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Lipodystrophy with Lyme, not ACA

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Posted 7/27/2017 1:24 AM (GMT 0)

running wild said...
Decarte - what you describe "reddish circles under the skin like blotchy skin" is very similar to what a am trying to describe. The patterns aren't exactly circular but almost egg shaped. When I can, I'll send a picture of one.

It's getting much worse quickly, to the point I'm almost in a panic. My stomach is also giving big problems.

I went through a panic too when it was happening so rapidly at first. I don't know if it would have stopped on its own or did I stop it by changing my diet and taking multiple supplements.

What kind of stomach issues are you having?

The problem (besides lyme) is obvious. You are probably eating less because of your stomach issues and then on top of that you are probably absorbing an inadequate amount of nutrients.

What are you doing to address your gut health?

The good news is, you can definitely turn it around. But you have to be able to eat and eat a lot.

Have you ever thought of consuming supplemental "shakes"? With the nutrients, protein, and carbs in liquid shake form your stomach may (keyword here is "may") respond better to it than solid food.
Posted 7/28/2017 9:49 PM (GMT 0)
dacarte - (Have also sent you an email).

I know when I felt better the loss of fat process, if nothing else, slowed down or stopped. Could still see where problems were. Once I started feeling much worse again, the loss of fat came back bad.

It came back in the middle of taking herbs and stomach issues. Don't know if herbs or some of them, caused the stomach problems. But that was the start of a bad downward spiral.

My stomach issues are multi. Not digesting food, constipation, nausea, and yes, eating a lot less. Been eating even less since blood sugars have gone up some,which can be caused by loss of fat (or stress, cortisol). Just thinking too much but hurts to eat a lot.

Taking probiotics and something called Restore, a mineral supplement I had read good things about. Would like to try heavy calorie shakes, but have to stay away from dairy, soy, gluten, sugars, so many things.

Andy ideas? I have lost to fat loss, but I know some of that is from stress/diet.
Posted 7/28/2017 9:52 PM (GMT 0)
One other note: I can see the bones in the line that runs down the middle of my chest/abs. Had heart surgery last year and there was a lot more fat in those areas not long ago.

Where there is an area next to a muscle, I see to lose fat.
Posted 7/29/2017 4:12 AM (GMT 0)

running wild said...
One other note: I can see the bones in the line that runs down the middle of my chest/abs. Had heart surgery last year and there was a lot more fat in those areas not long ago.

Where there is an area next to a muscle, I see to lose fat.

I understand. In my problem areas the same is/was happening. Like the muscle is fine and maybe even growing from exercise but the meat around it is reducing.

At first I'm thinking is it because I'm just "leaning" up from exercising, but you can tell it's different and not "okay".

I didn't receive your email. I really want to give you my LLMD information. She's 15 mins from you.

Perhaps enable your email so I can email you?
Posted 7/29/2017 8:04 PM (GMT 0)
dacarte - I have enabled my email. Might give it a shot to see if it is working.

Everything has come back and losing more fat. So frustrated and anxiety to go with it.

I appreciate your thoughts/input/experiences.
Posted 7/30/2017 3:56 AM (GMT 0)

running wild said...
dacarte - I have enabled my email. Might give it a shot to see if it is working.

Everything has come back and losing more fat. So frustrated and anxiety to go with it.

I appreciate your thoughts/input/experiences.

Email sent. Feel free to email me about anything lyme related.

Thanks.
Posted 7/30/2017 4:20 AM (GMT 0)
When you meet with the LLND that I sent via email, she will get you started on a treatment plan. Good news is, she doesn't charge an arm and leg like other LLM/NDs might. I believe her hourly rate is $125.

Think about drinking bone broth and taking antifungals for yeast/fungal growth in your gut that is making it very unpleasant to eat.

Because your fat loss issue is not going to turn around if you can't consume many, many calories.
Posted 9/30/2020 6:09 PM (GMT 0)
I have had similar experiences with fat loss. I have Lyme and co's. I just came across this site. I'll be researching more. Thank you so much for posting this. You are definitely not the only one experiencing dramatic fat loss.
Posted 10/1/2020 9:57 PM (GMT 0)
LuckyBuckeye - Sorry to see you have the loss. Have you had a skin biopsy performed to see what is happening? I finally did in May of this year, and it showed "mid-dermal elastolysis, which is loss of elastin.

