posted
Hi everyone. I am doing everything I can to gain weight as I am terribly underweight at the moment, but my gastroparesis seems to stymie me everytime. I have tried aloe vera, ginger capsules and over the counter anti-nausea meds, to no avail.
I am at the point today where the minute I go to swallow food, I can feel my body rejecting it and trying to make it come right back up. I literally have ZERO appetite. This is making me so depressed and frustrated.
I am still averaging 3000 cals a day, but I cant keep this up. It is EXHAUSTING just to eat a meal. Any suggestions to at least help me stop feeling like I have a 24/7 stomach flu? Thanks . Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Carol in PA
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posted
Did you consider Seacure.
Also, digestive enzymes.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Carol, I take digestive enzymes and they don't seem to ease my symptoms. I am thinking of trying the Seacure though, yes. This is beyond frustrating. I just need to have a little appetite and not be nauseous all the time. I think my nausea is compounded by my vertigo as well. ughhh...what a mess. Thanks, Jess.
Posts: 651 | From ct | Registered: Sep 2011
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posted
3,000 calories seems like a lot! Can you ease into eating with 1200?
Gastrocrom helped us. It is made from an Egyptian plant, a clear liquid in small vials that you mix in water, with anti-inflammatory properties. By prescription.
Have you tried prescription Zofran? (anti-nausea)
Have you had an endoscopy or procedure to diagnose gastroparesis? There are Rx meds for that. Or maybe you have eosinophilic esophagitis, a popular diagnosis these days that is treated very effectively by swallowing puffs of a steroid inhaler shot into the mouth rather than lungs- no systemic steroids to speak of. Or did an endoscopy show yeast, or other testing?
Have you tried an elimination diet, to see if you are reacting to dairy, gluten or other foods?
Sudafed and/or Afrin can help with vertigo and nausea.
Are you on antibiotics that affect your GI? Do you take probiotics?
Sometimes all of these are relevant at the same time.
Also, relaxing, meditating, imagining food going down, biofeedback that kind of thing can help. I personally do Tai Chi.
p.s. my bulk food is that baby rice cereal, very bland and hypoallergenic. If I am not doing well I eat it with applesauce, otherwise I mix in frozen fruit.
Posts: 108 | From US | Registered: Apr 2012
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posted
Hi pug. Oh man I wish I could eat 1200. I am just BARELY maintaining 80 pounds at 5 feet 3 eating 3000 a day. I think it I ate 1200 a day I'd die in a month. I had a lot of help from Zofran but it gave me cardiac issues so I cannot take it, sadly.
I do not eat gluten, and I have tried elimination diets. Anything I eat makes me feel sick, whether its veggies or a cheeseburger. Pretty much the only thing I can consume that doesn't make me feel awful is Ensure.
I think the meditation before eating as a good idea. I am honestly afraid of food now. I am truly afraid to eat, and its such a depressing state to be in. Thanks so much for the thoughtful response. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Razzle
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posted
Some with Gastroparesis say that Iberogast helps them feel better. I've never tried it because I'm allergic to licorice root (one of the ingredients in Iberogast).
Other nausea medications (prescription needed) include:
Visteril Phenergan Reglan (also treats gastroparesis) Compazine Ativan (also helps with anxiety) Scopalamine (patch; helps with motion sickness)
Non prescription anti-nausea ideas:
Acupuncture (helped me when I could handle it) Or a motion sickness wrist band...
Over-the-counter Medications: Benadryl Dramamine (motion sickness medication) Claritin/Zyrtec/Allegra (long-acting antihistamines that may help with nausea)
Herbs/essential oils: Ginger tea or capsules Peppermint oil (aromatherapy) Pachouli oil (aromatherapy; prevents vomiting by relaxing the muscles necessary for vomiting)
Homeopathy: Homeopathic Ipecac. (NOT the syrup from the drug store!!) Homeopathic Nux V. (homeopathy's "pepto-bismol") Homeopathic Pulsatilla (for gastroparesis made worse by hormone fluctuations)
You might do well also with homeopathic Carbo Veg., as this remedy is well suited to nutritionally depleted cases such as yours.
Also, I find good help for my stomach from a digestive enzyme called Acid Soothe. It can be taken with meals, or between meals when you feel indigestion or fullness, too.
A note about Seacure - it is made from fermented fish. If you are allergic to fish, or if a fishy odor or taste would likely increase nausea, then I'd advise caution. I'm allergic to fish, hence why I've not tried Seacure.
