posted
I was diagnosed w/lyme in Dec 06 and didn't get the correct treatment till May 07. I've been treating with the wonderful Dr. P. for about 6 months now, on and off abx. My normal weight is 100lbs - I had lost 5lbs initially when getting really sick from lyme and was REALLY skinny. Well here I am almost a year later and I seem to be GAINING weight and quickly. I went from 100lbs to 110lbs when not really changing my diet at all. I can't figure out what's happening! My LLMD ran a thyroid TSH level which was 1.8, normal even in the *new* testing results range. I am considering pushing for more thyroid testing, like FT3 and FT4, do I need anything else (can my LLMD run these or do I need an endocrinologist)? If I lost weight initially, would the lyme cause me to gain weight NOW when I'm getting better, or is it actually my thyroid? I'm really confused and scared as I don't want to wake up one day weight 150...I wouldn't mind so much if I was all healed but I'm not and this is totally bumming me out. I'm not gaining weight because I'm healthy or eating more...
I recently went back to work and thought the weight gain was due to a year's inactivity while I was sick. But I'm more active now than ever, eating less, and gaining.
Will the weight resolve during treatment, will I lose? Can abx cause weight gain? I've been on mepron/zith mainly, yet during the past two months I tried Biaxin/Ceftin which didn't do much (and I got a UTI which set me back too treating that).
Any help/advice would be wonderful, thank you!
Posts: 46 | From RI | Registered: Nov 2006
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posted
I initially lost weight as well. I went from 180-230, now i'm coming back down. I do have to say that for a while I only ate comfort foods. I wasn't diagnosed as of yet, and I figured if I was going to die (cause that's what it felt like) I might as well eat only food that I liked.
In hindsight, it was stupid, but I really didn't know what was happening to my body, and I figured I didn't have anything to lose.
Posts: 158 | From Santa Monica | Registered: May 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter is here. She's the REALLY sick one. She starting getting ill around 14. Nearing 16, she was in full blown pain, had been to ten docs, and put on 80 pounds in 3-4 months.
Yes! I said 80!!! And, you know what the doctors said? "Well, I see you're eating healthy".
She was mortified. She had to drop out of school. Kids spread rumors that she was pregnant due to the weight gain.
She was the smallest in her class, 98 1bs. She topped out at 188!
She was finally diagnosed around 17 yrs old.
After two years of treatment, she is now around 110. She only started limiting sweets and carbs because they made her feel sick. But, normally, it didn't matter what she ate, or what exercise she attempted, it just kept coming on and staying on.
She will tell people who now compliment her on her weight reduction, that she had no control over the gain, she has had no control over the loss.
She wants to make it clear this was NOT a behavioral issue.
Posts: 2903 | From AZ | Registered: Feb 2006
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daise
Unregistered
posted
Hi twinklette,
Now you are gaining a lot of weight. I would ask the good LLMD, to see if this is Lyme / co-infection related. It may be a good clue, very telling of what's going on.
You might ask your LLMD if there are tests you need, before your next apppointment, that conventional docs could run.
For example, maybe you could see a good gastroenterologist. They can rule out some things and they can verify if something is wrong in your GI tract. I am amazed at what a colonoscopy can reveal (more than just cancer) they can directly see many infections and then biopsy those. They often do an endoscopy at the same time.
But the gastroenterologist needs to know ahead of time that you want these things searched because you have Lyme and have been taking serious antibiotics for awhile--and now you are gaining weight.
This months www.PublicHealthAlert.org online newsletter has a great article on "Bell's palsy" of the gut, by Virgina Sheer. There may be a clue there as she wrties about a range of things that can go wrong in the gut.
Any doc can run FT4 and FT3, however, many don't want to as they don't take it seriously. An endo might be the best bet. Certainly your good LLMD.
posted
I've gained about 10 lbs since starting treatment. Thought it was the Doxy making me really hungry?? I was eating a bit more but not that much.
I'm still able to play tennis - usually when I'm active like this the weight just comes off on its own.
Not this time. I have read that Lyme can screw around with how your body handles blood sugar, that you become a bit insulin resistant? You could Google for more info.
I leveled off at about 10 pounds up for months and month. So that might happen to your daughter, too. Might be a "normal" weight for her while treating due to the drugs, Lyme, etc.
~webmeg
Posts: 257 | From Connecticut | Registered: Oct 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Welcome to my world I always had a weight problem since being given something when I was around 2yrs old after that always heavy but very active sports playing etc. I do know limiting my carbs to around 20 percent and down I will lose weight and it works but its boring and somewhat hard as a adult. I do need to get back on this iam way overweight now for the umpteenth time.
Its hard when taking all the abxs and working etc and noiw that my body dosent absorb b12 .
-------------------- 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.
I used to be a very active belly dancer, and had weighed 135 to 140 since I was fourteen. However, I have put on 25 pounds in less than a year, without changing my diet. It is all in my mid-section as well, aka central obesity. My cholesterol has gotten ridiculously high, too.
Obviously, something happens to our body's ability to metabolize, whether it is a mechanical issue with the GI track, or an endocrine issue with our thyroid or adrenals. Who knows. I wish someone could tell me.
My LLMD recommended taking an adrenal support supplement that would help, but it hasn't. I'm starting to do aerobics again, so hopefully it will atleast hault the weight gain, if not induce losing some of it.
Has anyone's LLMD found what the mechanism is to weight gain in Lyme patients? I'm starting to think that Lyme and co are preternatural "body snatchers!"
-------------------- Mountaingirl
"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
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posted
I am also a small person who initially lost weight due to Lyme. In the last year, I have gained almost 20 lbs. I have been in treatment for over 2 years. I have almost doubled the amount of exercise I do and cut back on eating, but am having a hard time even taking off a few of those lbs.
I sent to Canary Club and got the saliva testing kit. My thyroid, including T3 & T4 were normal. The only thing that was a little low was my cortisol on one of the tests. DHEA was recommended.
When I asked my LLMD (before I did these tests), his only help was to tell me to cut carbs. I see him tomorrow and I don't know if I will share these results with him or not. After reading Mountaingirl's response about adrenal support not helping, I may be wasting my time.
Also, my LLMD doesn't believe in supplementation, so I'm not sure I'm up for a lecture.
I hope you find an answer. Everyone tells me I look better with a few extra lbs, but I FEEL uncomfortable with the poundage all being around the middle. I know, it's the age thing again!
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I go to your LLMD too. He found my thyroid was off when I started to gain weight. Now I'm almost normal. Alot of my weight is/was water, and inflamation.
Try dandilion LEAF tea (natural diuretic) if you slim down you'll know if water.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
This happens to a lot of us, (if not maybe ALL of us at one point or another.) A lot of it seems to be inflammation, and definitely a change in metabolism as well.
My weight swings up and down within about a 25 - 30 lb range, which is a lot on a 5 foot tall, small framed gal.
I gain a lot (same deal, eating less, exercising more, nothing helps) when I am in a flare/relapse. I lost a lot last year, when I was feeling well, and now it is back -- hoping that my current drug regimen will help take that off again, as I am feeling a lot better these last few weeks.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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