posted
So my symptoms are getting worse: really bad swallowing problem (hyoid bone is popping on my left side), my pinky finger on my right hand is numb or feels numb along with the very tip of my ring finger, my left upper tricep feels weak but my left shoulder is even weaker, just feels like its hanging off unless i take a muscle relaxer then its good for a while.
My left hand does not feel very weak, my left leg feels weak, I keep getting sleep disturbances, waking in the middle of the night. The only way i can get to sleep is by druging myself and the only way i get through work is by druging myself. My left side of my soft palete is drooping, the right side of my jaw cracks very loudly when i wake up in the morning.
My hands get tired after typing for a little while, i need to rest them more then usual.
I am 30 years old and was completely healthy about 2 1/2 months ago and now all this is going on. Sometimes i think i have ALS (tough no to) but about 1 month ago i had an EMG and NCV tests done and they were completely normal.
My swallowing muscles feel weaker and less firm on my left side, is Lyme know to cause atrophy or wasting of muscles?
I am seeing Dr. H in Malibu, CA (the son of the guy who started Igenex. I called him today and told him of my new popping hyoid bone and he said its nothing to be worried about right now, lets wait for the results to come back from igenex.
He clinically diagnoised me with Lyme, Put me on Biaxin, I have been on it for 7 days now. Before that i was on Doxy (400 Mg) which seemed to cure some issues (stiff neck, arm burning feeling)but these new ones popped up shortly after. Is there any end in sight for me, does it ever get better? Does anyone have any suggestions for me for what i can do to improve my swallowing? Why do my muscles in my shoulder feel like jello?
Posts: 167 | From Los Angeles | Registered: Jan 2006
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posted
Hang on, it is a rough ride. If this was a recent infection, then you have good chances of beating it. And if it wasn't recent, then you still have a treatable disease. And an excellent doctor.
So, you need to mentally prepare yourself for the fight. What happens day to day can be frightening but it is the trend that counts, and that can take a while to see clearly.
Posts: 8430 | From Not available | Registered: Oct 2000
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I sympathize with your impatience and fear with these baffling symptoms. When we are first hit with these neurological symptoms they are really frightening! Be prepared. There may be more to come, varying from day to day and even hour to hour.
I remember well how distraught I was when I had such trouble swallowing. I knew I must have cancer!
The numbness, the twitching, the tingling, the weakness are all part of this weird disease. And those of us who have had it for quite a while can assure you that we know exactly how you feel.
When antibiotics are started, many of these symptoms may seem worse...all a good sign that the meds are killing their target.
It is twice as hard when you have always been healthy to accept that you now have limitations. Tough to try and hang in at work, too.
It does get better....to answer your question. But be prepared for it to take some time before you begin to feel like your old self. That varies from person to person, depending on how long you've been sick and undiagnosed or untreated.
Hang in there...come here to vent and ask questions as often as you want...the support here goes a long way toward helping you get better. And you will get better....in time.
All the best,
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey luke339 Hang in there ,it does get better. It may get worse durning treatment. Symtpoms new or old will come and go.
But it sounds like you caught it early and you are in good hands. You have an excellent chance at being back to normal.
Up the road you may want to ask your Doc about co-infections.
Keep reading and use the search button or post if you have any questions.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hey Luke,
Im also 30 years old and was healthy to before May 13th 2005. I was diagnosed in Nov 05.
The numbness is very scary. Trouble swallowing was one of my first symptoms. Try going to lunch with a coworker and hiding that one. I did it!! i was so scared. I kept saying this is just like the time in 2000 ...i was bit in 2000, actually pulled the tick off of me. but it didnt click with me that it was tick induced.
My tongue felt swollen too....very scary.
Ive woke up with right side numbness....that lasted a few days.
Some of my worst days was when i was taking doxy....dragging myself to work...it was horrible.
Today it has affected my bladder and is terribly painful.
for me the trouble swallowing went away after a very brief dose of zmax (prescribed for what the duck thought was inner ear)....
i reacted terribly to that....throat felt like it was closing, swallowing problems got worse. Then after the abx ran its course i was better...but of corse had other symptoms.
Keep close to the board......it helped me thru many very scary moments.
Often you wont know what your body is doing. Just remember it will pass. Cause it always does.