If Ensure is what you do well with, then be sure to drink as much as you can keep down and don't worry so much about other foods.
The goal is to be able to eat something and keep it down...not to force things your body is telling you aren't working. And because Ensure is complete nutrition, it is ok to not get other foods right now.
Some people say sugar water helps with nausea...I've not found this to be the case for me, but I did used to sip 7up or Ginger Ale if I was feeling sick (before I couldn't tolerate them anymore due to the sulfited corn syrup in them).
Also, I'm starting to think you may need to go on TPN for a while to get your body weight back up to where it needs to be.
I've been on TPN twice for Gastroparesis, and my doctor has told me it is likely I'll have to go on TPN again at some point (not what I wanted to hear, but at the same time I did appreciate his honesty).
Please feel free to PM me anytime. Gastroparesis sucks!
-------------------- -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
Razzle-thank you SO much for the suggestions! I am trying to drink as much Ensure as I can right now. It is the only thing I consume, other than cheese, that I can digest with (comparative) ease.
I am so trying to avoid the TPN but I know that if I cant start to gain weight, it is inevitable. I will feel so defeated if i end up on a tube, though. I am fighting so hard to eat and keep food in, and it would just make me so upset if I need a tube to keep me going.
I will PM you, thank you for the offer. Yes gastroparesis is HELL. All my best to you. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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sammy
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Hi Jess,
I'm really struggling with this right now too. Thankfully, I haven't gotten to the point where I am underweight yet. I am trying to prevent that. I've been there before because of GI problems and I don't want to go there again.
My doctor is having me try Reglan and omeprazole again while we go through the battery of testing. I guess we need to make sure that nothing else is going on since I haven't had GI tests in a few years. I just had the EGD, gastric emptying scan, and a CT enterography.
The reglan seems to help a little with appetite, which is a huge blessing for me. I still struggle to tolerate many foods. I do better with smaller amounts right now and higher calories. Butter is my friend (serious). And I do take digestive enzymes to help.
I eat Ezekiel sprouted grain bread with lots of butter every day for breakfast. It's not much but it is something that I know I can keep down. I also do well with berries. 6-8hrs later I can try to eat another meal. Sometimes I can eat a 3rd meal of something light like rice chex and milk and fruit.
Surprisingly I tolerate nuts really well so if you do too, this is a great high calorie food.
My GI doctor also recommended Ensure. And I take Zofran when the nausea gets bad.
Gastroparesis and nausea is extremely unpleasant. Have you talked with your doctor about trying any other medicines like Razzle mentioned? Maybe there is something that might help you.
Hang in there. You are not alone.
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Razzle
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It may take more than one of the things in my post to get your nausea under control, at least initially.
I was on Reglan, Scopalamine, Zofran, Ativan, and the motion sickness wrist band, and STILL having too much nausea to eat...it took me about 3 weeks on all these meds to be able to start tolerating even water.
-------------------- -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
I also heard that iberogast is a good remedy for gastroparesis.
Also this website may be helpful
livingwithgastroparesis.com.
She is a nutritionist that also has gastroparesis. There is a fee to consult with her but it might be worth the investment if you can afford it.
Posts: 538 | From kentucky | Registered: Nov 2011
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Razzle
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If a person can only tolerate 1 or 2 foods, seeing a nutritionist is a waste of time/money. Been there, done that, bought the T-Shirt, emptied my wallet needlessly.
-------------------- -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
I appreciate it soccermamma but Razzle knows what time it is on this. I saw a nutritionist, she told me to follow this plan. I followed it exactly and I threw up 90 percent of the foods she recommended. Sadly a nutritionist is a Waste of time and money when you can only consume a handful of things. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Sammy, I cannot thank you enough for yr post. I am so sorry that you are experiencing this as well. I am scared now because I am so thin and I cant gain. I am down to 80 pounds and I just wanna keep all my food down and gain weight. I am aching for some relief on the nausea and pain as I work on eating as much as I can. As you know, gastroparesis makes life utterly unbearable at times. I hope you feel better soon. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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posted
The MINUTE you begin having facial twitches on the REGLAN... STOP IMMEDIATELY. It can become permanent.
I took it for a year and it helped me a LOT .. but I got the tardive dyskinsia (sp?).. My doctor had NOT warned me about it.
