posted
My 23 year old daughter is having a relapse of the neurological (congenital) Lyme that she had from age 12-15. At that time she was very ill - bedridden, unable to walk for 2 years and she was so nauseous that she was unable to eat much and her weight was dangerously low.
Back then, we ended up putting a feeding tube in her stomach and feeding her at night while she slept a drug-induced sleep. I made her food with a recipe given to me by a LL nutritionist. Though she's been a vegetarian her whole life, I gave her lots of organic meats through the tube and we never talked about it.
I was really flying by the seat of my pants at the time, just trying to keep her alive.
She was in remission for about 6 years. During that time she has struggled with Eating Disorders off and on (I think Anorexia mostly). It's not something she's been willing to talk with me about, but she says it's not a current issue.
So now the Lyme is back, full-force. She's having very similar symptoms - mainly neurological. She and her new husband have moved in with my husband and I so I can take care of her and he can work and hopefully pay for treatment.
She began treatment in Feb. and her gastro issues have gotten steadily worse. She is nauseous so much of the time and can only eat a handful of foods without vomiting (G/F pasta, popsicles,strawberries, cauliflower crust pizza, rice). She is losing about 8 lbs. per month and is currently around 97 pounds.
She and I are both very concerned about this. We are working with her LLND to get a PICC line, since oral antibiotics have made things worse. It's going to take a while to get an order and get it going. In the meantime she is doing nutritional IVs at his office, but they don't add calories.
We believe that it will probably be a while until we can reverse the weight loss and we don't know what to do. Should we try and get another G-tube and go that route again? We would probably need to find a GI doc willing to write the order, right? She tells me that there is something called a J-tube that is inserted under the stomach and therefore causes less nausea. Would that be a better choice? And what about TPN? Could we do that at home through her PICC line? The LLND can't write the order for the PICC line, but he is referring us to her old LLMD. could he write an order for something for nutrition or are we going to have to convince a GI doc to do that?
I'd greatly appreciate any advice. She is still an adamant vegetarian and I know I can't push her on that. In fact, given the history of ED, I'm reluctant to push her at all with diet. She has Celiac Disease as well. Right now vegetables and fats are not agreeing with her at all and she will vomit if she eats anything other than the few foods mentioned. She uses Zofran and medical cannabis oil for the nausea.
I can't believe we are back here again. It makes me so sad. Thanks for your thoughts.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Please don’t put any kind of nutrient IV in a PICC line, you will be asking for sepsis!
If your doc is referring to an NJ tube, yes, it’s placed down through the nose & ends in the upper small intestine. I had one last year for severe pancreatitis complications.
Honestly, I would never never ever recommend an NG or NJ tube except for emergency treatment.
They pull on your nose, and hurt your throat. I couldn’t swallow anything by mouth because the tube was so large & my throat so small. When ever I tried to swallow the tube would be pulled down a tiny bit & immediately thrown very high into my into my throat.
It was the worst gagging feeling I’ve ever had. Instead of helping, it just made the situation more difficult.
My nausea was far worse with the NJ tube. I was supposed to receive nutrition through it 24/7 but the connection between my tube & the pump tubing kept sliding apart. All of a sudden I would feel the wetness (all over me & bed) & the smell would make me vomit.
With your daughters age, history, & current situation, I believe that a feeding tube would cause more stress than good.
I understand what it’s like to be a long time sufferer with extreme GI issues. I’ve got Ehlers Danlos Syndrome, Common Variable Immune Deficiency, Autonomic Dysfunction w/ Vagal Neuropathy, Mastocytosis, Lyme, Bartonella, Babesia... I’m guessing your daughter probably has a similar mess too.
So when I can’t eat, my GI doctor told me to Very Slowly Sip Boost. Daily goal is to drink 8 bottles. (Try to limit other fluids until you complete your Boost goal). I will get one out of the fridge (best cold) and just keep it in my hand until I’m done sipping it (usually like 1hr).
My favorite is Boost Simply Complete. I do also like Boost high calorie. According to my GI doc, these 2 can provide your proper nutrition. Equal to tube feeding.)
All other nutrition drinks are meant to supplement your diet, as a snack. Without proper balance they cannot meet full nutrition needs.
I really feel for your daughter. When you have such severe GI symptoms, your desire for food slips away.
