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Avatar universal

Looking for anyone who has Acrodermatitis Chronica Atrophicans with Lyme Disease

I have what doctors believe is ACA, a late manifestation of late Lyme Disease. My skin is atrophying and I don't know if it will ever stop, based on what I have read.

Has anyone had this before and stopped the progression through antibiotics or other means?  It is all over my body and getting worse. I'm in a panic as no one in the U.S. seems to know what to do. I've read so much of the same information.

I just want to know if it can truly be stopped and if dermatological procedures can help reduce the look of the atrophy and sunken spots. Without trying to sound rude, I am not looking for what it is how how it manifests. That I have l learned. Just how or can I truly have a prayer of stopping progression and working to get skin and sunken areas back to some degree. I have seen this coming fro about three years but no doctor would believe me until tests now show it to be true.

Thanks so much.  
119 Responses
Avatar universal
All that's way above my pay grade -- sorry!

Let us know how it goes -- take care -- we'll be hanging around the water cooler here when you get back.
Avatar universal
Cave - You bring up a good point about "same but different." That's what throws me a lot. My main goal at Cleveland Clinic would to be rule out andy connective tissue disease autoimmune related. Don't know how that would work with Lyme in the mix.

Jackie C.  - Your pay grade? Did you not get the million dollar check I sent you?  
1763947 tn?1334058919
The only blue I am is the mental kind too. I wish it would help me.
1763947 tn?1334058919
BTW, I have heard negative things regarding the Cleveland clinic and lyme. Just to think about.
Avatar universal
Ah, the check was from you!  My accountant was wondering.  >jk<

I am wondering tho why the Clinic would take B.afzelli seriously but not B.burgdorferi.  

Per wiki:  "Among thirty Borrelia known species, it is one of 4 which is likely to infect humans causing a variant of Lyme disease."

Is it because B.afzelli is more likely acquired abroad and the Clinic has a worldwide clientele (she asks cynically)?  Seriously, I'm wondering.
1 Comments
Jackie, can Cleveland diagnose ACA?
Avatar universal
"might"

Small word. And said hopefully. And not the "L" word. (grin)
Avatar universal
Being fairly new to the Lyme Disease world, I have been amaazed how badly misinformed the medical world is concerning Lyme Disease. It shouldn't matter what you "have" or don't have. It's like I said to the last infectious disease doctor I saw. When he said ,"You don't have Lyme Disease," I mentioned to him I never insisted I do. But I said if I don't have Lyme, what do I have?  When he said it's not that easy, I folwed by mentioning I never said it is easy, but that is what I camer heere to find out since you are an infectious disease doctor. With that, we were done, and I have not paid my copay yet as a simple protest.

Those of you who have been through many years of this - I am sorry what you have had to deal with in your life. Ignorance, arrogance, rudeness, doubt, mockery, ridicule... I've sen that in less than two years, and if I had not continued to push for answers, I would be sitting here without any clue what could be happening.  

Jackie has a good point. All should be taken seriously because lives are in limbo and individual worlds can crumble without strength or help,,, or both.
1763947 tn?1334058919
Please see the documentary "under my skin" if you haven't already. Its free online. You could also Google ILADS vs IDSA ( infectious disease Docs association) to see what the fight is about.

We need more states, like Va, to pass the law that Drs  HAVE to tell their patients that even if they get a negative Lyme test result, it does not mean you don't have Lyme.

That will be a good starting point.
Avatar universal
I was just scanning your previous posts and found this again:

"ALong with that, the LLMD is concerned now instead of having b.afzelii, I have Lyme Disease, which has caused an auto immune reaction causing lipodystrophy."

Lipodystrophy ... just looked it up -- sounds like it's mis-distribution of the fatty tissue in the body, which matches with your description.  

So the doc is now thinking might be Lyme (b.burgdorferi) instead of b.afzelli).  Okay.

But then he goes another step to think it's an autoimmune reaction, meaning .... that you've got Lyme and it's causing your immune system to react against your fat cells.... er, 'adipose tissue' or whatever the medical term is.

I'd be very cautious about accepting the autoimmune reaction idea.  There is a view held by less progressive thinkers in the medical profession that after you get a few weeks treatment with doxycycline for a Lyme infection, you are -- no doubt about it -- CURED of Lyme.

Any remaining symptoms are then called 'post-Lyme syndrome' -- meaning that you still have the same symptoms you had a little while ago, but now, because you've had some antibiotics, you can't possibly have Lyme disease, and it's just your immune system overreacting to the now-vanquished Lyme infection.  This is called 'post-Lyme syndrome.'  Google it, you'll find it in lots of places.

Lyme docs (LLMDs) say this is balderdash, and I tend to agree with them.  Logic says that if you still have the symptoms, then you didn't get a cure.  I don't know of any other bacterial infection that would cause a doc to say that if you still have symptoms, then you're not sick, but your daffy immune system just thinks you are.

