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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
Sorry about your continuing fatigue. Profound fatigue is one of my worst symptoms--other than 1, 2, 3, etc (grin)

Moan coming up! I just hate it when I say I have profound fatigue to non-Lymies and they say "Oh, I get so tired also when I over-do things".

Arggh! If they could only feel 'fatigue' like we feel it for a week. (Evil thought!)

Back to your PICC line-----I may not be understanding what you mean by "the doctor in Atlanta won't help"

He just flat out refuses? Does he give a reason for his refusal---- like he doesn't believe that an IV will help you?

If you have your PICC inserted in TN then who will oversee it in your State? Are they going to assign a home health nurse (in GA)  to do the changes etc? .
1763947 tn?1334058919
Sorry you have to deal with the frustration of treating Lyme disease. It is terrible. I am glad you are going to Tn to get help but agree with Cave, who will treat your Picc line? I had one in Tx when i lived there ( they dont believe in lyme ) and because they never cleaned it right, it got infected and it had to come out.

My friend who is a nurse with Lyme had to get many because she was too sick to clean it herself and the home health nurse never cleaned it correctly and got many infections.

Fatigue really *****, I do a few things and I am wiped out. Let us know how everything works out. Feel better.
Avatar universal
I had a PICC for 17 months. I do have to say that the home health agency was pretty good for the most part. But that was after I 'fired' a couple because they didn't follow sterile technique------ I knew what 'sterile technique' and it wasn't what they did.

I finally got one that was fastidious about the changes.

If you have a nurse that doesn't use good techniques there's absolutely no reason you have to stick with her/him. Be assertive.

There are many sites available on the Internet explaining dressing changes, site management, sterile technique etc.  Here is one but I think you'll be given information at the hospital also. Sadly, sometimes that information sketchy and incomplete to my anal retentive mind set.

http://picclinenursing.com/picc_care.html

This site:
http://www.son.washington.edu/students/clinicals/ugrad/docs/CH-IVLines.pdf
is from a pediatric hospital but I like it because it explains when sterile gloves are needed (dressing change)
(Don't get confused by all the other 'stuff' meant for nurses)

Through 17 months of having a PICC I never once got an infection. Only once did a line break (for no known reason) but that was easily repaired at the hospital.

There are cast covers available for maybe $20-30 dollars that allow you to take a shower with a PICC. Sometimes people say they cover the arm with Saran Wrap------ I guess they had success---- but I was NEVER going to take a chance with infection just for not wanting to spend a few dollars!

4939681 tn?1361302899
I thought ALL out-of state LLMD's needed a doctor in the state where you live (preferably PCP) to sign off on IV?  Not an agreement to authorize or even to treat with abx, but home care services need an in-state doc signature to proceed with inserting picc line.
Quote from one llmd's new patient packet:
I treat with IV antibiotics only when I feel it is absolutely necessary and only if an out-of-state patient has a local health care provider who supports their Lyme treatment and agrees to assist when needed. Before I will consider ordering IV treatment the patient must have already lined up a health care provider near them who is willing to write an order for the placement of the IV line and an order for home health care. An in-state provider must order these two things, meaning that I can only order these for a patient who lives in Washington, DC. I am, however, able to order the actual IV antibiotics, even for out of state patients. I DO NOT HAVE REFERRALS FOR DOCTORS IN VARIOUS STATES WHO WILL DO THIS. Doctors who agree to help do so because of an established relationship with a patient. In summary, this local health care provider will not actually be treating the patient or even co-treating. He or she will simply be agreeing to order both the insertion of the IV line and the home health care.
1763947 tn?1334058919
My friend who is a nurse and had the problems knew how to sterilize properly but was so sick, bed ridden, blinded,too weak to tell the home health care worker how to do it properly.

She wound up getting a med port instead because its placed under the skin and not as worrisome.
Avatar universal
That is why I am going to Tennessee to have picc line placed. The doctor here, who originally told me she believed it is Lyme Disease, won't return my phone calls with request to have her sign off on using local hospital to have picc line placed. And at the hospital here, they would have performed checks that would not cost me anything if I came there each week.

I have several friends who are nurses and work with picc lines each day. They said they would be glad to come by anmd check to see if liine is working right, steralized, etc...

