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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
I haven't heard of Invanz ... a usual approach to cyst-busting is Flagyl, along with another antibiotic (not usually doxycycline) to kill the then-exposed bacteria.  Your doc sounds like he's trying, and that's great.  (But keep digging on your own.)

And ... Flagyl is cheap.

Keep us posted --- best wishes --
Avatar universal
I don't see where Invanz is used for cyst-busting. But is IS used for "Complicated Skin and Skin Structure Infections" which may be why your doctor is suggesting it.

It's administered via IV or IM.
Invanz (Merck) generic=Ertapenem

I'd suggest you read the pdf that Merck has published (above) to acquaint yourself enough to ask the right questions of your doctor. (Yeah, those pdf's are difficult for a beginner, but since you say you have research capabilities it should be easier for you.)

Avatar universal
Thanks for your help and all the information.

Very concerned about the iv and antibiotics. I've always been susceptable to problems with many different meds. I don't know how he figured it out with the tests he did, but an allergist said to me once, "I' would guesss you are hard to medicate." He was right.

That leadsto my nervousness about some of this, especially iv. On the other hand, I have to do something as this is getting worse. I'm normally pretty good about taking things in stride, but nervous about wwhat to do, which is causing stress, which....... Lyme Disease is like be cornered and not knowing which way to go to get out.

But I thought I read penicillin is good for late stage European Lyme if used with a cyst buster. I like my doctor and do not want him to hink I am always questioning his judgement, but there is a lot at stake here. Just not sure which way to go. If it wasn't so serious, it would be funny.      
How do I get diagnosed here in USA?  I truly believe I have ACA but need a DOCTOR!   Do you know of any such MD?   I am so desperate!
Gottadance9, Did you find any help? Contact me @ family-***@****
Avatar universal
"I've always been susceptable to problems with many different meds."

I am too---- which taught me to take a sliver of a med instead of the rx'd dose. (But that doesn't work with Lyme abx usually.)
When pharmacogenetics become in general use then perhaps we can find out just what drugs we can safely take and at one dose.

"But I thought I read penicillin is good for late stage European Lyme if used with a cyst buster."

I used bicillin LA---- IM and no cyst-buster and achieved a very good remission that lasted for 3-4 years as long as I stayed on bicillin LA.
Avatar universal
Yet another correction! Geesh!
"perhaps we can find out just what drugs we can safely take and at WHAT dose."
Avatar universal
" I'm normally pretty good about taking things in stride, but nervous about what to do, which is causing stress, which....... Lyme Disease is like be cornered and not knowing which way to go to get out."

That is a direct side effect of Lyme -- it messes with the endocrine system, and thus mood and the ability to cope.  Can be quite disorienting, but once the Lyme is treated, your ability to cope will return.  

Mantra:  "It's not me; it's the Lyme.  It's not me; it's the Lyme."  The real you is still there and will return.
1763947 tn?1334058919
My Lyme anxiety is very high but with treatment it has gotten better.
Avatar universal
Thanks again for all the comments. Hope you are doing better with treatment and rid youself of this.
Avatar universal
PS I don't think it was mentioned above, but Lyme uses up magnesium in the body, which on top of being anxious about being ill, causes additional 'metabolic' anxiety -- a direct effect of magnesium deficiency.  Can give you the short download on that if it helps.
Avatar universal
Hey JackieC.,

Have had my magnesium checked numerous times. The rheumotologist I see here in Atalnat is really up on Lyme Disease and dsoes a lot of the right things.

My LLMD is now considering  IV Vancomycin because of skin. The doctor also wants me to be cheecked for possible allergies to keflex, Rocephin, cephlos after I mentioned my problem in the past with Keflex. He has really been good trying to think out of the box, but I did not like what I read about Vancomycin. Lots of potential serious side effects. I already have had tinnitus for years. Will talk with him Friday with phone consultation.

Is your Lyme Disease in remission, from what I read?  If so, happy for you and wondering what is was like for you and how long it took. It is my hope to get well and help others when the time comes. With the skin getting worse, it's like being on a timer.

All your time and kindess are appreciaterd.      
Avatar universal
Glad you have a good doc -- he's an exception to the rule that rheumies (and ID docs and neuros) are usually non-believers.  That's great!  

