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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
Just in case this might have a tidbit or two in it for you IF you contracted Lyme in Europe.

http://www.medhelp.org/posts/Lyme-Disease/What-if-you-think-youve-been-infected-in-Europe/show/1976576
Avatar universal
ACA is usually found only in patients with Borrelia Afzelli, which is mostly found in Central and Eastern Europe.  I don't know much about it so I don't know that I have anything new to offer.  I thought I'd mention my experience with Bicillin, though.

I believe I have an Australia version of Borrelia Garinii, common in Western and Central Europe, and I did well on Bicillin LA shots. I have heard someone theorize that European species are more likely to respond to Bicillin.

In the U.S., the prefilled syringes cost about $650 for 10 (which was a month's worth for me), which is a fraction of the cost of IV meds.  I didn't mind the shots (only after I figured out to ice first and hot pack after) and preferred a shot every 3 days to a PICC line and doing IV transfusions.  Rocephin is usually the 1st choice parenteral (IV or shot) drug, but Bicillin is worth looking into for people who can't take Rocephin or can't afford the cost of it.  But it doesn't work for everyone. You won't know until you try it.

From what I've read, you can stop the progression of ACA with proper treatment. But, treatment doesn't reverse permanent damage to tissues from long term or severe infection.  It sounds like you need to do whatever it takes to get some heavy duty treatment to give your skin a chance to heal.  

I believe you mentioned taking steroids, and that would certainly have allowed a Lyme infection to get worse.  Steroids and other immune suppressants are usually a disaster for Lyme patients.

You might be able to file some kind of appeal with your insurance company on their limit of one month of treatment by claiming that you have b. afzellii (evidenced by your ACA), the Eastern European version, and the justification for only giving 1 month of IV meds in the U.S. is based on the assumption of New England acquired Lyme Disease.  You have a different species of Borrelia. You should be able to argue that much less is known about your condition and that you should be treated until your very serious and potentially life threatening skin condition resolves. You can even throw in the steroids issue saying that no one knows how much more difficult it is to eradicate b. afzellii after steroids.

In some states, laws require an insurance company to pay for treatment that a physician says is necessary to treat the patient.  The medical field knows very well that some people are more difficult to treat than others, and that different patients respond differently to various treatments.  I know CA has this law, and some insurance companies have been ordered to cover long term Lyme treatment by a state regulatory committee that governs disputes between patients and companies.  I dont' know if your state has such a law or committee, but it might be worth looking into.  And you'd also need a doctor willing to keep treating you until your symptoms resolve. It sounds like your doctor might be willing to do this.

Hang in there!  Keep pressing forward to get the treatment you need!  It sounds like you're doing a good job of being your own best advocate!
Avatar universal
Thanks for comments.

Understand about looking in mirror. I am learning not to and to stay away from the photos of those with ACA. It is all difficult to take in, especially if you have always been healthy and active. But, the goal is to keep looking for answers. You wouldn't be on here if  you had given up on it all. Hard to admit as a man, but I do cry sometimes about this. I cry more for the time I lose with my kids from it. Without a word, they motivate me to keep going.  

My goal is to find out what is the best way to stop progression of this. I've lost about 13 pounds, but only weighed 176 to begin with (6'0"). I've noticed my strength is still good. Just appearance as my face looks a bit more sunken and people used to seeing me can tell I've lost weight. Still work out with weights and some aerobic, but nothing like I used to. Running and competing is a passion for me, and I miss it.

When I first had Sweets Syndrome hit in October 2011, the first concern was if lukemia would follow. So far that has not been the case, and the Lyme Disease would explain why Sweet Syndrome took place, which comes with an infection (or pending lukermia in men a lot). At the time, the doctor told me I did not have Lyme Disease because he is short minded when it comes to Lyme Disease. I told him almost two years ago the skin was going, and he thought I was crazy. Put me on steroids for the Sweets Syndrome.    

I am beginning to belive this was passed down to me from family. Grandparents from Armenia. Found out yesterday, and I apologize if I have already mentioned this, my grandmother had an episode with Bells Palsy in the 1950s. My mom is 97 and always been healthy. So I don't know, but it's a thought. I've never been out of the U.S.

As far as looks, I hate it, but it is better than dealing with a cancer. I try to look at it that way. Not saying that is easy. I announce big and small events around Atlanta for a living, so staying at least "normal" looking is important from a financial standpoint. So is gaining back energy. And I plan to, even if it takes some really bad times.  

The positive is, if this bothers someone bad enough and the progression can be stopped perhaps there are procedures that can be performed to help. That is an answer I am looking for. Fillers, if needed, laser therapy on skin. Supplements to bring collagen back. I constantly look for something positive to take me to tomorrow.

HOPE. Even when you have trouble finding some, keep looking until you do.

That is why I appreciate everyone on this forum. What a great group. Don't know what I'd do without you, and I hope some of what I mentioned today may help you.      
1763947 tn?1334058919
First I would say that there is nothing at all wrong with a male crying. You experience the same pain and frustration that all of us do.

