nonna05
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Member # 33557
posted
I've just puffed up like a blow fish ...I've been down for long periods of time before ,End of Feb-April, end. I got puffy and gained 20 lbs. ..It's still on me,,,
This only happened one other time when they tried Cymbalta a few years ago , 20lbs in 8 weeks.. took forever to get it off . Stopped the drug after 4 weeks.
t
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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joalo
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Member # 12752
posted
Up.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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sammy
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Member # 13952
posted
I don't know if Mepron alone contributes to weight gain. Unfortunately, having to add all the fat to help absorb the medicine might make it harder for you to control your weight.
If you take Mepron with your meals you shouldn't have to add too much fat because you should already be getting a good amount in. Breakfast was the hardest meal for me. I did have to add butter, or peanut butter, or almonds, something like that.
I think that Lyme and the coinfections themselves have more impact on our weight than the antibiotics used to treat them. My weight struggles started when I first got sick, I did not know that I had Lyme at that time. The weight just fell off. I got sickly scary thin fast. Then about 6mo later all the weight and more came back on really fast. I was eating super healthy and exercising (in an effort to feel better). It was beyond belief. This has happened numerous times since then.
For the most part I didn't mind losing the weight, until I started to get too thin. Our society is sick though. They praise you for weight loss. They all say "oh, you look good, you must be feeling better." Since when does it look "good" to be too skinny to even wear calvin klein size 0 pants? Never!!!
It was terribly depressing to gain the weight back and not be able to control it at all. No matter what I did, no matter what I ate or exercised or supplements I took, nothing helped slow it.
Another thing that I noticed, the infection weight gain is not just fat. It is fluid, edema. You can easily gain 5+ pounds over night. It happened to me. I woke up and my pants and bra that I wore comfortably the day before did not fit again for many months. Talk about scary and upsetting.
It makes me so mad when people get on here and say that you just have to follow the candida diet, no carb, no sugar diet and you'll lose weight. I didn't lose weight. It made me feel crazy and gave me low blood sugar all the time. It didn't help. I tried.
I think that the only thing that will help is properly treating our infections, balancing the adrenals and thyroid (this is difficult), eating right, and exercising. All things need to be done to get weight in control. Not just diet. That alone won't work.
So Nonna, I hear you. Weight gain is depressing. I'm sorry that you are going through this.
Posts: 5237 | From here | Registered: Nov 2007
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nonna05
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posted
It's so crazy that this happens,,, I made myself try to lift 2 lb weights. walk the stairs a few extra times and all I did was end up in bed sicker..
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Summer3
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posted
I got that same reaction as Sammy. I'm not sickly thin, but I went from a size 8 to a size 4 in a few weeks when I got pretty seriously sick last year. For me, it's too thin. My relatives think I look skeletal.
The first thing other people said when they saw me was "you look good!" It actually made me pretty annoyed. I am not feeling well at all and the fact that people only judge your health based on your weight is disgusting. I literally went from being able to jog 10 miles to barely able to get out of bed most days.
Now after a few more months people are starting to change their comments. All of the sudden I look "terrible." I've dropped a couple more pounds.
When I added the two steroids (Cortef/Florinef) the doctor actually said I should gain some weight. That hasn't happened yet. Nonna, I thought that you mentioned you were going to start that combo too. Do you think that may be contributing or is it too soon to have caused the weight gain? I have read that if you add a little salt it can prevent some of the water weight that comes with those meds.
There were times while I was on Mepron that I was absolutely STARVING. I could not get enough food. I was probably eating over 5000 calories per day. Then other times I didn't want to eat anything.
Summer3
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posted
Hi Manybites,
My LLMD thought I did have babesia. He tried to treat that first. I did 2 months of Mepron/Cleocin and then 6 weeks of a higher dose of Mepron/Doxy/Zith later on.
I wanted to stay on longer than 6-8 weeks (both times) but my liver enzymes were too high and I couldn't get them down so we had to switch to Bart for a while. So far that treatment is keeping my LFT's in the normal range for the first time ever.
I'm looking for a some options for my current combo though. I'm on rifampin/doxy and want to add either biaxin/tindamax, biaxin/plaquenil, or possibly Bactrim and something else.
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Summer, if you need bart and babs treatment, there are many different good combos that you can try like: Septra, Bactrim DS, Levaquin, Malarone. Septra, Biaxin (or Zith), Malarone, Bactrim DS. Switch out the Septra for Doxy, Mino, or Clinda for your primary lyme med. Later add Plaquenil, Flagyl, Tindamax, or GSE as cyst buster. Could add cryptolepis, sida acuta, or art for babesia.
You have so many options, this is just off the top of my head!
Posts: 5237 | From here | Registered: Nov 2007
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AuntyLynn
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posted
Nonna05 -
Are you taking B-Complex vitamins?
Or Brewers Yeast? (High in Bs)
The B-complex vitamins help to regulate/prevent edema! I always held water in my legs, until I started taking Bs in my late twenties, and a few days later, I saw my ankle bones for the first time!
Bs are water soluable.
The nutritionist Adelle Davis said that if you have a B vitamin deficiency, your cells will take on extra water, looking for these vitamins! When you supply them, they give up the water.
Not saying this is the answer to yoru problem, but it Might help!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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Summer3
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posted
Thanks Sammy
Do any of those combine well with Rifampin? I know Rifampin is a tough one to use in a combo because it reduces the effectiveness of a LOT of other meds and some of the other meds raise the toxicity of Rifampin.
