posted
I am having swallowing problems again. It feels like beginning paralysis or numbness. Everthing is very delayed.
I know that this can be caused by lyme problems with cranial nerves and brainstem involvemetn. I do have hyperintensity that showed up on MRI on my brainstem among other areas.
I am curious those of us that have swallowing problems and brainstem involvement from Lyme go on to die from ALS. Isn't difficulty swallowing and muscle weakness signs of beginning ALS? I know that ALS people have these same symptoms with upper motor neuron problems (bulbar presentation).
So what if I am just prolonging the inevitable. I feel a need to finish projects and do the things on my list of "before I die." If it weren't for my kids I'd be long gone. But more days lately......
posted
If you have lyme and an LLMD it is time to tell him about your problem and he may change your medication. My wife had the same problem and the doc changed the antibotic and the problem went away quickly.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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posted
Do you have thyroid issues? They can also cause difficulty swallowing.
Sadie
Posts: 115 | From new york | Registered: May 2006
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Sue vG
Frequent Contributor (1K+ posts)
Member # 3143
posted
During the first 6 months of my illness, which went undiagnosed for 15 months, swallowing issues were among my most frightening symptoms.
The fear was not helped by all the published information on bulbar ALS, which came to the top of google searches for swallowing problems.
I choked constantly on drinks and on my own saliva, and flat things like lettuce would stick in my throat. I would be ready to swallow a mouthful of food and sometimes, somehow, it wouldn't happen and (sorry to be gross) I'd have to sort of cough it up and try swallowing again.
I had two 10-day courses of doxy for something else during that time and slowly, many symptoms improved.
The swallowing problems were pretty much gone after 6 months. The only time in 5 years they've returned was during a 4-month break in medication imposed by my former doc.
I do and did have thyroid problems but the swallowing problem resolved before that was diagnosed.
Good luck and don't panic!
Posts: 1307 | From TX | Registered: Sep 2002
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posted
No, you don't understand. This is not functional it is neurological. I do not have an enlarged thyroid.
I have chronic neurolyme with ALS symptoms. I have lesions on my brain and brinstem and I think I am now getting motor nerve involvemnt.
A new muscle twithces, numbness and vibration in spine down through legs, face is tingliny, tongue going numb. Legs weak. Muscle wasting in arms and palms of hands.
I have been on antibotics a long time now and improved for first 6 months only, now i am not getting better and it is progressing. We have tried differnet antibiotics.
Read a study that said that not all people with Lyme induced ALS get better. Some go down hill rapidly on IV rocephin. Remember ALSLyme from here? He died on IV rocephin and it wasn't a herx.
I will not let my family watch me through months of endless suffering.
-------------------- Some day, this mamma's gonna dance! Posts: 199 | From here | Registered: Apr 2005
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posted
Since the antibiotics do not seem to be working would you consider alternative tx? I think salt/c rocks. YOu could check it out at the lymestrategies site if interested.
All the best. I know it must be scary to have difficulty swallowing.
Sadie
Posts: 115 | From new york | Registered: May 2006
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bg2711
Frequent Contributor (1K+ posts)
Member # 1865
posted
HI,
I know these symptoms are so scarey! I had them myself for quite a while after my Lyme came back with a vengence. I was very worried about ALS too.
I finally found that Zithromax, Acyclovire and Placquenl helped me with these symptoms.
I had trouble eating, swallowing, my arms and legs would stop working and wouldn't move and I looked like I had wasting disease, my muscles had atrophied and I had lost 15 lbs and was looking like death, My tongue was also numb and wouldn't move right, had burning in my mouth too.
I would also stop breathing at night and during the day, it wasn't automatic anymore, I would have to concentrate to breath, it was as though my diaphram was paralysed at times. So, believe me I know fear.......... YOU HAVE TO KEEP FIGHTING THIS< whatever it is......
I tried to eat the best I could, stopped sugar and foods with chemicals and preservatives,drank water constantly to flush out toxins. I did notice improvement from all these things combined. I forced myself to exercise and get my muscle tone back, and took the above mentioned meds. I prayed alot for strength. I too felt as though I was going to dye.
I survived that horrible nightmare, it did last quite a while. I am now working full time and am doing pretty well. If the swallowing problems come back again, I will not hesitate to start antibiotics and my regimen immediately as I do believe personally that Lyme can turn into ALS.
Hang in there, keep fighting!
Good luck, if you want to talk, feel free to e-mail me. My3angels2711 @aol.com
Posts: 1131 | From Ohio | Registered: Nov 2001
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posted
Swallowing was a big and scary symptom for me for 3 years. It has now completely resolved, thank goodness, with ongoing abx tx- many different combos over the last 3.5 years.
I know its hard, but keep trying to find the right treatment for you because there is hope.
I hope you find relief very very soon.
Posts: 925 | From California | Registered: Sep 2004
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posted
woke up today with paralysis. could not move my arms or legs, breathing was funny. i layed there until my husband came home. drooled all over the pillow and wet the bed. back still bery numb tonight and i am afraid to lie down to bed. can feel legs going numb when i go down. claw hand. tight sensation around chest like squeezing belt. llmd thinks herx. i think wrong.