About the vancomycin, I just did a search and did not find terribly awful things about it -- tho it is one of the big guns in the antibiotic world.  I seem to remember some years ago there was consternation that vancomycin was being sold rather casually in Asia for ailments that would have responded to lesser abx, thus depleting the arsenal of meds available when nothing else would work.  Thus its use has been discouraged, in order to keep it effective for when truly needed.  

Here is an abstract of a 1996 presentation by Dr Burrascano at a conference held by the [non profit] Lyme Disease Network.  Are you familiar with Burrascano?  His 'guidelines' are posted on the ILADS website.  One of the early heroes of the Lyme wars.
Title: Use of Vancomycin in Chronic Persistent Lyme Disease
Authors: Burrascano JJ
Conference: 9th Annual International Scientific Conference on Lyme Disease & Other Tick-Borne Disorders, Westin Copley Plaza Hotel, Boston, MA, April 19-20, 1996
Presenter: Joseph Burrascano, Jr., M.D., Southampton Hospital

"Because symptoms of Lyme disease that persist despite aggressive antibiotic therapy have been related to persistent infection, an expanded search for newer antibiotic regimens was undertaken.

"Vancomycin has been shown to be effective in killing Borrelia burgdorferi in vitro, and a case report demonstrated the efficacy of this agent in a patient with ongoing symptoms unresponsive to other treatments. An expansion of that trial is now reported.

"Twenty one patients with severe chronic Lyme disease unresponsive to more conventionally used oral and parenteral antibiotics were prescribed standard doses of vancomycin using a pulsed dosing schedule. Two patients had to drop out due to allergic reactions. Of the nineteen remaining patients, eighteen had a favorable response; in eleven the response was significantly greater than with any other agent previously used. In two such patients there was no apparent cure. None of these nineteen patients had any treatment related reactions, signs of nephro- or ototoxicity, or significant superinfections.

"I conclude that vancomycin may be a safe and effective alternative for treating patients with severe, resistant Lyme disease when other agents have failed."  Unique ID: 96LDF026

Sounds pretty promising and not too scary.  The worst side effect seems to be allergic reaction, and that is not common.  I wonder if they can run an allergy test on you for the vancomycin?

About me, yes, I'm quite well now.  I think I got a mild case of Lyme travelling back East almost ten years ago, and just sort of dragged around for a while thinking I was overdoing it at work, knowing something was wrong but not having the brainpower to figure it out.  Around that same time, we were in England roaming around Stonehenge and other grassy places, and I was suddenly worse -- confused, foggy-brained, just not well.  Like the flu, but no gastro effects.  

That went on for a year or more, while I dragged around through 20 docs with no diagnosis.  The 20th one (and the 3rd endocrinologist I saw) ran a Western blot test, which amazingly came back positive, since as long as I had been ill, those tests often come back negative because the immune system has given up, assuming its job is done and the bugz are all dead, and with no immune system reaction, the tests show negative.

That dear doc said so gently (this is an old tale here -- I've told it more than a few times), "Oh, you *couldn't possibly* have Lyme" -- despite the positive test -- "because" -- and her voice dropped to a whisper -- "I have patients with Lyme, and they are all ... near ... death."

It still boggles my mind to think of those poor neglected patients.  I took those test results and found a Lyme specialist -- one of the well known ones happens to be a short drive from where we live.  I tested positive on W.blot (and I think also on ELISA), and given how long I had been ill, the doc was quite impressed that my immune system was still up and fighting.  

Based on symptoms, I was also tested for babesiosis and was positive.  Babesia was treated first, then the Lyme.  I had zero trouble with the meds (and I'm usually a real lightweight), but did have trouble with the yeast-based probiotics the LLMD insisted on during long term abx treatment.  It took a while for that systemic fungal infection to be diagnosed and treated, but once it was done, I was good to go.  It took a few years to really get back to full-force, obnoxious ole me -- just like any major illness -- but I feel really good now.  Like the preLyme me.  Lyme is a wearing ailment, and dealing the fungal infection too really took a lot out of me, so without that detour I might have sprung back earlier.  

