posted
I have it horribly. You would think I would slow down eating. But I dont.
I notice it alot with pills too. My surgeon told me that when I get the Lyme under control this symptom will ease.
Posts: 347 | From WV | Registered: Jan 2007
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posted
I also have this problem. Especially with my pills. Try turning your head to the right or left when you swallow your meds or food even. It has helped me. My family thinks i'm nuts though. Oh well, you do whatever works, right?
Posts: 111 | From northeast Iowa | Registered: Oct 2006
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posted
I also have the chocking feeling, wonder if it's neralogical?
Posts: 55 | From S.E. Wisconsin | Registered: May 2007
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tailz
Unregistered
posted
I know at my worst I would eat say peas, and maybe an hour later cough - and a pea would come flying out of my mouth. I couldn't even feel it there. It was insane.
Now I seem to do okay except with peanut butter. I have to drink a lot of fluids to get that to go down, and sometimes I almost choke on the fluid, but I do think it is fairly common with Lyme - and most swallowing tests show nothing, although at one point I think I did show 'normal' hyperkeratosis of the esophagus.
But I would describe it as if the signal from my brain to my throat muscles don't work very well. I would ditch your cell phone and cordless phone though if you have one. These are thought to be behind the Lyme surge - each generation of cell phone created a problem.
But I often have to throw my head back while I'm swallowing to get it past a certain point. I've done this as far back as I can remember. Never thought twice about it until now.
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I had this and it went away on Iv Rocephin. it was SUPER SCARY because I already had other ALS-y symptoms and this is a biggie. I don't mean to scare anyone but this can be a sign of bulbar onset with ALS so anyone with this needs to get it checked out asap by a neurologist/ MD!!!
LYME CAN affect these same muscles-
and my problems went away with Iv Rocephin but only in the 7th month- I had one horrible week and a half where I could not get ANY food down except ice cream or soup and only then by tilting my head and NOT swallowing at all- but be aware that this is an ALS crossover symptom!!! If you have this it is a reason in my book to pursue more aggressive treatment!!! It sure was for me- scary as heck!!! Best wishes, Sarah
Ask The Doctor Dear Dr. Belsh: Because my only problem is with my speech and swallowing, I was told that I have ``progressive bulbar palsy''. Subsequently, I was told that I have ALS. Which do I have? Is the prognosis any worse for the bulbar palsy type? Dr. Belsh answers:
Patients with ALS generally present with symptoms referable either to the limb or bulbar muscles. Bulbar complaints will consist of speech difficulty, swallowing difficulty, or a combination of both. Muscles of the throat, tongue, jaw, and face are known as bulbar because the area of the brain that controls these muscles - the lower brainstem - was once known as the bulb. Motor neuron cells in the bulb, just like motor neuron cells in the spinal cord, degenerate and die in ALS, resulting in weakness and wasting of the bulbar muscles. About 25% of ALS patients begin their disease with so-called ``bulbar onset''. In classical ALS, typically, 75 - 85% of patients eventually will develop bulbar symptoms and signs.
When a patient presents with bulbar symptoms only, this is often called progressive bulbar palsy (PBP), a condition originally described by the renown French neurologist, G. Duchenne in 1860. Whether it is classified as a separate entity or as a ``subtype'' of ALS, most clinicians agree that pure PBP, with absolutely no clinical or EMG evidence of abnormalities in the arms or legs, is extremely rare. In other words, most patients who begin with purely bulbar difficulties will eventually develop the more widespread symptoms and signs of typical ALS.
Because patients with bulbar-onset ALS have difficulty swallowing and may choke or aspirate frequently, (with resultant pneumonia) it has been found generally that these patients carry a poorer prognosis than those with more classical ALS. However, much longer courses of bulbar-onset ALS have been reported. In my experience, I have seen many patients with bulbar onset who can manage their disease quite well and do not develop any sign of limb weakness for at least 2-5 years.
As always, an accurate diagnosis of ALS, PBP, and any other neuromuscular disease should be made as early as possible by a physician with experience in these diseases. Only with a correct diagnosis can a plan for appropriate management be outlined.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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bettyg
Unregistered
posted
sarah, thanks for the explanation of busbar, etc! never heard of this before & ALS connection.
i too have had this over years & tested galore; it's gotten much better but not over it yet. i just have to take a FEW pills at a time until i'm done w/them all.
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tailz
Unregistered
posted
I have a friend I pulled off the ALS forum (before they kicked me off). She has this bulbar symptom, too. Are you saying you all got better with antibiotics and time? How bad were your bulbar type symptoms? Which abx combos seemed to work on them best?
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
As a Speech Pathologist, I have worked for years with patients with swallowing problems.
I too at times have difficulties with swallowing.
I use some techniques that I have used with my patients to help me out.
When I get a pill or some small piece of food stuck in my throat I take some water,
Tuck my chin down to my chest and then swallow it.
If you have some weakness on one side (can usually tell by sticking tongue out-
it will deviate to side of weakness) then turn your head to the weaker side
Prior to swallowing. You can do a chin tuck along with a head turn also.
