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Posted 8/29/2017 5:27 PM (GMT 0)
I'm having trouble with weight loss. I've lost about 20 lbs. since my symptoms began in March 2017. I was diagnosed with Lyme by my NP doctor in May of 2017. I am trying the follow the Lyme diet but even when I don't, I can't gain weight. I'm now seeing a new LLMD in Maryland where I live. He and my previous NP believe I have Bartonella. Should I be concerned with the weight loss? My LLMD has me on Banderol, Sparga, Burbur-Pinella, also Limbrel for the inflammation. Do you all follow the Lyme diet? I know about sugar but what about gluten or dairy? I'm so tired of people asking me about my weight.
Posted 8/29/2017 5:30 PM (GMT 0)
bump
Posted 8/29/2017 5:45 PM (GMT 0)
Take a look at the skinny hands and feet post.
Posted 8/29/2017 6:31 PM (GMT 0)
I too have weight loss, and after reading this forum it seems like a common problem. I try to follow a lyme diet of gluten, dairy and sugar free. I also see a naturopath that took food sensitivities testing on me and I actually had issues with gluten, dairy and eggs. So I don't eat eggs either.

During my vacation I cheated for almost two weeks and ate whatever I wanted (without sugar and eggs). This was partly because I was panicking about my weight loss and because I was sick of the diet. I actually felt great during my vacation, but I hit a bump towards the end. I don't know if it was related to the diet as it's impossible to know with the ever changing symptom severity. I have given up finding any pattern of what causes what. I just try to eat the "lyme diet", but don't really know if it helps.
Posted 8/29/2017 6:40 PM (GMT 0)
I'm right there with you. Weight loss, fat loss, collagen loss, etc.
Posted 8/29/2017 6:48 PM (GMT 0)
Yep weight loss, collagen loss, etc. I eat everything that is gluten free like the breads, brown rice and stuff. No dairy. No sugar although i do have a handful of dark chocolate chips with my macadamia nuts at night!
Posted 8/29/2017 7:41 PM (GMT 0)

RedLabel said...

During my vacation I cheated for almost two weeks and ate whatever I wanted (without sugar and eggs). This was partly because I was panicking about my weight loss and because I was sick of the diet. I actually felt great during my vacation, but I hit a bump towards the end. I don't know if it was related to the diet as it's impossible to know with the ever changing symptom severity. I have given up finding any pattern of what causes what. I just try to eat the "lyme diet", but don't really know if it helps.

I did a strict elimination diet part of last year after I suddenly developed IBS. I felt somewhat better in a general sense, but it had no effect on my specific symptoms.

After a hurricane hit this past October, I couldn't stick to to the diet for a week and ate whatever was available. I felt better. I had been starving on that diet. I continued to eat what I wanted and don't think I was the worse for it. Not that I think what we eat doesn't matter, but unless you have food allergies or sensitivities or leaky gut, it probably isn't as crucial as we're led to believe, IMO.

For me, the stress and social isolation over trying to follow a strict diet did more harm than the diet did good as far as I could tell.

I realize most others here would probably vehemently disagree, but I'm glad we can voice differing viewpoints civilly here.
Posted 8/29/2017 7:51 PM (GMT 0)
Unfortunately I have leaky gut (at least my naturopath says so) and the yersinia bacteria I have is a gut bacteria, so I think this contributes to my strange stools.

Is there any test for leaky gut? My naturopath uses microscopy to look for blood contamination etc.

My LLMD said she generally don't tell people to eat gluten free unless they are allergic or intolerent. There are probably a lot of opinions. It's not easy in social gatherings I agree. Whenever it gives me too much trouble I cheat a bit.
Posted 8/29/2017 8:11 PM (GMT 0)
I don't know. I haven't had any tests for leaky gut. Maybe someone else will chime in.
Posted 8/29/2017 9:47 PM (GMT 0)
I had weight loss first, then weight gain and I'm still dealing with the weight gain.

For weight loss (and sometimes even for weight gain, believe it or not!) we need to be sure that we are getting more than enough healthy fats and calories. Eating things like avocados, using olive or coconut oil, using protein shakes (look for the healthier ones though)/meal replacement shakes, eating nuts, or nut butters are all things we can do to make sure we are getting enough high quality calories and good nutrition.
Posted 8/31/2017 1:49 AM (GMT 0)
Jdiss,

Are you positive for mycoplasma by any chance? There was a thread recently about weight loss and mycoplasma. I've had a significant weight loss of 37 lbs so far. I seem to have plateaued, or at least I'm crossing my fingers that it has halted.

When you say you are following a Lyme diet, are you using a cookbook or just cutting out sugar, gluten and dairy?

The dietary restrictions are truly stressful at times!

Peace, Denver1
Posted 8/31/2017 2:15 AM (GMT 0)
I had weight loss.


April 2013 - symptoms hit like a ton of bricks. By May I had lost 14 lbs. (138-124)

I lost muscle...and what I had was like jello....couldn't flex it.

At that time, my food was coming out the other end with undigested pieces in it.

