Topic: Need to vent a little. Not doing well, stupid drs.
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Hi Everyone,
I've been doing horrible for the past month or so. Abdominal pain started 3 1/2 weeks ago. Since then I can't eat much at all (limited to pudding, crackers, sometimes mashed potatoes) because I get nauseous and have abdominal pain after eating.
My LLMD sent me for an abdominal CAT scan a few weeks ago which was normal. I was taken off all my meds (including IV meds and supplements) and have been off them for 3 weeks now. Since the CAT scan didn't show anything and I wasn't doing better off the meds my LLMD said I needed to see a GI dr.
So, I got squeezed in to see a GI dr. today. I didn't like him at all. As soon as he started talking to me he was questioning my Lyme treatment, laughed at me referring to my LLMD as my Lyme doctor, and didn't seem to think any of this is a big deal. He was just going to draw some blood and see me again in six weeks. I'm not eating, losing weight (lost another 3 pounds since Friday, down almost 20 lbs. in the past few months), and spending my life in bed because I'm too weak to do anything. I got really frustrated and angry but of course didn't let it show.
I stressed how bad I'm feeling and he agreed to do an endoscopy to see if it shows anything (even though he said he's sure it won't show anything). He thinks it's just reflux, even though I have no symptoms of heartburn and it came on suddenly. He did say he's not ruling out a gallstone left behind after I had my gallbladder removed two years ago.
Anyway, it was just a bad doctor's experience. I don't want to go back to him but the endoscopy is already scheduled and it would take weeks to get in to see anyone else.
Just needed to vent. Thanks for listening.
--Annie
------------------ ``The best way out is always through.'' -Robert Frost
Posts: 2184 | From Rochester, MA | Registered: Oct 2000
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Hey you, Im sorry that this happened to you. I HATE that doctor for you! He just non chalantly says "well, it could be a gallstone left in?" How nice of him.
I never had symptoms of heartburn either, but I had grade 2 espoghatitis. In fact, I had NO tummy troubles at all and I went through 6 months of panic attacks and not being able to breathe
to find out it was coming from my stomach. Ick
K, to make you laugh. Think about this. A GI doc I went to when I was trying to get diagnosed was a complete, rude, jerk face.
His name? Asmyr A Aaso.
Ewww! LOL
Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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It is bad enough to feel sick and exploited, but when you have to deal with ugiliness while using your energies to HEAL it is maddening!
Cave posted something a few days ago in Medical that I think is of value to all of us regardless of the geographical location and while you may not utilize it now it may help your feelings just to read it!
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Thank you all for your support and responses. That alone helps so much when dealing with such exasperating and frustrating situations.
This whole thing is just not sitting well with me so I may just cancel the endoscopy, go see my PCP or back to the walk-in clinic I went to last week, and try to go from there. I just don't think I can deal with a doctor who doesn't take me seriously. I can't work that way.
My mom wanted me to just use the GI dr. for his expertise (which I don't know anything about) and forget about his ignorance or insensitivity. But, I can't do that. If a doctor doesn't listen to me and believe me and understand at least a little about the truth of Lyme, I don't have faith that he/she will be someone I can work with and who will really do their best to figure out what's wrong.
I'm going to talk to my parents about this today and figure out where to go from here.
I'll keep you all updated.
Peace and healing, Annie
**Editing to update** I talked to my mom and we're going to go back to the walk-in clinic that I went to last week. I'll see the person I saw last week and get her help in figuring out where to go from here. I think this will be a better plan than sticking with a GI doctor I'm not comfortable with at all. Keeping my fingers crossed that this goes well!
------------------ ``The best way out is always through.'' -Robert Frost
[This message has been edited by arg82 (edited 14 October 2004).]
Posts: 2184 | From Rochester, MA | Registered: Oct 2000
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once bitten
Unregistered
posted
I had horrid stomach problems once and i went to a holistic doc in Cohasset. He did muscle resist testing for food and meds. It helped tremendously. I was down to eating rice, squash and boiled chicken and afraid to eat that. and weak as a kitten. I had done all the reg food testing and all that junk, but this worked. I came away with a list of what I could eat. email me if you want the name and number. I am a real skeptic but this worked in the past and it worked at that time too. sorry you are going thru this. You need one of my bumper stickers. email me your address and I will send you one.