Most of us have experienced trying to find an answer and not getting any for a long time. Nobody caught mine for 18 years. In and out of hospitals, painful unnecessary tests for nothing.

The truth about Lyme is its a crap shoot. There is not one single protocol at this time that will work for everyone. It affects everyone differently.

I try to think like you do, that it good be worse. I have heard of cancer patients say they rather have cancer then lyme.

I was rear ended by a truck a few weeks ago. The pain of that, on top of my Lyme pain almost pushed me over the edge but as my fiancee always says to me...these are the cards we have been dealt and we must deal with them.

We are here for you and wish you the best.
Avatar universal
"I am beginning to believe this was passed down to me from family."  I'm more inclined to think Lyme is a little gift to each of us from our common benefactor, Mother Nature.  

The tiny Lyme ticks are everywhere, and the spread through the country (and indeed the world, via different species) has been dramatic.  

The various strains of Lyme arose due to geographic isolation, but the frequency and speed with which we humans (and our pets, as well as migratory birds etc.) travel country to country and continent to continent cause me to think the docs are shortsighted when looking only for certain strains in the geographical areas where they originated.  

I believe there is still serious-minded literature in the market stating that there is one strain of Lyme in the northeastern US, and another in a small area of the Pacific coast, but big blank spaces in between, and never the twain shall meet.  

But our travel patterns and frequency have blown all that out of the water.   The old days of quarantining visitors on Ellis Island to avoid introducing epidemics into North America are long gone.  

So ... where and how we each got Lyme, many of us will never know, and when the medical community accepts that, the docs' mental blockades ("We don't have Lyme in this state") go away, aiding diagnosis and treatment for everyone.

Just my opinion!
Avatar universal
Thanks for replying to my query about your travels.

Which brings this question to  my mind----- and it IS a rather far-fetched question but not out of the realm of possibility.

Have you ever considered that you might have gotten this European bacteria congenitally? The fact that your mother 'was healthy' doesn't mean she couldn't have had asymptomatic Lyme. Your grandmother had one of the prime signs of Lyme------ but I guess it could have been caused by something else.

As I said----- it's far-fetched and I'm not saying it's true in your case----- but it could be a reason.

Here are some tidbits for you to chew on:


Karen Vanderhoof-Forschner wrote:
"My husband and I co-founded the LDF, when my son Jamie was diagnosed with congenital Lyme Disease."

http://www.lyme.org/

In 1999 the CDC declared

"Transplacental transmission of B. burgdorferi has been reported, but the effects of such transmission on the fetus remain unclear. The results of two epidemiologic studies document that congenital Lyme disease must be rare, if it occurs at all. "

The CDCs findings probably did not take this study (1995 in Austria) seriously:
http://www.ncbi.nlm.nih.gov/pubmed/7648832?dopt=Abstract

"Detection of Borrelia burgdorferi DNA by polymerase chain reaction in the urine and breast milk of patients with Lyme borreliosis."

"Six of these seven persons suffered from intermittent migratory arthralgias or myalgias, and one from acrodermatitis chronica atrophicans."

"In addition to urine, breast milk from two lactating women with erythema migrans was tested and also found reactive."
*************************************
Women in the US who have Lyme and become pregnant are advised to either not breast feed.

Dr B. in his guidelines (page 21) states:

"I also advise against breast feeding for obvious reasons as mentioned above."
Avatar universal
I don't know that it matters whether a grown adult who has had Lyme for a long time got it from his/her mother.  Doesn't change testing, diagnosis or treatment that I am aware of.
Avatar universal
True dat.  

Just some more factoids (backed up by some valid resources) brought on by murphs conjecture:
"I am beginning to belive this was passed down to me from family."
1763947 tn?1334058919
My LLMD suggested I do DNA testing through 23andme because of my issues with detoxing. It turned out I had a muted gene that affects the way I detox.

That is the only thing I have to change, knowing I have that mutation and that it was more difficult for me to detox.

Didn't change my treatment any other way.
4939681 tn?1361302899
I found the methylation supplements that we with that gene mutation are supposed to take:
mthfr a1298c is all I have.  *THORNE RESEARCH - 5-MTHF (5-Methyltetrahydrofolate) - 1mg 60's and Jarrow Formulas Methyl-B12, 1000mcg, 100 Lozenges* is best for this mutation.  
They are available on amazon (amongst dozens of other places).  There is a bigger, more involved/active Lyme group on FB that I just joined and the admin helped me find the answers to my mutation as he had it, too.  He said methylation truly improved his adrenals, detox/liver, and ability for the abx to do their magic.  He was doing abx protocol for over a year, but it wasn't until methylation that he started seeing real benefits.  Just thought I'd throw that at ya;).
I am having a particularly horrible couple of weeks after bragging that I was seeing improvement to you.  Should've knocked on wood;).
Thinking of you!
4939681 tn?1361302899
(Hug)
I value everything each of you have to offer!  Thank you from the bottom of my heart!
If you find a good procedure or collagen fix, please let me know ASAP;)
Avatar universal
Somebody might want to start a new thread about the methylation/gene mututation and post information there about what the issue is, what the symptoms are, how it's tested for, and about leila's information above.
4939681 tn?1361302899
I will go ahead and start a new thread;)

Murph, I totally meant the above post to be addressed to you and not Rico (not that I don't want to send Rico a hug too, but the rest of my message pertained to your last comment) as I accidentally did.  Sorry!  Did I mention I'm having a bad couple of weeks?  LOL, jeez!

