posted
Hi everyone. I just got off the phone with my LLMD a little while ago. He calls me three times a week (at no charge to me) to check in and see how I am doing with things, which is really great and a sign of his dedication I think.
We were talking about my condition today and he asked me if my appetite had returned even slightly all this time on the TPN and I told him not even slightly and that I could go all day without eating because I am always queasy and just never desire food.
He then told me that its pretty clear now that I will never have an appetite for food again and that the best we can hope for is to arrest the nausea. That is such upsetting news to me, although I knew that this was a possible eventuality.
Does anyone here live with no appetite permanently? If so, how do you cope with that? I honestly feel like I am not fully human or something because my body does not do the thing that all humans must do to stay alive-feel hunger and desire for food.
I am just so tired of this crap. There is just no end in sight and I cannot live this half life forever. I want health but health won't find me. UGH. Jess.
Posts: 870 | From ct | Registered: Nov 2012
| IP: Logged |
posted
There is still hope because babesia can cause this and so can depression. I had NO appetite 20 yrs ago and lost 11 lbs in 7 days. Once I got on an anti-depressant (NOT an SSRI) I was able to eat again.
Lost my appetite again when going thru babesia treatment. My appetitie returned when the infection was arrested.
There is HOPE!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
Thanks everyone. Its hard to feel hopeful sitting here trying not to puke but I will try to keep thinking I might feel a bit better soon. I HATE THIS DAMN DISEASE. Jess.
Posts: 870 | From ct | Registered: Nov 2012
| IP: Logged |
posted
Don't believe your doctor. I'm sorry, but that's a useless assesment in his part. It would be better if he said "I don't know how to get your appetite back, but we can still try".
Don't let a doctor dampen your spirits because if their limitations.
Posts: 131 | From Neptune, NJ | Registered: Oct 2012
| IP: Logged |
posted
Thank you so much hmm..I needed to read that today. I so appreciate it. Jess.
Posts: 870 | From ct | Registered: Nov 2012
| IP: Logged |
beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
I have had no appetite for months. I basically forced myself to eat. I weigh less than I ever weighed. I throw up every morning
I finally got a PICC as my stomach was trashed. Today for the first time in months I was able to eat breakfast. Around 1 pm I had a weird sensation in my stomach. It took me a few minutes to realize....it was hunger ! I actually wanted to eat lunch!
My gastroparesis is going away and now I wonder why I didn't get a PICC sooner!
No doctor can predict what will happen....keep treating babs.
Posts: 1276 | From maryland | Registered: Jan 2009
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
I'm really puzzled as to why anyone would say that let alone a doctor...There is no way he or anyone else can predict what will happen. Tha'ts great that he is so dedicated in calling, but it's also important to have doctor who will help you to think positively as well.
Posts: 1748 | From United States | Registered: Dec 2011
| IP: Logged |
posted
Thanks Ellen..I like my dr a lot but he is kind of dour at times. He is not optimistic about my case, nor is he really pessimistic...although he does say I am the sickest patient that hes had and that my case puzzles him because I do not respond to treatment like most. Jess.
Posts: 870 | From ct | Registered: Nov 2012
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I don't know anything about your case but I wouldn't take that advice to be the end all & be all... Just my opinion.
How can anyone predict that?
There are many approaches to deal with this illness - Maybe you need to try something different?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Jessica, Sorry your doctor said that - I find it a very strange statement. Of course your appetite will come back when you are healed from these infections and not taking all those drugs!
I agree with sparkle....might be worth exploring other options if you are not making progress and your doctor is stumped. We did abx for 2 years and made some progress but then switched to herbs along with doctors who muscle test and use EDS screening and that is when we healed from lyme/coinfections.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
| IP: Logged |
posted
Thanks Razzle..I just don't think recovery is in the cards for me. I will keep going and not give up and try to treat, but in my heart of hearts I do not think I can beat this.
I will never be healthy or normal again..that ship has sailed. I think the best that I can hope for is a reduction in symptoms. But true health? Too much time has passed and too much damage has been done, I think.
I feel so sad today. Sorry to be a downer. I appreciate your support SO MUCH, Razzle. You are a godsend. jess.
Posts: 870 | From ct | Registered: Nov 2012
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Have you tried cannibas? Does this help your appetite? Maybe cheer you up, too?
Do NOT give up! You can't. We won't let you.
-------------------- 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
| IP: Logged |
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
There are so many different protocols - I am trying salt/C and rife for a parasite I have been battling for 2 years that many cannot get rid of. I think it is helping.