And I do wonder why you can't get a port instead. Seems like it would be easier, as mojogal mentioned. At this point, thjough, I'm ready to try most anything and face it all as it happens.
1763947 tn?1334058919
Glad you have nurse friends to help you.

Wishing you the best.
Avatar universal
@murphgolf,

Did you read the post Leilajax wrote, right above your last post? Fortunately I read it before I posted my questions.
She gave you some good information to follow up on---from a doctor.

It's good that you have some nurse friends to look in on you. And I'm sure they are competent---- maybe even better than one assigned to you by a home health agency. :)

But I worry that, because they aren't employees of a home health agency (thence covered by your insurance)----- have you checked to see if your insurance company will pay for the IV under those circumstances? I know it wouldn't in many states.

Crossing state lines (with medical care) is a problem involving a doctor's liabilites, licensing, insurance payments.

Perhaps your doctor has a license to practice in both GA and TN? But will the hospital in TN agree to you not having home health agency care in your state/county? The hospital would be massively at fault if they did. But you could check---- I could be wrong.

But please check, o.k? You might just ask your doctor if he's o.k. with that.
Avatar universal
Again, thanks for all your ideas and comments. And I have an important qwuestion (at least in my life) atthe end of this.

First, I did read lelajax's comments and learned from them. The problem I have is I have an in-state provider who originally told me she thought I have Lyme disease, based on testing and symptoms. However, and I still don't knwo why, she never would answer if she would simply sign off on having the picc line put in here. And I'm at a point where somethign has to happen because things keep getting worse.

I just got back home after three days in hospital for a racing heart (110-140 BPM) for hour after hour and irregular heartbeat. The local hospital where I stayed had it under control after about a dya and a half, just before they were about to shock the heart back into rythym. That, along with continuing fatigue and escalating skin issues, has put me in a position to "make things happen" because I think my local doctor has gotten cold feet in treating for Lyme Disease because of the CDC. I'm tired, worried, and have been doing nothing now for weeks because of lack of help here.

My question(s) for all of you,m who I have come to trust: I just recevied my co-infections tests beack from IGenex. All negative. That includes B. microti, E. chaffeenis A. phogocytophilus. Don't even know what it all means since the doctor here did not even let me know they were in or had "signed off" on them. Does that lessen the chance I have Lyme Disease?

In my original tests from IGenex in early February of this year results were :IGM - band 30+  31+ 34 IND  39IND  41++++ 66++  rest were negative.  IGG - 39IND  41++  45+  58+  Rest were negative.

Is this really a strong case for Lyme Disease before I go up and start IV treatment tomorrow? Some places even say bands 30 and 31 are NOT Lyme Specific as many indicate. So, with all those facts, and I'm sorry to have so much info., do tests results such as the ones presented give a good indication I DO have Lyme Disease, DON'T or just might? Also, I know we add in symptoms, but could those be some kind of other connective tissue disease?

Just confused now, and down to the wire on what to do. The heart deal really added to my apprehension. Do facts play much a role in all this?

Leaving Wednesday morning for Tennessee, but if anyone has time tonight, your knowledge and experience wouild be greatly appreciated. Thanks - David


Avatar universal
I have to make this really short, but I really encourage you to proceed with treatment.  You have the symptoms and you have a handful of antibodies consistent with Lyme/Borrelia.  Your skin issues are quite unusual in the U.S., being found primarily in central and Eastern Europe.

If it's any reassurance for you, there was a study a couple years ago where the CDC two tier testing protocol, including the Western Blot interpretation, was run against European strains of Borrelia.  They found that it only accurately reported a positive in HALF of infected patients. (The other half were false negative.)  This is clear and indisputable evidence that different genetic variations of Borrelia result in different combinations of antibodies in patients.

I am going to give you a copy of a detailed list of the bands relevant to Lyme.  Unfortunately, I failed to save the URL and I cannot remember where I got it at this moment.  Given your time sensitivity, I will go ahead and share it here for you rather than waiting until I can find the source.  I encourage you to do your own online research on what the bands in the Western Blot mean.

