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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
Thanks. From the moment he said something about autoimmune, I have been confused. In my mind, it may be, and I can't even swear this is b.afzelii involved, but he has not dealt with b.afzelii before, therefore thinking autoimmune instead. That is why I have heavily considered keeping the Cleveland Clinic appt. in rheumotology. That wouldn't be to confirm Lyme Disease, but to try and rule out the auto immmune aspect.

MyLLMD has been very good getting back with me and trying to come up with answers, His daughter has Lyme Disease, which is why he gained such an interest. He did mention he had another patient with similar symptoms, and once treated with antibiotics for a while (he has me scheduled for at least three months IV), the loss of body fat or collagen  stopped. That fits the ACA pattern.        
Avatar universal

I hear you.  It sounds like you're working through things very thoughtfully.  Your doc sounds like a solid citizen who is trying hard, but keep in the back of your mind that he's not that familiar with Lyme by his own admission, including not having dealt previously with b.afzelli.  That he has had a patient with symptoms similar to yours is encouraging, but please consider having the diagnosis confirmed by another MD more conversant with Lyme and its nasty little cousins.  

I understand that you are going to the Cleveland Clinic, but I paused when reading that the appointment is with the rheumatology department.  Infectious disease docs, neurologists, and rheumatologists are three disciplines well known to be [often willfully] ignorant of Lyme disease, as it simply doesn't fit their existing disease paradigms.  I just searched on line for "cleveland clinic 'lyme disease' " and will send you separately some of the results.  It's not particularly encouraging, tho the results are a few years old -- but it may indicate an institutional mindset at work.  

There is a lot of that in the Lyme world, too, where the mainstream docs are accustomed to having figured everything out a long time ago, and the rest is just details.  I remember when AIDS was new and no one knew what it was all about, whether it was communicable like the common cold, and so on.  The medical mainstream was in disarray, not knowing what it was dealing with and having no paradigm for approaching any ailment outside the received wisdom -- on the assumption that everything worth knowing about disease was already known.  Lyme is much in that category as well:  the entrenched medical interests are overall not comfortable with emerging diseases.

While preparing for the visit to the Clinic, I would in your situation be running on a parallel track to locate and line up additional avenues to pursue -- and parallel rather than serial.  I know it's not the normal way to approach the medical world, but the institutional format the docs now inhabit calls for out-of-the-box thinking and tactics by the patients.  (IMO, of course.)
Avatar universal
I'm lost on all this and now very frustrated. My LLMD was goingto start clindimycin Iv with Gindimax, but the homne company that was setting it up cannot because it is out of state. Has to be one in GA. Haven't heard another word in two days, and the skin (fat loss) continues to get worse. Left a message yesterday but have not heard back.

IF this is ACA, the longer it goes, the more "mostly irreversable damage"  gets worse. Think I have stressed myself out to the point stomach is hurting.

I sound like a big baby, but I am so ready to get started on all this even knowing what misery it may cause. And I cancelled my appointments at Cleveland Clinic. I think you were right about how they might look at it all. Not sure what to do. I can get into Jemesek Clininc in a few weeks, but it does not take insurance and a few weeks is a long time right now. SUggestions from all of you I now respect and trust?      
Avatar universal
Sorry it's not moving along as hoped and planned.

Cleveland Clinic might be good ... depends on the doc.  You might go anyway and listen with a cautious ear to what they say.  Data is data, and then you can deploy as you see fit.  Might give you an idea for the next step, even if it's elsewhere.

I have heard of Jemsek but know nothing about him/it first hand or otherwise.  Could they put you on their cancellation list?  

Given your penchant for research, have you located medical schools and treating/teaching hospitals that have an interest in ACA?  When I get a minute, I'll poke around on the net and see what I can find.

Didn't mean to scare you off of the Cleveland Clinic.  Even if they are not the final answer, they may have useful bits of information that you could use to plot your next move.

My approach when feeling boxed in is to move ahead on all reasonable fronts simultaneously.  Make a list of the top [six] things/places/docs you would like to follow up on and then go for it.  That will give you focus, and then modify as data comes back as to expertise, availability, distance, cost, etc.

I think you are doing fine, considering what you are up against.  Some would just give up, but you aren't.  Keep us posted.
Avatar universal
Don't know you, but I consider you a friend. I appreciate your help, comments, ideas, encouragement, etc...  No one here understands what is going on with all this. It's like bing out there by yourself ignorant and not knowing what to do next.

With you and others on this site, a lot of that is taken out of the equation. Y'all (okay, I am still southern) have made this much more tolerable. Thanks.  
Avatar universal
Oh, you're quite welcome .... and when you are all healthy again, you'll maybe find yourself hanging around here anyway, just to get your own back against the bugz, just as others of us have done.  