There are so many options out there you haven't tried - rife, salt/C, numerous successful herbal protocols - many have healed even when very very sick. If you read about these, you might cheer yourself up a bit. That always helps me....to know there is hope!
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
You have not even started abx yet, right? So if that is the case how can you say you can't recover. Perhaps staying on the TPN to a healthy weight, and starting abx will make a huge difference as well as surrounding yourself with those that are optimistic about your recovery.
I know you posted about stopping the TPN, but in all honesty if you really want to get well why not give yourself a fighting chance to do so? I know it's hard we have all had to put things on hold, cancel some plans, dreams along the way while we try to get better and it's not easy.
When I was just 18 I was diagnosed with cancer and had to decline admission to a college i got accepted to that I desperately wanted to go to as it would have meant living away from home.
Having to have surgery and then undergo chemo meant I needed to remain at home. At 18 that was a tough pill to swallow. I watched all my friends go off to school and pursue their dreams and I was stuck at home enduring chemo treatments. I also lost all my hair, which is tough at any age but for an 18 yr old girl it was very difficult. Talk about feeling unattractive.
I made it through that awful time and eventually was able to transfer to a school away from home. I do feel all of that helped shape who I am today. As much as my lyme battle gets me down, and trust me it does, I try to think back on everything I went through at such a young age and know I will get through this as well.
Posts: 1748 | From United States | Registered: Dec 2011
| IP: Logged |
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Of course when you get better your appetite will return.
Sorry, but I don't think highly of your doc to make such a statement. That's a really stupid thing to say. I would just dismiss his comment entirely.
I was incredibly ill last year, lost 15lbs, etc. and thought I was not going to make it, seriously. Treating parasites has changed my life. I know I've been posting to you about this and sent a recent PM. I hope you give it some serious consideration. Read the posts of people who have been treating and see what their experiences are. I think it can be your game-changer.
Best to you.
Posts: 2238 | From East Coast | Registered: Jul 2010
| IP: Logged |
posted
Jessica, Your post gives me hope, because it means I'm not alone.
I get head hunger and what I call "social hunger" but I take only a bite or two before the nausea gets me. I love the talking and sharing, and I really enjoy cooking for my family when I'm able, but with my tongue's taste buds diminished from the thrush, I usually can't eat much, if anything.
Hang in there. I'm realizing that there are a large number of us who will go through life with some ways we have to deal with junk, crap, and what some might term "abnormalities."
Do I want any of this? No! I'm working on getting better, but life may not go back to what it was at one time. My great doc tells me at the end of each visit, "Hang in there. We're making progress. You've had Lyme and these parasites for a long time. I have hope." May be corny, but he listens, changes treatment, and gets further advice from other LLMDs.
Rant, cry, and rage. Life isn't fair by any means, but it can be filled with moments and times of joy, friends, family, laughter, and more. Grab onto those blessed moments when they come.
You're right. This disease/syndrome sucks. It's evil and vile. I hate it and what it covertly does. Unfortunately, it is part of my and your journeys.
Hugs.
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
jessica, when i first got lyme i had the exact same thing. no appetite at all. i would go three to four days without eating.
the doctor told me next step is the hospital to force you to eat. i'd have half a bagel in three days.
i lost probably 50 pounds and was down to 108 and still dropping. and for my age at that time, that was alot.
then i was told lyme and started treatment. i still had no appetite but it improved slowly. must have taken 5 years or more.
then it turned completely around and i started gaining. i wasn't eating but i was gaining. i went from 108 to 190, of course, not overnight.
bottom line is, i wouldn't seriously put too much credence in this appetite thing. you will get it back.
i had to force myself to eat. treatment will help.
hang in there. it will get better.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
posted
I just wanna thank everyone SO MUCH for the responses. I have had an interesting day. I have been super sick but I bought myself a new computer and I met my boyfriend's mom and that was nice.
I just am really so sick and I am weary of the fight to get well. I do not think I will improve but the fact that I do not give up despite feeling so ill must mean that I have a teeny tiny part of myself that hopes I can still get better.
I just want to feel relief, even a modicum of it. I have a man in my life now that makes me see a future I never thought I wanted-marriage and all that stuff...but I need to be healthy for that and I dont know if I can get healthy and AARRGGGGG....
I appreciate the support on here SO SO MUCH. I also appreciate you all letting me post and vent so much. I don't mean to be annoying, I am just scared and sick and at least people on here LIVE this so I feel understood. Thanks again. Jess.
