Weight Loss

When I first got sick - I lost a lot of weight - I was very skinny - I was so sick I didn’t even realize how bad I looked - even though my clothes didn’t fit me anymore.

I started gaining the weight back about 2 years later (about a year after starting treatment)

My bmi was good when I was skinny too

I gain weight on Lyme, it sucks.

The physical changes are hard for me to cope with psychologically. Looking at myself in the mirror, I just feel disfigured, because I don't look like myself anymore. My jaw muscles and collagen atrophied, so I have prominent cheekbones I never had before, and I have lost tons of weight and muscle; people tell me that I look good and I politely explain to them that the characteristics they are complimenting are the result of disease, and I remind them that it's not an especially good idea to make comments about the attractiveness of people's bodies! An ER nurse once commented flippantly, while I was terrified and had been unable to eat for weeks, that she wished she could have whatever I have and lose weight! So inappropriate. Also my skin elasticity is shot, nails are ridged, and my hair is very dull. I lost a tooth to this illness. My arm and leg hair is much more sparse. All these changes are just visual reminders to me that my body is the site of a battle!

So yes, at one point my BMI was 15.8, definitely very unhealthy. Currently I'm at 20, following a summer of doing pretty well, being able to eat a variety of foods in good amounts, and being more physically active than I have been in years. I think getting MCAS under control was key for me. I've also been taking a huge amount of cucurmin and doing limbic system work, which I think also helped. I ate three servings of dinner most nights - glorious! My arms and legs look more the like shape they used to be when I was healthy. At this point, I am not doing well digestively, so I'm losing again. I'm trying to prioritize fats, protein, and vegetables, all in easy-to-digest forms. I'll add coconut oil or olive oil to basically everything.

You're definitely right about needing to be your own doctor! There's not one thing that has been discovered or diagnosed in me that I did not suggest or even figure out myself. The medical folks are my consultants, but I learned that I have to be in charge of this surviving Lyme project.

Good luck!

🔹🌟RainyCloud🌟🔹 said...
I gain weight on Lyme, it sucks.

I HAVE BALLOONED ON LYME...it's even attacked my thyroid and I have hypothyroidism now. When I say ballooned I mean I will gain like 15 pounds in a month it's scary. Right now I am luckily only 30 pounds over my original weight which was a normal healthy weight. I am 5' 5" and was always about 140-145 lbs and I was happy. Like 2 months ago I was reaching 190 lbs.

And I just stepped on the scale and have lost 20 pounds in a few weeks...I just do not understand it.

I eat healthy...veggies and meats and I don't eat carbs besides luna bars...and I mean my caloric intake can't be more than 1400 a day so no clue what is happening. I just don't want to get Diabetes 2 because of this disease.

I landed in the hospital with an "eating disorder" because of Lyme and failed treatments. My bloodwork was all wrong, and everything in my body was so messed up that I couldn't gain weight. Finally they got all my electrolytes, etc in shape, and I started to be able to eat again.

I gained some more weight when I switched to a low-carb diet strangely enough because any kind of bread or grains made me feel sick. You really have to eat a lot to gain weight, and once I switched to eating mostly nuts, meat and vegetables, I actually felt like eating more. I also think somehow that abnormal brain activity and weight changes are connected, but that's my own opinion.

Herbs are really great, and I'm sure that if your treatment is working, and you are seeing improvement, your weight will go back to normal.

That's a great idea Girlie!! I have had my glucose and insulin tested and it came to about pre-diabetes levels. Before I stopped carbs...I could tell the carbs were causing huge spikes and dips and I was scared about diabetes 2. If I get any more symptoms I will def get a self tester then.

Jova- yes I hear you...I have had terrible psych stuff for a long long time and tbh I don't remember getting bitten by a tick and I live in an endemic area so it's very possible the psych stuff was Lyme all along. I remember my friends would get ticks removed after playing from outside but if the tick was in my hair and tiny...I def would've just scratched it off and never known.

You'd be amazed at the psychiatric journals I have read and the symptoms people come to the hospital for ranging from homicidal to nymphomania and they all had Lyme disease and recovered with antibiotics. However, it was basically a fluke that the doctors even tested them for Lyme. I wouldn't be surprised if we learn that many if not most psychiatric conditions are due to bacteria or parasites or viruses in the future.

I have done some serious things to fix my psychiatric symptoms. I'm still on cymbalta, adderall, gabapentin, oxcarbazamine, klonopin, seroquel, and prazosin. The last 3 I use to just sleep- because my insomnia is scary.

Since neurofeedback I've been able to lower my adderall dosage, seroquel, and klonopin. Prazosin keeps my c-ptsd nightmares at bay so I don't want to lower that anytime soon. I highly recommend TMS if you are dealing with depression still- my husband did it and he was bedridden with severe depression and he hasn't been depressed in 5 years. For me, neurofeedback has been close to a MIRACLE and I mean I have tried EVERYTHING. I meditate, I have done hypnosis therapy, DBT therapy, CBT therapy ugh, I've tried every medication known to man for psych stuff...herbs, vitamins, psych meds, even psych meds that I can't even buy yet because they are so new...and the ONLY thing that has helped is neurofeedback- pretty crazy.

jb1994 said...
Rainy and LVG - LOL I was looking for the people who gained, this disease has made my weight unmanageable! It is unreal! I wish weight loss were a problem. It's only a problem for me because it doesn't happen!

edit: and LVG if you keep gaining and losing that sounds like hashimoto's, not hypothyroid

Doesn’t Hashimotos cause underactive thyroid - ie hypothyroidism ?

Girlie - Hashimoto's means it swings from hyper to hypo to hyper etc.

If you’re able to do it, Brenda’s green smoothies are high in nutrients and can help. I did them for a while a couple of years ago. Will do again if I ever have a home. I added a 1 inch piece of peeled ginger root to mine. Gives it a little kick. I also substituted cilantro for the parsley sometimes, as I like it better.

https:// http://realfoodrebel.com/super-healthy-green-smoothie/

MooseSafari said...
I will share my story of weight-loss too, and it was quite significant for me. Went from 85 kg and very fit to a 65 kg scare-crow. There was three years constant constipation and food problems (besides all other lyme-related symptoms). I was still eating quite normal, it's a big enigma where all that food actually went....

Did you have ropeworm? Did you ever find out exactly what was causing the constipation?

jb1994 said...
WBF - you were overweight at 96lbs? You must be very short! I wouldn't mind weighing that much myself. I too am pretty short

Just a tad, LOL!!! I feel best between 93-95 lbs. Once I get over 95, my clothes don’t fit quite right, and I start to feel a little pudgy. I’m 4’11” and small boned. I look better with a few more lbs than that but feel better without the excess. At 114, I looked like a little butterball, LOL!!!