Hoosiers51
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posted
I got this symptom a few years ago. I had been sick for a few years already, but then once I finally got the positive babesia FISH, and was put on Mepron with Zithromax, I got this symptom, and it was VERY disturbing to me, because I would be so hungry, but cry because food looked so unappealing that I couldn't eat it.
I only took Mepron for 3 months the first time (what little I knew then).
Then, I took Mepron again for 5 months recently, and stopped it in November, because I was just getting worse....seems like it's the wrong drug for me.
Since then, I have been pulsing artemsinin randomly, and I know I must still have some babs in me because sometimes it gives me night sweats.
But I just need to get to the bottom of this symptom, because it's driving me insane. I feel on the verge of throwing up all day. It feels like food will make it better, specifically the foods that I crave to make it better are usually some kind of mix of dairy fat (like cheese) with some kind of carbs (like noodles or crackers).
But almost any other food makes me feel like I could throw up.
I have even had this where I could hardly eat anything.
I have to go, I'll come back and edit this more later. Just seeing if anyone else with babesia has this symptom, and also, I'm not ruling out that it's due to the mystery bug since that has now been found to be a protozoa. (and I have mystery bug too)
Thanks!!!!!
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I had horrible GI symptoms. I couldn't really eat any solid food, lived on smoothies.
Mine got a lot better with bartonella and parasite treatment.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Hoosiers51
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posted
Thanks, Six.
I don't really have any GI problems though per se....I "seem" to tolerate most foods, I seem to have normal bowel movements.
It's just a "loss of apetite" or that food seems unappealing, but it's not that I can't tolerate it.
And I FEEL like I might throw up......and things like smelling the refrigerator makes me want to barf.
Almost like a pregnant woman I guess, though I'm definitely not pregnant.
There was another thread from a couple months ago where people were discussing this symptom, I will look for it.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
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posted
Just to try to re-describe (because I feel like I'm not clear and am too tired to be concise or edit) (my fault...sorry I am so inconcise).......
Food grosses me out, and I have no interest in eating most things. It can be described as "anorexia" but not "anorexia nervosa," which is a psychological disorder. Just plain anorexia has physiological origins.
Chewing, swallowing, eating....looking at food, preparing it, being in the kitchen, it's all "icky" to me.
I don't have any complaints once I actually get the food in my stomach, it's just getting it there that's the hard part right now since I don't want to eat anything but mac n cheese. (and even that, I "barely" want it)
So I "can" eat solid food (as in, I can digest it), I just don't "want" solid food.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I had that along with the GI problems .... I neither wanted it, nor felt good after I ate it. I was okay with the liquid stuff and just figured out how to have enough calories that way - ie latte with whole milk = 240 cal. Frozen raspberries with fresh whipped cream was another one I could stomach. I looked for calorie dense food/drink since I didn't want to eat often.
The email address I have for you doesn't work .... I'll be in B'ton this weekend.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Hoos - I had this in college way back when (like the early 90's) I didn't even know what Lyme was - I didn't get diagnosed until 2004
but I know the symptom your talking about - it went away for me eventually but I wasn't treated or anything until much later
Sorry I can't help with treatment suggestions but I remember that feeling of just being so grossed out by the concept of "food" - sorry you have to deal with this
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Hoosier,
I agree with six about parasites. The bart and bb and parasites and other infections are sitting in the small intestine.
Loss of appetite is one of the symptoms. Sometimes these parasites can just "hang out" and you don't think it's a big problem. Check
go the symptoms list. The other thing I did when I didn't have an appetite, was to just sit and try to visualize something that I liked until it stimulated my appetite.
Hope you feel better
, 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
I have had a very similar thing since starting treatment for babesia. I don't have any GI problems whatsoever, but I just felt completely turned off food and grossed out by the thought of eating. It was exactly like morning sickness! Except it lasted all day...
I noticed that it started about 2 1/2 weeks in and then lasted for a week. I stopped Mepron/Flagyl for a week. I restarted both, and like clockwork, 2 1/2 weeks later I got that same awful icky anti-food feeling. Again, it lifted after about a week. At first, I thought it might be a reaction to the meds, but now I'm wondering if maybe it's part of a babs herx?
I actually posted here a while back because, when it started out, I couldn't eat veggies at all. All I wanted to eat was sick person food (toast, scrambled eggs, bananas). Then pretty much everything was off limits, except for Ben and Jerry's Phish Food ice cream.
Hope it goes away for you soon!
Posts: 67 | From SF Bay Area | Registered: Jun 2008
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Hoosiers51
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posted
JulieF,
Weird, isn't it? Yes, it's like how you describe it.
And it REALLY seems to be correlated to babesia for me, because I got it very noticably on Mepron for awhile.
