posted
I have gastroperisis....on iv nutrition. Started eating a little bit, but I can't swallow. I, freaking out that I'm never going to be able to eat and will have to rely on tube feedings. I have Bart, baba, Lyme, and crohns.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
Hi gatorade girl. I am sorry that you are having this problem to add to your list. I am not a Dr. but do have gastroperisis as well as a swallowing disorder...among other things. What happens when you swallow? Can you put it into words, including the type of food or drink?
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Member red (Member # 1886) Registered: 26 November, 2001 70 posts Posts: 164 | From NJ | Registered: Jan 2009
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posted
It feels like my pills are getting stuck in my throat. I also have trouble with chicken broth. It felt like it would not go down and it just sits there. It makes me feel like I'm going to throw up. I'm terrible nauseous. The only thing that is keeping me going is tpn ( the iv nutrition).
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I've been having problems swallowing and I mentioned it to my Lyme doc at the urging of other members here. Otherwise I would have never mentioned it. I was choking on things, mainly water, like it was "going down the wrong pipe." He immediately tested me for myasthenia gravis and I tested positive. I had a swallowing study today and I am very weak in all of my swallowing "parts", jaw, tongue, everything, she pointed to the xray and just outlined the whole area and said I am a very weak chewer, and explained how when I choke I am actually aspirating the food or water.
I left with a whole list of instructions on how I have to eat. I can NEVER eat when I am tired or I could choke to death. But this is all part of Myasthenia Gravis. You really need to see someone about this. Generally a barium swallowing study is ordered by a speech pathologist. Ask either your Lyme doc or PCP to order this. If you are on TPN I can't imagine why they haven't already thoroughly checked this out!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
May I suggest?
A neuro-chiropractor may be able to help. They can determine if your tongue is not functioning properly and adjust areas to correct it. Some people have a partially paralyzed tongue, causing the swallowing difficulties.
The problem can stem from the bundles of nerves (infection may cause this) near the base of the head/upper part of the neck. If the nerves are pinched in any fashion, even slightly by swelling, muscle pressure, etc, problems can arise... such as the more visible Bell's Palsy, ear/hearing problems, eye problems, sinus problems, etc.
I suggest this method because I have seen it work and no drugs are used in getting relief.
posted
Could u please explain my. Gravis? I was in the hospital a couple of months ago and they did check it out. I was not having problems with my esophagus . It has worsened since then. They. Did tell me I had gastropersis from the testing and inflammation and erosions in my stomach. I just talked to my dr and they said I can't drink enough for any swallow study. I'm back on domperidone. Thank u for the info!!!! I appreciate the support.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
I had a terrible time swallowing for years. Since I have gotten much better so has the swallowing problem. For me it was a Lyme thing. As I looked at it the Lyme was reacting in my brain to cause a problem with my swallowing mechanism. When the Lyme clears up and that part of my brain is healing, my problems get better.
Posts: 303 | From green bay, wi | Registered: Mar 2009
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posted
Whenever I get swallowing difficulty, it's related to my cervical neck vertebrae being out of alignment.
Usually C2, and I'm also usually nauseated when it happens - I notice you said you were nauseated.
A good chiropractic can adjust your neck and relieve pressure on the nerves going anywhere in your neck area.
Posts: 13116 | From San Francisco | Registered: May 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I never had to take more than two sips at a time for the swallowing study. I had to swallow a few bites of food, too, it wasn't much.
I can give you a bunch of links on MG from my research. Let me go copy and paste them.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
This may not be your issue at all, but is it one of the key symptoms in MG and one of the first red flags. If they brought it up, did they do the antibody test? It must be done by a specialty labs, Athena labs. Don't let them do it anywhere else!
I can list several resources here for you to check out:
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Thank you for your support and the wealth of good information. I appreciate all of your input.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
i have a swallowing problem related to the lyme!!! It greatly improved on flagyl l zithromax and bicillin. it got better with 1gram of rocephin and has flared on 2grams of rocephin with 500mg zithromax ughhh @mommy of three what meds improved your swallowing from lyme?
Posts: 50 | From nyc | Registered: Aug 2009
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posted
It could also be a thyroid issue, hypo with goiter more likely, but can occur in absence of goiter.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I have hypothyroidism too, which can be a cause of so many other diseases I had no idea. I guess it can be a factor / cause of MG / autoimmune disesases. So can any bacterial infection in autoimmune diseases, so that's where I think the Lyme plays in. The difference for me is my swallowing / aspirating issues developed after a couple years of Lyme treatment, and just got worse and worse. I also then developed all the other symptoms of MG EXCEPT the droopy eyelids, that is the only symptom I don't have. It really sucks. I feel like I fast forwarded from 49 to 89 only now I know for sure no amount of antibiotics are going to fix it! Hopefully with the MG treatment (I haven't started it yet) I will get better. In fact if I'm lucky, I might get dramatically better and be grateful they found this, because I never would have gotten any better otherwise.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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I am sorry that you are having this problem to add to your list. I am not a Dr. but do have gastroperisis as well as a swallowing disorder...among other things. What happens when you swallow? Can you put it into words, including the type of food or drink?
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