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Does anyone see visual changes to their body with lyme?

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Posted 4/28/2019 7:42 PM (GMT 0)
I’m wondering this question. They say we don’t look sick but does anyone notice changes to their body? Like skin changes or anything else?

I feel like my skin looks darker for some reason. My eyes always look swollen and usually red.. and also my skin looks wrinkly and sucked in kinda. I look more vascular in my hands and feet. And this might be weird but I notice small veins in places that they never were before. Especially in my throat..

Anyone notice things like these?
Posted 4/28/2019 9:23 PM (GMT 0)
Yes. A lot of people notice various changes. I have had the following: significant weight loss that made my body feel foreign to me, edema in my feet and legs and ends of fingers that I didn’t recognize as swelling initially (thought I looked “fat” even though underweight), skin tans and browns more evenly and don’t get sunburned like I did all my life before Lyme, nails look bad (vertical ridges, look dry and sick), brown spots on face and facial hair have diminished.

NOTE: I also have mold toxicity and am peri-menopausal, so I can’t say for sure whether mold, Lyme, or hormones caused the various changes.
Posted 4/28/2019 9:38 PM (GMT 0)
Hum. Interesting. I’m a male and over the past year and a half my genitals have darkened considerably... and I also got a brownish patch on my forehead once I started getting symptoms in my head
Posted 4/28/2019 10:19 PM (GMT 0)
What you described was my first symptom years and years ago, even though I didn't feel bad. At that point, didn't even know what was coming.

After a couple of years, I noticed I had lost the fat pads in my temple area. Telling people that made me look crazy to them, but it was real. When Lyme blew wide open in 2002, though I wasn't diagnosed until 2013, I started losing subcutaneous body fat. Skin aged, weight loss, veins much more visible, etc...

Not one doctor has been able to figure out what is causing it, but I believe it is acrodermatitis chronica atrophicans (ACA), which is in a European version of Lyme. Can't find anything else it might be. When I had Lyme under control for about 18 months, I stopped losing weight and fat. Once I had heart surgery, everything came roaring back, and coinfections became a big issue.

If you look up ACA, be aware the worst case pictures are what is usually shown, so don't panic on that. And it may not be ACA. Just my thoughts. Stopping Borrelia seems to be the key to stopping progression.

There are others on this site who are experiencing the same symptoms.
Posted 4/28/2019 10:39 PM (GMT 0)
Yep, sunken cheeks, lost skin elasticity seemingly overnight, occasional brown spots, much more prone to sunburn, lost a great deal of muscle and fat stores, leg and arm hair loss, no blemishes in three years, fingernail ridges, slightly discolored teeth, less healthy hair on my head.

With treatment of my HPA axis issues (hypothalamic, pituitary, adrenal) I now get blemishes again. And I am hoping to rebuild muscle once i can do re-conditioning exercise. And I hope that my skin texture is restored at least somewhat one day when Lyme is less prevalent and my body can use its collagen again.

But yes, I feel unrecognizable.
Posted 4/29/2019 1:39 AM (GMT 0)
Wow that's weird, I've been noticing I get a lot more brown spots/freckles on my skin/face which really bothers me. It almost looks "dirty" in some areas because it's discolored or something. I've noticed my eyes just look more tired in general. They used to be really big and now they just seem like I'm half awake all the time. Also the weight gain and loss of muscle tone definitely. Hair loss was big for a while. Oh yeah and I' break out in areas I never used to in spite of amazing diet so that's awesome.
Posted 4/29/2019 2:27 AM (GMT 0)
Wow sorry to hear about these issues but I guess it’s not just me seeing my changes in the mirror...

I will look at aca

And also are these changes permanent? I’m guessing the veiny sunk in hands are loss of collegen? Does that replenish itself once lyme is contained?
Posted 4/29/2019 2:55 AM (GMT 0)
I don't know what's permanent and I don't know if anyone here can say. It might be different for everyone. My hands are veiny but they don't have much fat which is probably why. I think a lot of the symptoms can improve over time, especially skin/hair/nails issues and weight fluctuations. But I'm not sure if you can regrow collagen as your body repairs itself.
Posted 4/29/2019 3:09 AM (GMT 0)
Yeah plenty.

  • Weight loss - lost about 6-7kg of muscle (legs, chest, arms). Haven't been able to recover it.
  • Vascular coagulation - veins are a lot more prominent
  • Eyes - dark and sunken. I always look tired.
  • Gums and Teeth - This one is starting to worry me. Gums are white around the teeth - probably Bart.
  • Twitching - random twitching around my body
  • Darker skin - this one is probably a side effect of antibiotics (pretty sure Doxy does it) - I imagine this is a common one for a lot of us.
Posted 4/29/2019 5:03 AM (GMT 0)
I lost 14 lbs within weeks - I had very good muscle tone before that

I’ve gained the weight back but I’m not firm anymore - poor muscle tone.

I lost most of my upper eyelashes and they have since grown back but I have several grey ones on my left eye (my bad side)

runningwild - I’ve lost fat and/or collagen from my temples too.

