posted
Has anyone else experienced extreme weight loss and loss of appetite with Lyme and Co's?
Recently it has gotten worse for me and my gastro doc wants me to do a "Capsule Endoscopy" to look at my small intestine. I have already had Colonoscopy/Endoscopy, Small bowel series, Upper GI, Gastric Emptying Study, etc. I am gluten free as well.
I really do not have an appetite at all and when I do eat I feel sick for hours. I have a lot of nausea too. I am really worried about this weight loss. Could it be that I am on such a restrictive diet?
I would be open to the Capsule Endoscopy if there weren't the risk of "complications" as I do not need any more of those. My gastro said that there is a chance that the "capsule" could get stuck and I would need emergency surgery to remove it. I am so weak and sick already that I just feel that I cannot risk this.
Is weight loss common with Lyme and Co's?? I have tested positive for Babesia and am treating Lyme, Babs, and Bart together.
Thank you all....
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
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posted
My husband had real issues with weight loss (due to Babesia). I have a few things in my bag of tricks for you to try if you haven't already.
Lemon/olive oil drink:
1 whole lemon 1 Tablespoon olive oil
Blenderize whole lemon, olive oil and 1 cup of water. Pass the mixture through a strainer and drink up. This drink was created by Mark Konlee who was helping AIDS patients with wasting and neuropathy. http://www.keephopealive.org/lemondrk.html
8-12 oz rice, almond, oat or coconut milk 2 Tablespoons of Rice protein powder 3-6 grams L Glutamine 1 teaspoon carob poweder 1/2 or 1 whole banana or papaya 1/2 cup frozen berries 1-2 capsules quercetin 1/2 tsp raw honey
Mix the above in a blender.
Carob/bananas replace electrolytes L glutamine repairs the cells lining the digestive tract Berries help heal the digestive tract Rice protein and L Glutamine provide amino acids and proteins which are lost to malabsorption
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
Yes I have had it tested and it has been fine all along. I wish there were some easy fix for this as I have been worried there is something else going on in my abdomen/intestines.
:-(
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
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posted
Thanks Parisa! -I lost 40 pounds so far (went from healthy muscular 210 to anorexic bony 170 and still dropping)
Posts: 856 | From MA | Registered: Jul 2009
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posted
I've lost 5 pounds in the last 2 weeks and 10 to 15 pounds since september. I was at a good weight before that. I too deal with nausea and a decrease in appetite.
At this time I eat whatever I can whenever I can. I've tried ginger tea and ginger capsules that do help some. There is another post about nausea and zofran you should look up too.
This is a relapse for me after being treated awhile ago and being symptom free for years. The nausea did go away and I did gain back my weight to a healthier weight.
I also had nausea when I did the mepron. Lyme and company can cuase this and have in both my son and I.
I can also get nausea from hypoglycemia, so I have to still try to eat a few little meals a day.
Hang in there. Things can get better. Try some of the suggestions you find here.
What drugs and supplements are you on now? Could any of them be causing the nausea?
My husband is almost back to normal. He's regained all of the weight he lost, works a normal schedule and comes home with energy to do things after work. Treating Lyme isn't quick and we had to really go after the babesia to turn things around.
Posts: 984 | From San Diego | Registered: Nov 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Jenny,
I had continual nausea for at least the last 3 months before I was diagnosed with lyme disease. I basically had no appetite most of the time and lost weight.
Also, there were times when I would look at food, and that was it. Couldn't eat a bite. Just looking at the food was a complete turn off--made me feel sick.
I also went through colonoscopy, x-rays, etc. to try to find out why I had so much episodal abdominal pain. The tests found nothing.
I recommend you try good lyme treatment and assume your symptoms are lyme-related. I consider lyme and coinfections the most probable cause of these problems. They are common symptoms. I have also talked to lymies who tell me they get sick every time they eat.
I had lyme, babesiosis, and bartonella.
Posts: 9931 | From Maryland | Registered: Dec 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Weight gain or loss is a symptom of LD. I too have lost 24 pounds, now down to 104 pounds.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I lost 60 pounds total. I went from 140 pounds to 80 something pounds (I'm 5'6). It's my worst symptom, and it scares me too, so I can really empathize.
PM me if you want to talk. I've had the capsule endoscopy done, along with a colonoscopy, endoscopy and a barium xray.
Hang in there girl...I'm here if you want to chat with someone.
Posts: 710 | From West Coast | Registered: May 2008
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posted
I'm just the opposite. I have gained a ton of weight. I was overweight in the first place, but since my activity level has dropped tremendously but my appetite hasn't changed, I've loaded on the pounds. Which, of course, makes me feel even worse.
Posts: 212 | From Pennsylvania, USA | Registered: Jul 2009
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posted
I had rapid weight loss (not as much as you, LittleLyme!...maybe 30-35lbs, at the time?) that then turned around a year later into rapid weight gain.
Turns out I have Hashimotos. Viola! but I needed to be tested for Thyroid antibodies as my TSH has remained "within normal limits" the entire time.
The only appetite issues:
1) loss -- after initiating multiple oral abx;
2) ravenous! unexplained increase in appetite over the last month or so. I suspect it may be a hypothalamus issue -- something because of the LD.