1763947 tn?1334058919
Thanks for the info. Can you PM me the FB group info or tell the admin to add me?

I am sorry you are having a bad time. Since my truck accident, I am not doing well either.

Hugs
Avatar universal
Good comments to read this morning. Every time I come ot this site, I learn more from all of you. Deeply appreciated.

leliajax - I was wonderning what antibiotics you are taking and if any supplements. Though it's hard to find information about effective treatment for LATE stage ACA, I read where IV Rocephin is suggested when skin issues are involved. I once posted I had taken Rocephin, but I meant Rifampin. If my allergy tests tomorrow show I am not allergic to penicillin, I will soon begin Rocehpin IV. Dreading it but know it's part of the process.

And sorry about your bad days. Have learned mine are worse when my kids aren't here. Will also be curious abou the Methylation mentioned. More we know, the more we may find out helps.
Avatar universal
One more things I've been meaning to mewntion. I've bene putting colloidal silver on areas of my skin where the cricles I mentioned take place before atrophy. My hope is it will kill whatever bacteria may be causing it. Maybe someone can jump in and tell me if I'm an idiot for doing so. Have read it can turn you blue, then read you would have to take so much of less than pharmicutical garde it is not possible to turn blue.

So far I am not blue, except for the mental kind brought on by all this from time to time.  
Avatar universal
Colloidal silver probably won''t cause you any problems when just applied to the skin. (See caveats below) Taken internally or via IV----- another ball of wax, although I do know people who did and had no problems with it---- turning blue or otherwise. :)

I believe that  ACA is a systemic disease and it's been in your system for a long time. The bacteria has been in your system for a long time. Applying it  to your skin can be considered an experiment----- and you may be able to write an article about how CS took away the skin problems of ACA. Never say never.

The CS controversy for Lyme (use it or don't use it) has been around for a long time. Some of the confusion exists because people read how CS would kill spirochetes----- upon contact and in a petri dish! It's a good thing to use for surfaces. But there will be no spirochetes on your skin.

I won't take CS internally. My personal decision. I also won't put it on my skin-----There's just enough evidence that using a CS cream on skin could produce a blue stain to make me hinky about it.

But good luck to you.


4939681 tn?1361302899
Murph, I've been on doxy (apparently a low dose) for almost 5 months, plaquenil for almost 3 months, and bactrim and azith for about 2 months.  I was just adamantly told yesterday, though, to switch to another LLMD ASAP bc with the symptoms I display I am not being treated with the right abx or strong enough doses.  Who knows, though?  I mean aren't we all really going on different treatment plans anyway?  Why is everything so darn complicated?  Ugh!  Sorry for my little rant.  This getting a second opinion LLMD is fresh on my nerves.  I should just be very grateful that I live in an area where LLMD's aren't that hard to come by.
Definitely go with the IV rocephin.  I've heard great responses to the treatment.  I pray that it goes well for you:). Please keep us/me updated!  I'm actually quite excited for you:)
1 Comments
leilajax,
please, PLEASE, contact me with info on who diagnoses ACA here in USA?   I am desperate and believe i have it badly.
Avatar universal
Have taken a break from thinking about all this, but now my LLMD has decided to go ahead with a new treatment plan.

He is prescribing clindamycin IV along with Tindimax. He also is including Transfer Fact Lym Plus and continuing with enzymes and Innate, a probiotic.

Of course, I read some nasty stuff about clindamycin, and probably should have just stayed off the infromation. Now I'm concerned about the major stomach issues people report about clindamycin.

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. I have an appointment with Cleveland Clinic next week in rheumatology and an internest, which I was going to cancel because of $, but now I'm not sure after what he said.

Any thoughts?
Avatar universal
"ALong with that, the LLMD is concerned now instead of having b.afzelii, I have Lyme Disease,"

Lyme and B.afzeli are in the same genus. Same but different. :) (Antigenic variety)
B. afzeli has the skin problems that Lyme doesn't (usually) and will probably be treated someone what differently.

Cleveland Clinic, while excellent for almost everything else, has at it's root the IDSA philosophy about Lyme disease. But since you'll be going there for B. afzeli you might get more recognition. I hope so and good luck.
1 Comments
did Cleveland Clinic diagnose ACA  in you?  I am looking for a doc to evaluate me for it.  I am so very desperate with his skin condition.
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