My face is gaunt now - my dad’s nickname for me growing up was pie-face

Backs of my hands and tops of feet - nothing there - veiny too

Vertical ridges on fingernails - also lost the moons but they are coming back now.
Posted 4/29/2019 5:05 AM (GMT 0)
Deadman - I had twitching all over and often - it’s gone now - that one should go away
Posted 4/29/2019 5:31 AM (GMT 0)
im thinner and i have visible collagen and muscle loss around joints and where the larger muscles are.

i cannot gain weight even if i eat a lot of calories.
Posted 4/29/2019 9:43 AM (GMT 0)
Twitching was my original symptoms. Neurologist just kept telling me benign muscle fasciculations. And of course the twitching was my fault from stress..... It started in on local spot and slowly spread through body. It’s everywhere now. It took 9 months from one local spot to becoming everywhere.

Also having a hard time keeping weight on.

For me I could literally feel this thing spreading. It started with abdominal twitching. Then a month later left leg twitching and numbness and a month later right leg twitching. And so on. But as these swmptons moved I also noticed the skin darkening following these symptoms....

I didn’t start treatment until 27 months after my tick incident. I’m gonna say it took about a year to notice visual changes to skin. Once this thing established itself through the body..

I also have the sunken in facial look. Except my tired looking eye swollen look... I could see every bump in my skull on my forehead. And prominent veins..

I knew the vascular look on my hands had something to do with this.. I could literally see the fat or collegen disappear.. it made me question so many things with all the negative diagnoses...

I didn’t know these tests were bad. I also had a neg dna connection test... anyone had experience with that one??I seen about 17 doctors before I met my LLMD. And they all told me it’s me.
Posted 4/29/2019 10:30 AM (GMT 0)
I lost a lot of muscles and gained some fat. Lost the moons on my fingernails.
But Im slowly getting back to peak shape and just noticed I now have moons on 3 fingers of each hand.

I have some problems with my gums and dark circles under my eyes.
I still look younger then my age (34) and in decent shape, so I cant complain that much.
Posted 4/29/2019 11:19 AM (GMT 0)
I’m 34 also. The moons I’m guessing is the top whiteish part of fingernail. That is crazy how that could be a symptom! I still look a few years younger than my age. The dark eyes and facial changes are discouraging . I was in incredible shape at the onset of the disease. I really believe it helped me fight this monster somewhat being healthy as I was. I definitely lost visual muscle but still thin. Actually it’s hard to gain weight
Posted 4/29/2019 11:36 AM (GMT 0)
I have had all these symptoms too, puffy eyes, prominent veins on hands and feet, skin that looks like chicken wire, sunken in cheeks, muscle wasting, ridges on fingernails, etc. i believed a lot of these to be ACA symptoms

I struggled to put weight back on too, i have been sticking to a healthy, sensible diet, and it seems like the weight is slowly coming back on. i am wondering if its a calorie thing too, as i am more physically active now, and wonder if i need to increase more calories to compensate for the increased activity

my doctors ignored these symptoms when i first raised them too, typical.

i was misdiagnosed only 18 months before starting treatment, so am hopeful that these symptoms will resolve, not sure if that is long enough to be permanent, as a lot of the studies with ACA say its irreversible.
Posted 4/29/2019 7:27 PM (GMT 0)

Deep_sleep said...
I lost a lot of muscles and gained some fat. Lost the moons on my fingernails.
But Im slowly getting back to peak shape and just noticed I now have moons on 3 fingers of each hand..

I also lost the moons except for thumbs.

My right hand now has two fingers with moons and my left has one..they’re coming back s l o w l y
Posted 4/29/2019 7:44 PM (GMT 0)
mvbessi i can empathize i saw 34docs . my hands and feet lost meat idk if itll ever come back i suspect its nerve death from bartonella as i seemed to have halt its progress . next step is to try to afford some stems and hgh injections into affected area . there is 1 pubmed with photos ive shown girlie that states 1month of rocephin did not resolve ...makes sense if its bart . a european kids post about the "wasting " lead me to answers. i went to the er for the last time where i was so happy the duc dx me with deconditioning associated with aids like wasting ! then i researched what causes the cachexia in cancer and aids deaths when the immune goes down , guess what pathogen they discovered from the aids community in the 80s , a gram neg multi flagella intercellular pathogen named bartonella . dont stop treatment, grieve for the loss of what may never return and forgive...:at least thats what i keep telling myself. thnx hw

Post Edited (bluelyme) : 4/29/2019 1:47:01 PM (GMT-6)

Posted 4/29/2019 7:51 PM (GMT 0)
blue - I’m still grieving and not ready to forgive yet - I still haven’t accepted this s—t
Posted 4/29/2019 8:21 PM (GMT 0)
I wish I got the weight loss gene. I guess it sucks on both sides though because muscle is hard to put back on.
Posted 4/30/2019 3:35 PM (GMT 0)
Weight loss of at least 15lbs. For me it seems to be fat which I hardly had any before. I hate being so thin!😣
Posted 4/30/2019 4:45 PM (GMT 0)

ToddPaul said...
Weight loss of at least 15lbs. For me it seems to be fat which I hardly had any before. I hate being so thin!😣


Everyone told me after I gained the weight back that I looked so sick with the weight loss.

mine was noticeably muscle too. I couldn't even tense my muscles.

They're somewhat better now...
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