Neuro signals are screwed up sending me the wrong messages. That my body is asking for food when it's not.....Sleep issues are involved as well.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I started at 128lbs.
My lowest was 94lbs last November.
I felt fine, but everyone else including LLMD was very concerned.
I was put on an appetite stimulant and taken off of my yeast free diet.
That helped.
I've managed to stay between 105 and 110lbs.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Thanks so much everyone. I have lost a total of about 30 lbs and 5 of them within the last month. I am 5'2 and under 100 lbs now. I am nauseous and have no appetite at all. I take Zofran, Phenegren (I try not to take this because it makes me feel so out of it) and was just prescribed Merinol for appetite.
Thank you for all of the ideas. I still don't know if I should get the Capsule Endoscopy. The thought scares me. I think my GI doc is at a loss and this is his last idea as what could be wrong with me. He doesn't believe in chronic Lyme so that is a problem right there.
Hugs to you all!!
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
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posted
I have been loosing weight to probably 40 lbs or more in two months. Was put in the hospital sunday with pancreatitis. If your sugar is acting up going up and down for no apparent reason and your tummy aches get it checked. I have been showing sugar issues but they rather than check for other reason assumend because i was over weight i was devloping diabetes. While all along its been pancreas issues. But lyme will also just cause you to loose too. I hope i keep loosing but not for the same reason. Feel better. Also taking meds can make everything taste nasty too. Reaction to meds can cause you to feel sickish too.
Posts: 112 | From Ohio | Registered: Aug 2006
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posted
My brother lost 30lbs, was eating 3000kcal a day (supplement protein drinks), and at the same time too debilitated to do more than walk from one room to another.
When he asked the Dr how he could explain this in a middle-aged man, the Dr said "I have to see my next patient now". For real! He was too sick to smack the Dr upside his head.
I have put on weight (10-15lbs) but it's due to reduced exercise from my babesia, and increased fat intake for Mepron.
I do NOT see how babesia would cause weight loss. Fatigue, one of the maid sx of babesia, will result in burning of fewer calories.
So, HOW DO I BURN OFF THANKSGIVING FOOD ORGY!
Posts: 872 | From New York City | Registered: Jun 2008
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posted
I was having terrible stomach problems until I gave in and began taking an acid blocker, that helped a little. what i think really did it was, I began to encapsulate more of my meds/herbs. I somehow got out of the habit if doing. Stomach problems almost non existent even after a Thanksgiving feast.
-------------------- HAVE FAITH Posts: 27 | From Phoenix | Registered: Nov 2009
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posted
oh, i forgot in addition to the changes above, I also increased to 2 Marshmallow herbs in the morning(another one of those things I should have been taking all along, per my dr., but was only taking 1) before eating anything and lemon water with no ice.
I was told the lemon reduces the acid in your stomach and the chineese drink it first thing in the morning for this reason.
All helped significantly.
I gained a little weight at first, then couldn't loose it when I knew I should by what i was eating. Then I began to have this nasuea and lost weight. i am now hoping I do not gain it back as I'm in a pretty good place now.
-------------------- HAVE FAITH Posts: 27 | From Phoenix | Registered: Nov 2009
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quote:Originally posted by sutherngrl: For me it is lyme and medications.
Well these were my symptoms even before I started treating and knew what I had so I guess I can assume it's Lyme. I really hope it gets better with treatment.
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
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I believe there's alot more research into cattle than humans with babesiosis. This may be a case of different strains causing different reactions or people having different reactions. Dr. S may still not know it all right now.
What I do know is that treating Babesia made a big difference for my husband.
[ 11-27-2009, 01:09 PM: Message edited by: Parisa ]
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
Thanks Parisa, my LLMD believes that the cause of these symptoms in me is Babesia. He is a wonderful LLMD and researches constantly so I trust him. I just hope treatment helps. It's so hard when all of these symptoms overlap. It's hard to tell.
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I also believe the cause is babesia.
When the babs makes you so nauseated that you barely eat, you will lose weight, even if you just lay around. Same if the babs takes away your appetite.
Also, if you have enough anxiety that you never feel like eating, even if all you do is lay around, you will lose weight. And, you can lose it quickly too.
I had times when I barely ate. A few mouthfuls of food and that was it.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I wonder if that is whats going on with me all this also has me scared. I feel like a big experiment.
I also have no appitite nothing tastes right i get real hungry finally think of what i might like. Then get it and take two bites it tastes like meds and awefull. Or i can only eat a little. Which i could stand to loose another hundred lbs.
Posts: 112 | From Ohio | Registered: Aug 2006
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posted
I don't know which bug causes it, or even if it's a single bug at work (it may be combo that's doing this). But I lost a ton of weight too.
All the GI docs I've seen have been worthless (except for one who told me western medicine wouldn't have my answers, and I'd have to find them myself -- she was right). They have very limited diagnostic tools, and for the most part are not looking for whatever is getting us. They are looking for a few major things that are clearly defined, where they can pen a big check into a box on a premade form. Unfortunately, those boxes don't apply to us. I had one GI doc who wanted to do an upper GI series over and over, mostly because he didn't know what else to do.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Anybody consider if parasites are involved?
