posted
I have so much difficulty eating or taking the supplements I am supposed to. I get tremendous pain just under the left rib.
I feel nauseated (can't spell) even water makes it so much worse. Everything I consume seems to stay just below the ribs. Sometimes If I lay down and massage my abdomen I can get it moving but it totally wipes me out and makes me feel so toxic.
I have searched so many things, had colonoscopy and they had to stop at the very same place they then sent me for barium and they did not find anything wrong.
I just looked up some posts on twisted bowel and they have exactly the same symptoms.
Does anyone know anything about it or suggestions as to how I can find out. I could not find any tests for this kind of thing. It is very distresssing as I am unable to eat properly and more important I can't add any supplements or oral antibiotics as the pain becomes so unbearable.
This has been going on for over three years and I am on gabapentin which helps some with the pain but does not help with the digestion.
So far I have tried digestive aids, extra probiotics, peppermint tea, pepcide ac, pepto bismal and many other herbal remidies. Any other suggestions would be appreciated, at least I now know what is going on.
Thanks
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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maps.. Doesn't the gabapentin make things worse?? Sounds like a terrible problem to have. Your GI dr has no clue?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Google Bells Palsy Of the Gut. Also gastroparesis.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
I do not have a GI doctor in fact I as of last week I do not even have a GP.
This is such a disaster I am not sure what to do anymore.
I went to the clinic in Washington about six weeks ago and I guess with the travel all my symptoms were severe which of course is good but I had not eaten and so forgot about the stomach.
But they confirmed that my right eyelid was drooping and luckily when I layed down my hearbeat was racing and skipping (no one here has ever heard it or tested for what happens when I lie down.
They confirmed that the fork lightning pains I had were seizure activity hence the gabapentin and lamictal.
They sent me home with perscriptions for the above and vitamen b shots, klonopin and requisition for a cardiac evaluation, sleep study, chest ct with contrast and 44 blood tests.
My chronic fatigue doctor has been amazing and ran some of the blood tests but pointed out some were for bleeding disorders which she has never done in 40 years and did not want to do, some of the other tests were done by another doctor but I still don't think all tests were done. All of this has been very stressful.
On top of this they gave me a list of supplements, I started the gabapentin and lamictal slowly as instructed and when I reached the maximum the ice cold pain that I get in the left side was so much better. Then I added the supplements and everything went really badly, disorentation, no idea what day or time it was and I was literally bouncing of the walls and such severe abdominal pain I could hardly breath and then waking every three hours even when I took immovain.
I had to stop everything even the gabapentin after a couple of days the flank pain was so bad I started back on it then after a week I added back the supplement one at a time leaving three days or so in between I almost got there but was seriously ill again, I did count up how many pills I had to take each day including sleep meds and probiotics and it was 57 I don't know if this is something other people could tolerate.
Stopped again and waited a week and right now all I am taking is a multi vitamen and c and I am in trouble, the digestive stuff is much worse and I can't think, talk or even do the basic tasks plus my id doctor here wants me on daily iv although he has cut the dose in half he did at one time suggest getting a endoscopy.
He did say that he had never heard of lyme causing digestive issues and that is why I thought going to Washington would put me on a better path to recovery but I have ended up so much worse.
The bells palsy was to complicated to understand righ now but gastroparesis symptoms seem to fit indluding although I don't know about low blood suger. I have this every day all day, I am so afraid to eat or take any pill as they seem to be the worse as they just sit there.
Chronic nausea Vomiting (especially of undigested food) Early satiety Heartburn Weight loss Weight gain (often attributed to the 'starvation mode' effect) Abdominal pain Abdominal bloating Erratic blood glucose levels Lack of appetite Gastroesophageal reflux Spasms of the stomach wall
The rare times this stops I feel so peacful all the other time my body feels so stressed.
The neurological damage is getting worse and yet I can't get in to the real treatment, a lot of the supplements I am supposed to be on are for nerve stabilization and inflammation.
I appreciate your links but not quite sure where to go from here, the person that is will ing to do the most tests is my id doctor but he is so busy as he is the only doctor willing to treat lyme in Canada but maybe I will call tommorow and see what they say.
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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