I spent 3 days in the hospital for the intolerable stomach pain & burning. They did a CAT scan and scope but nothing was found. The internal med MD that saw me said Lyme really did not exist in TN, so I must be a really rare case. I wanted to tell him how IGNORANT he really is, but I somehow managed to bite my tongue.
The GI doc was very good though and knew more about lyme that the IM doc. I had a CAT scan and scope but nothing showed up. He said he suspected yeast but that was not the case. The GI doctor said it has to be lyme. He said he wished he could help me because he does know lyme definitely exists and can affect basically your whole body.
I asked my LLMD a couple of weeks ago if it could be bart but he said no. I plan on seeing another doc who tests for co-infections, but he is not a LLMD but has trained with one.
Thanks for all the help.
Posted by Lymetoo (Member # 743) on :
That's what I thought! You disappeared and we were worried about you. Figured you were in the hospital. Glad you went to get checked out.
Hooray for the GI doctor..!! The only one with a brain!!!
So no new meds or anything to help you?? Are you feeling better?
Posted by jennie46 (Member # 20953) on :
quote:Originally posted by Lymetoo: That's what I thought! You disappeared and we were worried about you. Figured you were in the hospital. Glad you went to get checked out.
Hooray for the GI doctor..!! The only one with a brain!!!
So no new meds or anything to help you?? Are you feeling better?
Meds prescribed are Prilosec, Lyrica, & Bentyl. Any thoughts on Lyrica? I am also having arm & leg burning. I don't want to cover up lyme symptoms with meds because then how will I know when lyme is in remission?
Posted by street129 (Member # 23472) on :
my leg burns me too, and my back and stomach........
Posted by Lymetoo (Member # 743) on :
Do a search here on Lyrica. Many have trouble taking it due to it making them feel so groggy and foggy. I hope it works for YOU!!
Prilosec should help... if you still have trouble after being on it for a month, ask your dr to consider Nexium. The prilo may work though and it's cheaper!!
Bentyl.. I've taken that before and it works well.. may cause constipation, so be ready for that one. I think it relaxes the intestines.
I think you'll know when you're in remission!!
So is the stomach better yet?
Posted by gwb (Member # 7273) on :
Here's some info on Lyrica on WebMd.com. Approximately 1700 users rated it three stars out of five.
quote:Originally posted by Lymetoo: Do a search here on Lyrica. Many have trouble taking it due to it making them feel so groggy and foggy. I hope it works for YOU!!
Prilosec should help... if you still have trouble after being on it for a month, ask your dr to consider Nexium. The prilo may work though and it's cheaper!!
Bentyl.. I've taken that before and it works well.. may cause constipation, so be ready for that one. I think it relaxes the intestines.
I think you'll know when you're in remission!!
So is the stomach better yet?
Crap! I just did a search on drugdigest.com and Prilosec interacts with my sertraline, which hospital knew I was taking. Can you believe how you have to recheck everything and can't trust anyone? Hospital gave me Nexium the entire stay and then doc prescribed Prilosec...go figure! I think I'll try Maalox and forget it.
Posted by lilacs48 (Member # 20025) on :
jennie46...I take Lyrica. The start up side effects were not too good for me but once I got past them it has helped. I'm only able to take it at night....makes me spacey during the day. I had to stay on a lower dose but my body hurt so bad over 2 years ago (before Lyme diag.)that it was a relief for me.
Posted by Pinelady (Member # 18524) on :
Whew. Good to hear. Better safe than sorry.
Posted by knshore (Member # 13451) on :
I LOVE lyrica!!!! I have major disc problems in my spine and lyrica has saved my butt (literally!)
It used to make me dizzy, so I worked up my dose which my LLMD and neurologist at the time suggested people should do anyway.
I am one of the biggest advocates for lyrica ever!!!
As for the stomach burning, I have an ulcer and gastritis. My GI Dr (who is lyme literate and wonderful) put me on Carafate to help soothe my stomach in addition to Zegerid which is a PPI.
My LLMD approved all his med choices.
Just be careful if you do get carafate, it has to be taken 2 hours away from all other meds.
Posted by Rumigirl (Member # 15091) on :
Intestinal problems can be a symptom of Bart----or Lyme. It sounds like you need a better LLMD when possible.
Posted by Rumigirl (Member # 15091) on :
Did they check you for C Difficile? Both A and B? Very important! They may only look for it when you have diarrhea, but that's not the only symptom. Make sure they test for it. And, of course, the tests can be wrong, if they are negative.