According to online information, loss of elasticity in mid dermal can be caused by a number of things, including autoimmune. Of course, there is no mention of Lyme Disease, but there are a good number of people on this site experiencing the same thing. Girlie has mentioned some of hers has seemed to improve, at least the area where skin seems a little tighter and will go back in place after pulling it. Very frustrating.
Posted 1/27/2021 12:45 PM (GMT 0)
I am also experiencing loss of subcutaneous fat in my hands and right forearm. I had a pinching like feeling in May in my right forearm and then an indent in my skin. It is itchy/tingly and if I use my arm a lot it aches. Originally I thought I developed varicose veins from doing so many planks. I haven't done planks since May, but nothing has improved. My other forearm doesn't have the indent at this point, but it is itchy and tingly too. Wondering if anyone found anything that helps. I think it's acquired lipodystrophy. My face has aged so much in the last few months.....loss of fat under my eyes. Due to horrific MCAD flares when I try to treat, I have been unable to tolerate herbals or abx, and only use cannabutter (cannabis infused coconut oil) to keep Lyme symptoms at bay.
Posted 1/29/2021 2:12 AM (GMT 0)
dmw - When I originally posted this a few years ago, I mentioned "lipodystrophy." But there is lipodystrophy, which causes fat loss and the build up of fat in certain areas, like on shoulders (causes a hump). Lipoatrophy is more just the loss of fat, which seems a more appropriate way of describing it.

How long has this been going on for you? What do you mean by "indent in the skin? And can you see it in other parts of body you didn't mention? I was able to stop it when I got so much better in early 2015 to June of 2016, then had heart surgery. That brought back Borellia, and fat loss started again.

After having a skin biopsy, I now know I have lost most of my mid-dermal elasticity. That is why it is important to stop the Borellia as soon as possible - to keep the loss of fat/elasticity in check. Once you lose mid-dermal elasticity, there is no procedure to get it back. That may not be what is happening with you.
Posted 1/29/2021 1:02 PM (GMT 0)
Yes, lipoatrophy is probably what is going on with me too. I don't have the build up of fat in other areas. I have an indent in my arm which I originally thought was muscle atrophy, but I don't have any loss of strength. I have lost all the fat in my hands and they have bulging veins, and my forearm does too. My forearms are both itchy and tingly. I don't have the fat loss in other places except my face is aging quickly. I don't know how to post photos on this forum. Will send them to you in an email.

This started in May for me. As I mentioned, I have been unable to treat due to MCAD flares which make me so full of inflammation I develop bone spurs...I have them everywhere. I flew to see a LLND on the other side of Canada and he didn't know how to help me either. So I am on my own and have been for almost 8 years. Everything I try to use to treat makes me worse.

Were you able to get this under control with antibiotics or herbals?
Posted 1/29/2021 4:29 PM (GMT 0)
i believe the tissue loss is nerve damage then loss of circulation to affected areas . cold mild wind felt like matches on my skin was a sign of the damage. i believe it is borrelia bart and mycoplasma being intercellular. i was able to halt progression with bvt , zhang bart formulas and various other herbs. like dr martz said we're in a interesting treatment place where we need to treat hard enough to get pathogens off nerve bundles but not so hard that dead l LPS damages more nerves surrounding. welcome keep us posted
Posted 12/4/2022 5:52 AM (GMT 0)
running wild, what you are describing sounds a bit like Lupus Panniculitis or Lupus Erythematosus Profundus. Fat loss is preceded by a rash and tingling or numbness in that disease.

I am suffering from something similar that is along the lines of Acquired Generalized Lipodystrophy. I have lost most of the fat in my face, arms, legs, butt, hands and feet. My trunk/abdomen is the same as before and fat can still accumulate there. I also have a fatty liver. I've been struggling to find an answer for 8 years.

I think this may be caused by peripheral insulin resistance, but I have not been diagnosed with it. I also have not been diagnosed with Lyme.
Posted 12/4/2022 9:10 PM (GMT 0)
Lin7 - I appreciate your thoughts and sorry you are dealing with similar.

Based on a lot of tests, doctors have ruled out Lupus, though I do have Sjogren's Syndrome. Are you having any fat build up on shoulders, which would indicate lipodystrophy, rather than lipoatrophy?

In my case, I've lost it everywhere, head to toe. There is no mid dermal elasticity left. I did nit a positive on band 58 on the Lyme immunoblot, which is related to the European form of Lyme and ACA.

What type Lyme tests have you had? There has to be a reason you are having those symptoms on body, unless you have had it happening since you were a kid.
Posted 12/5/2022 7:38 AM (GMT 0)
I'm losing fat generally, with slight buildup on lower abdomen. No buildup anywhere else.

