Lipodystrophy with Lyme, not ACA

I also have that when I wake up in the morning... a sudden anxiety surge...and it's not because I'm thinking of anything stressful..it just hits me.

I also sometimes have a sweating episode with it.

running wild said...
dacarte - what part of Atlanta? I have lived in Marietta most of my life and coach at Kennesaw State. Two of my kids will be running at KSU this year. I worry about my job and getting better.

The anxiety was bad in the mornings before I got better. I still had some symptoms, primarily headaches. And I couldn't push myself like I used to and know that now. But just giving in is not an option, though the stress of this makes me weary.

I also have other symptoms going now - weird feeling in my head, at times, though I can think well, fatigue has been real bad lately. And when I tried the herbs, my electrolytes really went of of whack recently. Low sodium, low chloride, high potassium. That has improved. But it is unnerving. The glucose also is of concern.

Just want to stop the progression. Seems when infection gets worse, so does skin and fat loss symptoms.

So can you see improvement already?

I'm in Duluth.

Yes when I get a lyme flare up the collagen and fat loss are among them.

Yes I can already visually see the improvement in one week (6 days to be exact). Legitimately. Especially my face. I guess I'm just going to have a big head again lol.

Lyme and co-infections scavenge nutrients and breaks down fat and collagen (proven fact).

So not being a scientist or nutritionist, my layman's brain just thought "well just consume so much more where even after lyme and co are done scavenging there's enough left for me".

I mean these organisms are parasites. Not to compare a baby to lyme but it is similar to a fetus. You're eating for two.

I have lost mostly fat. Some muscle loss do to inactivity. I started collagen supplementation with protein essentials hydrolyzed collagen. Anxiety causes poor appetite the last few months hence the loss of the last 20 lbs. I am also on a strict no sugar, dairy and gluten diet but am rethinking about adding in some carbs. I can't afford to lose another pound.

Runningwild, I am not too concerned about the loss of collagen. Once I start feeling better it will turn around. I backslid with these diseases ( long story) but before that happened I did see improvement in my skin and collagen.

I was first diagnosed in 2009 and took 2 months of doxy at 100mg twice a day and figured I would be fine. I was floxed in 2008 and figured my ongoing symptoms were from that. Sent for an Igenex kit in 2012 and the rest is history.

Decarte, so what protein product do you use?

Patty

summer16 said...
I have lost mostly fat. Some muscle loss do to inactivity. I started collagen supplementation with protein essentials hydrolyzed collagen. Anxiety causes poor appetite the last few months hence the loss of the last 20 lbs. I am also on a strict no sugar, dairy and gluten diet but am rethinking about adding in some carbs. I can't afford to lose another pound.

Runningwild, I am not too concerned about the loss of collagen. Once I start feeling better it will turn around. I backslid with these diseases ( long story) but before that happened I did see improvement in my skin and collagen.

I was first diagnosed in 2009 and took 2 months of doxy at 100mg twice a day and figured I would be fine. I was floxed in 2008 and figured my ongoing symptoms were from that. Sent for an Igenex kit in 2012 and the rest is history.

Decarte, so what protein product do you use?

Patty

Summer, how do you feel overall?

I'm in the stage of lyme where I don't feel "bad". I get some mild symptoms that are annoying here and there and then this fat loss thing.

If I felt constantly worse like I did in the early days then I wouldn't just eat everything. But at this point in my lyme recovery journey, eating anything outside of fried foods and sugar (non-carb sugar) I don't feel bad after eating whatever I want.

So for me it's more important right now to bulk up. I'm on herbs and abx. At some point if those two things are as effective as they claim to be then it needs to take care of the lyme battle as I pack on pounds and prevent looking like a cancer patient.

I use optimal nutrition brand protein shake. The company that makes "Whey". However I got the "serious mass" product. 1250 calories per serving.

If you do go this route, the key is you have to eat your normal meals and eat the amount you normally would. This is a meal addition, not a meal "replacement". If you eat less in your meals you defeat the purpose of adding extra calories.

At first you will feel full and not want to eat but you power through your meals. And then after a few days your stomach adjust and gets use to it and your meals start feeling normal again.

decarte - Had one more question. Have you ever had frequent urination through all this? It is driving me crazy.

running wild said...
decarte - Had one more question. Have you ever had frequent urination through all this? It is driving me crazy.

I've had frequent urination phases all throughout having lyme. I wouldn't be able to say if there's a link to these specific symptoms.

I always wonder what that meant. Is it good or bad?

Is my body in such need to detox my body that it wants me to constantly excrete waste out? Or is something not functioning properly that causing it?

I don't know. But it happens in phases. I'll have a constant urination week and then a couple months of normalcy and then one day another week spurt of it, like "here we go again".

Girlie said...
I also have that when I wake up in the morning... a sudden anxiety surge...and it's not because I'm thinking of anything stressful..it just hits me.

I also sometimes have a sweating episode with it.

It's weird. It's almost like having two consciousness. The first consciousness is "you" the rational one and then there's this evil twin irrational consciousness take wakes ups with me and says "BOOO!, the sky is falling and the world is ending!!!".

I have to tell the irrational consciousness to shut the heck up and then it fades and I can go back to sleep.

decarte - Yes. I meant co-infections. Early on I did a lot of searching on the fat issue, but recently all it did was stress me out, so I stopped. Found a lot on muscle wasting and collagen loss, but not fat. That's nmot saying it's not out there. Just us discussing it shows it is.