-------------------- Some day, this mamma's gonna dance! Posts: 199 | From here | Registered: Apr 2005
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What you are describing is very similar to the symptoms hubby had for over a year. Once or twice a day he would have episodes of temporary paralysis with the claw hand. He usually had transient Bell's Palsy during these episodes as well. Sometimes he couldn't talk or could only babble nonsense.
IV Ativan and me working his muscles for 15 minutes or so would resolve these episodes. Anywhere from 1/2 mg to 2 mg of IV Ativan within a period of 30 minutes.
For hubby these episodes would start with coughing and diaphragm spasms and then tremors/myoclonus. He would shake so hard he would stiffen up and be frozen in weird positions -- I have lots of pictures I showed his LLMD because most of his episodes happened during the night when he would wake up to go to the bathroom.
IV Primaxin resolved these episodes. Hubby was only able to take 500mg daily most days -- not the 500mg 3 times a day that the LLMD suggested. It took 3 months to get thru a normal one month supply, but by then hubby's had stopped having the paralysis episodes. He did do 2 doses on some days as we usually only did 4 or 5 days in a row and skipped a couple of days each week.
You may have had a seizure which can cause loss of bladder control. That has happened to hubby several times.
Please hang in there. Things can get better!!! You may need to slow down whatever antibiotics you are on to detox or you may need to switch to a different antibiotic.
If you are not taking them the two supplements I would suggest to help with brain inflammation would be CoQ10 (400mg minimum) and Resveratrol (Japanese knotweed source is best).
Keep us updated.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
quoting Big Momma,
"Remember ALSLyme from here? He died on IV rocephin and it wasn't a herx".
Yes, I do remember als lyme; what was his given name and do we have his obituary online with all the others?
I wandered why we hadn't heard from him lately; unfortunately, now I know! His last posts were so desparate. Thanks for posting an update on ALS LYME; rest in peace now! It was nice knowing you and you contributed to the lyme/ALS conversations your experiences in going thru them all!
I was in disbelief, and forgot to tell you my experiences:
Have had this for 12-15 years. Given contrast to swallow as they took x-rays galore. It's a MOTILITY problem, didn't tell me I just have a hard time getting PILLS down that take several minutes back then. Now it can be up to 5 min. before I get them down OR the 1st batch of them.
Another time had xrays for a possible swellen cheek area, they had me stand WRONG, and then informed me I had a partially-paralyzed TONGUE! Something else was wrong, but I can't remember as I type this.
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Just saw where you posted that you recently started Mepron for Babs. I am pretty sure that Babs is what was causing hubby's seizure like episodes for the last 3 years or so.
Like Ed, I wonder what kind of antibiotics you've been on. Perhaps you need a different combo.
I've had all the sx you describe: difficulty swallowing, numbness and paralysis, esp w/the left hand, but at times my entire body has been involved. At the worst point I woke up and was barely breathing and couldn't move a muscle. I was sure I'd be dead within weeks.
I've been on Bicillin LA injection since Oct. 2005. Along w/that I've had Ketek, Tindamax,, Levaquin, and now am on Bicillin LA, Tindamax, and Biaxin.
The majority of my sx have gone away, although I started herxing again more severely after Biaxin was added a month ago.
If you feel your abx therapy has been maximized, I would seek out alternative therapies, including Rife, herbs, and/or ozone therapy. Lots of people are improving doing only Rife. I plan to do that for maintenance when I'm ready to get off of abx.
Don't give up.
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Bigmamma,
I could definitely relate to what you wrote. About a month after I began taking abx, I was rushed to the ER with full=body paralysis. That episode lasted about 4 hours and was followed by a second one several weeks later.
I'd always had numbness in my foot, but I began experiencing facial numbness and a feeling of tight bands wrapped around my ankles after being in treatment for about 6 months.
All of this really was scary; I wasn't sure if I was ever going to see any relief. During that period of facial numbness, I didn't have the claw hand you described, but I did have mild seizures.
As Bea described, I'd take an increased amt of atavan (oral, not iv), and gradually, the symptoms would diminish.
The numbness and seizures began to dissipate when I started taking rifampin for Bartonella. I'm not sure if itw as just the cumulative antibiotics or that specific abx.
But I do know that my LLMD suggested at my last visit that I pulse the rifampin -- three weeks on and one off. When I started taking it again after that one-week hiatus, the numbness in my foot returned with a vengeance and I started experiencing a bit of facial numbness.
I haven't had the seizures or the paralysis in months now, thank God. I also haven't taken any atavan since last Dec.
I've been on an antibiotic regimen since June of 2005. I've improved so dramatically and have just started back to work. I began as a consultant, but just today, they asked me if I'd be willing to come on fulltime. Still no concrete offers, but it's all hopeful.
I also have to say it's worlds away from how things were this time last year. At that point, I felt like my health was just slipping away.
If you would like to send me a pm, mamma, please do. And take good care of yourself.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Have you been tested for co-infections? Mycoplasma? Have you been treated yet with floroquinlones?
I had mycoplasma in my CNS which presented as ALS. Antibiotics, mostly florquinlones and a year of physical therapy restored me to 95%.
I was told for almost 1 year that I only had lyme. The antibiotics stopped working after the first two months and I kept deterioriating. A 2nd opinion and a correct diagnosis saved my life.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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