posted
For less than a year I have been dealing with such altered taste and smell and loss of appetite that I am not able to eat enough.
I have lost 66 lbs and I am worried that my weight loss is going to make my recovery extremely hard.
I can't force myself to eat more than my stomach can handle because then my gut problems kick in. I have bloating and sever stomach pain.
What have many of you done to help you kick your appetite into gear?
I have tried smoothies and soups and bread but they are all just causing bloating problems.
Since I have such brain fog, I don't understand the supplements that could help me.
I am hoping my LLMD will work with me on the supplements I need to start taking.
I am just so scared and frustrated with the HERX I have been fighting for over a week. I thought there was a relief feeling at some point but I haven't felt it.
Posts: 27 | From Jacksonville, Florida, USA | Registered: Nov 2012
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posted
Hi-I am going through similar misery. I really wish I had answers for you, but I am still looking for the holy grail of relief myself. Are you underweight at the moment? Can you look into IV nutrition, such as TPN? I am on TPN right now and it is the ONLY thing that has worked to arrest my weight loss. Good luck to you. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Digestive Enzymes are very important to take when you eat. I like Super Digestaway by Soloray.
Also check into treating parasites/worms because they are often an overlooked co-infection of Lyme Google parasite symptoms and check the symptom list and info at Humaworm.
One mos tx is never enough and has to be ongoing until symptom free and then maintenance.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
jessicabooklover, thanks for the response. I am 5'8" and weigh 112 lbs. I have seen many doctors and none of them have showed any concern in my weight loss.
They are too busy thinking all of my symptoms are in my head. You need to eat something, they say. Is that your diagnosis doc?
I don't know who to talk to about IV nutrition or what TPN is. Maybe when I meet with my LLMD she will be concerned about my weight.
Posts: 27 | From Jacksonville, Florida, USA | Registered: Nov 2012
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posted
Hi hanna, of course no problem. Yes you are significantly underweight. I am 5 feet 3 and I am 82.5 lbs....we both are quite underweight...Well, I can certainly relate to drs not believing you. I was put in a clinic for people with eating disorders back in the spring for 2 weeks because a dr I was seeing thought that I was anorexic-UGHHHH...the ignorance is insanity....
TPN is total parental nutrition...it is being fed through a picc line iv in yr arm. You can still eat food on TPN but it helps you to get necessary nutrients and to stave off further weight loss.
How much do you eat now on any given day? Jess.
Posts: 870 | From ct | Registered: Nov 2012
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posted
Jess, my doctor also suggested a eating disorder clinic but she said she didn't want me to do that until after I am treated for Lyme.
I eat maybe 500 calories a day. I try to eat more but nothing smells or taste edible.
Posts: 27 | From Jacksonville, Florida, USA | Registered: Nov 2012
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posted
Hanna-I am so sorry you are going through the eating disorder BS too...my best friend actually WAS anorexic when we were teens, and she was so angry when drs would suggest that I was. I have never had issues with food or my weight until I have gotten too sick to eat since getting this illness.
If you can only eat 500 a day, you simply NEED to talk to yr dr about TPN. There is NO WAY to sustain that little amount of nutrition. I was down to that at one point and now I am on an IV because of it. It isnt yr fault that you can't eat, nor is it mine. But you must get nutrients in somehow, so I think IV nutrition may be the way to go.
My heart goes out to you. It is the scariest thing in the world to watch yourself waste away. Jess.
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Jess is right - 500 cal/day is not enough. I speak from experience too. Yes, I've also been accused of having an eating disorder when I did not have one and actually was unable to eat sufficient food because of slow stomach emptying. And what I did eat did not get absorbed because of inflammation in my gut.
There may be other things to try before or in addition to trying IV nutrition, too.
If you have pancreatic insufficiency, the digestive enzymes will help a lot.
If you have Gastroparesis (slow stomach emptying), there are herbs or medications that can help with that also.
If you have an insufficiency of stomach acid, then supplements containing HCl along with digestive enzymes can help with that too.
Homeopathic medicine can also do wonders on some gut problems. My long-standing chronic constipation disappeared after a few weeks of one specific homeopathic remedy. I haven't needed to take the remedy again for that issue.
And acupuncture can help with gastric distress also (I used acupuncture a lot for stomach issues before I knew I had Lyme or Gastroparesis).
However, if your gastric distress is from Lyme/coinfections or Candida or Parasites, then killing the bugs is the only long-term permanent solution. So while the above things may help immediately, they won't "cure" the issue for good until the infections are gone.
-------------------- -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: 4167 | From WA | Registered: Feb 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- While lyme or other infection can be the root of this, it's important to consider all the possible causes.
Lost sense smell can be from sinus issues.
You might see an ENT who can take a look with a scope.
Cranial-sacral therapy may help, too. But no quick turns or twists of the neck or spine - EVER - with lyme. This method is safe and has some good results. Just see the find a practitioner link at the site for
UPLEDGER TECHNIQUE -
Posts: 48021 | From Tree House | Registered: Jul 2007
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
I had this issur years ago when I developed depression . I had zero desire to eat and everything tasted awful or weird . Clinical depression can cause these symptoms as they are related to brain chemistry .
My appetite returned when treating the depression . Incidentally , it was genetic and I actually has no external reason to be depressed . Took me a while to see it was depression as I was not in a crisis or having a bad life at the time. The meds I eventually took improved my mood and my appetite .
Your problems may not be depression related , but mine definitely were .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
I had this issur years ago when I developed depression . I had zero desire to eat and everything tasted awful or weird . Clinical depression can cause these symptoms as they are related to brain chemistry .
My appetite returned when treating the depression . Incidentally , it was genetic and I actually has no external reason to be depressed . Took me a while to see it was depression as I was not in a crisis or having a bad life at the time. The meds I eventually took improved my mood and my appetite .
Your problems may not be depression related , but mine definitely were .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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quote:Originally posted by annxyzz: I had this issur years ago when I developed depression . I had zero desire to eat and everything tasted awful or weird . Clinical depression can cause these symptoms as they are related to brain chemistry .
--
Your problems may not be depression related , but mine definitely were .
- Same thing happened to me many years ago.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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