I have tested negative on a western blot.

I had a flu-like illness with jaundice, abdominal pain, body rash, night sweats, extreme fatigue, and many other symptoms that lasted on and off for about 9 months, with recurring fevers in the later couple of months of that period. Then I got mostly better and settled into a chronic phase where my skin and fat has gradually atrophied. These symptoms get worse when I drink alcohol or eat chocolate or sugar. Large amounts of carbs are also bad for it. Several of my family members, friends, and many of my coworkers also have the illness. It was at least at one point highly contagious, and we all seemed to have caught it as part of an outbreak.

I have done hundreds of tests and the only thing that has ever been abnormal is fatty liver on ultrasound, and low B12 in the beginning.
Posted 12/5/2022 9:14 AM (GMT 0)

Lint7 said...
running wild, what you are describing sounds a bit like Lupus Panniculitis or Lupus Erythematosus Profundus. Fat loss is preceded by a rash and tingling or numbness in that disease.

I am suffering from something similar that is along the lines of Acquired Generalized Lipodystrophy. I have lost most of the fat in my face, arms, legs, butt, hands and feet. My trunk/abdomen is the same as before and fat can still accumulate there. I also have a fatty liver. I've been struggling to find an answer for 8 years.

I think this may be caused by peripheral insulin resistance, but I have not been diagnosed with it. I also have not been diagnosed with Lyme.

Hi Lint7 - welcome to the forum.

Are you going to get tested for Lyme disease?
Posted 12/5/2022 6:41 PM (GMT 0)
The western blot is very unreliable for Lyme. I went 11 years with doctors using western blot and CDC criteria for Lyme, which is ridiculous, until a dcotr sent labs to Igenex and I tested positive. Treated for about 18-20 months and was able to get better.

Now I know doctors use the western blot as if it is gospel for Lyme when it is common knowledge you really have to get lucky to test positive with it or meet CDC standards. Look at your symptoms, also. Not saying I know you have Lyme, but you may never get a test positive with western blot.
Posted 12/6/2022 5:51 AM (GMT 0)
@Girlie, thank you, yes I am looking into testing at either Vibrant Wellness or Igenex, but have doubts about the veracity of the results so trying to determine if maybe I need to test at both.

@running wild, in Canada there seems to be wide acknowledgement that the western blot is not sufficient, so I am looking into further testing. I've spent so much money on testing already with dubious results, that I'm hesitant to spend more.

Did either of you cure your illness or improve it permanently? I haven't seen many chronic lyme success stories.
Posted 12/6/2022 6:48 PM (GMT 0)

Lint7 said...
@Girlie, thank you, yes I am looking into testing at either Vibrant Wellness or Igenex, but have doubts about the veracity of the results so trying to determine if maybe I need to test at both.
.

vibrant seems to be a second tier lab with less robust validation studies published

they seem to go to market based on most infections tested in a single assay for the lowest fee - which while attractive from a cost perspective does not seem to fit with what we know about the biology of these infections - where different test techniques are often needed for each

Igenex has a good name in this field - offer many different test technologies - and seem to be about the most reliable in the USA for Lyme etc

Armin labs is about the best in Europe


none of these tests are perfect though - and there are a great many nuances of testing for each individual infection
so if it were me - i would do as you suggest and test with several different tests and take a view based on the

for Lyme i did:
-Borrelia IgG IgM ELISA
-Tickplex basic array - tests for antibodies to multiple lyme species - and round body forms
-Borrelia - ELISPOT - test white blood cell response to borrelia - so a different test pathway to the above
-CD57+ - cell count - a white blood cell that is often very low in chronic lyme - andmay also give a clue

then various co-infections - mainly through ELISPOTS
Posted 12/6/2022 7:23 PM (GMT 0)

Lint7 said...
@Girlie, thank you, yes I am looking into testing at either Vibrant Wellness or Igenex, but have doubts about the veracity of the results so trying to determine if maybe I need to test at both.

@running wild, in Canada there seems to be wide acknowledgement that the western blot is not sufficient, so I am looking into further testing. I've spent so much money on testing already with dubious results, that I'm hesitant to spend more.

Did either of you cure your illness or improve it permanently? I haven't seen many chronic lyme success stories.

I am considered to be in remission.
I am fully functioning - including back to work after being off for about 6 years.

I have a few issues - my short term memory is still suffering somewhat and my very first symptom isn’t completely better. ( pain in the upper left side of my back - around the scapula area.)

But I’d say those two symptoms/damage are about 80% better now. It may be as good as it gets.
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