Posts: 870 | From ct | Registered: Nov 2012
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
hey jess, alot of it will be thinking YOU CAN DO IT....power of positive thinking and all that.
don't stress. just know there is a light at the end of the tunnel.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Your doctor does not sound like an ILADS trained LLMD or to be honest he does not sound like an LLMD at all.
An experienced lyme doctor would likely say that once you are treated appropriately your appetite will return. Nausea has a LOT to do with lack of appetite for most ppl.
My lack of appetite was related to babesia and I had it for years. Notice I said HAD.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
posted
Hi daynise-I have smoked since I have been sick, yes but it ultimately makes me feel worse...spacier and it messes with my blood pressure.
I used to smoke quite a lot of cannabis before I got sick and now I just don't want to at all. Thanks though. Jess.
Posts: 870 | From ct | Registered: Nov 2012
| IP: Logged |
posted
Terry-my dr is ILADS trained and a very well respected LLMD. The reason why he is pessimistic with my case is that he HAS been treating me properly but I am not responding as I should. So he feels helpless and hopeless, too. Jess.
Posts: 870 | From ct | Registered: Nov 2012
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
So sorry to hear that Jess. I have read several of your posts and can relate to the overall body pain and lack of appetite. I had pages of symptoms and thought I was going to die.
I had little hope of ever feeling better but I do feel so much better now and so can you. For me, detox was one of my big issues. Without dealing with it I would not have made progress. All the issues that they talk about here (methylation, HLA, parasites, heavy metals etc..) were issues for me and that on top of bart, babesia and lyme were making me deathly ill.
Leave no stone unturned. Keep looking for answers. Get testing for the various detox issues and deal with them if they are an issue for you.
Take it one step at a time. It will take time to get through the things that need to be looked at when progress is slow or non-existent.
FYI - after 6 months of IM ceftriaxone and tons of detox and other treatment, the horrific all over body pain that I had for almost a decade was down by 70%! Deep down I thought the horrible pain would be with me until I died but it isn't!!
I felt like I was in deep trouble and probably could not get well but I kept trying. If I can do it you can too. It is worth the money and effort.
PS I didn't turn a corner and really start feeling a lot better for over 3 years. Some of us take longer than others.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
posted
Terry-thank you so much. I really appreciate it. I think I will most assuredly feel a real spark of hope if I could just have a few of my symptoms diminish even slightly in intensity.
I just need relief somewhere, even if its very slight, so I can feel like I will not be stuck in this miserable cycle of horrible sickness for the rest of my life.
I can't even eat like a normal person. I can barely keep food down or walk at times. I need something to give a little.
Your post was really helpful, thank you. I am also so glad that you are feeling better. Jess.
Posts: 870 | From ct | Registered: Nov 2012
| IP: Logged |
posted
I understand. I'm sorry cannabis has that affect on you. I really hope you can find something that gives you some relief.
Posts: 428 | From Midwest | Registered: Dec 2012
| IP: Logged |
posted
Thank you daynise. I hope so too. Jess.
Posts: 870 | From ct | Registered: Nov 2012
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I believe there is an answer for everyone. Even you. And me.
Even though treatment hasn't made one inch of progress for me (just some mild symptom improvements while on treatment that comes roaring back when I stop).
I still believe there is hope for me, for you and for everyone else with Lyme or other chronic issues.
So please don't give up on you - we haven't given up on you!!!
-------------------- -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
| IP: Logged |
posted
Razzle-once again, I just cannot thank you enough for the kind words and the support.
I am so sorry that you are in a similar boat as me with this illness. I wish nothing but a speedy healing to you, and I thank you again for always taking the time to help me out. You are awesome. Jess.
Posts: 870 | From ct | Registered: Nov 2012
| IP: Logged |
posted
It is very hard to hear negative statements from docs. After my first lyme treatment of IV meds my doc of several years told me that since that didn't help there was no hope for me to recover. She said I'd only get worse and I might as well start the disability process.
Now, this is NOT what I needed to hear only 3 months or so into this fight. I became sad and felt like giving up. My neurological issues were very frightening and 3 docs told me I would be in a wheelchair and within a year or two.
I was scared to death, and most of the "specialists" I'd see were of no help at all.
I had leg braces to try and avoid the chair, and went to PT, and etc. Everything I could think of that I could do.
I talked with someone who had similar issues to myself and found a new doc to try. After a year or so I began to improve and no longer used my braces or my scooter/walker. I wasn't running any marathons, but I was walking and it felt great to see improvement.
