luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I have packed on 20lbs. Initially, I lost 20 with the diet change. I kept it off the first year of treatment but when I switched to my current doctor and she put me on so many meds, the 20 lbs came back.
Far worse though is the bloated stomach. I take probiotics and do not seem to have yeast anymore. I have taken months of meds for that as well.
My doctor says it is the toxins moving from my tissues into my fat cells and when we finally move them all out of my body, the weight will drop and the belly will flatten. I hope so.
I got the book "The Potbelly Syndrome" from the library and it talks completely about bacterial causes to potbelly including lyme and CPN. Two things I have.
However, I am deep into the book and he has yet to give any solutions. In fact, so far, he has sounded rather hopeless. The bugs can't be killed. No amount of diet or exercise will remove the potbelly,...etc.
Bummer!
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Don't give up. Many have gotten much better from lyme. Even the author of "Cure Unknown" is back to normal.
The Potbelly book's connection to lyme and Cpn triggered endocrine stress led me to understand that the importance of endocrine support and avoiding stress. Also, that the weight may not come off until the infection(s) is history.
For some of those in the Potbelly book, when the infection cleared, the weight nearly melted away.
You might want to do a search for past threads as this has been discussed here from time to time.
Assuming you are eating well and sleeping as best you can - and getting gentle (non-aerobic) exercise . . . addressing stress issues and endocrine support --- I say just take the best care of yourself as you can.
The belly bloating can also go down when the liver and spleen don't have so much work to do.
Here's a current thread that has some more detail:
posted
I'm battling this. My weight fluctuates by 5 lbs/day on a regular basis. If I'm too fatigued to workout, I gain. It is almost impossible to lose it again.
My TSH level is high-ish, I think the highest it came in was 3.35 and my most recent labs show it at 2.95. My LLMD thinks that as the Lyme is treated, my weight issues will improve.
I was extremely big as I was getting sick, and did lose a chunk of weight. I was losing weight at a good pace, when BAM! The fatigue hit, and the scale stopped moving.
So I know what was working before is not working now.
It is frustrating, I just try to do my best on my good days to keep my bad, low-energy days from packing on the lbs.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I have gone from a size 8 or 10 to a size 16 or 18. Ouch.
I have stayed about the same weight all of my life until lyme and company hit.
At first I thought it was because I was not able to move the body.
But, I have started moving now for short periods of time. I went up a size instead of going down.
I have heard that once the infection is beat down getting back to a lower weight is much more doable.
It was not until this winter that I started feeling well enough to be concerned about my weight.
But, I am doing all I can. I have a sugar free/gluten free food intake.
And I do walk when I am able.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
oh i just knew somebody would ask this stupid question!!! LOL
i started out at 98 pounds at 5 feet 1. kept gaining and now am at 190....yikes....
i'm so embarassed...i walk a mile every day, try to diet, eat right but i'm on antidepressants and they casue huge weight gain.
my doctor told me to "keep your mouth shut"...well,hon you can't exactly do that ya know?
there's got to be a way to loose weight, do the diet and not feel like you're going to kill someone because you're so hungry.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I've gained weight too. It was only about 10lbs over March and April but now i've gained an additional 8lbs this month. Scary.
I'm trying to be really careful about my diet too. I just don't understand why i'm gaining. It's really frustrating.
Posts: 5237 | From here | Registered: Nov 2007
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posted
I have gone from marathon runner to couch potato. My fatigue is awful - so I have gained 25lbs - 30lbs. I feel as though lyme has taken my body hostage -- especially my endocrine system.
Welcome to the club!
Posts: 379 | From Sydney, Australia | Registered: Nov 2008
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
I started at 125 pounds three years ago,have gained 15 pounds in the first year. But I eat everything and a lot. I am housebound since some time, do not work out and eat a lot of carbs and also candy.
Posts: 1834 | From US | Registered: Oct 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
The first year I was sick I gained 70 lbs. I cut my calories down to 600 per day that year because the doctor kept telling me I was eating too much. Boy was I dumb.
Turns out I have massive fluid gains. If you gain more than 4lbs in one day, that is fluid.
I was studied at a research hospital for almost 2 weeks. They found that I have significant fluid gain. Even though I have all the records I still have doctors telling me to cut my calories down to almost nothing. They think my weight is due to eating. I can guarantee it isn't.
The problem with eating such a small amount is that you will screw up your metabolism and your appetite. I went for years with almost no appetite, all the while gaining weight.
I gained another 6lbs in 2 days back in Jan. It won't come off. That's how I gained it all. Very frustrating.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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bettyg
Unregistered
posted
quote:Originally posted by TerryK:
Turns out I have massive fluid gains. If you gain more than 4lbs in one day, that is fluid.
I was studied at a research hospital for almost 2 weeks. They found that I have significant fluid gain.
Even though I have all the records I still have doctors telling me to cut my calories down to almost nothing. They think my weight is due to eating. I can guarantee it isn't.
terry, i think i have fluid gains also; how do they determine that since at times i show 4 lbs. gain/day too!
i know dad used to gain fluids around his heart and lungs; once they took off 20 lbs. in 3 days. this was a regular occurence for him.
i too have gained weight; 1 depression pill they put me on caused me to gain 25 lbs. that year. it's all there plus..
