it will get better, BUT WHEN? Yes, I do know.
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not better.
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