This time around it has all gotten worse for me. Like something kicked back in. It's a struggle, after so long, to keep trying to find a solution. The problem I'm having is it seems to have gotten more metabolic, such as blood sugars rising some and more tingling in hands and feet. It was gone for a long time.

I treated with the herbs Dr. Bill Rawls has come out with, but things got worse and gut really went. Don't know if that was coincidental timing. I hate being so skinny. I like your idea of just loading up. Just have to get blood glucose situation figured out and why it is happening. May just be Lyme.

Finally, I started a series called the Bartonella Series by Debois about four days ago. You take it every three days. Took half dose first day and three days later (today) took full dose. Can hardly function. While that tells me I must have Bart, I just can't keep my job and stay at the amount suggested. Will look into the herbs you wrote down. I know Japanese Knotweed is out as it has messed with stomach before.

Just very frustrated tonight after taking the Bartonella series today. Has to be a herx. Very emotional and fatigue. And I have to get the fat loss stopped. It's all right next to muscle and joints, like they are sunken in spots. Face is showing signs too.

Any ideas/thoughts? How severe or not severe is your fat loss? Thanks.

running wild said...

Any ideas/thoughts? How severe or not severe is your fat loss? Thanks.

Severe enough lol.

I'm a 33 your old male and my lower forearm and wrist are that of a 12 year old girl. The back of my hands look like a 60 year old's as far as seeing the bones of the finger when I wiggle them around.

My LLND saw my ankles last week and said "yea, you're too young to have ankles that look like that, that's a very old person's ankles".

And then the enough is enough incident was when I sat down once and it was really uncomfortable. I'm not supposed to feel that much bone when sitting down and it's not okay.

But once again it's very isolated. The rest of my body is fine. I would even say my torso is kind of chubby (especially after this new diet) and my face filled back out. My upper legs are really muscular. My biceps and triceps are as big as they have ever been in my life (not saying much but still true).

Is your situation "isolated" too or is it everywhere?

running wild said...
First, I'm glad you are seeing some areas of improvement. I went through this a few years ago. Once I began to feel better, the fat loss backed off a lot, though there wasn't much improvement.

I can relate to all you are saying - skinny wrists, skinny ankles. I never had a lot there to begin with. My ideal weight is 173 pounds, and I actually got back up to that when I went the two years feeling better.

When I started felling much worse a few months ago, the fat loss started again. I had never really recovered from the heart surgery. By that I mean the heart part went great but Lyme symptoms of fatigue and other issues started.

Like you, I have not lost strength or muscle. But I am very fatigued and stomach causes problems. Because of blood sugar, I do not eat crazy calories until I figure all this out and feel better. Good news is my weight has stabilized, though I'm WAY too skinny at 151-156. At least it's stopped dropping.

And to answer your question - yes. The fat loss is happening everywhere. My ears even have started burning when I lay on them.

Skin looks awful and my face is sunken. I'm 61 but always had good skin and looked younger for my age. Don't think so now. And like you mentioned, it hurts to sit in certain positions because there is not much left there.

You mentioned you have an LLMD. Is that in Atlanta? I am going to change mine and need to figure out what to do. I know we can't post them on this site, so maybe you could let me know email.

That's your issue.

You can't eat a lot. Some of the blame is definitely lyme, but the other part of the blame is it doesn't sound like you take in enough calories, carbs and fats per day because of your digestive issues and sensitivities.

At least in my case I have no food or digestive issues (knock on wood), so I can pack on the pounds.

It still sucks that lyme is exacerbating this problem but at least in my case I can do something about it.

I went down another notch on my belt today. And the collagen supps are really starting to work on my ankles and wrist.

However no improvement in my knees and elbows. Perhaps this will come later (fingers crossed).

Are you taking any collagen supplements?

running wild said...

When I started felling much worse a few months ago, the fat loss started again. I had never really recovered from the heart surgery. By that I mean the heart part went great but Lyme symptoms of fatigue and other issues started.

I believe it's a symptom of herxing like any other lyme symptom. Since having lyme the last 1.5 years, I went through 4 wasting episodes. The initial. Then 5 months later. Then 5 months later. And now 9 months later to the present day episode.

The same way head fog, or nerve pain, or flu-like symptoms, or joint pain, etc comes and goes in rollercoaster type waves over time I don't see it being too much different with weight lost and wasting. Like you said each time you can gain weight back and recover, only for it to happen again later.

So I would recommend getting your gut health in order so you can eat a lot and so your body can absorb the appropriate amount of nutrients.

What I did was I stopped all ABX and herbs. I ate a anti-candida diet, I took probiotics (if you do reach out to me ask me about this because it's not your run of the mill over the counter in capsules probiotics), I drank bone broth, and I took antifungals.

I did this for about a month, month and half and never had digestive problems ever since.

Then at that point, up your caloric and carb/fat intake. And of course continue treating lyme as well.

running wild said...
Decarte- may have asked you this already but do you see reddish, hard to see circle type formation in areas that lose fat? People thought I was crazy when I first mentioned that. Now one of my daughters can pick them out. I think I mentioned that.

And you are right - the circles and fat loss seem to get worse with treatment. My concern is the stomach and digestive issues are all related to the fat loss. I've read some on that. I am now losing fat more in my abdominal area.

It's hard to make out based on your description. How is it visually "reddish" but also at the same time "hard to see"?.

Since getting lyme, I've had tiny red dots show under the skin as if blood vessels underneath may have burst. And then I've also had bigger light reddish circles under the skin like blotchy skin.

You have access to my email if you ever want to send a picture of it over, I'll be happy to take a look and then give you more insight on how it compares.

Thanks.