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Randibear, my daughter was the same size as you before she got sick. Then, she put on 90lbs in 4-6 months.
All the "specialists" gave her the same spiel about eating fewer calories...blah blah. Like ANY 15 year old can pack on 90 lbs that fast!!!
She is now back down to 100lbs (started melting off her when she started mepron and continued through minocycline).
Since becoming ANA negative, she has grown at least an inch.
Her LLMD would tell her at almost every visit, "all my patients come in here overweight, but as they get better, the weight comes off"
If you can sweat in an infrared sauna, that burns 300 calories in 30 minutes.
Posts: 2903 | From AZ | Registered: Feb 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Betty - They did specialized studies with fluid displacement. Also measured my intake, output, messed around with diuretics and more.
My edema is non-pitting for the most part but many people have pitting edema. Your doctor will be able to tell if you have pitting edema because pressure from a fingertip will leave an indentation.
I dont know the parameters for pitting edema off the top of my head but you could do a google search to see how long to press and for how long the indentation should stay in order to show pitting edema.
I know you have sleep apena so I'll just mention that untreated sleep apnea can cause fluid retention. Oddly, when I started using my CPAP machine, I gained lots of weight with no change in diet. No one could figure that one out.
Disrupted sleep can cause fluid retention and/or weight gain.
Keep a careful diary of daily morning and evening weights. That info can be very helpful if you gain excessive fluid during the day. Show your doctor if you think you have fluid retention.
Seems like TBI's cause fluid retention in some people.
posted
i gained 50lbs in the last 9 mos. no reason for it - absolutely unacceptable to me but nothing I could do about it. Don't know if that makes you feel better. but I was between 165 and 180 my whole adult life - now, at 36, all of a sudden i'm 220. Very odd and very hard to fix. I rather envy those who are carrying a smaller load than when they started.
Posts: 26 | From Napa, Ca | Registered: Apr 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I'm the opposite, lost 20-25 pounds in first 2 months of treatment. Before that, I could not lose a pound, even when running 7 miles/day and lifting weights.
Now I do nothing and lose...go figure.
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I gained big time. About 30 lbs. Right now, I'm just focused on getting better and giving myself a pass on the fattiness until I feel less like a truck ran over me...
-------------------- Wildlife biologist working in tropics since 1997; tick bites in Nicaragua in March 2007, started getting sick May 2007; diagnosed with Lyme based on serological testing in Jan 2009; treatment starting Feb 2009. Wish me luck! Posts: 116 | From Seattle | Registered: Feb 2009
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bettyg
Unregistered
posted
chris, there are some advantages! on windy days, we don't blow AWAY lol
terry, thanks for telling me about pitting edema! dr. presses here/there and always gets his fingerprints left on me.
good idea on showing 2 weights/day for this type of thing!
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
After 13 years infected then treatment for eight years out of shape and way way to fat. What a bummer. Now I have start taking it all off while balancing work , and working out getting in shape mostly, the last 2 years is where it really went h*ll.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I've packed on 30 lbs and getting more frustrated every day. My appetite isn't very good and I fill up quickly at meals so it has nothing to do with over-eating.
My LLMD suggested a diuretic but I didn't want to add a bunch of new side effects to the mix. I was also told that lyme changes our metabolism.
Has anyone tried a diuretic?
Posts: 677 | From Virginia | Registered: Sep 2002
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
I've also found it v. hard to keep my weight down over the course of long illness: I am at least 2 sizes over my norm, despite limited [but healthy choices] amounts to eat.
When I first started on an anti-candida and anti-allergy diet in 2003, based on kinesiology testing, I gave up wheat, dairy, eggs tea, mushrooms, yeast and one or two other minor things. I didn't at this time try to lose weight and was eating reasonable amounts.
Over the first 4 to 6 months of this regime, for the first time in years, about threequarters of a stone fell away .
For no apparent reason, the weight came back on after this time period, despite the fact that I was still on the same regime and now I'm at my heaviest ever,which may partly be age/hormone-related.
As others have said, I'm sure a lot of it is fluid imbalance, hormonal changes and faulty digestion because of bacterial imbalance and other ramifications of the illness, not to mention that those of us with chronic fatigue can do very little to exercise.
As the illness improves, so, I expect, will many people's weight gain [or indeed loss],
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I have gained about 50 pounds. I hate it. I feel awful about myself and won't even see any of my old friends. Clothes in my closet range from size 4-14.
I was recently diagnosed with hypothyroidism and my LLD said I would lose weight once the medication balance is right. Hasn't happened yet.
I also have to say I am bedridden and am trying to get myself to walk a mile 2 -3 days a week right now. So far have managed it a couple of times.
I also made June 1st my day to start a healthier diet. My diet was horrible. I expect with a better diet I will lose weight....hoping so. I am just way too sick to shop and cook.....so I think that really contributed, also.
We have three or four groups on www.lymefriends.com about weight, healthy eating, raw diet; juicing, and carb free recipes. Feel free to come and check them out for more support.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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