I stopped the med and all was OK within a week.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Razzle
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posted
Yup - Reglan is known to cause movement disorders...this is why many prefer Domperidone (which does the same thing as Reglan, but doesn't cross the BBB, thus doesn't cause movement disorders).
Unfortunately, Domperidone apparently can affect the heart and is now contra-indicated in those with pre-existing heart issues.
-------------------- -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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sammy
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Thanks Lymetoo, that's scary! My doctor had me sign a bunch of papers before starting the reglan.
Unfortunately domeperidone did not help at all. It actually made me extremely anxious and irritable which is so not like me. I couldn't handle it. Maybe my doctor had me take too much. I literally felt crazy.
Posts: 5237 | From here | Registered: Nov 2007
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Lymetoo is right. Reglan gave me tardive dyskensia as well, I had to stop it right after starting practically. My Gi dr told me it is notorious for causing all kinds of odd neuro issues. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Razzle
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Sammy,
Domperidone is usually started at the lowest possible dose, then increased only as needed. If your doctor started you on more than 10mg once a day, that's too much to start with and may explain why you reacted like that...
And not everyone can tolerate Domperidone...I've heard of others having troubles with it, and it is known to cause hormone troubles for some (increases prolactin).
Erythromycin or Mestinon are other options besides the prokinetics (Reglan, Domperidone, Prepulsid) for helping with gastroparesis.
-------------------- -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
Ensure is dairy-based, and of course so is cheese. My daughter's GI was in bad shape and she kept having ice cream to soothe it. Turns out that dairy was causing some of the problems. Have you tried eliminating dairy, or just gluten?
At another point, she was diagnosed with gastroparesis but it was actually endometriosis, partially blocking her intestines.
She also was diagnosed with gastritis due to yeast (endoscopy) and also celiac (she has type 1 diabetes).
So it seems you can have multiple things going on. For her, an integrative medicine doctor took things step by step, and it took awhile. One brush fire would be put out and another would pop up. You understand.
She also did lessons in self-hypnosis- I forgot about that. So relaxation and visualization helped her too. There are hypnotists who are really good with food fears (not that that is a primary concern here, or a cause, but it is an effect).
Between her problems and my problems, I became very skeptical of diagnoses like gastroparesis, although at least that diagnosis means you are being taken seriously.
And meds have so many side effects. In the end, we used gastrocrom because it has no side effects.
Your situation sounds very scary, and I am so sorry. I am also sorry to write posts that might be overwhelming. I think things will turn around for you and just hope you have a great GI doctor you can trust.
Posts: 108 | From US | Registered: Apr 2012
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Pug, I thank you so much for the post. I eliminated dairy for a year and it didn't help at all. Ensure and cheese actually don't upset my stomach in the horrific way that lots of fiber does, for instance. I suppose everyone is so different.
I hope yr daughter is doing better, btw. I cannot thank you enough for the kind words. Yes, this is a pretty scary situation, especially because the people that I love are so scared. My poor father, I am his only child and he is calling me everyday begging me not to die. So then I try even harder to push myself to gain weight and its just exhausting.
I am hoping for a turn around soon. All the best to you, Jess.
Posts: 651 | From ct | Registered: Sep 2011
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WPinVA
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posted
I don't know anything about gastroparesis but I do know a lot about eosinophilic esophagitis (EoE) (go to www.apfed.org for more info). It sounds similar enough that I'll post some info in case you can benefit. Do you know for sure that you have gastroparesis?
Vomiting and stomach pain are very common symptoms with EoE as well. I saw that someone else mentioned Gastrocrom; this was a very helpful drug for my EoE daughter during a period of chronic stomach pain. She also benefits from taking VSL#3, a prescription probiotic.
Have you tried keeping a food log to look for trends? Keep in mind that some reactions to foods may be delayed reactions, which can make this very hard to tease out. And the trigger foods may cause generalized inflammation or damage that makes eating all foods a problem. At least both of these things can be true for EoE patients.
Some people with EoE are able to figure out problem foods with patch testing (google it) or by eliminating the top 8 allergenic foods, plus sometimes corn, then doing food trials one at a time to see which ones they can tolerate.
But there are some people with EoE who can't tolerate any food at all, and many have achieved remission through stopping all food and consuming solely an elemental formula, like Neocate or Elecare. Others have gone on a G-tube. I wonder if either of these could help you? It is usually possible to then slowly add back in some foods after things have stabilized.