Posted by LymedOut (Member # 22351) on :
I had very bad burning in my stomach and around my rib area. I had a scope done and my GI doctor didn't see anything. It got do bad that I couldn't keep anything down anymore. My GI doctor had me switching medicine like crazy. Finally, another scope was done and a growth was found in my stomach. It was removed and I felt so much better after. It was sent off and was not cancerous.
Same thing happened to my grandma. She had a bleeding ulcer and her GI doctor did not see it until another scope was done. Sometimes, they just can't see what's going on at the moment. If it continues, I'd get another scope done.
I had a GI cocktail that worked wonders for me when nothing else helped. You may want to ask for that if it continues.
Feel better soon.
Posted by jennie46 (Member # 20953) on :
quote:Originally posted by LymedOut: I had very bad burning in my stomach and around my rib area. I had a scope done and my GI doctor didn't see anything. It got do bad that I couldn't keep anything down anymore. My GI doctor had me switching medicine like crazy. Finally, another scope was done and a growth was found in my stomach. It was removed and I felt so much better after. It was sent off and was not cancerous.
Same thing happened to my grandma. She had a bleeding ulcer and her GI doctor did not see it until another scope was done. Sometimes, they just can't see what's going on at the moment. If it continues, I'd get another scope done.
I had a GI cocktail that worked wonders for me when nothing else helped. You may want to ask for that if it continues.
Feel better soon.
That is exactly where mine is burning. It is also sore around the rib area. I have been in such agony, I thought for sure they would find something.
Posted by j_liz (Member # 20496) on :
I have UC and my gi dr. says it could be from Lyme, but there haven't been enough studies on it and what has been done has been on peds.
I hate the burning arms and legs (sometimes other areas of my body). They had finally let up that is until we spread my bicillin shots out to 3 wks.
My hubby noticed personality changes the 1st month I was on Lyrica, I didn't notice them. Each month the dose was increased, by the 3rd month I had serious suicidal ideations!
My niece does fine with it, although it hasn't helped her symptoms enough.
liz
PS I wanted to add that my gi dr. does send reports to my LLMD and he asked what her long term plan was for me.
[ 12-05-2009, 11:51 AM: Message edited by: j_liz ]
Posted by jennie46 (Member # 20953) on :
If my stomach is torn up from all the abx, would that show on the EGD scope? I was too out of it to ask the GI doctor.
I feel that my lyme could be better since I was 6 weeks post tickbite when treatment started. I just don't know how I will know when to kick the abx and see.
[ 12-05-2009, 03:06 PM: Message edited by: jennie46 ]
Posted by sapphire101 (Member # 6638) on :
Sorry you ended up in the hospital. I wondered what happened to you. Hope you feel better soon.
Posted by jennie46 (Member # 20953) on :
quote:Originally posted by sapphire101: Sorry you ended up in the hospital. I wondered what happened to you. Hope you feel better soon.
Thank you.
I pray we can all beat this horrible disease.
Posted by sutherngrl (Member # 16270) on :
Doxy also works against Bartonella.
I took Lyrica for at least a year. It did make me feel kind of high, but it dulled the pain. Later I just took it at night. Got tired of feeling spaced out all the time.
I am taking prilosec now. It does help a burning stomach, but it might take a few weeks to notice improvement. Its best to take it on an empty stomach.
Posted by hopeforhealth (Member # 23673) on :
I was on Lyrica for 4 months after trying everything it was the only thing that gave me relief. Now looking back I have very few memory's from that time period. Between the lyme undiagnosed and the Lyrica making me extremely "high". It turned out I had to go off it as my hair started falling out in handfuls. It has taken over a year and my hair still has not fully recovered. I don't know how common that side effect is but being a female I would liked to have known about it in advance.
Good luck to you, I hope you find some relief.
Posted by Shosty (Member # 12232) on :
Taking Prilosec can encourage yeast and other overgrowths.
Both my daughter and I had similar symptoms (both GI and the burning arms and legs).
Our symptoms resolved by addressing hidden food allergies/sensitivities.
After 6 years on antibiotics for Lyme, with only a little progress, my burning symptoms went away completely when I gave up certain foods.
My daughter, who was also hospitalized for GI troubles and was a puzzle for MD's there, also recovered by eliminating foods, in her case, dairy and gluten.
The results of this approach were amazing.
Taking these meds will address symptoms but not the cause. I would suggest seeing an alternative MD or nutritionist and doing an elimination diet, then rechallenging each food one at a time to identify problems. We eliminated gluten, dairy, corn, soy, citrus, nuts, others....
Prilosec suppresses the acid needed for digestion. Over the long term, common sense tells us that can't be the healthiest approach. Just an opinion...I am not a medical provider of course!
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