Looking for anyone who has Acrodermatitis Chronica Atrophicans with Lyme Disease

[Murphgolf]

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.  

[cave76]

@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.

[mojogal]

Glad you have nurse friends to help you.

Wishing you the best.

[Murphgolf]

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.

[mojogal]

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.

[leilajax]

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.

[cave76]

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!