As someone else mentioned, steroids are also a treatment for EoE. There are differences of opinion on this but I personally think the better approach is to use that as a last resort.
Finally, have you tried a proton pump inhibitor like Nexium or Prevacid? Prevacid did not completely resolve my daughter's symptoms but it did help some, and she's not alone. There appears to be a connection between acid reflux and EoE, which is not yet well understood.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Hi Wp. Yes I am sure I have gastroparesis, I have had several gastric emptying studies. I have had multiple endoscopies that ruled out EoE. My GI dr doesnt know much about lyme, but he does know about EoE and wanted to rule that out with me, which he has.
I have taken Prevacid, yes. I found a slight benefit w some of my reflux, but my dr took me off it because I developed c diff earlier this year and almost died, and my dr told me taking a PPI Increases the chances of c diff returning and I would rather cease to be entirely than experience c diff again, it was THAT miserable. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Carol in PA
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posted
Did you try coconut oil? If so, how did you do with it?
Another idea is cayenne. I bought a product called Buzz in a Bottle, and put ten drops in a half cup of iced tea...it relieves stomach upset and nausea.
It's pretty intense. You can also buy cayenne in capsules.
[ 07-28-2012, 01:06 AM: Message edited by: Carol in PA ]
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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linky123
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posted
Are you by any chance taking benzodiazepines?
I had a terrible time with klonopin and had to taper off. Became tolerant to it, but didn't realize it.
I felt awful and of course, the doctor's answer was to updose which just made me sicker. I couldn't eat at all and lost tons of weight.
Only when I began to taper did I start to get my appetite back.
-------------------- '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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Razzle
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posted
WPinVA,
Gastroparesis can cause stomach pain and nausea too.
Carol in PA,
High fat content items, such as coconut oil, can be very, very difficult for those with Gastroparesis to tolerate because high fat foods slow down stomach emptying even more...just what we with Gastroparesis don't need...
Don't think cayenne would be my first choice if I were in a Gastroparesis flare...might be too irritating...
-------------------- -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
Carol, I can;t take cayenne, it is too harsh for my digestive tract. I have not tried the coconut oil yet, I purchased it but have been too afraid to consume if for just the reasons that Razzle describes. I have even more fear of high fat foods because since I lost my gallbladder it is incredibly difficult to eat very high fat foods without some SERIOUS intestinal distress after. Thank you for the help as always, though. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Carol in PA
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posted
Yeah, I can see that a high fat food like coconut oil might be a problem with gastroparesis. But I don't see how you can get enough calories without eating some fats. Are you eating eggs or cheese?
I don't think cayenne is irritating to the stomach. Did you read the info at the link, and look at the reviews? These people are saying how it helped their gastritis and their ulcers.
I find it very helpful when I'm nauseated.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Razzle
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Gastroparesis = slow stomach emptying, meaning the stomach does not let the food exit out into the small intestine at a normal pace. Normal pace is half empty after 90 minutes (1.5 hours). My last emptying test showed 211 minutes (almost 4 hours).
If Gastritis is present (very common in Gastroparesis), irritants such as Cayenne pepper can make the situation worse because the pepper is in contact with the inflammed stomach for a longer period of time in those with Gastroparesis.
Yes, Cayenne is great for someone with NORMAL emptying time and gastritis, but in the setting of Gastroparesis, I can't see how it could benefit.
Trust me, I know - I used to eat a lot of cayenne and chile peppers. But once I started having problems with chronic gastritis, I no longer could tolerate these spicy foods without experiencing severe burning pain in my stomach that would last for hours and hours because my stomach couldn't empty normally.
The nausea of Gastroparesis is a whole different kind of nausea, because the food can't go down so it threatens for hours to come up, and sometimes does. If you add burning pain to this (which likely would not go away after vomiting), I'm sorry, but to me that would be just too much.
-------------------- -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
Carol, thanks for yr suggestions. I am eating some cheese, and am tolerating it ok. Also egg whites but egg yolks bother me. Razzle, once again you describe it perfectly. The nausea is absolutely horrific with the gastroparesis, unlike any I have ever experienced.
During a meal I shake and I sweat with the effort of holding food down to try not to have it come up. After I eat something I sit in certain positions to try to keep myself from vomiting it right back up. I simply cannot eat without being tortured after. And I am now eating 6 times a day. So imagine that. Plus I have vertigo really bad and the nausea from that, plus the nausea from the gastroparesis, makes life REALLY tough at times. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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posted
DO you know what causes the vertigo? Is it something in middle or inner ear, your brain, or nerves in your neck?
