Topic: Will those with ACA presentation please step forward?
Melanie Reber
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Good morning Seek,
I mainly do exhaustive research on things that personally affect me or my loved ones. And ACA/ Scleroderma happens to fall within that category.
I am also aware that many here and elsewhere are exhibiting these symptoms but have no clue what is causing them. So we are trying to get the message out to those with ACA so they will not have to suffer needlessly.
SO the research is also an educational tool.
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Melanie Reber
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I would also like to point out that if a patient presents to a 'Normal' Physician... and they actually are diagnosed with Scleroderma...
The 'standard treatment' is then massive amounts of steroids.
The Prognosis is then a 5-10 year (at the most) life expectancy. To me, this is unacceptable. And it should be to others as well.
There are educated organizations who will suggest treating with low dose Minocycline. http://roadback.org/ is one. And the success rate is remarkable.
Now, why would a low dose antibiotic help or actually cure Scleroderma? The answer lies in the above abstracts.
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ping
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Melanie - This is very common in the US among those who acquired LD congenitally. Infection with B. afzelli or garinii in the US is a primary sign of long-running congenital infection, usually over a period of 2 or more generations.
ping "We are more than containers for Lyme"
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Melanie Reber
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Hey Ping,
VERY interesting! Do you have any research to back that up, please? If so, I would love to see it, or if you wouldn't mind posting it yourself... that would be most helpful!
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ping
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PMing you.
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ping
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Melanie - Your PM is full and I can't send you info. I'll try again some other time.
ping "We are more than containers for Lyme"
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Melanie Reber
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Oh Goodness, this is one of life's many little nuisances... I'll make some room now. So sorry.
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ping
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Melanie,
I'll give you a short version as best I can then PM you with docs name where you might still find info. to post. I had the info so long ago, don't know where it is now.
A number of LLMDs, but particularly one that used to practice in Houston came to the conclusion that most of the Lyme pts he had (~75%) were congenitally infected and that it was either a B. afzelli or garinii infection that had been pasted from generation to generation. The only way to tell the 2 apart is by DNA test because presentation was the same (no EM, but rash, discoloration, etc. as you describe) and they both originated in Central Europe. It was part of the LLMD's hypothesis that the infection could be traced back at least 2 generations (sometimes 3 and 4) and was likely also what was referred to at the time as STARI (and might actually be bonafide STARI). Of course, there were always the usual misdiagnoses of PSS (Progressive Systemic Sclerosis), etc.
Another reason that the LLMD knew that the infections were congenital is because B. af and ga have not existed in nature in the southern US is about 30 years. They mutated into other strains such as B. lonestarii, etc., likely to tolerate the heat better.
In conclusion, he found that the vast majority of TBD from about central TX, through the entire eastern Gulf Coast to parts of Georgia & FL has been and continues to be congenitally transmitted. This is very true for East TX, as I am one of those people he talked about. Another example is a lady that I talk with on another forum, also from E. TX who can trace the illness back at least 3 generations and has caused infection in her entire clan of over 100 people (parents, children, aunts, uncles, cousins, grandkids, etc.).
It's a terrible disaster here in TX and I don't doubt the rest of The South. If you think it's difficult getting medical help where Lyme is in any way known to be endemic, try getting help in places down here. Darn near impossible. What a horrible legacy.
ping "We are more than containers for Lyme"
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charlie
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Interesting....and I'm one of those showing some of these symptoms now after being sprayed with herbicide in mid-March by a careless farmer.
I think stress from poisoning (and the ensuing feud) can make things go haywire also.
I didn't realize Dr Harvey was talking about euro strains.
Charlie
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Truthfinder
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Wow, great info, Melanie. Spooky, though.
Ping, that's pretty interesting information, also. I swear my dad had whatever I have and so did his mother, but my mom didn't, so I can't make sense of any congenital transfer, really.
Gee, Charlie - that's awful. How in the world did you get sprayed?
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charlie
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A guy with a cattle raising hobby in back of our place tried to clean up the fence line by spraying 2,4-D on a windy day....apparently I'm one of the sensitive ones who gets all toxic from that particular chemical...fun, eh???
Not sure if it caused an allergic reaction or a partial relapse of some sort, but it's similar to Melanie's presentation.
My guess is as good as any garden variety duck and I don't want steroids so I guess it's back on meds for awhile..... Posts: 2804 | From Texas | Registered: Oct 2000
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Truthfinder
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Gee, Charlie, you must be thrilled to live so close to a genius who can't follow simple directions on a container of herbicide (wind issues). I'm sure the guy's cattle feel the same way (though they were probably upwind).
Hopefully, this is something your body can throw off within a few weeks.
I can certainly understand the ensuing feud issue. Perhaps we'll see you on Judge Judy or People's Court......