The reason these docs have come up with 'postLyme syndrome' is to have a reason that a few weeks of doxycycline didn't cure the symptoms.  The problem imho is that a few weeks of doxy doesn't usually cure the INFECTION.  Infection->symptoms.  Therefore inadequate treatment.

This 'postLyme syndrome' position is held firmly by the IDSA, Infectious Disease Society of America.  Your doc may be playing for the other team.

I hope I am wrong and he's seeing something different or has different reasoning going on, but...not all LLMDs are created equal.  There is no test to be an LLMD, and it's still such a new disease that the docs are all over the place on it, so your doc may firmly believe he IS a Lyme specialist, but he may be using the IDSA playbook.

I would get another opinion.  I recall if this has already been communicated above, but you can email to

                contact   [at]      ILADS    [dot]     org

and tell them where you are located (near what big city or what part of which state) and how far you can travel, and they will send you name(s) of ILADS members nearby.  You don't need to tell your current doc you are getting another opinion, but please do consider it.  

Let us know if you have any questions, okay?
Avatar universal
Thanks. From the moment he said something about autoimmune, I have been confused. In my mind, it may be, and I can't even swear this is b.afzelii involved, but he has not dealt with b.afzelii before, therefore thinking autoimmune instead. That is why I have heavily considered keeping the Cleveland Clinic appt. in rheumotology. That wouldn't be to confirm Lyme Disease, but to try and rule out the auto immmune aspect.

MyLLMD has been very good getting back with me and trying to come up with answers, His daughter has Lyme Disease, which is why he gained such an interest. He did mention he had another patient with similar symptoms, and once treated with antibiotics for a while (he has me scheduled for at least three months IV), the loss of body fat or collagen  stopped. That fits the ACA pattern.        
Avatar universal
Murph,

I hear you.  It sounds like you're working through things very thoughtfully.  Your doc sounds like a solid citizen who is trying hard, but keep in the back of your mind that he's not that familiar with Lyme by his own admission, including not having dealt previously with b.afzelli.  That he has had a patient with symptoms similar to yours is encouraging, but please consider having the diagnosis confirmed by another MD more conversant with Lyme and its nasty little cousins.  

I understand that you are going to the Cleveland Clinic, but I paused when reading that the appointment is with the rheumatology department.  Infectious disease docs, neurologists, and rheumatologists are three disciplines well known to be [often willfully] ignorant of Lyme disease, as it simply doesn't fit their existing disease paradigms.  I just searched on line for "cleveland clinic 'lyme disease' " and will send you separately some of the results.  It's not particularly encouraging, tho the results are a few years old -- but it may indicate an institutional mindset at work.  

There is a lot of that in the Lyme world, too, where the mainstream docs are accustomed to having figured everything out a long time ago, and the rest is just details.  I remember when AIDS was new and no one knew what it was all about, whether it was communicable like the common cold, and so on.  The medical mainstream was in disarray, not knowing what it was dealing with and having no paradigm for approaching any ailment outside the received wisdom -- on the assumption that everything worth knowing about disease was already known.  Lyme is much in that category as well:  the entrenched medical interests are overall not comfortable with emerging diseases.

While preparing for the visit to the Clinic, I would in your situation be running on a parallel track to locate and line up additional avenues to pursue -- and parallel rather than serial.  I know it's not the normal way to approach the medical world, but the institutional format the docs now inhabit calls for out-of-the-box thinking and tactics by the patients.  (IMO, of course.)
Avatar universal
I'm lost on all this and now very frustrated. My LLMD was goingto start clindimycin Iv with Gindimax, but the homne company that was setting it up cannot because it is out of state. Has to be one in GA. Haven't heard another word in two days, and the skin (fat loss) continues to get worse. Left a message yesterday but have not heard back.

IF this is ACA, the longer it goes, the more "mostly irreversable damage"  gets worse. Think I have stressed myself out to the point stomach is hurting.

I sound like a big baby, but I am so ready to get started on all this even knowing what misery it may cause. And I cancelled my appointments at Cleveland Clinic. I think you were right about how they might look at it all. Not sure what to do. I can get into Jemesek Clininc in a few weeks, but it does not take insurance and a few weeks is a long time right now. SUggestions from all of you I now respect and trust?      
Avatar universal
Sorry it's not moving along as hoped and planned.

Cleveland Clinic might be good ... depends on the doc.  You might go anyway and listen with a cautious ear to what they say.  Data is data, and then you can deploy as you see fit.  Might give you an idea for the next step, even if it's elsewhere.

I have heard of Jemsek but know nothing about him/it first hand or otherwise.  Could they put you on their cancellation list?  

Given your penchant for research, have you located medical schools and treating/teaching hospitals that have an interest in ACA?  When I get a minute, I'll poke around on the net and see what I can find.

Didn't mean to scare you off of the Cleveland Clinic.  Even if they are not the final answer, they may have useful bits of information that you could use to plot your next move.