Worms/bugs stealing your nutrients??
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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I'm so sorry to hear this! I know we've been out of touch, so I didn't realize you were struggling with this. :0(
I don't know if any of this will help, some is echoing of what others have said.
I'm on some meds that have made me gain weight. The most notorious is Depakote, which I need or I get continuous migraines. But almost all the anti-convulsants and anti-depressants do this.
So, if you're considering any anticonvulsants or antidepressants for any other symptoms (sleep, mood, migraines, etc.), check with your doc, because they might actually help with the weight.
My weight has gone way down and way up with these damn diseases. When I was sickest, I had the horrible nausea, but I was also so exhausted and in so much pain that it was physically too difficult for me to even chew or swallow. I lost 30 lbs in about 2 months.
On the other hand, over the last several years, I'd gained 60 pounds from the meds, etc. So, in my case it was not dangerous.
One thing that has helped me a lot is the Vegan Rice Protein Powder. Someone mentioned it above. It has very little flavor, so that can be helpful if you can mix it into something you tolerate, and it boosts the nutritional value.
For breakfast every day, I have a mug (can heat it in winter, if you like) of 2 T organic cocoa powder (just plain cocoa, no sugar, etc.), 2 heaping T rice protein powder, half hemp milk and half water. If you want to make it more appetizing, you can add Stevia and/or cinnamon.
For me, this has helped me "eat" on days when it was otherwise difficult.
I just posted that since I started back on Mepron, I have immediately lost my appetite. Rather, I'm hungry, but as soon as food's in front of me, it's like, Ewww.
So, I do think you and your LLMD are right about it being babs, because I'm herxing, so this is a babs sx for me.
I have a LOT of food allergies, so I know the limited diet can make things very boring and unappetizing. I find that sometimes one of these help:
1. Comfort food. If you need to gain weight and you need to eat, eat whatever is pleasant, comfortable, and not associated w/barfing for you! If it's not something you're allergic to, try not to get hung up on all the rules about rotation or carbs or whatever, and just eat.
Your body needs nutrition for everything. If you're trying to follow diets that are too restrictive, and it's contributing to the weight loss, the more urgent matter is to get food into you now. You can always go back to the ILADS diet later.
Of course, if it's so restrictive because you're allergic to everything and it all makes you sick, that's a much harder situation. Either way, if there's any food that is "comfort food" that you can almost always get down, go for that.
For me, comfort food is eggs, plantains, toast, chicken soup, and whatever fruit I'm not allergic to. I tend to eat a lot of eggs when my appetite is off because they're easy, they're tasty and nutritious, and they don't make me feel like I'm gonna yak.
2. Really intensely flavorful or spicy food. This seems like the opposite, but sometimes I cannot tolerate one more bland, reptetive meal of chicken and rice and steamed veggies or whatever. I just feel totally nauseous looking at it or trying to force it down.
A lot of times just the smell of food makes me ill. However, sometimes intensely pungent, unusual food, instead of making me sick, makes me truly hungry and hanker for it.
Sometimes I can cheat on my food allergy restrictions and eat pickles or saurkraut or thai food or whatever, when I can't eat something "normal." Even putting hot pepper sesame oil in something that's otherwise bland, like chicken soup or egg drop soup, makes a difference.
I don't know if this is an option, but if there is any restaurant food that is safe for you that you can afford, or a really good cook who is a friend or family member, maybe they can make something tasty and unusual.
Or cookbook recipes of things that are intensely flavorful and savory and strong-smelling. (I know this seems totally counterintuitive.)
I often found that because I couldn't go to the store and I just was trying to save PCA time for the neccessities and eat something that wouldn't make me sick, I ate the same flavorless things all the time, whereas if a friend cooked for me, she knew my restrictions, she could still make something I was not allergic to that was so much tastier than I was used to.
It was like eating was a completely different experience! I would devour it.
Another thought I had is that promethazine/phenergen does NADA for me. I can take it and throw right up. Pill form or suppository, doesn't matter. In the ER, they gave me something IV they said was way stronger than phenergen, and it didn't touch the nausea at ALL.
I think when the nausea is bad enough, maybe you need something hella stronger or different than those drugs. I'd talk to your LLMD about it, if you haven't already.
The only other thought I had is to ask your gastro about -- I forgot the exact term, but it's something like "stomach migraines" or "GI migraines." It's a migraine of the GI tract.
I found out about it from a friend who has a lot of the same illnesses and symptoms as me, and she would feel like she was having a migraine, but no headache, like a migraine in her gut, and it turns out to be a real thing, with a medical name!
If you could get that treated, that might really make a difference. Migraines are, by their nature, neurological. The current thinking is that they're a form of slow seizure.
So much of Lyme, babs, etc., is neuro. So, you could be having your neuro symptoms in your gut. Sometimes migraine treatment works like magic, and sometimes nothing helps, but I thought I'd mention it as something to look into.
I'm sending you all my good wishes.
-Sharon
Posts: 223 | From Western Mass. | Registered: Nov 2008
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