What's really interesting to me is Band 30.  You have Band 30.  You also have ACA, which is usually found only in Europe (with Borrelia Afzellii).
While it mentions that Band 31 is specific to Borrelia, IGeneX reports that at least one virus can cross react with it.  However, Band 31 is one of the two highly common antibodies in Lyme, so common that it and Band 34 were used in the development of a Lyme vaccine (which failed and was pulled from the market).

18 p18 flagellin fragment
23-25 outer surface protein C (OspC), specific for Bb
28 outer surface protein D (OspD); Oms28; specific for Bb
30 OspA substrate binding protein; common in European and one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection
45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients

You have Lyme antibodies...more than I did. You have serious symptoms that are consistent with Lyme.  You have symptoms atypical of North American Lyme, so it's unreasonable to expect that your collection of antibodies will line up with the patients who had sore knees and a bulls eye rash.  

Testing negative for coinfections means absolutely nothing for whether you have Lyme.  And sadly, it doesn't guarantee you don't have any of them. I tested false negative for Babesia 3 times, 2 of those at IGeneX.  While they do better than other labs, there are still many more genetic variations than the antibody tests look for, and direct evidence of a bug is often hard to find.  I ended up with a clinical diagnosis of Babesia. There's no doubt I have it. I'm still struggling with it after nearly 9 months of treatment.

Avatar universal
P.S. Assuming you do indeed have Lyme, you may not find "absolute" confidence of Lyme until after you start treatment.  Don't be afraid to start.  Treatment is better than letting your skin and heart issues stop you from living your life! What do you have to lose?  Doctors clearly have no other answers for you.

P.P.S. If you are really uncomfortable with the PICC line, ask about shots.  A friend of mine who had the PICC line said it didn't bother her at all and her infusions just became part of her daily routine. She said she was thrilled to see improvement with Rocephin.
Avatar universal
Ricobord,

Thanks. I just get thrown by some of the information, and right now my anxiety with going to have this done is high. Your input is clear and good information.

I hope your situation improves  and treatment sees results. Have they tired you on different antibiotics and alternative meds? Any improvement at all for you?

Avatar universal
I'm sure you've left already----- but good luck! I hope everything smooths out for you once you're back home.
1763947 tn?1334058919
I think you do have Lyme too.

Although my Bartonella came back positive on the first try, my Babesia took 2 more time. A friend of mine had to wait 4 times for a positive.

Best of luck.
Avatar universal
Question: How long could it take for iv clindmycin to cause a herx. Had first dose today and don't fell any problems. Does it take some time or is it much quicker than oral? Just hopsing this stuff works after going thro9ugh everything to make it happen. Any thoughts? Thank you in advance.  
1763947 tn?1334058919
Every one is different but within a few days it should happen if you are going to have one.
Avatar universal
ditto to what mojo said
Avatar universal
Hi,
I know it's been a while since you had posted your question about ACA and understood you started treatment of antibiotics.
I had horrible skin breakouts that where treated with steroids first (Yahh, very bad! I'm paying for it now...) over a period of 3 years (I used to break out on overage every 3 months and I had 2 very bad ones; disgusting! ;). The bottom line is I recommend you ask your doctor about putting u on Valtrex (If they haven't already..) on a daily basis.
I take 1 in the AM & 1 in the PM; 500mg pills.
The down side of Valtrex is; It's expensive! You can try the generic kind(Valaciclovir); for me it didn't work for some reason. The valtrex did the generic didn't.
I hope this helps, unfortunately I know what u r going throw. Be strong!
I'm in treatment since Feb 2012, I still get little breakouts even-tough their not as nearly as bad!
Be well.
Avatar universal
Did you lose any body fat through all this? And I was on steroids for Sweets Syndrome before all this started. Understand your concern on that. I appreciate your comments and thoughts. Will look into Valtrex and ACA connection.  
Avatar universal
I have ACA on the top of my right hand, and now patches coming up on my legs.  I have late-stage Lyme's, and receive alternative treatment from a D.O., but he is not familiar with ACA.  I went to my dermatologist who doesn't know I have Lyme since I'm trying to keep that quiet so I don't lose my health insurance, and he said it was Granular problem, which it isn't.  It's not in circles like that.  My ACA is reddish, and periodically there is a bit of scabbing as though it wants to heal but doesn't.
A while back I saw a Lyme patient on Youtube. who has this.  Her hand looked just like mine.
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