Lipodystrophy with Lyme, not ACA

So I have nowhere else to go with this but here. And throughout all the years dealing with what doctor has said is Lyme Disease, I've never been so low or had such anxiety.

For years I have thought what I had was Lyme Disease with acrodermatitis chronica atrophicans (ACA). Have had severe loss of fat all over body. The process seemed to slow or stop when I felt better, but it has come back full force, and I am losing fat again throughout body.

I no longer believe it is ACA because: A. I have not lost hair in areas fat loss has taken place B. What I have experienced does not look like pictures I have seen with those with ACA. C. 5 years ago I had a skin biopsy done that did not show ACA, but I thought it could be wrong.

Now I am experiencing severe loss of fat only, and it will not come back. The "light, redish circles" I have seen before losing fat in an area are back and fat loss follows. Not sure what exactly it is, but there is definite lipodystrophy.

I've been tested, in past, for everything you can imagine and all were negative, except some Lyme bands. Haven't heard of anyone else, except one person who used to post here, with similar symptoms.

Lipodystrophy can cause insulin resistance, and my blood sugars have been up. Maybe stress induced, but they have been normal before all this. No "humps of fat" have formed like with many with lipodystrophy, but the fat loss has gotten extreme. You can also get inner fat around some organs.

Really lost and weary. Really have tried to work through all this, but the thought of having problems like this, becoming a burden to my kids and looking sick the rest of my life is not something I can deal with.

No one has any answers or even any idea of what is happening. Not even sure why I'm posting this. Don't expect an answer from anyone because there is no answer. Not sure of anything anymore. Only know I've gone as far as I can go with this.

Had positive bands on Igenex and on IGG of other. That was four years ago. Just don't know. Seems no one else has this type situation, so I wonder if something has been missed.

I do or have had other Lyme symptoms - fatigue, headache, stiff neck, brain fog, etc... Just don't know.

Girlie - you and your responses are appreciated. My nature is not this negative, but situation has grown to the point it's hard to handle. Of course, that can be said for most people posting here.

Confused by this: In January, 2013, my Lab Corp Western Blot IgM was negative with only band 39 as present. Then another page shows Quant, IGM of 2.36 High. Also has IGM Interp, EIA as positive abnormal.

Then IGENEX IGM result in February of 2013 showed band 31+, 34 and 39 IND, 41 -+-+, 66-+ At top showed IGM result as positive IGG showed 39IND, 41++, 45+ At top showed IGG as negative.

The rheumotologist that ordered that said that means I have Lyme, and my LLMD seemed to agree. That confuses me, especially now with lipodystrophy.

My symptoms did improve for about 20 months, but the fat loss was still getting a little worse. Then, after heart surgery in June 2016, things got worse again. I think they were slowly heading that way juts before surgery.

Long story short - had much more fatigue for months, then in March things really got worse. Tried Dr. Rawls herb plan and had stomach issues, which are still here. Then fat loss just went crazy on body.

All doctors have said for years is I have lipodystrophy. Thought it was ACA from Lyme Disease, but I no longer think that. Doesn't follow the pattern. And lipodystrophy is SO rare.

People think of lipodystrophy, because it is so rare, and they think of AIDS because the medicine people were taking for that caused it. Over the years, AIDS tests have been done with negative results, and my lifestyle does not fit that.

So it seems to get worse when I feel worse and Lyme symptoms get worse. Again, it all confuses me. I'm asking myself is this is Lyme or something else.

Thanks. Maybe someone else will also see this and have a take on it.

Been treating Bartonellla. Had Igenex negative on that and all other coinfections, along with two other tests. I know that doesn't mean anything. Still guessing this is Lyme.

I had the same thoughts. Collagen is a protein.

He doesn't have a clue. He is even wondering if I have Lyme, but my CD 57 was about 40 when I had it tested four years ago, which tells me something. And there is the test results I wrote about above and a rheumotologist who was involved with the first Lyme Disease studies at Yale 30 years ago who believes it's Lyme.

It has been doing this since it all first started years ago - before Lyme diagnosis and no one believed I was losing fat. All the doctors just said it is part of aging, despite the fact there was a process going on where "light circles" would appear on my sin followed by loss of fat.

Just recently it got worse again, as did all my symptoms. The rheumotologist I saw to get a diagnosis just did some more tests of all types.

If you want more detail to increase your caloric intake by 100%+ without buying double the groceries and eating double the amount of food, then please let me know.

dacarte3 - Sounds like similar situation. Mine has been going on for years.

I actually was doing much better for close to two years. In October, 2011, I had a rare process happen called Sweets Syndrome. It created circular lesions on parts of my body that opened up. A month before that I had vertigo and was in ER throwing up for two hours.

The doctors put me on prednisone, which made me crazy, and now know that is the last thing you want to be taking if you have Lyme Disease. Took almost 3 years to get Lyme diagnosis. During that time, I started losing a lot of fat,which now has can be seen throughout my body.

When I felt better those two years, I actually gained a lot of weight back (all 17 pounds), but areas where fat was lost did not come back much. After heart surgery June, 2016, Lyme symptoms came back hard. Had been feeling about 85% better. And I did as you are doing - eating a lot of calories as I also have also worked out my whole life.

After starting to feel worse in March of this year, I started losing weight again and could see the circles developing that are followed by weight loss. Took Rawls Vital Plan supplements, but something in there caused major stomach problems, which I am still trying to get over.

Can only eat certain foods or my body/head reacts negatively. Weight loss has leveled out, but I still am 18-19 pounds under where I was. And the loss of fat is in legs, arms, abdomen, back, face,, you name it.