-------------------- "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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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Luke,
I'm 31. I know how hard it can be to go from feeling healthy to suddenly losing control of your body.
First, be happy about your EMG results.
You mentioned a muscle relaxer helps. Some muscle relaxers can be taken every day. I take Flexeril every night. For me, it addresses muscle tightness which is different. It causes some fatigue, but you get used to it if you start at a low dose and ramp up slowly. Of course, that means it takes time to get to a dose that helps.
Baclofen is also taken by some people daily.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Echo.
Hang in, you are almost certainly herxing. I was practically bedridden during the first month of treatment. You can trust your doctor.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
Trust your doctor. He is very good. This is an awful disease and you will feel horrible for awhile, it means the medicine is working.
You will get better, just try to take it slow. Pm someone if you need to talk, there are tons of supportive people here.
Its a long hard road but you are on the right road to recovery!! I hope you feel better soon!
Take care,
-------------------- Dani Posts: 102 | From Where there is no lyme | Registered: Jan 2006
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bettyg
Unregistered
posted
Hi Luke, Glad you came online to share your symptoms and misery with those who are walking in your shoes. One size does not fit all.
go to TREEPATROL'S NEWBIE LINKS found at the top of medical, page 1.
I'm going to copy/paste some websites here in case I missed seeing your 1st or 2nd post.
Please look at ALL the signs of lyme and a separate one on co-infections.
Read/print Dr. B's 05 treatment guidelines.
Have you done a sleep apnea study? You may find you have too as well as restless leg syndrome. I can't wear the mask since it's so uncomfortable but most importantly; both nostrels plug up nightly and I can't breath.
I've had the swallowing problem too & did extensive testing; it's a "motility" problem. What the heck is that? "It takes awhile for you to relax enough to swallow especially pills!" This has passed.
I had TMJ when this was happening, so it's related. Dry mouth drives me up a wall!
If you are ever thinking of quitting work due to the severity of your health, and NOT being able to do: walking, standing, typing..working with fingers, sitting, bending, crawling, climbing, etc.; please let me know and I'll give you the DISINISSUES, disability insurance issues, web site.
It's posted also on Treepatrol's newbie links under MINOUCAT'S DISABILITY INSURANCE info.
Best wishes, and you really are herxing. Hopefully, you are an early-bird, and you WILL be cured vs. what the rest of us are going thru. I envy that part; I really do. But keep on the lookout so it doesn't go further like us.
I'll have to come back tomorrow; I can't get into my wordprocessing; it's on strike!
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posted
Hi Luke I also have major swallowing problems... Right now Im not currently seeing an LLMD where i live there arent any but am hoping to be moving back north sometime this year so I can find a new one.. As for the swallowing, Have you tried taking a valium or ativan, xanax type pill about an hour before you're set to eat something? I ask because, it seems the muscles in my throat that are responsible for swallowing also dont work well at all...The ONLY way I can eat anything substantial is if I sleep before I eat. And even then my food has to be mushed up. Its almost as if when I sleep the muscles in my throat relax and Im better able to swallow for a bit after I wake up.. Then the other day I couldn't nap in the afternoon. When I dont nap in the afternoon that means no dinner so I took a half of an ativan and slept for 2 hours. WHen I woke I was still looped out (sensative to meds) and I was able to swallow MUCH better than usual... I dont know if you have this swallowing issue in the same way I do but I just thought I'd share what i've found incase it would help you..
Wow...you sound a lot like me. Not exactly all the same symptoms, but emotionally. I am 31 and was just diagnosed last month. I am about to start treatment.
But unlike you I have been ill for 10 years, bounced from dr. to dr. with no answers.
The scariest symptoms for me have been the numbness (entire left side of body for weeks at a time, comes and goes), the tongue numbness (hard to talk), the difficulty breathing (very scary).
I had an EMG and a NCV because I too was afraid of ALS, MS, and numerous different types of cancer. Was always told to see a psychiatrist and that I had Chronic Fatigue Syndrome.
Funny thing is I'm in nursing school now, about to graduate in May, and I have zero respect for the medical profession now. They almost had me thinking I was crazy! I never even knew about Lyme Dis. till about 6 mths ago.
Thank God for this board.
Cutie
-------------------- Cutie Posts: 125 | From Atlanta | Registered: Dec 2005
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