My approach when feeling boxed in is to move ahead on all reasonable fronts simultaneously.  Make a list of the top [six] things/places/docs you would like to follow up on and then go for it.  That will give you focus, and then modify as data comes back as to expertise, availability, distance, cost, etc.

I think you are doing fine, considering what you are up against.  Some would just give up, but you aren't.  Keep us posted.
Avatar universal
Don't know you, but I consider you a friend. I appreciate your help, comments, ideas, encouragement, etc...  No one here understands what is going on with all this. It's like bing out there by yourself ignorant and not knowing what to do next.

With you and others on this site, a lot of that is taken out of the equation. Y'all (okay, I am still southern) have made this much more tolerable. Thanks.  
Avatar universal
Oh, you're quite welcome .... and when you are all healthy again, you'll maybe find yourself hanging around here anyway, just to get your own back against the bugz, just as others of us have done.  

It's a group effort, and you're one of us now.  We each have our own views and favorite topics, and it all blends together.  

I've been doing some digging on ACA, reading up on it, and will post or PM you with anything that looks like it might be of interest.

Welcome to the Lyme underground.  We're a hearty crew.
Avatar universal
Still hven't heard back from LLMD concerning picc line and antibiotics. Not sure what to make of it. As mentioned, the company that was going to do the IV cannot because of state regulations, but now I have heard nothing and left two messages. Don't know if LLMD is irritated that I asked about the chosen meds or what. I did tell him I am just nervous since this is all new to me. But where I was about to start full, heavy treatment, I find myself instead in neutral,,, again. I like the LLMD and believe the plans he comes up with have thought behind them. Just now?? It will take weeks to see another, but I can't imagine a doctor would just drop without a word.

  
Avatar universal
Well, the doc might have just run out of time in the week, or had a family emergency, or was kidnapped by Martians, or who knows.  I know it's hard to wait, but you may well hear on Monday.

I've been through the mill waiting for docs, too, so I hear you.  

Hang on!
Avatar universal
You're right. Waiting has never been my in my nature. Then again, I ran track and coached for so many years, you were supposed to get there as fast as possible. My son has the same nature,and the good thing is it will pay for his college, even if it drives me crazy at times. I now know what my parents dealt with :)

Seems like it's in your nature to dig facts. I enjoyed it as a reporter and find it helpful in life. I tell my kids if "A" doesn't come through, then go to "B." If B doesn't work, FIND "C." That's what I had to do covering stories with sources fell through or backed out of talking. You have a knack for that. Just curious, if I'm not being too nosey. What kind of work did/do you do? You write like an English major or technical writer/both.

Avatar universal
Yeah, I like figuring stuff out.  I do business consulting.  Taking bits and pieces and trying to make sense out of it all.  And after enough bad encounters with the medical community, I got a Merck manual and never looked back.
Avatar universal
Hope everyone is hanging in there. I have been through the battle of getting mediccinhe started in Georgia, as in picc line for clindymcin. Doctors here of no help, so I will head to Tennessee to get it all started this week. It's a jok, but not a funny one, on how bad the medical system is with Lyme Disease. I understand that more and more. The doctor here in Atlanta who told me I have Lyme  Disease won't even help out so I can get picc line at local hospital. Georgia is real tight on who can service it also.

In the last couple of weeks, I have had tremendous fatigue. Much more than usual. Also have lost more fat on body. Guess it's part of it. WOuld like to hear updates on others.    
2 Comments
Murphgolf hi, I stumbled across this medhelp.organization and was surprised to see you and others talking about ACA.
I, myself have lyme disease and 2 co infections.
I also advocate on Facebook for anyone who wants or needs help with lyme disease.
My story is on a Go Fund Me account "Carolyn Hamilton" "Medical" "Lyme Disease taking a life" it's not very well written, although it tells my story. And, no please don't donate, just read it if you want.
A good friend of mine who has lyme disease and ACA - she just told me a week ago about the ACA ~ I really didn't have a grasp of what it meant, until I read up on it.
I know that she is very depressed, like most of us, why wouldn't she?
I was amazed at how devastating this is.
I sent her a copy of this medhelp section and haven't heard back from her.
I realize that these were written a few years ago.
I'm wondering how you are doing?  
Her name is Cindy Haendler on Facebook if you want to reach out to her.
I've been praying for both of you and anyone else with lyme on a constant basis.
I'm just hoping that you have made progression, if you are not up to it, I understand.
Please feel free to contact me on Facebook or call or text me.
415. 309. 8854.
I hope that you found some help.
Any suggestions you might have for Cindy would be great.
I honestly hope you are doing better.
I've another friend who's had lyme since age 8.
She now has Speech Apraxia.
I'm so angry with the way lyme disease has been dealt with or the lack of.
Thank you for your time.
Blessings,
Carolyn
Murphgolf,
I wanted to ask you a question and poof, it's gone.
Maybe it was how long had you gone with lyme disease before treatment and basically how long have you had lyme disease.
Thank you.
Carolyn
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