posted
Hi everyone...I am so damn frustrated right now. I have spent all day trying to eat and I simply cannot physically do it...I ate a few bites of egg, 2 ensures, half an apple, and half a cup of rice with chicken and I threw up 3 times. I cannot eat, no matter what I do. I called my LLMD and he wants to have a meeting tmrw at my GP'S office...ugh. I dread this.
Should I ask the drs to give me a week to drink my nutrition and see if I can arrest weight loss or should I just try TPN for a few weeks? I will do anything at this point to feel better. My llmd says that the cause of not keeping my food down is the severe gastroparesis. I am scared this will never improve though and I will be stuck on an IV for the rest of my life.
Thanks for letting me vent. Sorry to be woe-is-me..I will survive no matter what, but I just RESENT being so sick all the time when I try so hard to get well. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Living (Well!) with Gastroparesis: Answers, Advice, Tips & Recipes for a Healthier, Happier Life
December 2011 - About the Author:
. . . currently the only Certified Health Counselor specializing in gastroparesis management and one of very few health professionals with both personal and professional experience with the condition. . . .
The reviews are very encouraging. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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poppy
Frequent Contributor (1K+ posts)
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posted
Why are you afraid of being on IV forever? It sounded like you have not done it yet. Is this incorrect? You have been posting about this same problem for quite some time now. And people keep trying to help, but it does not lead to change in approach. It is time to switch gears, seems like.
Your doctor says the problem is caused by lyme disease and wants you on IV. You should believe him and go with his treatment plan. IV is much easier on the GI tract.
You know what they say about doing the same thing over and over and expecting to have a different outcome?
Posts: 2888 | From USA | Registered: Mar 2004
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surprise
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posted
I'm sending you good thoughts for healing---
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Poppy-I am scared of being on IV nutrition forever..of never being able to eat like a normal human being again. I never realized how lucky I was until I got sick. I used to love to eat and was a dancer and athlete and it was great. Now, I feel like I am not even human because I cannot do the ONE THING that is required above all for survival-take in nourishment.
I just feel so lost right now. It is maddening to do all you can to get well but your body won't cooperate. I am tired of being sick. I just want to be a normal human being again for a day. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Razzle
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posted
quote:Originally posted by poppy: Why are you afraid of being on IV forever? It sounded like you have not done it yet. Is this incorrect?
IV is much easier on the GI tract.
Poppy,
Chastain is not talking about IV abx, she's talking about IV food. Her stomach won't let her eat anymore.
Chastain,
You know I vote for trying the TPN. If it doesn't work out for you, then try Tube Feeding, but really, I think your gut needs a break from food for a few days to break the vomiting cycle. Tube feeding won't give you that break, but the TPN will.
Yeah, when I went on TPN in 2008, I thought it would be forever too...I mean, I couldn't swallow anything, so what else could I do? So went on the TPN, and now I am off. No, this won't be forever. Just long enough to get your body to a state where you can get the infections under better control.
And I know of others who had severe gastroparesis that got better once the infections were treated adequately...it can happen for you, too!
Don't give up!
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Thanks Razzle..you have been so helpful to me. I am SOBBING right now, so frustrated. I tried as hard as I could to avoid this. I see it as a failure, but maybe it'll be a new beginning. Damn this disease. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Didn't read all of the above, so if someone has already suggested this, I apologize.
My uncle was prescribed a medicine called Megace, which helps to stimulate appetite. It really seemed to help him.
If you haven't already tried it, you might want to ask your llmd about it. I think it's pretty safe. He felt no side effects from it that I am aware of.
Have you tried phenergan or zophran for the nausea?
I hope the llmd is able to help you. Take care and keep us posted.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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Kudzuslipper
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posted
Jess, just take one thing at a time. Right now, it is nutrition. Your llmd and Gp are meeting you together (that in and of itself is a miracle of sorts.). And shows how much they want to help and also how serious this is. I think vomiting can become a habit. And it is also very stressful to wrech your body like that. I think if you give your body and stomach a break that will go a long way in your overall health.
You were healthy. There is no reason to think you won't get there again.
I can tell you rally like to be in control of your health. Which is a really good trait. But maybe for just now you should give in to what the doctors want to do to help you.
I'll be thinking of you tomorrow.
Posts: 1728 | From USA | Registered: May 2011
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poppy
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posted
I see. So you have been on IV abx then?
Razzle is a good example of what IV nutrition can do. Good advice. You are not committed to forever with this. At any time you could back off, so give it a try, knowing that it is not permanent.
We are about as frustrated as you are at your situation and want you to get this situation under control. Whatever it takes.
Posts: 2888 | From USA | Registered: Mar 2004
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sammy
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Member # 13952
posted
Hugs Jess.
At this point I wish you would accept the TPN knowing that it will not be permanent but a temporary help in this most difficult time.
I think that it is also time to start a full protocol of IV antibiotics to treat the myriad of infections that are likely causing or at least contributing to the GI distress.
I say these things as a friend that cares and is deeply concerned for you.
IV antibiotics have a much greater impact on my GI tract (and whole body!) than any of the oral combos ever did. That may be because I simply could not absorb the orals....
Anyways, I know scary it is to have to try these drastic medical interventions but what you are doing now, what you have put significant effort into trying in the past is not helping. You are getting sicker and your body is wasting away. I know you don't want to get sicker.