It's a group effort, and you're one of us now.  We each have our own views and favorite topics, and it all blends together.  

I've been doing some digging on ACA, reading up on it, and will post or PM you with anything that looks like it might be of interest.

Welcome to the Lyme underground.  We're a hearty crew.
Avatar universal
Still hven't heard back from LLMD concerning picc line and antibiotics. Not sure what to make of it. As mentioned, the company that was going to do the IV cannot because of state regulations, but now I have heard nothing and left two messages. Don't know if LLMD is irritated that I asked about the chosen meds or what. I did tell him I am just nervous since this is all new to me. But where I was about to start full, heavy treatment, I find myself instead in neutral,,, again. I like the LLMD and believe the plans he comes up with have thought behind them. Just now?? It will take weeks to see another, but I can't imagine a doctor would just drop without a word.

Avatar universal
Well, the doc might have just run out of time in the week, or had a family emergency, or was kidnapped by Martians, or who knows.  I know it's hard to wait, but you may well hear on Monday.

I've been through the mill waiting for docs, too, so I hear you.  

Hang on!
Avatar universal
You're right. Waiting has never been my in my nature. Then again, I ran track and coached for so many years, you were supposed to get there as fast as possible. My son has the same nature,and the good thing is it will pay for his college, even if it drives me crazy at times. I now know what my parents dealt with :)

Seems like it's in your nature to dig facts. I enjoyed it as a reporter and find it helpful in life. I tell my kids if "A" doesn't come through, then go to "B." If B doesn't work, FIND "C." That's what I had to do covering stories with sources fell through or backed out of talking. You have a knack for that. Just curious, if I'm not being too nosey. What kind of work did/do you do? You write like an English major or technical writer/both.

Avatar universal
Yeah, I like figuring stuff out.  I do business consulting.  Taking bits and pieces and trying to make sense out of it all.  And after enough bad encounters with the medical community, I got a Merck manual and never looked back.
Avatar universal
Hope everyone is hanging in there. I have been through the battle of getting mediccinhe started in Georgia, as in picc line for clindymcin. Doctors here of no help, so I will head to Tennessee to get it all started this week. It's a jok, but not a funny one, on how bad the medical system is with Lyme Disease. I understand that more and more. The doctor here in Atlanta who told me I have Lyme  Disease won't even help out so I can get picc line at local hospital. Georgia is real tight on who can service it also.

In the last couple of weeks, I have had tremendous fatigue. Much more than usual. Also have lost more fat on body. Guess it's part of it. WOuld like to hear updates on others.    
Murphgolf hi, I stumbled across this medhelp.organization and was surprised to see you and others talking about ACA.
I, myself have lyme disease and 2 co infections.
I also advocate on Facebook for anyone who wants or needs help with lyme disease.
My story is on a Go Fund Me account "Carolyn Hamilton" "Medical" "Lyme Disease taking a life" it's not very well written, although it tells my story. And, no please don't donate, just read it if you want.
A good friend of mine who has lyme disease and ACA - she just told me a week ago about the ACA ~ I really didn't have a grasp of what it meant, until I read up on it.
I know that she is very depressed, like most of us, why wouldn't she?
I was amazed at how devastating this is.
I sent her a copy of this medhelp section and haven't heard back from her.
I realize that these were written a few years ago.
I'm wondering how you are doing?  
Her name is Cindy Haendler on Facebook if you want to reach out to her.
I've been praying for both of you and anyone else with lyme on a constant basis.
I'm just hoping that you have made progression, if you are not up to it, I understand.
Please feel free to contact me on Facebook or call or text me.
415. 309. 8854.
I hope that you found some help.
Any suggestions you might have for Cindy would be great.
I honestly hope you are doing better.
I've another friend who's had lyme since age 8.
She now has Speech Apraxia.
I'm so angry with the way lyme disease has been dealt with or the lack of.
Thank you for your time.
I wanted to ask you a question and poof, it's gone.
Maybe it was how long had you gone with lyme disease before treatment and basically how long have you had lyme disease.
Thank you.
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.


This site:
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

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

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
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.
Avatar universal
I never have had scabbing, just light red bluish circles or ovals that eventually atrophy. Your hand have lines in it that seemed to develop quickly? Like quick aging?