Then, I didn't get it my second time on Mepron, but I didn't really herx or make much improvement. But then when I stopped Mepron for the second time, I got night sweats, and then a little bit after that, I got this symptom yet again.
But now I have just gotten it out of the blue, although I have been pulsing artemisinin, as I mentioned, and I'm starting to get worried about my lack of babesia treatment, because on a recent full moon, I had bad night sweats.
So I think that maybe babesia is becoming an issue for me again, and the onslaught of this symptom scares the heck out of me.
I guess to me there is almost no doubt it is babesia related, because of how obvious of a symptom it is, and because it came on strongly for me only after starting Mepron (and I wouldn't be surprised if it was 2 1/2 weeks in as you describe, but since this was years ago I have no way of knowing).
And Julie, it is just like you describe it. I only want to eat sick person food, like mac n cheese, and it is exactly how I would imagine the pregnancy thing being (when people describe pregnancy nausea it sounds a lot like me).
Like, there will be one or two things that I think maybe I can eat, but there is no rhyme or reason to it really. It doesn't sound like the very specific needs of people who have intestinal parasites. It is just, "give me mac and cheese or I won't eat it."
I can only eat just snacky types of food like cheese and crackers, toast, popcorn, etc. Or even something greasy like a burger or quesadillas I could handle, but it has to be at the right moment, and be exactly what I'm craving, or I won't eat it.
But there were also times when it was much much worse....but right now I'm just in the "picky" phase.
And it is a 24 hour mild sort of feeling like maybe I could throw up if I smelled the wrong food.
I am grateful for the suggestions, but I am very sure it's due to babesia, or a babesia-like organism (i.e., something that responds to normal babesia treatment like Mepron/Zithromax or artemsisinin).
The worst part is just how much this symptom freaks me out!
This symptom scares the crap out of me, because I remember how sick I was when this would happen.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I'm not quite as turned off by food, but I too have no desire to eat since starting Mepron. I can be starving - even with a grumbling stomach and blood sugar so low I feel faint - and I'll still have to force myself to eat.
I notice that the harder I hit babesia (eg. adding artemesinin) the hungrier I get. Lately I've been hungry 1-2 hours after a decent meal, but still have no desire to eat.
Many times I've wished that I could just feel myself intravenously and cut out food entirely. I don't have any GI symptoms, just no appetite.
The silver lining for me is that I've lost a lot of weight since starting Mepron, and am now back to my pre-illness size.
I too wonder if this symptom is babesia or the mystery BLO (which also came up on my Fry test).
Posts: 408 | From California | Registered: Apr 2008
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posted
That was definitely a babesia thing for me too, Hoos. I was on Artemisinin and Enula for a month and a half, and definitely experienced that. I only seemed to want things that were mushy and hot though, so I didn't have to chew. Hot cereal, Overly cooked brown rice, sweet potatoes...
It was the worst when I was on 750 mg of artemisinin every day without the enula. Enula fights both babesia and parasites, so maybe that's why when I added it, it got a little better (along with some of my GI symptoms). I've heard that artemisinin can agitate parasites and in high enough doses can kill them, so maybe you're stirring them up by pulsing the art? I think that's what happened to me (even though I wasn't pulsing), so when I added the enula it actually started to kill them and I felt a little better. I couldn't tolerate the treatment long enough to see where it was going though.
Nothing seemed to help me much, but I did chew on slices of ginger here and there and that helped *sometimes*. Have you tried that? A slice of ginger underneath the tongue (teeny tiny) may be worth a try.
I hope it passes soon!
Posts: 710 | From West Coast | Registered: May 2008
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Hang in there!
Posts: 67 | From SF Bay Area | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Just wanted to say thanks to the people that responded.
I have been sliding backwards lately, and it has been a rough hit psychologically, so I really need all the encouragement and help I can get. So thank you for being understanding.
My fatigue has been so bad that it's been hard for me to even stay on track with my pills and supplements.
I think it's good to keep others posted when I'm not doing well, so if something seems "off" with me in my posts, others will know why and not think I'm being rude to them, etc.
Thanks to everyone!!!!!
Posts: 4590 | From Midwest | Registered: Jun 2008
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Sammi
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posted
Hi Hoosiers51. I have this symptom whenever I am treating Babesiosis. I think it is one of the symptoms of the disease.
In my case though, I have very little or no appetite at all, and I am repulsed by food.
When I was grocery shopping recently, I saw a picture of grits on a box and I truly felt like I was going to throw up! I had to look away quickly and distract my brain.
For me this passes when the Babesiosis is under control. I hope it passes for you soon.
Posts: 4681 | Registered: Oct 2000
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Hoosiers51
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posted
Yes, Sammi, you described it well.