Can you graze all day (dried fruits?) so less food is in your gut at at time? I would think a big big problem is the amount of food you have to eat, 3000 calories. I understand that you need to gain weight really urgently, but is there also an absorption problem with your gastroparesis? Or a metabolic problem w/burning too many calories? Thyroid?
Normally, with, say anorexia, they refeed starting slowly. Your required calories sound overwhelming for a healthy person, and with the food backed up the way it does with gastroparesis, it sounds unbearably uncomfortable.
Posts: 108 | From US | Registered: Apr 2012
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posted
Pug, the vertigo is caused by the lyme and some of my conifections affecting my inner ear. I have no thyroid problem, but I have always had an incredibly fast metabolism. I have always needed a large amount of calories just to maintain my weight.
Refeeding slowly will kill me. 3000 calories is low compared to what I ate when I was healthy, and I never weighed more than 115. It was great before I was sick because I could eat a lot and be in great shape lol. Thanks again for the concern and posts. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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posted
And I have been refeeding for awhile now. And my best friend had anorexia and I can tell you, 3000 calories is low for what the refeeding process with anorexia takes too.
My friend started off at 1500 cals a day when she was in the hospital and then by the end of her stay was on 4500 calories a day just to maintain weight. Recovery from malnutrition whatever the cause requires an ENORMOUS amount of calories and nutrition. There have been numerous studies on this . Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Carol in PA
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posted
Do you perhaps have a tapeworm?
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
No carol, I was checked recently. People used to joke that I had a tapeworm growing up though lol. I just burn energy at a rapid rate, always have. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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posted
Google "refeeding syndrome" and you will see why I thought people with anorexia and other reasons for starvation need to start eating very, very slowly. Going too fast and eating too much at the start can kill a person.
posted
Oh Pug I know all about refeeding syndrome. As I said, my best friend was anorexic. I know that i do not have refeeding syndrome because I have been slowly increasing by several hundred calories for the past few weeks and I get blood drawn every 5 days. Refeeding syndrome would ABSOLUTELY show up on a cbc/chem panel.
My metabolism is indeed supercharged. Always has been. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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posted
You should really get a stool test for intestinal parasites. That could be a reason for your nausea. A good lab is Genova Diagnostics.
I've been nauseous for days and when I thought about it, I realized that I had not been taking probiotics for a few days. I went off antibiotics a couple of weeks ago and have been feeling like maybe it was okay to not take the probiotics but I also forgot. I took a bunch this morning and the nausea is gone. Didn't take long.
Maybe you can just see how you react to probiotics and whether that gets rid of the nausea.
Posts: 705 | From WA state | Registered: Jul 2011
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posted
Hi lymenotlite. I take tons of probiotics everyday because I had a severe case of c diff earlier in the year. My nausea and intestinal issues are related to gastroparesis, not a lack of probiotics.
I am however thinking of being tested for intestinal parasites again soon. Thanks so much, Jess.
Posts: 651 | From ct | Registered: Sep 2011
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posted
I think the bottom line seems to be that your gastroparesis must be much harder to handle with such a high caloric requirement. My greatest hope for you after all these posts is that you have medical providers you can trust.
Since this is a Lyme site, I am curious whether you or your MD feel that the gastroparesis is caused by Lyme.
Sorry not to be more helpful. Gastrocrom is the only remaining suggestion I might have to add, I guess...
Posts: 108 | From US | Registered: Apr 2012
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posted
Hi pug. My drs absolutely believe my gastroparesis is caused by Lyme. My lyme has really invaded my nervous system, including my autonomic nervous system. My gastroparesis has been described by my dr as a "bell's palsy of the gut" due to chronic lyme. I appreciate very much yr willingness to help. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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posted
Unfortunately, antibiotics are needed for the infection, but most of our GI problems were from the meds, not the Lyme. Though I have neuro Lyme that is "intractable," and can now eat only a few foods, still, my GI improvement happened only when I got off meds.
That of course may not be true for others, so I am only sharing my own experience.
As I said, the other thing that has helped me is Tai Chi.
If I knew you, I would be very worried about you. In fact, I am worried about you even though I don't know you. This is my last post but I send my thoughts and wished for your health.
