Topic: Will those with ACA presentation please step forward?
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Goodness Ping, that is a pretty high PB alright. Was yours caused by overactive adrenals too? My cortisol levels are way over what they should be almost by 3 times.
Posts: 7052 | From Colorado | Registered: Mar 2003
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ping
Frequent Contributor (1K+ posts)
Member # 6974
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There's no way to tell what it's caused by, other than Lyme. Doc didn't do all that kind of testing back then, for which I'm grateful, as none of us could have afforded it.
My Dad also had real high BP (also, sx's of Lyme all throughout his family). My Mom's BP was low all her life until the last decade of her life, then, way up. She most definitely had Lyme.
ping "We are more than containers for Lyme"
[ 07-08-2009, 12:08 PM: Message edited by: ping ]
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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TO LIFE
Unregistered
posted
Hi Melanie,
I had some very rough vascular SX. I am still my know means what it should be, but alot better.
My blood pressure and pulse was like a yo-yo. Like if my pulse was down, by blood pressure was way up. If by pulse was up my blood pressure was down or within normal limits.
In my case it was the Autonmic Nervous System.
I try to keep my limbs warm if they have a blueish look. My limbs are mostly pink today.
When you get in front of a fan or fridge. area in the market. Do you know if your pain increases?
Melanie Reber
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Member # 3707
posted
Hey Ping, Yes... I certainly do understand the financial restrictions of continuous testing. I've already spent a small fortune on testing, and simply can't continue to do that either.
I've come to a place where I ask to be treated clinically if a TBD seems to make sense with my current prominent symptoms. Fortunately, my LLMD is mostly open to that, if I can provide enough evidence for my suspicions.
Hi Roz, That is a difficult question for me to answer because I have issues controlling my temp all the time. I seem to be either way too hot or too cold. Rarely, do I feel comfortable.
This has certainly changed for me over the years. I use to thrive best in cooler temps, but now find that I am always cold no matter what the temp is. Especially with my hands and feet.
It isn't so much an increase in pain when this happens, but it is definitely uncomfortable. I am always wearing socks to try and warm my feet, and I am always laying my hands on my hot face and neck to try to warm them as well.
That way, I like to think I am multitasking at something! Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
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Member # 3707
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Possible Role of Borrelia burgdorferi Sensu Lato Infection in Lichen Sclerosus. EISENDLE Klaus et al. Archives of dermatology ISSN 0003-987X CODEN ARDEAC 2008, vol. 144, no5, [Note(s): 591-598, 662-663 [10 p.]] (59 ref.)
Objective: To assess the evidence for Borrelia burgdorferi sensu lato infection in patients with lichen sclerosus by focus-floating microscopy.
Setting: Dermatology department of a university hospital.
Design: Tissue sections were stained with a polyclonal B burgdorferi antibody using standard histological equipment and then scanned simultaneously in 2 planes: horizontally in a serpentinelike pattern and vertically by focusing through the thickness of the section, ie, focus-floating microscopy.
Part of the material was also investigated by Borrelia-specific polymerase chain reaction.
Patients: The study population comprised 61 cases of lichen sclerosus and 118 controls (60 negative controls and 68 positive controls).
Main Outcome Measure: The presence of B burgdorferi sensu lato within tissue specimens.
Results: Using focus-floating microscopy, we detected Borrelia species in 38 of 60 cases (63%) of lichen sclerosus and in 61 of 68 (90%) of positive controls of classic borreliosis, but Borrelia species were absent in all negative controls.
Borrelia species were detected significantly more often in early inflammatory-rich (31 of 39 [80%]) than in late inflammatory-poor (7 of 21 [33.3%]) cases (P=.001). Polymerase chain reaction findings were positive in 25 of 68 positive controls (37%) and negative in all 11 cases of lichen sclerosus and all 15 negative controls.
Conclusions: Focus-floating microscopy is a reliable method to detect Borrelia species in tissue sections. The frequent detection of this microorganism, especially in early lichen sclerosus, points to a specific involvement of B burgdorferi or other similar strains in the development or as a trigger of this disease.
