Lyme and ACA – The “Herx Rash”

Acrodermatitis chronica atrophicans, (quite a mouthful huh?), or ACA, is a skin rash that is indicative of chronic Lyme. It was thought of to be an “only European” dermatological condition in relation to Lyme, but I will explain further exactly why it is very well in the United States. It can lead to widespread atrophy in the skin and can also cause many issues in the peripheral nervous system in more serious cases. ACA is the only form of Lyme in which no spontaneous remission occurs, and its pathology is not yet fully understood, according to one source.

 

Do you remember my feet? Dr J took a look at it and immediately knew what it was. ACA. It is also known as “the herx rash” or “herxheimer disease”, as it generally shows during or right after antibiotic treatment. In my case, as soon as I stopped antibiotics, this is what happened to my feet, with exception of the red sore on top of my foot, which happened while I was on this past month’s treatment. Let me refresh you….

 Image

 Image

Gross huh? 

Here is another picture to illustrate ACA rashes, as this shows some swelling and some of the bluish color that can happen in it’s first stages as well:
 Image

 

It is common among your feet, lower legs, hands and forearms, although can be found on other parts of your body, generally upper arms, shoulders, and thighs. ACA generally begins with an inflammatory stage with blue or reddish discoloration, and turns to a tissue paper like texture. The skin can end up being wrinkled, dry, or translucent. Slow healing ulcerations, or scleroderma-like plaques can occur. Later on, ACA can become atrophic.

 

The first findings of this phenomenon begins with a physician, Alfred Buchwald of Germany, in 1883. Later, Herxhiemer and Hartmann described it in 1902 in studies related to syphilis. This skin condition is known to be from European decent, as research shows that a particular strain of the Lyme spirochete, Borrelia afzelii, which is only found in Europe, is the main known strain that can cause ACA. More strains are now being recognized to cause this skin condition. 

 

Interesting facts of ACA:

 

– ACA only occurs in patients with an active infection of Lyme… if you have ACA, then you are definitely not in remission.

 

– ACA is considered extremely uncommon, with only about 10% of cases reported in Europe. In fact, the annual reportings of ACA in Europe per 100,000 people, were only 146 cases. An even smaller amount has been reported in the United States, predominately in the New England region.  

 

– It is most common for people that have developed ACA to have had the following manifestations during their Lyme journey: Bells Palsy, aseptic meningitis, peripheral neuropathy, and cognitive disfunction.

 

– 2/3 of patients with ACA are female.

 

– Although the disease can occur in any age group, it is most frequently found in adults, usually in their 40’s or 50’s. 

 

– Babesia is also known to cause this ACA rash! I am thinking since this past month was my first Babesia treatment, it just might have had something to do with it!

 

Prognosis? This condition can be a short term reaction when herxing or can be very long standing, from a few to several years and can eventually lead to limitation of limb and joint mobility. Once ACA gets to this stage, it is only partially reversible. Some patients with ACA on occasion develop B-cell lymphoma, basal cell and squamous carcinoma. 

 

I was reading and did not think that it could be true that the cases of ACA are so low, since there are a lot of people suffering from chronic Lyme. The reasons that I found were very, very high amounts of misdiagnoses. 

 

In the U.S., this condition is simply not recognized, as you know many doctors are not Lyme literate, but it is also misdiagnosed by many LLMD’s. Doctors or dermatologists are just plain not trained to know anything about ACA. Like I mentioned before, it is considered extremely rare. Many are misdiagnosed with other skin conditions such as scleroderma, loved, venous insufficiency, Reynaud’s syndrome, edema, eczema, Lupus, or even part of the aging process. 

 

So folks, if you are in a chronic state of Lyme disease and develop a rash similar to these, you could possibly have ACA. Ask your doctor and see if they have any knowledge about this skin manifestation of Lyme. As I said before, it is highly misdiagnosed, but you can always try to educate your doctor, especially if they are a good LLMD, as the best doctors are the ones who listen! 🙂 

 

Things to make you feel more comfortable in the meantime are Benadryl, other antihistamines, soothing creams or lotions, and ibuprofen, if it is causing you pain and discomfort. The only true fix, however, is to kill the buggers! 

 

Happy Monday.

