Well, Reynaud's has been associated with Lyme, and it causes discoloration of toes and fingers (and sometimes the nose) due to circulatory issues. Reynaud's is associated with connective tissue disorders and Lyme definitely likes to live in connective tissue.
I do not know if Lyme causes long term discoloration that you describe. I haven't heard of that before. Have you found any similar examples on the various message boards?
well, actually I haven't even found anything that causes permanent discoloration like mine even by other disease than Lyme. But I was wondering, maybe there's something that causes this which is secondary to Lyme?
At the beginning, I thought this could be Raynaud's, but confirmed that it doesn't cause permanent discoloration :S
www. rightdiagnosis. com/sym /cyanosis. htm
Those two URLs above are the same, it's just that in one of them, I put in some extra spaces in case the 'bot' blocks out the URL without spaces. Usually only happens to email addresses, but just in case .....
That website is down to earth and matter of fact, uses 'grown up' medical words instead of talking down, and has a list of possible conditions that could cause cyanosis. It's a pretty long list, but once you've trolled through it, it might give you some ideas. (It even breaks things down according to body part, and blue vs purpleness.)
I would do what you are doing: continuing to pursue a diagnosis. I have learned the hard way that docs these days are almost all so burrowed in to their own specialty areas that they lose sight of the fact that we patients need Big Think sometimes.
Lyme has different effects in each of us, and especially if the tick that brought Lyme also brought other infections, as it does maybe half the time. So pursuing Lyme, alongside checking on other possibilities, is what I would do too, as you are.
You may have to troop through different kinds of docs till you find one that has an ah-HA moment, because docs (so I have learned the hard way) have huge blind spots sometimes, and it falls to us the patients to keep them on track, or to find another doc if the first one (or ten) don't figure it out. It took me 20+ docs to get a doc who even tested me for Lyme, and then that same doc (never mind the positive test result) said I couldn't possibly have Lyme! DUH!!!
So, sorry we don't have any specific suggestions, but try that website and work your way through it, then when you get an ailment description that matches yours, find a doc who practices in that area and go see him/her. But even if the doc tells you no, then if you still feel strongly about the possibility of a particular ailment to explain your symptoms, find another doc in the same discipline (like hematology, for example). In my long march through 20+ docs, I was amazed at how all over the place docs could be, even when they were at least nominally in the same practice area.
Actually, I like it that docs are not all cookie cutter (tho nationalized diagnostic and treatment standards will push us in that direction, imo), so use it to your advantage. Please let us know how it goes and what you figure out, okay? Wishing you all the best -- hang tough!
I have Lyme, Bart's and Babs, my Bart's lesions and scars turn a purplish red color.
Acrodermatitis chronica atrophicans (ACA) and/or bartonella, all part of Lyme disease.
Acrodermatitis chronica atrophicans (ACA) is the third or late stage of European Lyme borreliosis.[1, 2] This unusual progressive fibrosing skin process is caused by an ongoing active infection with Borrelia afzelii. First delineated in 1883, it was described in 1902 as a tissue paper–like cutaneous atrophy.
ACA is evident on the extremities, particularly on the extensor surfaces. It begins with an inflammatory stage characterized by bluish red discoloration and cutaneous swelling and concludes several months or years later with an atrophic phase. Sclerotic skin plaques may also develop. Physicians should use serologic and histologic examination to confirm this diagnosis.
It may be reversible. I may had mild case of it, it went away with Rocephin IV after 10+ years of having "tissue paper-like cutaneous atrophy"--some area of my body looked like wrinkled paper.
My skin was also flaky. At first it appears to be fungal infection, but it isn't. I also have other skin manifestations, apart from discoloration and wrinkled paper-look. My dermatologist couldn't figure it out. The skin biopsy and skin scrapings show evidence of changes in the skin structures but cause could not be found. Autoimmune diseases was ruled out.
When I was diagnosised with Lyme disease by my neurologist and placed on Rocephin IV, these skin conditions starting to fade away. My dermatologist were impressed by it.
It also can be due to bartonella, as mojogal described.
Did you have your heart and lungs checked out? And has your blood oxygen level been checked with a pulse oximeter (it clips on your finger and tells your blood oxygen levels within a few seconds)?
Blue nail beds are most often associated with heart or lung issues reducing the amount of oxygen carried in the blood. Are you having any shortness of breath? Babesiosis is a tick borne disease that infects red blood cells and reduces oxygenation. It is a parasite that is a relative of malaria, and it is spreading quickly in the U.S. it is relatively unknown outside the world of LLMDs. Have you read about it yet?
Do you have any other symptoms (digestive, vision, cognitive, fatigue, irritability, pain, etc.), or just blue nail beds, ear lobes and skin abrasions? Because you describe the same discoloration of the skin with a scratch or irritation, I wonder if you have a bleeding disorder or an immune system issue (not healing well). Those might be questions to ask your doctor. Do you seem to bruise more easily lately?
If you have no other symptoms, I would guess that Lyme is a long shot and you should go back to your doctor for more testing. And perhaps go see a rheumatologist to evaluate connective tissue disorders.
Keep us posted!
I had my lesion biopsied with a result of "vasculitis" . Some of these lesions start off red/blue/purple burning sores, then turn into a flat scratch like a scar that had not gone away in 2 years.
Sometimes i get what i fondly call a "ghost scratch" A scratch appears out of no where and then turns into a lesion in the middle that burns in the middle and eventually becomes the faded flat scratch looking scar.
I believe they are Bart's lesions because I have them many strange places.
I still don't understand how I came up positive for Lupus by a rheumatologist and by the time I get to my LLMD it is gone. Just like my blood test results, for example one month I am anemic and the next I am not, and I am not taking anything for it.
This is what makes Lyme and its co-infections so difficult for mainstream docs to treat.