Posts: 108 | From US | Registered: Apr 2012
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posted
Pug, thanks for the concern again. It is appreciated. Yes, everyone that cares about me is pretty worried. I am worried too, but I have to try to keep the faith that somehow things will improve soon. All the best to you, Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Hey, let us know if you try Seacure.
Two things I've used for gastritis are: D-limonene PepZin GI
Both have excellent reviews, as per iHerb.com. You may find better prices at Amazon.com, but they are not expensive.
I thought d-limonene was the "cat's pajama's" until I tried the PepZin GI. Hah, the PepZin worked better for me when I had delayed gastric emptying. Both work well for reflux.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Jess, I don't have any answers but I'm praying that you find one and soon. Always thinking about you.
Posts: 581 | From CT | Registered: May 2008
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posted
Julie, thank you so much. You have been really wonderful to me. I will PM you and know that I am always thinking of you too. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I take Zinc carnosine too, but it hasn't done anything to improve reflux or gastric emptying. It is in my Acid Soothe digestive enzyme product, along with other herbs that help heal the stomach lining, and also contains digestive enzymes.
-------------------- -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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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
There is a better product than Ensure out there called Orgain. It has all the good stuff and none of the nasty chemicals in Ensure.
It also contains trace minerals, I think.
And it's organic/
quote:Originally posted by chastain: Hi pug. Oh man I wish I could eat 1200. I am just BARELY maintaining 80 pounds at 5 feet 3 eating 3000 a day. I think it I ate 1200 a day I'd die in a month. I had a lot of help from Zofran but it gave me cardiac issues so I cannot take it, sadly.
I do not eat gluten, and I have tried elimination diets. Anything I eat makes me feel sick, whether its veggies or a cheeseburger. Pretty much the only thing I can consume that doesn't make me feel awful is Ensure.
I think the meditation before eating as a good idea. I am honestly afraid of food now. I am truly afraid to eat, and its such a depressing state to be in. Thanks so much for the thoughtful response. Jess.
posted
Mojo, thanks so much for the suggestion. I tried Orgain and it didn't sit well with me for whatever reason. Also, the Ensure Plus has more calories than the Orgain and that is a huge consideration for me. Thank you though. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
Wondering what meds you are on, also?
Doxy caused most of the symptoms you are describing and once I changed ABX and healed my gut (took many months) I was able to gain my weight back.
It sounds like you've had a lifelong issue with a very high metabolism - which some think is a blessing .... but I know what it's like to feel like you are shrinking away.
Also, benzos really helped me with my nausea and herxes. Someone mentioned Ativan. I used that and Xanax and then I could eat some.
I also read some suggestions about parasites - which you more than likely have (because most people do and I think all of us do). It may or may not be contributing to your weight but unfortunatley difficult to test for.........
I hope you sort this out - I think the Orgain may be helpful. I didn't know about this product (found it for my husband when for his cancer) and Ensure would really make my stomach hurt.
One thing I found I could eat was full fat yogurt with almonds mixed in. I used organic plain and it was very good.
Posts: 1761 | From USA | Registered: May 2006
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posted
Mojo, thanks for the post. I am not an antibiotics at the moment, but I am to begin Bicillin shots next week. I take Valium once a day for severe vertigo. I think it helps me keep some food down yes, but it doesnt take away the pain or severe nausea, sadly.
I have always had a very high metabolism, yes. It was a total blessing until I became really ill in the past few years. Now I watch myself fade away a little more day after day and it is like I am in a horror film.
I appreciate the suggestions. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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posted
I know this is an old thread, but have you been checked for Adrenal Insufficiency? You seem to have some symptoms of it and proper support may help you tremendously.
Symptoms of Addison's Disease: fatigue darkening of the skin loss of appetite gradual weight loss nausea salt cravings low blood pressure which leads to light headedness
Posts: 922 | From Philadelphia | Registered: Sep 2012
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I agree with her doctor that lyme has affected her nervous system, which controls the digestive tract. No other reason is even needed for this. However, I do think it is possible for oral abx, thru the effect they have on gut flora, to also create some problems. C dif being one of them.
Posts: 2888 | From USA | Registered: Mar 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i didnt know vistaril helpede nausea
i tried to read most of this-it sounds very serious and somehting i dont know much about
you probably have ruled out gall bladder since you hava a gi doc
but my only sx for a bad gallbladder was severe nausea
i had the surgery and it went away-just thought i should mention it if you overlooked it
good luck.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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