Welcome to MedHelp -- we are glad to help any way we can.
I see you are near Atlanta. Have you located a Lyme specialist near there, or have you seen one elsewhere? How far can you travel? With some data like that, we may be able to come up with some sources of help for you.
Do you know if your current MD a member of ILADS? Is he/she a dermatologist, or a Lyme specialist?
You are right, there is much ignorance about Lyme, but there are good people out there and we are happy to help you find someone who can help.
Hang on, and give us a bit of background on where you've been (which medical centers in which cities) and what kind of docs have treated you. We do NOT post MD's names here in the open, because of possible harassment by disbelieving medical boards etc., so for now, just a bit more history will help.
Will look forward to hearing back from you --
Hi, if I understand you correctly with my foggy Lyme brain, I do have that atrophied looking skin on certain areas of my body.
However my LLMD says mine is because I went from being a kick boxer to not being able to walk, then to do much of anything which caused that atrophy. Exercise may be able to fix my problem. Like Jackie said, we would need more info to better understand.
Did you contract Lyme in Europe? That seems to be the most common reference I've seen to the use of the acronym ACA.
And-----IMPORTANT----- have you been treated or are you currently being treated for Lyme disease?
From what I've read it IS possible to stop the progression. Long term doxycycline or penicillin is said to be the med of choice for ACA. That may stop the progression of it and perhaps reverse it a bit.
Have you seen a dermatologist for this? Some derms. will treat the 'condition' without needing to mention Lyme.
Thank you all. I am so frustrated because, it seems, very hard to find someone with this type problem with Lyme DIsease.
Bottom line is I have seen an LLMD in Tennessee. That doctor has been responsive and trying different things. Could not afford iv antibiotic suggested because insurance will only pay one months. I have been financially choked through all this, being self-employed. Have tried Rocehpin with azithromax, but had trouble on those meds and "circles" (erythema migrans?) kept forming, along with atrophy and some hair loss on head. He also has me taking naturals, like enzymes, microbial balancer, Enhanca repair, Nystatin, probiotic etc...
Then went to 400 mg of Doxy, but problems kept getting worse, so doctor has me off that now. I have sepnt at l;east 100 hours learning online (was a reporter for years) and am now putting colloidal silver on circles, taking one dose of it a day and taking enzymes with probiotic.
One thing that did concern me is my doctor did not know what I meant when I asked about ACA in an email a week or so ago. The doctor replied with a question mark (ACA?) Then said we should try iv meds, as I had mentioned I may have to try out of desperation.
The story is much longer as it all started in Oct. 2011 with something called Sweets Syndrome, which scared hell out of me. It can come iwth lukemia, especailly in men, or other infections. I was also on prednisone for months because of it, another concern.
Your help and time is very appreciated. I thank you for your kindness. Bythe way, I have been in touch with the georgia Lyme Disease Assoc., but no one has dealt with the skin deal here.
I am sorry for your suffering.
I have only been on oral abx for the same reason as you but have much improved. I have switched up meds a lot.
You need to be on a cyst busting medication too. For example I do a 2 week rotation of Flagyl that kills the cysts formations.
Also if you herx, that will make you feel worse but is a good thing because it proves you are killing the bugs.
Let us know if you have other questions.
"Interpretation: Oral doxycycline is as efficient as intravenous ceftriaxone (Rocephin) for the treatment of European adults with Lyme neuroborreliosis."
Just one of many published and anecdotal reports. Enough that I believe it, although I did have IV 'just in case'.:) No real abatement of symptoms until I took IM bicillin LA. ---- which is NOT a recommendation that you try bicillin; just what worked for me.