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Old 09-15-2007, 08:05 PM   #1
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acrodermatitis chronica atrophicans (skin atrophy)

does anyone have this? I looked at the pictures, and it looks like old-age to me.

 
Old 09-15-2007, 08:17 PM   #2
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Re: acrodermatitis chronica atrophicans (skin atrophy)

just to clarify, its a skin condition caused by late stage untreated lyme. it causes the skin to atrophy, thin, and the veins to show.

 
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Old 08-07-2008, 01:46 PM   #3
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Re: acrodermatitis chronica atrophicans (skin atrophy)

roro!

You just broke my "case" wide open! I was tested by IGeneX which said I was Lyme positive but negative according to CDC standard. I have been battling with the possibility that I don't have Lyme since the doctors keep drumming in my head that it is all mental. I KNOW that it isn't mental, but these doctors have instilled a level of continuous doubt in me that makes me doubt anything could actually be my problem. I know something is wrong, I just can't believe that it will ever be discovered.

Then I saw this post and did a search on it. This is EXACTLY was has been happening to my skin the last 2 months. I looks like some of the least effected pictures but it is what I have nonetheless! I have had issues for 15 months now, but the skin issues just started the past 2 months.

Thank you! I know believe that I have Lyme. Thank you again!

Do you have this issue?

Last edited by chris0007; 08-07-2008 at 01:48 PM.

 
Old 08-08-2008, 11:08 AM   #4
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Re: acrodermatitis chronica atrophicans (skin atrophy)

I have lyme disease, and several co-infections, but I don't have that skin condition. I had the typical bulls-eye rash in 95, was treated with the standard 28 days of antibiotics, then a year later went on to have various symptoms of chronic illness and treated for many others conditions with no relief.

Then in 2004, I had an acute illness, and either got lyme or some other co-infection and the lyme is just chronic. I dont know. I didnt get properly diagnosed until 2007, because I have so many other issues now, including back problems and had to get surgery.

You need to go to a LLMD, that is Lyme Literate doctor. Go to the lyme board to get a referral to one of these doctors. If they are not LLMD or follow ILADS guidelines, then they are NOT going to treat you correctly. Rgeular Infectious disease doctors only treat acute lyme, and dont treat long enough, they use the IDSA guidelies which are not enough, that is why people become chronic.

 
Old 08-09-2008, 05:51 AM   #5
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Re: acrodermatitis chronica atrophicans (skin atrophy)

Chris, you have to realize that they are using a protocol developed back in the late '70s/early '80s. They had no idea of the propensity of the Lyme's spirochete to go into cyst form and reinfect you later. They didn't realize (or didn't care) that the measly 200mg of Doxycycline only drove the active spirochetes into cyst form and didn't really cure you.

And now that it's been drummed into the DOCs head for years that Lyme's is easily treatable and easily curable, they don't know any better. And trying to get most docs to think outside of the box and beyond what they learned in medical school years ago is very hard.

Did you ever contact that LLMD in Rockville MD that I gave you the info for? He's quite open-minded. He wanted to put me on Flagyl, and I showed him a study that showed Tindamax was better - it turned out that he personally knew the author and after reading it, said okay let's try it. Seems to have worked...

Last edited by Bill S; 08-09-2008 at 05:54 AM.

 
Old 08-09-2008, 06:45 AM   #6
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Re: acrodermatitis chronica atrophicans (skin atrophy)

Hey Bill,

Thanks for the info. I saw a holistic doctor yesterday that said she was a LLMD. I suspected that she was going to lean heavily towards the natural approach, but I convinced her to give me a shot on an oral AB for the time (cefuroxime). She feels that I am beyond the help of orals and need to go right in IV. Since I have never had any ABX treatment for this yet, I thought it best to give an oral a test run.

I have a second appointment with a LLMD recommended on this board in WI. He seems to be a more mainstream LLMD. His webpage is reaffirming. I believe holsitic medicine has it's benefits, but I just want to go with what I have read works for the most part. Unfortunately many holsitic approaches do not have a lot of evidence or studies backing them up. I want to be clear that I am not knocking the holistic approach...everyone is different and for me I want to try a more traditional LLMD approach.

When I move back to DE in a few months, I'll be sure to check in with the doc you recommended. But on the East Coast there seems to be quite a few reputable LLMD in MD and NJ that are about an hour closer for me. But it's always good to have back up plan...thanks . I know having a back up plan has often times been the strength I needed to get up the next day.

So how long did you have it before treatment, how bad where you, how long did you take that ABX, and how long have you been off and still feeling well? I apologize if you have shared this in another thread...my brain isn't firing on all pistons.

 
Old 08-09-2008, 07:18 AM   #7
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Re: acrodermatitis chronica atrophicans (skin atrophy)

Quote:
Originally Posted by chris0007 View Post
Hey Bill,
So how long did you have it before treatment, how bad where you, how long did you take that ABX, and how long have you been off and still feeling well? I apologize if you have shared this in another thread...my brain isn't firing on all pistons.
I agree that while the holistic approach may have merit, I haven't seen much objective evidence that they work. I could certainly use some education in that area. However, using oral abx and lots of supplements/herbs did do the trick for me. It may not for your situation; your LLMD needs to advise you on that...but check and double check with other sources that the treatment seems to be effective for others. IE, don't get sucked into a treatment that only that doc offers and charges out the butt for (may be a scam). Desperate people can be a easy mark for an unethical doc (witness all the cancer treatment scams).