(As an aside, the reason the doc insisted on yeast-based probiotics is that the bacterial probiotics like acidophilus are killed by ... yes, the antibiotics that also kill the Lyme bacteria.  The yeast-based probiotics like Florastor [generic:  Saccharomyces boulardii] can be taken at any time, including with the antibiotics, but it is necessary when taking [bacterial] acidophilus to put a couple hours distance from the antibiotics so the antibiotics don't also kill the acidophilus.  The Lyme doc probably had figured that the foggy brain that comes with Lyme would make it difficult for patients to handle the delicate timing to separate acidophilus from antibiotics by several hours, several times a day.  Good theory, but I am yeast-susceptible, as some people are ... tho my LLMD said he had never seen that happen before with Florastor.  I *am* special!)

So yeah, the road can be bumpy, but hang on and go for it -- it's definitely worth doing.  My only complaint now is that I came out of Lymelands just after the economy tanked a couple of years ago, and that's a real drag after being marginally employed for a long time.  With luck, you'll come out of your Lyme haze just as the economy comes roaring back!  (Gotta think positive.)

Sorry to run on here.  Lyme is a bumpy road for nearly everyone, for various reasons, but it's so satisfying to beat it.  I say:  Go for it!  Let us know how we can help.
Could you please respond and let me know who treated you for Lyme/Fungal problems? family-***@****
Avatar universal
PS  You say above:  "I like my doctor and do not want him to think I am always questioning his judgement ..."

That's fair.  I often preface my questioning with "I have some questions I need help with, and your answers will help put my mind at ease.  I'll try to keep it short."  Then go for it, short OR long.  The doc should figure out quickly that you're not a whiner, but instead a conscientious patient.

The few times I have failed to push back at a doc, I regretted it big time.  Like when they kept sending me away AFTER my appendix ruptured (three different hospitals including an overnight stay).  I nearly died in that little adventure; makes me more persistent now.  

Lesson learned:  You are your own best advocate and guardian.  Follow your instincts.  If you know something is wrong, persist.  Docs learn early that there are lot of whiners in the world, and when they meet a very ill non-whiner, they too often still proceed on the whiner-scale, assuming you will push back.  When you are polite and decide to believe that they are right, that you are not really sick, they assume they really are right.  Don't go there.  Only you know how you are feeling.  Trust yourself.
Avatar universal
Vancomycin has many problems associated with it. If your doctor is considering using you should talk to him about your concerns.

For one thing---- IV Vanco is administered twice a day vs. some other IV meds. That may not be a problem for you.

You might want to look at patient experiences in other forums---- ones where there are many many people who have actually  used it and their opinion of it. Of course those are just patient reports but I've learned the hard way to never ignore a personal testimony by someone who's 'been there done that'. It depends on who is saying it.

There are also reports of it being effective .

You will have to read more  opinions than just mine to to make your mind up. I've never taken it so I can't tell you my experience. Can't begin to tell you how many drugs were considered ''very well accepted' that knocked me off my feet!!!

But because of your skin problems you have a slightly different path to go.
Avatar universal
Thanks, Cave 76. I did read about the major probelm that can take place with the kidneys and a few other items. Having a test done to see if I'm allergic to penicillin, which could tell something about taking other iv drugs instead. I've read bafzelli (spelling?) responsilke for ACA responds well to Rocephin. Would like to try it if I don't react like I did with Keflex years ago.

Damned if you do, damned if you don't. Always had probelms with meds. Just have to see hwo it plays out.
Avatar universal
For others who might be interested, here's a clip from MicrobeWiki about the [less common] B. afzelli branch of the Lyme family:

"B. afzelii itself causes a distinct skin infection known as acrodermatitis chronica atrophicans (ACA).  ACA is seen in the late stage of [the Lyme infection] and can be diagnosed as progressive, fibrosing skin process due to continuing infection of the bacterium.

"It is followed by an inflammatory stage with bluish red discoloration and cutaneous swelling, often seen with recurring events even a year after first notice. ..."
Avatar universal
If it proceesed past the cutaneous swelling phase, it leads to atrophic skin, because of a loss of fat or collagen in the dermis. It sneaks up on you. Looking back, I saw signs of this for years, but it was so slow atthe time, I just didn't think anything about it.

Good luck having someone recognize it. Doctors will tell you "We all age" or "Sun damaged skin." I'm talking about doctors at Emory, the Mayo Clinic, and many others here in Atlanta. If you try to explain how good your skin was before all the atrophy (I'm half Armenian and always had good skin),  you may have the suggestion you seek "therapy or coulseling." As in mental.

My hope is to stop the progression and hope some of the damage can be reversed. I've read both it can be to some extent, and it can't.