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Okay, here's a little update as of today.
I went back to the walk-in clinic that I went to last Friday to try to get some symptom relief while waiting for the GI appt. On their scale (the same one I was weighed on last Friday) I have lost four pounds in the past week. Not very good.
I saw the nurse practitioner who is very nice, I like her a lot. She was very honest with me about her views on Lyme (she doesn't really believe in long term treatment) but she also said that she fully supports my decisions on what treatment I need. She was also very understanding about my bad experience with Dr. V, the GI dr. I saw yesterday.
She's concerned about my continued weight loss and wants me to push the food, especially Boost or other liquid nutritional supplements. So, I'm here with a boost (with higher calories) by my side and water to keep me hydrated.
She's calling the GI dr. that they refer people to and fully trust. She also said that she believes my PCP (who she knows) also totally trusts this GI dr. So, hopefully I'll get an appt. with him asap.
She also called my LLMD who then called me on my cell on my way home from the walk-in. She was concerned about the rapid weight loss but I felt like she was blaming all the GI stuff on me and scolding me for not eating. I didn't get the best feeling from that phone conversation but I'll try not to let it discourage me. She said she thinks the GI stuff was all from the IV Rocephin and now that I've been off it for three weeks (as of yesterday) she thinks the GI stuff has probably resolved itself and now it's just psychological.
I do admit that part of it is psychological - I know that eating a lot has caused horrible abdominal pain so therefore I'm afraid to eat a lot. I know this is bad and gets me into a bad cycle but when faced with the option of eating and bad pain or not eating and less pain...well...I'll choose the less pain.
But, I'm pushing the Boost, trying to drink more (haven't been drinking enough either), and attempting to get at least 1000 calories in a day. Hopefully this will stabalized my weight and give me a little more energy. Maybe I'll be able to get out of bed and really do something at some point this week!
That's it. Thanks for reading through all this and the support and suggestions.
Once Bitten, I'd love it if you could e-mail me the name of the holistic doc you saw. Was he/she understanding about Lyme? My e-mail is [email protected].
Thanks again! Hopefully I'm on the road to figuring this out and getting back on treatment.
Peace and healing, Annie
------------------ ``The best way out is always through.'' -Robert Frost
posted
Hi Annie! I'm so sorry you're in such a bind! I've been in the cycle of which you speak. It's scary to lose weight so fast.
One thing to consider is that you may be doing more harm than good with the Boost. It is loaded with sugar. Your "safe diet" is also full of carbs and you may be getting into a really bad round of systemic yeast this way.
I would suggest switching to Atkins shakes instead of the Boost. I don't think the vitamin count is as high [but it could be] but I know Atkins is high in protein which is good too. This way you would get the vitamins and protein, but little sugar, which could make you worse in the long run.
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Thanks for the responses and support.
I got an appointment with a GI dr. that the walk-in clinic refers patients to for Wednesday afternoon which is great. I'm really glad the walk-in clinic has been working hard to get me in there.
I have a question for everyone. A Lymie friend of mine has said that when she has trouble eating she finds that saline drips really help her. She said that she attributes some of the appetite and nausea issues to dehydration which I think is definitely becoming a part of the picture here. I've been trying to push as much fluids as possible but when my stomach is upset it's hard to drink much. And even with the amount I'm drinking now, I definitely have decreased urination (from once or twice an hour to three or four times a day).
What do you all think? I don't quite know how to bring this up with my LLMD when I talk to her next. I have a chest port and I'm already set up with a nursing service from my IV treatment (just on hold right now) so it wouldn't be hard to arrange and I think it might help. Any thoughts? Any ideas on how I could bring this up with my LLMD?
Thanks again, Annie
------------------ ``The best way out is always through.'' -Robert Frost
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Just needed to vent. Thanks for listening.
Ewww! LOL
oops! 
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