By eating cleaner, the headaches have almost completely subsided. But there is no doubt, at least in my case, it is a process of fat loss. No muscle loss involved. I am also taking Bicillin again, along with collodial silver, digestive enzymes and Bacteria Chord. Hope to find answers, but doctors are stumped by what they are calling lipodystrophy.

You mentioned there's a lot of things you can't eat. There was a time where lyme made me allergic to a lot of foods as well.

I normally eat a paleo diet. And then I work out consistently, hoping this would help.

But then I got to the point where I made personal decision to temporarily not eat a strict lyme/paleo diet. Because I came to the realization that I need fat and I need it now.

I don't eat junk food or sweets but I eat everything else to address this issue. I can get back to my previous diet and sculpt back up through exercise later, but right now I need fat. So I consume a lot of carbs (that eventually turn in to fat), a bunch of protein (I mean a bunch) and then actual collagen supplements.

A paleo/lyme diet at a high caloric intake, may produce weight gain but not fat gain. You/I need fat.

So I took the approach of someone like an athlete or hollywood actor that needs to pack on the pounds in a shorter period of time. I don't eat until I'm kind of full, I eat until I'm stuffed. And then twice, in between meals, drink down a 1250 calories, 50gms of protein (each) shake per day.

Once again it's only been a week and fat and collagen are noticeably returning in these problem areas.

After I gain 15-20 pounds of some muscle but mostly fat back, I will then get back to routinely exercise and re-sculpting my body.

Post Edited (dacarte3) : 7/23/2017 1:59:57 PM (GMT-6)

dcarte3 - I hate it you are going through this also, but knowing someone else is to provides some hope there is something we both can do about it.

Trying to get my stomach back so I can put more fat in it. I eat a lot of protein,as you mentioned. The problem, as you stated, is it doesn't put on fat/collagen. And it only seems to get worse when I have a relapse.

I don't know if you have this happening, but there are these circles I mentioned. I know when one appears, and they are very hard to see, that is where the fat will be lost next. It sounds like something a lunatic would see, and trust me, I was treated for years like I was a lunatic before diagnosis. But they are real with me. My daughter is good at finding them.

You are right that carbs are needed. I'm trying to get more of them. Right now my blood glucose has gotten a little higher. They think it's from whatever is happening. I think it is from stress of it all, cortisol and adrenals. They all go together. That is why I've been holding off on carbs, but may say the hell with it and just try.

Have tried collagen supplements but had trouble with some. What do you use?

There is so much that is not known about Lyme and co's. But your point is well taken that we both have Lyme and this is happening can't be coincidence. Thank God I don't have twitches/weakness or I'd freak about ALS. Controlling the mind is half my battle.

I coach college cross country and track, so I don't like looking weak. Don't like it anyway. have you had any stomach issues? And how long have you had symptoms/did it take a long time to get diagnosis.

Appreciate the conversation. Thanks.

running wild,

I was feeling the exact same way. It sucks you are also going through the exact same thing but it does bring "comfort" to know there's someone else out there I can talk to and relate too. And kind of confirms it's lyme related.

Not that, that is necessarily a good thing but at least it's not "something else" on top of lyme. Muscle twitches and weakness are common lyme symptoms as well. Lyme being the "great imitator". However I don't experience muscle weakness anymore but some mild muscle twitching here and there for a few moments every now and again.

I don't know your food sensitivities or how severe they are, so I don't want to steer you in any direction here. But for me I just did the paleo diet because it is always heralded as being a "lyme" friendly diet. I don't necessarily have any food sensitivities any more after I greatly improved my gut health.

But when it started happening again I said enough is enough. I just thought to myself how does healthy athletes pack on 10-20 pounds in the offseason. They do it in a healthy way, not eating cup cakes and pizza all day. So I did some research. And it really is as simple as stuff your face all day. Feel full and stuffed and then take 5 more bites.

Carb loaded meals and 3 times the normal protein intake (and of course don't forget your vegetables).

Like I said in one week, face is fuller, jeans fit better, there's more cushion when sitting down, loosen my belt one notch and my wrist and hands are recovering.

You are a track coach. So you are very active and burning a lot calories I would imagine. Are you really re-couping back all those calories throughout the day?

I ask because I worked out consistently and I don't think I was replenishing my body enough, too keep weight, and rebuild muscle appropriately.

On top of that we both have lyme scavenging nutrients.

I blame both lyme and me not being cognizant enough to know I can't push myself as hard having lyme and if I do I must properly and maybe "overly" replenish.

summer16 - have you experienced what decarte and I have experienced? When were you diagnosed and how long after symptoms started did it take. Is it fat loss and collagen or muscle too? Mine took 11 years to diagnosis. .

decarte - Your thoughts and mine are so similar with this. And I agree it's nice to have someone who can relate and is there, though I wish you weren't. Same for summer16.

My stomach still won't allow too much, and my concern for glucose is something I have to consider. It could be cortisol related for my glucose. I wake up with a frenzied feeling every morning about 7:30 or 8 with it. That was gone for about two years until this came back.

Hate not being able to push myself like I could. I'm older but always stayed in good shape and had good skin. "Them days is gone." Now I just want to get back to close to where I was. And the junk food statement is correct. Traveling to track meets all over the place caused bad eating habits and stress. That played a big part in this coming back.

How did you get your stomach bad in good shape? Just diet or other ways?

This is great we can swap ideas and help each other. I have been frustrated with not finding those similar, though a lot have lost both muscle and fat.

running wild said...


I wake up with a frenzied feeling every morning about 7:30 or 8 with it. That was gone for about two years until this came back.

Wow, me too running wild. This fat loss symptom also return alongside and with the waking up in the morning and the first 10-15 mins is anxiety filled (for no reason). I just lay there and breath and try not to think about it and it subsides 10-15 mins later.