Anything is possible with this stuff. Don't let anyone dampen your spirits or make you feel like it's a lost cause. It isn't.
I only gain weight when I'm sick, so I can't say I have your issues, but this stuff affects us all differently, and when the SAME old symptoms just keep coming back it is very difficult to keep pressing on, but if we don't fight, who will?
Your future sounds bright, you have support and a loving relationship. If you need to switch docs then do that, but don't give up. I'd hate to see you do that. You have lots to fight for! For me it was my kids and my relationship with my dh that kept me at it. I just couldn't give up the hope that I could have at least somewhat a "normal" life with those I love.
You can do it, I wish you all the best.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
| IP: Logged |
posted
What an irresponsible statement for an MD to make. I had a lack of appetite and mid nausea for a long time.
I know one of the side-effects of the Lyme was HPA axis dysfunction. I truly think my appetite issues were related to poor pituitary function....I would have a bout of hunger that minutes later would be replaced by lack of appetite with mild nausea.
Low cortisol also causes poor appetite and nausea....have you had a saliva cortisol recently?
I can still have poor "messaging" regarding my appetite. I will eat dinner with my husband while I have no appetite for dinner, eat anyway because I certainly need to, and be flummoxed at the amount of food I can eat, and still not have that full sensation at the end.
Posts: 478 | From Third Coast | Registered: Feb 2011
| IP: Logged |
posted
Thanks everyone again so much for all of the supportive comments. It means more than I can say. Jess.
Posts: 870 | From ct | Registered: Nov 2012
| IP: Logged |
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Jess, I agree with others. The statement your doctor made was irresponsible and inappropriate and incorrect, ILADS-trained or not.
I know you think highly of him, but IMO you might want to consider at least a consult with someone else.
Somewhere you also mentioned that your docs are pessimistic regarding your situation. You also said something along the lines of your PCP referring to you as a "brave girl" which I find pretty appalling in itself. Hearing that phrase alone would make me run for the hills.
You do not need pessimistic doctors at all in your life, much less when you are very sick. You see here in this thread alone, so many have been extremely ill and are here to tell you about it. There are many, many more as well. I guarantee you that.
Your doctors are supposed to be behind you, supporting you and trying option D when A, B and C aren't working. And going to Z and back again if need be. That's the sign of an excellent LLMD.
Telling you they're pessimistic about your recovery, telling you you'll never get your appetite back, calling you a "brave girl" are not exactly hallmarks of excellent physicians, by anyone's standards.
Posts: 1885 | From here | Registered: Jul 2012
| IP: Logged |
posted
Beaches-I want to thank you so very much for your support on here and also in your many PMs to me. I think you may have a valid point about my drs too. I do believe that they care, but I cannot deny that their pessimism definitely affects me a lot and makes it that much harder to keep a positive attitude.
Thanks again for the advice and the endless support. Jess.
Posts: 870 | From ct | Registered: Nov 2012
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i had one doctor tell me "well why should i treat you if you're going to die anyway" all because i wouldn't take statins!!!
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Jeez, that's terrible, Randibear! Doctors shouldn't say crud like that...it is so insensitive!
-------------------- -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
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Jess, I am shocked that a doctor would say this because it is impossible to know. There are many reasons to have no appetite and having Babesiosis is definitely one of them.
Have you ever considered getting another opinion? It is not about liking a doctor, it is about finding the one who is the best to help your case.
Please do not let this get you down. There is no way anyone can "know" this! My bet is that as you are treating these diseases, things will get better including your appetite.
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
posted
Thanks again everyone. Today has been a kind of rough day health wise and it is good to see such encouraging posts. I really am in a position now where I NEED to get better. I have a man I adore and I want to spend a long and healthy and happy time with him, and I need to be better to do that.
Also I have a career as an editor I love and that is also suffering right now because I cannot take on all the jobs I would if I were healthy.
Thank you all again so much for the support. It does help to see so many people think I might pull through. Jess.
Posts: 870 | From ct | Registered: Nov 2012
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Just tryin' to cheer you on, LOL!
-------------------- -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
| IP: Logged |
posted
Just thinking of you Jess. Having a tough time myself. Keep fightin'.
Posts: 581 | From CT | Registered: May 2008
| IP: Logged |
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My son had nausea and pain 24/7 for months. It was his third month of IV Rocephin that ended the nausea. He took alot of prescription nausea meds until he got relief. He had 3 different scripts depending on the severity of the nausea. Getting rid of the high bacteria load changed everything for him.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/