posted
I was recently hospitalized with dactylitis (swollen fingers)- later the whole hand became puffy. I have the rash, odd color changes, wrinkling...I look exactly like the images of ACA.
I was diagnosed with Lyme with a CDC positive western blot, but was still symptomatic when my doctor decided I was treated.
I have been tested for every rheumatological condition under the sun - nobody will consider ACA because I have not traveled to Europe.
To make this whole thing worse, I recently had an MRI because I still have hand/foot numbness and my brain is covered in lesions. I had a spinal tap a few days ago, I am sure I will end up with an MS diagnosis. Arg. Please Help.
Posts: 9 | From VA | Registered: Jun 2010
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posted
I was recently hospitalized with dactylitis (swollen fingers)- later the whole hand became puffy. I have the rash, odd color changes, wrinkling...I look exactly like the images of ACA.
I was diagnosed with Lyme with a CDC positive western blot, but was still symptomatic when my doctor decided I was treated.
I have been tested for every rheumatological condition under the sun - nobody will consider ACA because I have not traveled to Europe.
To make this whole thing worse, I recently had an MRI because I still have hand/foot numbness and my brain is covered in lesions. I had a spinal tap a few days ago, I am sure I will end up with an MS diagnosis. Arg. Please Help.
Posts: 9 | From VA | Registered: Jun 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey stuck...
Welcome to LymeNet!
You are right. ACA can be and is in the USA. It is caused by untreated or improperly treated early lyme that advances to CHRONIC LYME (B. burgdorferi and other strains).
The reason not many ducks know about it is because they are stupid.
I know, bad Tincup!
I've watched the cases over the years and although there are ones scattered in the mid-west that I hear about sometimes...
The majority of people with it are along the east coast, from Maryland south mostly... and inland for about 100 miles. The further inland it seems the less cases I've noted.
My THEORY is that the birds are dispersing ticks along the Atlantic fly-way that are carrying multiple strains/substrains and causing us to have a one heck of a boat load of problems.
I also theorize that north of Maryland- New Jersey especially.... there are folks being misdiagnosed by the bucket load. Robert Wood Johnson at UMDNJ for example, has a so-called Lyme clinic ... and not far away there is a scleroderma clinic.
If you read some of RWJ and UMDNJ studies, you'll see they are more into trying to prove Lyme is all in our heads than actually doing something positive to help the public with this epidemic.
My big beef was folks would not be treated properly at the Lyme clinic there and would end up with chronic Lyme and the ACA they developed was/is being misdiagnosed as scleroderma.
Of course I am not a doctor and this is only my opinion.
Here are some rash photos that may interest you... including swelling, wrinkles, etc.
As a side note- I've noticed that a "cillin" based antibiotics often work better for it than a "cycline" type. Example- penicillin vs doxycycline.
I also find a cup of dandelion tea (I mix mine with green tea and a lot of milk because I don't like teas) once a day for a few days will help reduce the swelling some.
Here are a couple of links to papers written about ACA and why the IDiots need to change their guidelines to reflect more accurate information.
I've been dealing with LD for 6 years. Late diagnosis, but have been on and off both oral and IV Abx during the 6 years.
I would like to find a doctor / dermatologist that will take the ACA symptoms seriously, but I suspect that the ones I've seen have no experience with it, and give me a topical skin cream, but are not solving the underlying problem(s).
Does anyone know how I can find a Lyme Literate dermatologist that can help with the ACA ?
Posts: 2 | From NC | Registered: Apr 2011
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I have ACA near my knees and ankles. Got tick bite and bulls eye rash after hiking here in Ohio. I was sick for 4yrs before being diagnosed and starting treatment.
I don't know if there are any LL dermatologists experienced in treating ACA since it is still considered a rare condition. From what I understand you have to treat Lyme to halt the progression of ACA. Not sure if you can reverse the condition.
Posts: 5237 | From here | Registered: Nov 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
my hands look exactly like the hands in the photo's...i thought that i was just aging rapidly in the last year...yuck. i suppose that progression can be halted but the skin isn't going back to normal-ever Posts: 3975 | From usa | Registered: Aug 2007
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Yup I had the ACA rash on my hands and would get flare ups of the rash when I would herx.
Got lyme on the east coast of the US.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
Stuckinmiddle- I had a highly suspicious case of ACA on my upper arms and back. My LLMD here in NJ sent me to a dermo who was very aware of ACA- although had never seen one in "person", was still quite intriqued and very knowledgable about it (and Lyme). He ended up doing a punch biopsy, but it came back neg for ACA. If you want his name, and want to travel to NJ, let me know.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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