Avatar universal
I am currently undergoing treatment at Sierra Integrative Medical Center in Reno, Nevada. I highly recommend this place, the doctors specialize in the holistic  treatment of Lymes. I am also suffering from Lymes that is being expressed through my skin,  but with the recent treatments I am healing and my skin is clearing up.
Avatar universal
Thanks for the information. Do you have loss of fat under skin and atrophy of skin?
9052491 tn?1405982155
I happened to stumble upon ACA recenlty while researching lyme. It was a major "aha!" moment because I have had this wrinkly patch of dry skin on the back of my hand for YEARS and never remembered injuring it or burning it. The thing never got better or worse, just stayed there dry and discolored, didn't itch, didn't grow. When I discovered the definition of ACA it all fell into place. Now I don't have to spend thousands of dollars on fancy blood work to see if I have lyme.

Last weekend I added a homeopathic remedy to the herbal lyme protocol I've been using (banderol, samento, chlorella, and vitamin D3). The results were startling. The homeopathic remedy is marketed by Dr. Theresa Dale as Lyme or Bio-Tox, and I used just five drops twice a day. Within hours I was deathly sick, headache, nausea, then vomiting, diarrhea, and sleeping for about 8 hours. For a little while I wasn't sure I would survive whatever it was, but now I know it was a "herx" from the die-off of the lyme critters. What really got my attention, because my right arm was in a cast from an accident, was that the ACA on my hand began to burn during that time, like someone was holding a hot iron on it!

The next day I was shocked to find how great I felt. It was as though I had knocked out so much lyme I felt almost normal again, and it's been a long, long time since I have felt that way. Today I started back on the Bio-tox again. I will keep an eye on the ACA as well as the other symptoms and reactions and share whatever I find. So far, this is really exciting.  The last herx I had was a year ago using just banderol and samento, but I was kind of in a holding pattern without a lot of improvement since then. To have mobility back in my legs is really encouraging. I am walking more every day.
Avatar universal
That's great to hear! Not the feeling bad part, but the aftermath.

I have started the Buhner Protocol, which includes a large number of supplements, but not the banderol or chlorella. Could you keep me posted on how things go? I'll be hoping for you.

Most opf my body is impacted by the ACA, or what seems to be ACA. I haven't lost any strength, just the loss of fat/collagen, headaches, fatigue. It became better on Bicillin IM, but has slowly gotten worse again. But today was the first day is a few weeks I haven't felt like sleeping between 3-6 p.m.

Hope all goes well.Look forward to hearing back on your progress.    
9052491 tn?1405982155
I have a lot of reason for being excited. The ACA on the back of my hand seems to be going away. It's fading and feeling more and more like normal skin. I've been using the BioTox Lyme homeopathic remedy as well as Banderol and Teasel, plus added an herbal formula for adrenal support and liver cleansing last week. I definitely have more physical energy and less pain, too. I am still very much affected by weather changes, however. Rainy weather makes the fibromyalgia really difficult. But I'm going to keep chugging.
9052491 tn?1405982155
I forgot to mention I have also been using Kyolic (garlic) with an added supplement of probiotics. You should see the collection of herbs and oils and tinctures I have here. It's hard to keep up with everything. I am hitting this stuff with everything I can find. I want my life back!
Avatar universal
Glad to hear things are improving.

Understand about the "collection of herbs." I get overwhelmed when I look in my cabinet. My doctor took me off everything because my kidney tests came back a bit off. I can feel everything coming back now, which is a downer. But, hopefully things will get better, and I'll get back on what is needed.

And about "want my life back" - that hits home hard. I'm pulling for you, and thanks for the information.
Avatar universal
You need to get tested for co-infections. Also read the article here about your antibiotics question: http://www.sheamedical.com/above-and-beyond-antibiotics
Avatar universal
Did the doc explain why it was necessary to take you off ALL meds/herbs?  Are there likely suspects among what you were taking that could be reduced or eliminated temporarily without taking you off everything?

I mean, I'm allergic to peanuts, but it doesn't mean I stop eating all together, y'know?

9052491 tn?1405982155
I've spent my adult life working from a natural framework. I learned years ago that the body is an incredible self-healing machine. If we give it the fuel it needs and take away the things that irritate or break it down, it's capable of eliminating disease and toxins. That's an oversimplification, but it's the foundation of what I do when it comes to disease. I rarely take any pharmaceuticals. Instead of penicillin or doxy, I choose herbals that have antibiotic properties, like olive leaf extract or banderol or garlic. I never knew I had lyme until this time last year when my husband got it and I realized his symptoms were like mine...only mine had been going on for nearly ten years.
Avatar universal
Do you feel better and has the ACA continued to improve?  My whole body has been impacted by it. Trying to get rid of Lyme as it is what causes the ACA, rather than the co-infections. And, as you know, the longer the skin issues go on the worse it gets and the harder it is to improve them. That puts an urgency to it.