It's time to try something different while you still can, before your body gets too weak.
Jess, when I read your posts I'm so often reminded of myself. Brings up lots of emotions. I didn't want to admit that I was sick enough to need it. I had to wait until I was so sick and scared enough that I might not make it without IV intervention.
The sooner you start, the sooner you can start getting better.
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Razzle
Frequent Contributor (1K+ posts)
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posted
It is NOT a failure!!! Indeed, TPN is a step forward towards giving your body what it needs, that you aren't able to get any other way.
You need to be spending your energy battling the infections that are CAUSING your Gastroparesis, not battling just to stay alive. TPN will help you do this better than what you've been doing thus far (i.e., trying to eat without much luck).
No, it is an acknowledgement that you need help. That's half the battle right there - identifying and admitting your needs.
It takes a great deal of strength to admit this sort of thing, so kudos to you and you go girl!!!
Now to get you feeling better Line up your questions and talk to your doctors as soon as possible. Tell them all the stuff you've told us in this thread - that you're at your wits end, that you can't continue like this and you need the nutrition support of the TPN.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Thanks so much everyone for the supportive replies...it means a lot. I am just so scared. I just had a talk with my ex boyfriend who I trust more than anyone and my best friend and my dad and they all say to just do whatever I need to in order to get better. They want me to get better. I am so scared, though.
I really hope this makes a postive difference in my life. I can't take more pain all for naught. I will endure anything if it helps me get well, though. Oh man, I hope this helps...Thank you again. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Dekrator48
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Member # 18239
posted
Praying for you, chastain/Jess!!
Our God loves you and He has a great plan for your life.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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You have been battling a long time and I am sure that this seems like a step backwards.
You mentioned in one of your posts that you feel like you're in a boxing match. Maybe you feel like you are against the ropes.
Your trainer (LLMD) is telling you how to get out and it is important to listen because all you can see and feel is the blows hitting.
It is okay to trust. Actually, it can be healing to trust.
Fear can be paralyzing and that is when our friends and family can help us to make decisions.
Posts: 538 | From kentucky | Registered: Nov 2011
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At one point during my treatment I was loosing weight so rapidly that I thought my end had come.
I have always been on a skinny side but during that time my weight fell to 90-95 pounds and neuro symptoms were horrid.I could not put anything down my throat I was just disgusted by food. The only thing I could eat and my body was craving were chicken tenders. It lasted for 3 months. My appetite came back over night, the same way it went away - just strange.
My experience with fighting Lyme is to keep fighting and never ever give up no matter what.
Today when I look back on first 3 years of my illness, symptoms and treatment I wonder how was humanly possible to go through it and stay alive. My only logical explanation is that my survival instincts kicked in early and I never let go of it. Trust your instincts and keep fighting back.
nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
I'm so sorry your feeling so ill.. I don't know what TPN is?
Let's Pray that God will give you the peace you need to decide...... I would gladly give you 40 lbs if I could. Not in a bad way
It sounds much worse than my bad day's, but Phenagran (sp?) helps on really bad days or a shake with protein added... something you like a lot.. Me Vanilla> shakes at Mc Donalds, that's when I just can't even stand the smell of something else.
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
Jess-I've been reading all your posts, I'm also praying for you.
I was nauseous for a while ,it was the worse, not as bad as you so your very strong for hanging on this long.
Although I am eating pretty good , I often think of how my doctor tells me I'm one of his worst patients and my immune function is really bad. cd57 11 and think how does your body ever recover?
One thing my doctor told me to think of was think of aids patients, their immune systems are able to make full recoveries, even very sick ones, with the help of the new drugs but still.
Once your body gets used to some sort of nutrition it will recover and you'll get your appetite back.
take care.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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posted
Jess, I don't think any of us can assume anything we do is forever. A particular treatment may be part of our path, but no one is saying forever, for any treatment!
Seems to me you should go ahead and try the treatment that will give your body a break for now, and continue to learn about what's going on and what people do for it, like for example the referral Keebler gave you to the woman who treated what you have.
We are a work in progress - we never know what's going to help us until we try it.
Posts: 13116 | From San Francisco | Registered: May 2006
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Nonna,
TPN is Total Parenteral Nutrition, basically food given through a vein (through a PICC line or Central Line).
In people who have severe digestive system disruption, either due to severe malabsorption or dysmotility (Chastain has severe dysmotility), sometimes feeding them intravenously may sometimes be necessary.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Kudzuslipper
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posted
Thinking of you today Jess. Hope your appointment goes well.
Posts: 1728 | From USA | Registered: May 2011
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Jane2904
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posted
Hope all goes well or you .
Hang in there.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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Catgirl
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Member # 31149
posted
Jess, this disease makes it difficult at times for any of us to think. I have over thought what to do so many times. I'm with Razzle and your docs.
Keep your fears out of this, they're getting in the way of you moving forward. You will get better. The TPN sounds like the way to go to me.
You have nothing to fear but fear itself. It's negative energy, and you really don't want or need to bring it on.
Hang in there. We are all pulling for you. :)
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Line up your questions and talk to your doctors as soon as possible. Tell them all the stuff you've told us in this thread - that you're at your wits end, that you can't continue like this and you need the nutrition support of the TPN.![[tsk]](graemlins/tsk.gif)
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