I'm nervous to go off it because it is the only thing that has lowered my liver enzymes and I'm not sure if that effect is permanent yet (I've been on it less than 2 months).
I think my babesia symptoms are less severe than my bartonella symptoms so maybe I should hold off on that for now. I don't know. I just always like to have some options in mind for myself before appointments.
nefferdun
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Member # 20157
posted
I gained weight with babesia because of the fat I was taking with the mepron/malaron and my crushing fatigue. I could hardly walk sometimes. My normal weight had been around 143 for ten years and I went to 153 the year I was treating babesia.
Then I realized I had protomyxzoa and began treatment for it with LOW FAT instead of high. I lost 18 pounds. I have much more energy and feel much better. My jeans are falling off - that is the only problem. I went from a size 13/14 to a 7/8 and have to wear a belt to keep them on!
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I was told that many of the medications we take for Lyme and coinfections play with our metabolism and can cause weight gain.
I am sorry for all those who try so hard to gain weight. For me, I am the total opposite. I struggle to maintain and not gain. I wouldn't mind having the opposite problem for a little while. As it is, I have a lot of problems eating most foods now and I still fight with the scale.
Like many with Lyme, I am so insulin resistant that I can't eat any starches of any kind. Even the good ones add weight. I have problems eating vegetables. I have my own way to knock off 15-20 pounds every 6 months as it always creeps back on no matter how I eat.
I used to personal train, so not being active contributes to this, but I know the medications I am taking are part of the problem. Fibrous vegetables just kill my stomach. I can eat eggs and yogurt with no trouble. I use good protein drink supplements to keep my protein up.
My LLMD said that when I can get off of most of these drugs, I should straighten out. She said most people actually lose a few pounds when they can get off all the abx.
I don't believe in low fat foods. They all have too many fake additives in them. I stick with foods that my body can recognize. I can reduce the amount of fats I eat, but they are real fats and not ready made low fat items from the grocery store.
Once I can start to move again, I have a gym of my own. I can't wait to use it again. I love lifting weights. For me it is the quickest way to drop a size. I use the blood type diet to keep inflammation down. It has helped me tremendously. I just avoid certain foods based on my blood type and eat the ones that are supposed to help me based on my genetics.
My weight has been much easier to stabilize since eating this way. The Lyme and abx make me nauseous and eating is just a lot of work when you don't want to eat at all.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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nonna05
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posted
this was before cortef and i still haven't settled about that yet.
... the damage those shots did just make me skittish about it... . been on mepron and omni the longest,, so if i take a salt capsule it could help with the puffy feeling and hope a few pounds,,,
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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AuntyLynn
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Nonna -
WHY ON EARTH would you think that SALT would get rid of your puffiness??!
NO WAY! Salt makes you RETAIN Water!! Girlfriend ... you need to listen to your docs, because you know your "thinking cap" is a little twisted off center right now.
Adrenal exhaustion is nothing to play with ... No Wonder you have no energy for anything!
Brewers Yeast/protein shakes would help - and so would a little help around the house, so you could get on the right foods and maybe even a regular sleep schedule.
But as long as you are content to be submissive, and accept the status quo - not much is going to change. Sorry. Sometimes we just need a loving kick in the pants.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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AuntyLynn
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Faithful777-
I wholeheartedly AGREE with you about the "low fat" foods!
They are filled with empty calories, and worse (example - olestra); and are designed to build PROFITS not health!
Ditto powdered creamers, and "half & half" (half vegetable oil).
I never saw anyone on a "low fat" diet that didn't eventually gain weight - your body NEEDS the fat, and most people will substitute high carbs in order to satisfy those cravings.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
Haven't read all these responses, but Nonna....I did gain weight and LLMD took me off Mepron.
I gained 8 lbs in about 6 days all water weight. She was concerned about kidney function. As soon as I stopped Mepron I lost 6 pounds in 2 days. Not a normal reaction and I think it showed I wasn't able to process the med (kidney, liver)
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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nonna05
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posted
AunLynn---That is what I thought I read..usually I would think low salt.. but then I read there can be an issue with that and lyme..
didn't read it elsewhere and would never have come up with that myself.... pme,,,what did she put you on instead?
I've been on it at least 5 1/2 month's..I'm praying for that 6th month turnaround
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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nonna05
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posted
I thought brand name Septra wasn't made anymore. pharmacy said that.
is it bactrim or biaxin?
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
Nonna, I have no idea what you are eating, but I sure hope you are drinking at least 3 liters of plain water every day. Add lemon if you need help getting it down. There are also flavored stevia drops to add to it if you don't like water.
So many people don't drink enough water and the body needs that too to detox. If you can be sipping all the time it isn't that hard to get enough water in so your body can function.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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nonna05
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posted
neff . didn't you still need fat with the mepron?? Aunty yes ,,brewer's and b's
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
Nonna Unfortunately after spending 1700 on Mepron because my insurance would not cover Malarone, she wanted to put me on Malarone
Insurance did cover Mepron (though we still had to pay out of pocket because we had a big deductible) but would NOT cover Malarone.
So I am taking Artemesinin and will start crypotlepsis (? spelling) and see how that works.
As if our self esteem is not affected enough with this disease, we do not need the weight gain. I am sorry that you are having to deal with this
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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