I've noticed there is little agreement in many areas concerning Lyme Disease and its impact. This forum keeps me sane because you all have been there one way or another.  
4939681 tn?1361302899
Curious if you've lost a lot of weight as well.  That is always my docs excuse for my ACA.  Also, my ACA was very sudden.  Within a month my skin went from normal to thin, wrinkly, loose, ashy, and almost gray looking.  My husband has caught me looking at myself in the mirror with tears in my eyes dozens of times.  I look noticeably aged and ill.
Did you find something that helped your Lyme/skin/ ACA? family-***@****
1763947 tn?1334058919
Like Leilajax, When I first go very sick from the lyme, I had lost 40lbs in one month which caused the skin to be like that. Then when I became hypothyroid, I gained the weight back but now lost it again and my skin is like that again.

My dodctor at the time never said I had ACA but it wasnt an LLMD.
I feel like I look aged and have cried too. I cry a lot from the lyme and memory issues alone and then add all the side effects, like not walking for a while and weakness in my arms to open the fridge.

I am glad we keep you sane because we have all experienced different problems too and we understand and are here for you.

Avatar universal
If you answered my question about where you contracted Lyme I may have missed it so please refresh my memory.
Have you ever traveled outside the U.S, Europe in particular?
Do you remember a tick bite--- at all? Anywhere?

ACA is usually associated with infections contracted in Europe but there may be some evidence that ACA could follow ECM (erythema chronicum migrans or bulls-eye rash). Again, nothing is set in stone in science.

Avatar universal
Here are just two abstracts found on PubMed:

Eur J Dermatol. 2004 Sep-Oct;14(5):296-309.
Dermatological manifestations of Lyme borreliosis.
Mullegger RR.
Department of Dermatology, Medical University of Graz, Auenbruggerplatz 8, A-8036 Graz, Austria. robert.muellegger@meduni-graz.at
Lyme borreliosis is a multisystem infectious disease caused by the tick-transmitted spirochete Borrelia burgdorferi sensu lato. About 80%

of all Lyme borreliosis cases represent skin manifestations (dermatoborrelioses). The three characteristic dermatoborrelioses are erythema migrans, borrelial lymphocytoma, and acrodermatitis chronica atrophicans, which occur in different stages of the disease. Erythema

migrans is the hallmark of early Lyme borreliosis, whereas acrodermatitis chronica atrophicans is the characteristic manifestation of late

Lyme borreliosis. Several spirochetal factors (e.g. infection with different genospecies, co-infection with other tick-transmitted pathogens)
as well as host factors (e.g. cytokine patterns at the site of infection) influence the course of the disease.

Diagnosis in the early stage of Lyme borreliosis relies on the clinical picture, whereas serological, molecular, microbiological, and histopathological findings are important adjuncts in the diagnosis of later stages of the infection. Antibiotic treatment is necessary for all stages and manifestations of Lyme borreliosis.

Doxycycline is the antibiotic of choice for most patients with dermatoborrelioses.

Even though ACA is a late manifestation of dermaborreliosis doxy is recommended by many doctors. However, there are always other opinions by doctors just as qualified that say that a third generation cephalosporin is the drug of choice.

Some authors have suggested that ACA may be adequately
treated with oral therapies such as doxycycline. In our opinion, ACA should be viewed instead as »the tip of the iceberg« in chronic borreliosis and one should reckon with additional lesions in less accessible connective tissue structures.Thus we prefer systemic therapy with third generation cephalosporins (cefotaxime 2 x 3 g/20 days or ceftriaxone 1 x 4 g/20 days)."

[cefotaxime = Claforan   ceftriaxone = Rocephin
I haven't heard much about Claforan/cefotaxime in the past few years. I would have to research to find out why it's no longer popular.

"After borrelial infection, it takes several years for the development of acrodermatitis chronica atrophicans (at the
earliest after two to three years, or even decades after infection).The disease course is characterized by an initially
edematous inflammatory stage, in which the epidermis
remains intact while the dermis becomes swollen and
inflamed.The skin is blue-red and the borders usually
merge. Surrounding the vessels there is a lymphocytic infiltrate with abundant plasma cells which often extend
into the subcutis. As a result of chronic inflammation,
collagen degeneration occurs with loss of elastic fibers and
thus ultimately a “cigarette paper-like” atrophy of the skin "


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