Imagine, your so hungry & you smell something marvelous. So you quit that fearful voice in your head & go for it. Maybe you get 2 bites down or the whole meal, your so happy, that was so good... then you projectile vomit across the table.
When you suffer every time you eat, you gradually begin to dread it. That’s not true anorexia. Your poor daughter is just trying to protect herself. To find a way to make the pain, nausea, vomiting, diarrhea, ... stop!!!
I hope she can get on a strong combo of IV antibiotics (at least 2 at a time). That is the ONLY treatment that’s helped tremendously. And High dose Malarone for Babesia.
Supplements make my GI symptoms much worse. The only one I can tolerate is Nature Madr Gummy Vitamin C. It would be worth a try to stop all supplements for 2weeks then add one back in at a time. Take each new one for 2 week before adding another, watch for any kind of reduction or exacerbated symptoms.
Sorry my reply got so long. Guess I have a bit too much experience with this!!! Hang in there. Your daughter’s blessed to have such a wonderful loving mom 😇
Posts: 5237 | From here | Registered: Nov 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Instead of pushing foods, go ahead & let your daughter do full liquid diet (the Simply Boost or High Calorie Boost), Drink 8 per day by sipping slowly. This will prevent main causes of nausea.
Both of those Boost actually taste good. And the texture was like a nice thick chocolate milk. Not slimy at all... I can’t handle slimy at all!!!
This will give her gut a rest while providing the nutrients she needs to heal. This alone can help her feel better.
Keep your daughter favorite foods in the house. When gut starts feeling better, she’ll get hungry then gradually start eating more & more.
One last thing, what really helped reduce my GI symptoms was to do a 1 month complete IV Bartonella Combo.
Take care & please keep us updated, we all care.
Posts: 5237 | From here | Registered: Nov 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
****** Be sure to check for h. pylori ****** And be sure of the certainly of the tests.
If meat causes her cramping and constipation, PORPHYRIA should also be considered.
While most doctors will think eating disorders / Anorexia is psychological, there is often an infection connection or other kind of metabolic REASON that her body has these issues.
If eating hurt, I'd not eat, too. I know there is much more going on here but just these two points and then more thoughts in the thread above.
If she has any mood issues, be aware that they might not be psychological but nutrient deficiency caused. -
[ 05-23-2018, 01:44 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If she is an adamant vegetarian and "vegetables and fats" are not agreeing, maybe the kind of fats aren't working for her.
There is an organization that works with kids on a ketogenic diet. In one of the lectures I saw last night a nutritionist in Florida had a teenage client who insisted on vegetarian. So, I advise seeing what they did so that proper nutrients were on board.
The Charlie Foundation was founded for a boy with epilepsy. There was a movie about him that told the fight the parents had about the KIND of OIL he needed.
my hadns are crpme . back later for now, search
Beth Zupec-Kania, Ph. D. on YouTube for 46 min talk -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm not suggesting your daughter should be on ketogenic diet, although since she might be so low in certain foods, this model that is
1) very low carb, 2) high fat (very specific fats) & 3) adequate / moderate protein
might have some good suggestions for nutrients and sourcing.
Be aware that typically nutritionists and dieticians must follow a strict plan from their bosses. They might not have any wiggle room or even the outside training.
A naturopathic doctor might have some ideas. And . . .
A nutritionist in your area that might also be on the Charlie Foundation's network would be a choice for this kind of knowledge for your daughter and finding the right kind of diet for her. Just because a professional might specialize in ketogenic, that does not mean that's all they do.
I think they would be more open minded and also more research hungry (pun not intended, just happened). They are often more determined to make food work for the individual.
posted
I had a similar problem. I had a feeding tube. I never had any issues when I was on it. Not that I think it's a really good idea.
I think nutritional drinks can be a lot harder to digest than regular food for some people (at least they did for me). I never had trouble with nausea or vomiting, so maybe liquids are better in that way.
I did best with lots of meat, vegetables, sweet potatoes whole grains, butter and coconut oil and nuts. I went on a paleo-type diet and I gained even more weight. I feel like I would have died if I was a vegetarian.
But I think it all depends on what foods you are able to digest. Some people do really while with meal replacement shakes, I've heard.
-------------------- chronic Lyme/Bartonella
Inside every sick person is a well person waiting to be freed Posts: 232 | From new england | Registered: Nov 2017
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