The article approaches an explanation of Chronic Lyme Disease via a visible manifestation of Lyme - ACA presentation:
..."Chronic Lyme borreliosis (CLB) can present not only in different organs but also in different patterns.
Although many theories exist about the mechanisms leading to CLB, it is known that viable Borrelia burgdorferi can persist for decades and cause late skin manifestations of acrodermatitis chronica atrophicans (ACA).
Thus, the immunopathogenetic findings in ACA can serve as a model for studying the chronic course of Lyme borreliosis."...
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Interesting find on Lichen Sclerosus. I struggled greatly with this for about a year prior to my Lyme diagnosis. I had been treating with topical steroid creams and OCP's with no relief. My symptoms practically disappeared after only a few months of antibiotic treatment. Now they are completely gone, thank God!
I just wanted to share some hope with anyone that may be struggling with this too. GYNs and dermatologists do not associate Lichen Sclerosus with Lyme. Thankfully my LLMD was aware of the connection.
Makes me wonder how many people have ACA and Lichen Sclerosus since I have been diagnosed with both?
Posts: 5237 | From here | Registered: Nov 2007
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Sammy, wow, great story! So glad you responded so well. Kreynolds is looking for info on the role of Borrelia infection in Lichen planus (which some researchers are saying is a form of lichen sclerosis). His wife is looking for help with a relative that has this and many Lyme symptoms.
If you are interested in sharing your story there, here is the link:
Any relation between Lichen Planus and Lyme/ Borrelia burgdorferi?
Wow, loads of interesting info here, I'm going to have to print it off and read it slowly as I am struggling to read it from my laptop.
I've heard of ACA but always thought it came years after the bite.
I only got bite in Dec08 but the skin on my feet & ankles is very wrinkled and bluish. The area around the bite mark has turned very thin & shiny and quite like tissue paper. It is also very sensitive to touch.
I am in the Wales / UK (Europe) so I guess its possible.
I've tried to add a photo but don't seem able to.
If you PM me your email address I will be able to add a photo.
Do you know how soon ACA can occur?
Posts: 69 | From UK | Registered: Jun 2009
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Melanie Reber
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Member # 3707
posted
Good morning Panda,
I'm so sorry to know that you are experiencing some suspected ACA symptoms... it certainly is more than plausible that you would be showing signs already.
ACA can present rather quickly for some people... as soon as just a few months, from what I have read. And the fact that you are in the UK, makes it even more likely.
Yes, I would be happy to help you post photos, but if you find it easier right now for me to do that for you, I am more than willing to help that way instead. PM sent.
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
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Member # 3707
posted
Panda's left footPosts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
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Member # 3707
posted
What's going on with that ankle Panda?
Posts: 7052 | From Colorado | Registered: Mar 2003
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The bite mark is still red & inflamed & now its going all shiney. I thought they faded after a few weeks.
It was VERY swollen for many weeks. Now its still really painful to walk on but the swelling has gone. Its always a funny colour but sometimes worse. My doctor has seen it at it's worst & even taken photo's of it, but has no idea what is going on. Xrays are apparently 'normal'.
I still haven't got a positive test so maybe its not even lyme related. Im sure it was a tick bite, I even remember a small insect a week or so before the mark appeared that i thought was a spider.
I'm now on a waiting list to see a 6th doctor, hopefully soon. I keep getting passed from one department to another. To be honest I'm more bothered by the other symptoms than the ankle.
Posts: 69 | From UK | Registered: Jun 2009
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
So, the dark red mark on the ankle is where you were bit? Was you entire ankle/foot swollen or are you speaking only of the bite area being swollen?
I ask because the skin all around the ankle and bottom of your foot does look as if it has lost elasticity, and that most usually occurs when the swelling is reduced.
Are you aware of the UK Lyme site? I don't think they have a message board like this one, but they do have great information and are very kind people.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would lather up real good with organic coconut
oil and let it set for as long as you can. I think
the smallest capillaries and veins are getting
clogged up with something. It may be that the
coconut will bring it out of there. My daughter and
I are both doing this and it is working.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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bettyg
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copied this link to seeking dr. where newbie was looking for llmds knowledgeable with ACA....
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