 

http:www.ncbi.nlm.nih.gov/pmc/articles/PMC491996/,lymediseaseguide.org,wisegeekhealth.com,mdjunction.com,wikipedia.com,http://emedicine.medscape.com/article/330178-clinical,www.sciencedirect.com

 

23 thoughts on “Lyme and ACA – The “Herx Rash”

    • Yeah… although it is considered extremely uncommon, I don’t believe the statistics are all that accurate. Just information and knowledge that might help for those undergoing treatment!

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  2. Pingback: Lyme and ACA – The “Herx Rash” | Slices Of Lyme Pie

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  4. It took my own investigation to determine I had ACA. Doctors would blame the aging process or my imagination. It has spread over most of my body. Have been treating for all bacteria associated with Lyme Disease for two years, but skin has gotten worse. Some seeing a naturopath who seems to be helping some.

    It’s for real, and it’s not easy to deal with the skin issues or fat loss. But I’m hoping to kill the bacteria and see some improvement eventually.

  5. I’m pretty sure that I had this type of reaction. I just got the results of my CD57 lab work and it was really low. Told that I most likely have Lyme. Back in the Fall, I had a horrible rash that started out as two bruised looking spots of my left and right abdomen. They then turned to a itchy rash that spread to my chest, back, buttocks, knees, and elbows. It itched horribly. I had to get a steroid shot to tolerate it. Then I stayed on Benadryl for nearly 2 months, Sarna lotion, and cold compresses helped too. It was miserable. I had started the Specific Carbohydrate Diet, Probiotics, Epson Baths, Minocycline, and Bentonite Clay. While the doctors didn’t know, but guessed Minocycline, I look back now and wonder if it was a herx reaction. DON’T want it to happen again. How do you prevent herxing?

    • Lots and lots of detox. Epsom salt baths, therapeutic massage (make sure you find someone who knows what they are doing, you do not want deep tissue, yet a lymph drainage massage and cranial sacral therapy), and I have found juicing on my “antibiotic break” days to be tremendously helpful.

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  7. I have been on Ceftin since April and Flagyl was added last week…….in my research, I found you and the picture of your feet, which is exactly what mine look like!!!! I was looking for info to have ready to speak to my foot doc about. What is the treatment? I have been doing the epson salts foot baths everyday and have been detoxing. Up until my Flagyl addition, I was herxing every 2 weeks for 4 days…..with Flagyl added, it has been a herx every other day. Any suggestions?

  8. Pingback: Lyme and ACA – The “Herx Rash” | Slices Of Lyme Pie

  9. Hi kimmiecakes

    I was misdiagnosed with erythromelalgia EM (burning feet)………which is super rare
    And been to all the main major hospitals/ERs. Finally made it to Stanford university and was there for three weeks staying there and they were stumped ………and told there’s nothing we can do for you
    It looks like it’s EM

    But it turns out it is ACA Diagnosis by a LLmD in San Francisco , California
    ..I’m just shocked
    And yes the pain is real ..lol
    Wow
    This ACA is no joke
    Very scarey bacteria
    EM is bad and is secondary to something, and I guess it could be secondary to ACA attack

    I was wondering I saw your post that you haven’t fully gotten rid of your ACA , how long have you been battling it?! …. and is your symptoms bad still ? What kind of symptoms are you having all these years later?!

    I meen I wasn’t able even to leave my house to walk or take any temperature changes outside
    I was literally trapped in my house couldn’t go no where because of the slightest temperature changes would cause excruciating pain
    So I’m wondering how you are and how much you come along ?!
    And what should we expect four years later

    • Hey! I am still dealing with a lot that I write about, but the ACA does come and go for me, it is during treatment and when I take a break it goes away. It is tough, everyone is different. There is no time frame unfortunately.
      I am still a hot mess a lot of days, but I am soooo much better than I was!!!

  10. Can ou tell me if you had burning? Skin on my arms now 12 years later looks crinkly like thinned but with an outer later of skin? Pain on the outer side of foot? Muscle pain in legs.

    • Honestly I have little to no feeling below mid calf and mine was generally on the outside of my foot, exactly how you mention your arm, and on my fingers. The fingers definitely burned!

  11. This is happening to my son’s nose and hands. He said they feel like they are burning from the inside out…and his hands, as if he just put them on a hot woodstove! I am not sure how to help him…his nose is sooo red it almost looks purple!

    • I would just go with my suggestions, and I am sure it will go away… it is a herx reaction. Sometimes though that isn’t a herx and it is something else. I am thinking maybe Bartonella???

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