Started treating July, 2014 and after a few months (3-4) I gained a couple of lbs...by December I gained back 6 lbs.
By the summer of 2015, I was 135 lbs and am trying to stay at that weight.

So, it took treating the infections to start putting the weight on.
Posted 8/31/2017 3:30 AM (GMT 0)

Girlie said...
I had weight loss.


April 2013 - symptoms hit like a ton of bricks. By May I had lost 14 lbs. (138-124)

I lost muscle...and what I had was like jello....couldn't flex it.

At that time, my food was coming out the other end with undigested pieces in it.

Started treating July, 2014 and after a few months (3-4) I gained a couple of lbs...by December I gained back 6 lbs.
By the summer of 2015, I was 135 lbs and am trying to stay at that weight.

So, it took treating the infections to start putting the weight on.

Girlie, you bring up an interesting piece of detail. I notice in some areas where there appears to be muscle, like it has the shape, but then when I poke it it's jello. So strange. It's there in shape but jello soft.
Posted 8/31/2017 3:39 AM (GMT 0)

Denver1 said...
Jdiss,

Are you positive for mycoplasma by any chance? There was a thread recently about weight loss and mycoplasma. I've had a significant weight loss of 37 lbs so far. I seem to have plateaued, or at least I'm crossing my fingers that it has halted.

When you say you are following a Lyme diet, are you using a cookbook or just cutting out sugar, gluten and dairy?

The dietary restrictions are truly stressful at times!

Peace, Denver1

How long did it take for you to lose 37 pounds? That's a lot even in Lyme terms.

It's seems those with a significant myco infection waste more. I'm trying to get mine under control.
Posted 8/31/2017 4:11 AM (GMT 0)
I put on 20lbs. I think it's the antidepressants I reluctantly took, side effect, more appetite, more binge eating, eating to quell the sadness...
Posted 8/31/2017 11:19 PM (GMT 0)
Dacarte-

I started losing in Dec and by May 1 I was down 37 lbs. I've been feeling immensely better and I've gained back 1.5 of it in the last month.

I sure was happy to see my weight plateau, but even after the weight loss let up I continued to lose body fat.

Peace,
Denver1
Posted 8/31/2017 11:56 PM (GMT 0)

Denver1 said...
Dacarte-

I started losing in Dec and by May 1 I was down 37 lbs. I've been feeling immensely better and I've gained back 1.5 of it in the last month.

I sure was happy to see my weight plateau, but even after the weight loss let up I continued to lose body fat.

Peace,
Denver1

Right. It's the fat that keeps getting gobbled up by Lyme and probably more so, from Mycoplasma.

Is your fat loss in isolated areas or pretty evenly spread out?
Posted 9/1/2017 1:13 AM (GMT 0)
Body fat loss for me seems to be evenly distributed.
Posted 9/7/2017 2:25 PM (GMT 0)
Denver1,

My LLMD didn't say I was positive for Mycoplasma. He said to relax off the diet a bit and times and see if that may help. I do that, usually on weekends, but I go right back down. I'm seeing a new LLMD in Maryland and he has me on Banderol (7 drops a day), Sparga 1/2 dropperful 2x a day, Burbur-Pinella 1 1/2 droppersful 2x a day. He took me off the abx that my NP had me on for 3 months. I also take CBD 2x a day which helps with the inflammation and anxiety, Limbrel 2x a day for inflammation. I've been doing colonics 1x a week now for the last 2 weeks. I get these little reddish/purple spots on my hands, they come and then go after a few days.

My joint pain is mostly left sided with my left hip, burning in both knees though. I also take Ativan (1 mg) to sleep at night.
Posted 9/7/2017 4:43 PM (GMT 0)

jdiss said...
Denver1,

My LLMD didn't say I was positive for Mycoplasma. He said to relax off the diet a bit and times and see if that may help. I do that, usually on weekends, but I go right back down. I'm seeing a new LLMD in Maryland and he has me on Banderol (7 drops a day), Sparga 1/2 dropperful 2x a day, Burbur-Pinella 1 1/2 droppersful 2x a day. He took me off the abx that my NP had me on for 3 months. I also take CBD 2x a day which helps with the inflammation and anxiety, Limbrel 2x a day for inflammation. I've been doing colonics 1x a week now for the last 2 weeks. I get these little reddish/purple spots on my hands, they come and then go after a few days.

My joint pain is mostly left sided with my left hip, burning in both knees though. I also take Ativan (1 mg) to sleep at night.

How big are the reddish/purple spots?
Posted 9/7/2017 4:56 PM (GMT 0)
They are like the size of an eraser head. Just on the hands and never more than 2 or so
Posted 9/7/2017 6:29 PM (GMT 0)

jdiss said...
They are like the size of an eraser head. Just on the hands and never more than 2 or so

Does weight/tissue/fat loss in the same area accompany these markings?
Posted 9/8/2017 3:35 AM (GMT 0)
I think you can get several different tests for leaky gut. I think they are inflammatory marker tests. My doctor did the OATS test from Great Smokey Labs. It looks at the metabolic byproducts in your urine (created by the bacteria/yeast) to figure out what you have in your gut.
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