Sometimes for me I have it where ALL food is repulsive, and other times (like lately) it gets a little better to where some food looks good to me, but other food doesn't (that is, some food is still repulsive and makes me want to puke by looking at it).
Usually the foods that look good to me are the "unhealthy" ones, like cheesy things. Things like vegetables are what normally look the most repulsive, but it can vary greatly.
Julie F. mentioned the Ben and Jerry's thing.....I also had a similar circumstance with my first round of babs treatment, where I would eat ice cream at the dinner table, as my family would be eating their steaks or tacos or whatever, because it was the only thing I felt like I could eat.
But I have also had the feeling like, "oh man, I can't eat anything right now." And yes, sometimes I would actually feel like I was going to vomit just looking at a food or smelling food, as you describe.
Which species of babesia do you have, Sammi? (babesia microti, babesia duncani, etc....)
Just curious if there is a "trend" with that, because I do know that there are subtle differences between the two.
Right now it's believed that I have babesia duncani, because I had a positive titer for it, though I have heard even the titers can cross-react, so it's hard to be completely sure. I was not bit on the West Coast, however.
(Note: I am also not ruling out that this symptom is due to the "mystery bug" since it is said to respond to the same drugs that babesia responds to. I suppose there is no way of knowing definitively. However, anorexia is listed by the CDC as a babesia symptom, so I tend to believe this is babesia if I had to guess)
PS---on another note, I just got a new bottle of Artemisinin yesterday and took my first dose less than 24 hours ago. Today I have been sweating like crazy from my armpits, leaving huge wet stains on my shirt. It's weird....it's like this disease is really active right now for some reason.
Anyone else get the armpit or other body sweating during the DAY when you have this appetite issue?? (no night sweats this week to speak of)
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I often wondered about the cause of this. I thought maybe that maybe the appetite part of the brain was affected by infection.
But if you look up the side effects of Mepron, Plaquneil, and Doxy, nausea and loss of appetite are listed. I hope this helps .
I had my honey read this thread so he would stop trying to force feed me. Thank you so much for your help . xoxo
Posts: 261 | From Piedmont | Registered: May 2008
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Starfall1969
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posted
I was dx'd in college with irritable bowel, but I swear this is the kind of sx I was having even then--
I just couldn't bear the thought of food even though I was hungry, and eating most foods just kind of turned my stomach.
I'v had off and on periods of this sx since then, and definitely since being dx'd and starting the abx.
Lol, and yes it does feel like when I was pregnant.
I even get so bad that my mouth starts watering a LOT--that was always an indication that my morning sickness was at its peak.
I keep hoping it settles down, because I've already lost 35 pounds since my sx kicked in last summer.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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TerryK
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posted
I've had the "food is repulsive" thing. It lasted for a long time but then I wasn't in treatment because I didn't know what was wrong.
After I found out about lyme and co-infections I immediately thought of babesia. Your symptoms fit closely with what happened to me.
It started after I was treated with abx for a few months for pneumonia. I had a remission of some other troubling symptoms that I'd been having since the birth of my daughter but this different set of symptoms came roaring in on me for awhile, then disappeared on their own.
I had the daytime sweating on more than a few occassions. I remember because it was so unusual for me to sweat like that. It would just come pouring off of me with no warning. I also had overwhelming anxiety at times during this period.
All of these symptoms went away on their own and I had 5 years with almost no symptoms of anything before I presented with dysautonomia and it was down hill from there.
It took another 20+ years of illness before I found out it was lyme and co-infections. During that time I couldn't sweat or control my body temperature very well and that all changed again with treatment for babesia and I can sweat again and handle normal room temperatures now.
I know it's scary but you will get better because you know what it is and how to treat it. You WILL WIN this battle!!!
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Sammi
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posted
Hi Hoosiers51. Each time I have treated Babesiosis, I have the no appetite/food repulsion symptom. Like you, occasionally something sounds good. And when it does, I eat it whether it is healthy or not!
I have Microti, but I have never been tested for Ducani.
I have also had sweats during the day from Babesiosis, but this time around it is not as bad as before. Normally I hardly ever sweat, but during treatment sometimes I sweat profusely even without exertion.
Keep on keeping on! It will get better with treatment.
Posts: 4681 | Registered: Oct 2000
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TadichGrill
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posted
I could not eat at all when I had a bad bite. Later I assumed my "anorexia" was from Babesia once I was diagnosed because it can be a Babesia symptom. Maybe it actually is BLO. My sudden "anorexia" did begin the same week I presented with a bulls eye rash. It was severe and I have had "anorexia" twice before I was successfully diagnosed with Lyme disease. Each time I lost a lot of weight and felt very sickly. I do think vitamins and B vitamins do help.
I had to force myself to eat for months so I know what you are going through.
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