posted
Hi everyone..I saw my LLMD today. He and I had a bit of a disagreement about my TPN. He wanted me to stay on it for up to a YEAR (!!) and he refused to lower my hours from 12 a day. I told him I then refuse to continue with the TPN once I hit 90 lbs (I am 87.5 lbs now).
After a bit of back and forth the dr agreed to my position on these terms-I must start IV Rocephin after hitting 90 lbs; I must maintain 90 lbs and if in 3 months I have not gained past 90 lbs and/or if I lose any weight, I must begin TPN again indefinitely.
I feel such relief to be going off this 12 hr a day regimen soon. My dr is encouraged by the fact that a vegan diet which includes gluten is helping me keep all my food down now.
So that is the update. I know I am still painfully thin and will remain so at 90 lbs but I need a break from this regimen. It is simply too much to deal with on a chronic daily basis.
Thanks for the support. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Sending you good thoughts Jess---
-------------------- 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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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Any chance you would be willing to do TPN 2-3 times a week instead of stopping completely? It would be better for your body to not stop cold-turkey...
I know it is a hassle. But I'm concerned that stopping the TPN will cause you to start losing weight again.
I'm thrilled you have found a diet that finally works for you...that is wonderful news!
But your body's nutrition status is not fully restored, hence my concern that you will lose weight again when you stop the TPN.
But of course you have to do what you feel is right for you. So read my advice, but don't feel like you absolutely have to follow it... I'm just trying to offer my opinion
I hope you really do well off the TPN with your new diet and that my concerns are not realized...
Good luck
-------------------- -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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Razzle-I appreciate your concern and help so very much. I want to assure you that if I drop even a pound or two below 90 and /or dont start to gain on my own, I will definitely go back on the TPN.
Right now, I need a break. I almost died from c diff in the spring, I am so sick with the lyme, but I also have a life. I have an AMAZING boyfriend and good friends and I just need a chance to feel semi normal for a bit.
If the vegan diet wasn't working and if I was still vomiting daily I would not even consider going off the TPN. I think its safe to at least try without it.
Thanks again so very much. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I am rooting for you! but will be the first to hold you to your doctor's bargain.
I am psyched you are holding food down.
Posts: 1728 | From USA | Registered: May 2011
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posted
kudzu-I vow to you, I want to live believe me...I won't do anything to risk my health and I have a great dr who watches me like a hawk ha...
I am psyched about the holding food down too! I am still really nauseous a lot, but I am not vomiting on a daily basis and its just such a relief.
my boyfriend says its his love healing me HAHAHA....Thanks again Kudzu, you are always so supportive. jess.
Posts: 870 | From ct | Registered: Nov 2012
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posted
I'm sure it will be a big relief to be off the TPN. Sending wishes for further healing!!
Have you tried sipping some aloe juice? It's so healing for your stomach. I use a brand called Goerges, and it literally tastes like water. Just thinking it may calm down your digestive track and help to heal your stomach.
I'm rooting for ya Posts: 486 | From USA | Registered: Jan 2012
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posted
Ah-then I definitely won't....thank you Razzle...you are always such a big help!! xo Jess.
Posts: 870 | From ct | Registered: Nov 2012
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
I'm with Razzle on this. IMO it would have been best to continue with the TPN 2-3 times a week.
I'm kind of surprised that your doc gave in so easily to your request rather than suggest you continue the TPN for fewer hours daily or fewer days/week.
Like others here, I too am concerned about you and your ability to sustain your weight given your very limited food intake.
And ixnay on the aloe juice. Not a good idea for you at all at this point--totally agree with Razzle.
Kudzuslipper threw down the gauntlet. You are bound by what she said and we'll all hold you to it.
Posts: 1885 | From here | Registered: Jul 2012
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
But NO pressure or anything
Just know ALL eyes are on you right now.
xoxoxoxo and more xoxoxoxo
Posts: 1885 | From here | Registered: Jul 2012
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posted
Beaches-my dr kind of gave me an all or nothing deal. When I explained (ok begged ha) him for a break he said yes, provided I adhered to the conditions I mentioned in my previous post.
I am a little worried too, but I am being monitored very closely. I am kind of excited for at least a few weeks though of not being obligated to infuse for 12 hrs a day.
Yes, Kudzu threw down the gauntlet ha..and yep, I definitely don't feel ANY pressure with all the eyes on me . Its very nice that people care so much.
Rest assured-if I think for a second that I can't eat enough to sustain myself , I will hook right back up to the TPN for however many hrs a day I need. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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