Follow each bite down with a small sip of water (liquids).
Make sure you are chewing food well. (I sometimes don't)
If you know a particular food is causing problems, then avoid it.
Believe it or not, liquids are usually the toughest to swallow.
Good news is I haven't aspirated yet (food or liquid below the vocal cords into the lungs),
Have a healthy response (coughing/choking)
And this symptom comes and goes for me.
I am ready for it to just go.
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
probably a neuralgia of the vagus nerve. this nerve innervates the esophagus to contract and to push food down to the stomach.
with a weak vagus nerve response the food will get stuck in the esophagus.
i just had a endoscope to check the problem. no cancer, please check for cancer every body. continued irritation can cause cancer. this is the worst cancer you can get. my dad died of it at 66. struggles for a year and a half. metatsises very quickly and usually have 6 months to live.
must get a endoscope when you get a colonoscopy they will do them together while asleep.
my results we will know tommorow.
docdave Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Hey Stymie you are BINGO for me!!! I have a vagus nerve problem separate from this that started with Lyme- I pass out when I get blood drawn which is a vagus nerve impairment as well!
YES- bulbar issues happen with ALS and with Lyme- but re hope for your friend- bulbar people do worse with Lyme tx than Limb Onset- those are the 2 types of ALS-
Limb Onset- where they feel limb impairment weakening first
or BULBAR onset
when it is swallowing issues
BOTH can be caused by Lyme & TBDs as well.
my swallowing issues got all better with Iv Rocephin and it had gotten really bad. I could not eat w.o choking. It sucked!!!!
I also had progressive weakening leading on the left side.
So that was scary because I had ALS symptoms also Parkie symptoms and basically, I am a neuro Lyme MUTT!
Thank god for Iv Rocephin. It saved my life.
but not until month 7 and that was after a year of orals.
But I am normal now as long as I stay on maintenance abx!!! Last month I did not even get my left knee 1-3 minutes of premenstrual pain which has been my only symptom left for last 6+ years-
So yay*)!
Bulbar stuff is scary.
The weirdest throat issue I got was this little dry clicking sound my throat began to make. Like a machine malfunctioning-
I hope your results are good ones, Dave. Truly, Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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tailz
Unregistered
posted
I'm not sure which of her symptoms started first - I will have to check with her.
One thing I've noticed over the years is that my epiglottis (isn't that the little thing that hangs down the back of your throat?) points to the left. I read this is due to systemic infection, showed docs this, but nobody said anything about it.
I have also noticed I have petechiae all over that area in my throat. It looks like this:
Not quite this severe, but my epiglottis has pointed left for as long as my symptoms have been debilitating.
I think the first part of my swallowing muscles are most affected - if I get the food past those muscles, I'm usually okay. But there have been times I hit it wrong, and then I panic.
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Instead of doing a esophogram, have the doctor order a Modified Barium Swallow Study.
This way they can see all four stages of swallowing.
Oral prep - preparing food by chewing, forming a bolus (little ball)
Oral phase- ability of tongue to move the food from anterior (front)
to posterior of mouth and trigger swallow response.
Pharyngeal phase - Making sure there is no food stuck in the sinus' (in the throat), vocal cords close, epiglottis lifts, etc.
Esophogeal phase - where food gets propelled down into the stomach. Usually not seen well on MBSS.
BTW, it has been my experience that if the uvula (that thing that hangs down in the back of your throat)
is deviating to one side or the other, that is a sign of muscular weakness on that side.
Could be nerve related, inervation, atrophy, etc.
Try turning your head to the direction your uvula hangs when swallowing.....
Let me know if this works.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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tailz
Unregistered
posted
I knew my uvula pointing to the left meant something. I never thought of trying to swallow in one direction though - with my head tilted.
Usually I'm already choking and am running for something to wash it down. I'll have to pay attention next time.
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Yes, I have this problem. I use to have it very bad before being diagnosed with LD. My LLMD put me on Nexium/Biaxin/Amoxi,because he believed I had H.pylori and it really helped.
I do still get it once in awhile, but nearly as bad as I use to. It was very scary. Even now I will swallow pills with something "slippery" milk, heavy juices like Odwala superfood, or a smoothie.
I learned before this on my that warm water somehow helped with swallow pills, I take them one at a time.
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Yes, I have this problem. I use to have it very bad before being diagnosed with LD. My LLMD put me on Nexium/Biaxin/Amoxi,because he believed I had H.pylori and it really helped.
I do still get it once in awhile, but not nearly as bad as I use to. It was very scary. Even now I will swallow pills with something "slippery" milk, heavy juices like Odwala superfood, or a smoothie.
Sometimes warm water or tea somehow helped with swallowing pills & food.
Yes, I have had this problem. It doesn't happen much now, but it did before I was diagnosed. It was one of the first symptoms to go away once I started treatment.
hatpianka
Posts: 97 | From Clinton, CT | Registered: Jun 2007
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