Reposted for your reading misfortune.

I started to get weird symptoms in May 2004. Wasn't diagnosed with Lymes til August 2004, and was pretty much incapacitated. Was given the "standard" abx of Doxycycline 200mg for 3 weeks. Didn't feel any better, and got a bout of C-Diff and yeast infection to boot.

Wandered from doc to doc (the worst and most useless was an Infectious Disease doc), got 2 more tests, both of which were CDC-negative, talked my regular doc into another regimen of abx, but he wouldn't try anything but the "standard" treatment. No effect. Was basically told that Lymes was hard to treat, and that I'd have to live with it.

I carried on until April 2006, with relapses, I'd suffer for a month or two, I'd recover a little, and carry on. April brought horrible changes in my life, and I had the worst relapse yet. Was totally flattened. Even worse, had a large section of my foot taken out because of possible melanona (thank GOD it was merely abnormal and it appears that they got it all). And my father in law was dying from melanoma to boot. I was on crutches unable to even put weight on my foot, had a forced move to a new house (bad neighbor problems) and couldn't even help my wife with her father. I was ready to roll over and die.

I was fortunate enough to find a local doc who was open-minded enough to try new treatments. Turns out that he and a couple people on his staff had contracted Lymes, so he was at least motivated to learn more about it and how useless the standard treatment was. I was tested again and had 4 bands on the Western Blot test. He started me on 400mg/day Doxycycline and it appeared to be helping. He put me on 5 months of Doxy and Tindamax for the cyst form. Then he announced that he was closing his practice and moving out of state :0

So I was back to square one, basically. I kept taking the abx while looking for another doc. A month later I found a Lyme Doc for my father in law in the next state over (he'd been bitten by 2 ticks on the same day; had 2 bullseyes). I ended up calling up that doc, and he's been a life-saver so far.

I had a major reaction to the Doxycycline; little red rashes all over my body that resembled vasculitis. My dermatologist sent me off for lots of tests, all of which came back negative fortunately (some of the possible causes were really AWFUL). My new Lymes doc put me on Minocycline in the hope it'd not trigger such a reaction. Poof, in ONE day, the rash returned. We're thinking I'm allergic to all the tetracycline drugs. Oh no!

He puts me on no meds for a month to allow my immune system to calm down. Once the month was over, he starts me on an interesting regimen of Benicar (to reduce the inflamation so the abx could get at the spirochetes more easily), Vitamin-D supplementation (I was very low onVit-D) and Cefzil. I was to start to take the Benicar but no abx. Interestingly enough, I started to get a few of the red spots during the period when I was ramping up the Benicar and NOT on abx (he later said that he thinks the Benicar has some effect on the Lymes spirochete, but that abx are still needed to effect a cure). We then started up the Cefzil.

After 2 months, we added in the Tindamax.

With this doc I was on:

500mg 2x/day Cefzil
500mg/day Tindamax
40, then 80mg/day Benicar
4000 IU/day Vitamin-D3
tons of acidophilus tabs
Fungal Defense
numerous other supplements to help support my system.

My doc is of the belief that Lyme's is primarly an inflammatory disease, due to the immune system reactions the spirochetes provoke. He uses the Vitamin-D3 25 hydroxyl levels as indicator of levels of inflammation in the body; low levels warrant Vit-D3 supplementation until the levels are consistenly high. He also believes that the Vit-D3 + Benicar combo helps reduce the inflammation that the cyst form of Lyme's creates around itself to hide in the body tissues. This allows the antibiotics to get at the cysts more effectively.

The Tindamax is critical for a "cure" in that it kills the cyst form. If you don't take it plus another abx at the same time, you will probably get a relapse when you stop the abx.

As for tests, he did a typical standard test regimen, plus specialized thyroid tests, stool tests (which detected major yeast overgrowth and food allergies to soy and dairy), several CD-57 tests, several Vit-D level tests, several Babesia tests (all negative).

All told, I spent over $6000 USD, with only about 10% reimbursement from insurance (out of network doc since I could NOT find an in-network doc who knew how to handle my case). Add in about $5000 in prescription meds and supplements. Add in about 2 years of not working much. Lyme's cost me about $40,000 all told.

 
Old 08-10-2008, 08:02 AM   #8
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Re: acrodermatitis chronica atrophicans (skin atrophy)

Thanks again Bill!

So are you better now??

 
Old 08-11-2008, 05:34 AM   #9
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Re: acrodermatitis chronica atrophicans (skin atrophy)

Quote:
Originally Posted by chris0007 View Post
Thanks again Bill!

So are you better now??
I believe so. At least I was feeling great until April when massive family crisis began, and continues (wife was pregnant, mother in law developled inoperable brain lymphoma and comes to live with us, she's now in hospice. In the meantime, I have a newborn son to help take care, so I'm not getting enough sleep.

But I don't think the Lyme's came back. Time will tell.

 
Old 08-11-2008, 06:06 AM   #10
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Re: acrodermatitis chronica atrophicans (skin atrophy)

I wish you the best Bill and hope you don't become ill again. Thank you so much for all the info. I hope things get better for you and your family!

 
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