9052491 tn?1405982155
I had another herx a couple of days ago, just as bad as a couple of weeks ago. I was doing Biotox, Teasel, and Banderol, and within 20 minutes of eating a sandwich, I got sick. Stomach pain and then about 40 minutes later came vomiting, followed by hours of diarrhea. It was really traumatic again, and even noticed after the vomiting that both kidneys ached for a little bit (maybe a minute).  I was afraid to put ANYTHING into my stomach during that time, and wasn't even certain it was a herx. The stuff that goes through your mind includes, "What if these herbs are harmful to my body, or hazardous in combination with each other? What if the homeopathic stuff really is toxic and can hurt something else long term?" I was sick for about six hours, all told, and then I slept a little bit. But this time I have had a new "reaction" after the herx: inability to focus. Like I was in hyperdrive with A.D.D. I would start a sentence I couldn't remember to finish, make a pot of tea and get distracted and never make a cup of it for myself, etc. However, that night as I was sleeping, I was awakened by that sensation under the ACA again. Like someone was touching it with a hot nail over and over. That lasted about an hour before I fell back asleep. The ACA is about half the size it was and barely even noticeable on my hand. From the size of a half dollar in width to about a nickel. And the discolored area has a normal colored circle in the center of it (matches the skin around the ACA) which I didn't have before.  Will keep you posted.
Avatar universal
Thanks for the update. The ACA is what bothers me the most because the worse it gets, the more permanent damage may take place. I have it all over my body, through through lifting weights I have been able to keep muscle tone to hide some of the impact.  
9052491 tn?1405982155
The ACA is almost gone completely. One small area of rice paper about 1/8" inch or less. Discoloration is gone and skin feels almost completely normal.
Could you please tell me where to start to stop the atrophy?
Avatar universal
What excellent news!  Please keep us posted on how you are doing -- sending you and yours all good wishes for continued progress.
Avatar universal
That is great to hear. How long did you treat? Happy for you.  
Avatar universal
Hi, I got bit in Robbinsville, then again two years later in Tellico Plains right after the tornado hit there in 2012.  Fully cured both times but the first time took almost two years.  Second time 60 days.  Read about it here:


Good luck, the skin problem is from inflammation in your spinal column from spirochetes trapped in your cerebrospinal fluid.

Good luck, Will
I believe I have really bad ACA and am having trouble finding doc to properly diagnose.  I will travel anywhere in USA (I live in San Francisco bay area).  I dont want to start abx without at least a doctor familiar with ACA (or a doctor who wants to LEARN...I know, wishful thinking).
I apologize for the sarcasm but dont know whom else to turn to.  I can not live in this skin pain/burn much longer.  I know if i went to the ER they would just pump me full of steroids.
ANY HELP would be so greatly appreciated.  I have many, many photos as well.
Thank you all in advance for your kind help.
Avatar universal
I have had to work this out myself as doctors are not listening - surgery keeps triggering it off as I now have multiple problems - but hospital did see the circles on me legs and never diagnosed Lyme disease - I use Vaseline to protect skin and you would Acrodermatitis chronica atrophicansp I have 5 on me now due to lack of care and attention - been waiting for a skin specialist for 6 months as they would not believe - my skin is breaking and because if this I can see everything and tell the world - these parasites cause all our illnesses and doctors have made name for the actual diseases but it's only caused by our environment- everything and I'm going to tell everyone we can fix ourselves - all this medication is rubbish and doctors do t know - they wait for the problem and will never fix the cause so we need to fight back anything acidic will kill them and remove them from your skin / but we have to find the actual bacteria which is attacking us - we all need to stand together all over the world people are suffering and doctors think that's ok - well it's not and they need retraining - times have just changed and it's time they stopped assuming they know because they don't and send us to science - science is the one that knows not doctors - we need scientists - so let's find some - lets stand together- my brother has just been told he has problems - but they are the same as mine - but I can see what causing the problem I can tell everyone I can show everyone if they wish to see - I hate this but if I can help because my skin is breaking down I'm going to do it - so as soon as I get to specialist and show them videos etc I will let you know what they say - but it's science - not doctors - LETS STAND TOGETHER - Thousands upon thousands of people suffering because of Lyme disease and the knock effects and doctors - sorry - are useless - 8 holes large ones In my spine after surgery - bacteria - no help - no antibiotics although they won't work anyway - herbal herbal - and this hates tea tree oil - I will be back as soon as I can show them the nasties coming out of my skin this has been going for ten years with a neurological problem I went herbal I have my voice back - I have had foreign accent syndrome amongst many other vocal problems - I drank lemon juice - I now have my voice back !!!! Doctors don't like - laughing - one doctor said I must tell the world so hear I am I can show all what's damaging us - and it's not nice - stay strong and fight back - Rose Henderson Haworth
There is a typo - mistake - sorry -
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