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.  

[mojogal]

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.

[cave76]

I'm sure you've left already----- but good luck! I hope everything smooths out for you once you're back home.

[Murphgolf]

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?

[Ricobord]

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.

[Ricobord]

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.

[Murphgolf]

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