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Melanie Reber
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Yes Ping, that is so very interesting. I actually grew up in the south and lived many years along the Gulf Coast and have European ancestry on both sides. I've also spent a LOT of time in TX.
I've not the time right now to explore this particular aspect of Dr. H's studies, but am excited to do so when I can. Even w/out reading the studies, I can see where the implications are going from your descriptions, and that alone IS very exciting.
I have to wonder if it is 'congenital' in the strictest sense of the word, as in Mother to child. OR if he has hit on some form of genetically inherited DNA that has been passed down.
Your description seems to favor the latter.
I think we also have to take into consideration that the Atlantic coastline is a migratory flyway and that the Gulf of Mexico including the ports along the Mississippi River are our main stopping places for vessels from every continent.
And what are the main stow-aways on those vessels? Why, rats and mice of course. And what are the main reservoirs of TBDs, not to mention little tick magnets themselves... yes, you see where I am going now.
So, for anyone to conclude that Ba and Bg are ONLY found in Europe... is simply a ridiculous assumption.
(oh, and of course this is my opinion only...however, if you do enough research, you will find it to be true)
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ping
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quote:Originally posted by Melanie Reber: I have to wonder if it is 'congenital' in the strictest sense of the word, as in Mother to child. OR if he has hit on some form of genetically inherited DNA that has been passed down.
Your description seems to favor the latter.
I think we also have to take into consideration that the Atlantic coastline is a migratory flyway and that the Gulf of Mexico including the ports along the Mississippi River are our main stopping places for vessels from every continent.
And what are the main stow-aways on those vessels? Why, rats and mice of course. And what are the main reservoirs of TBDs, not to mention little tick magnets themselves... yes, you see where I am going now.
Melanie - You make excellent points.
With regard to the congenital transfer aspect, at present, I lean more toward the Mother to Child, more than the DNA inheritance factor, although, it has no doubt played a role.
Yes, stowaways were part of the problem, as it was with Yersinia outbreaks when the upper crust thought by going out to their country estates, they would somehow escape the mode of transmission and unknowingly took the pestilence with them. The history of The Americas is clear enough to be able to generally trace the Euro strains. Not only do we have the migration from western Europe (England, Ireland, Scotland) into East Coast US, but Spainish from S. America thru TX. Then, the French throughout Canada and as far south as Louisiana. The Germans and other Central Europeans arrived slightly later.
Since Ba and Bg are esp. suited to cooler climates with actual change of seasons, it would not be a stretch to find it not only in upper US but all over Canada.
Pls keep me informed on your research findings.
ping "We are more than containers for Lyme"
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Melanie Reber
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Yes, on my Mother's side, we are Cajun French and Spanish (Spain). However, with so many generations living in and around New orleans, there is a lot of mixed blood. (Plantation owners and overseers)
So, your point of the French Canadians (or outcast Acadians) migrating south was what I was contemplating as well. This really resonates with me.
My Father's side is pure English and Native American. However, even though I have European ancestry on both sides, my Father was stationed in England as a pilot in the USAF... before marrying my mother.
I've also traveled extensively, so the possibilities are endless. But uncovering those possibilities for myself and others... Ah... that intrigues me!
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ping
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quote:Originally posted by Melanie Reber: I've also traveled extensively, so the possibilities are endless. But uncovering those possibilities for myself and others... Ah... that intrigues me!
Go for it, Melanie! Please share whatever info you find out with us!
ping "We are more than containers for Lyme"
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Melanie Reber
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Blue discoloration in fingers, palms and wrists of both hands (indoors)
...
Loss of skin elasticity on inside of foot when edema is reduced. However, edema still pools behind outside ankle of foot (outdoors)Posts: 7052 | From Colorado | Registered: Mar 2003
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ping
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Melanie - My feet look exactly like that, with just the edema problems described. I never had the bluing of the fingers.
ping "We are more than containers for Lyme"
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Dear Melanie,
I am focused on the red dot under the skin, a bit south of the bracelet.
Melanie Reber
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Ah, that is a Cherry Angioma. If you look that up, you will find that there is no known cause.
However, many LLMDs think this is a sign of Babesia. Especially if found on the trunk and chest. Most of mine are in those areas, but I also have them on my arms and a few on my legs.
They do not hurt at all, but are just slightly raised and if picked at they will bleed profusely.
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ping
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quote:Originally posted by Melanie Reber: Ah, that is a Cherry Angioma.
I have them also; on arms and esp. legs.
ping "We are more than containers for Lyme"
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Melanie Reber
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Ping, I wasn't sure if the blue would even show up in such small pictures, but suppose it does? I actually look as if all those areas are terribly bruised, although there is not a lot of pain involved specifically in those areas.
The pain is more dispersed evenly in both hands and feet as if the nerve endings are inflamed and the skin itself hurts. And if I should bump my hands or feet against anything, even slightly, the pain is quite a bit more than one would expect.
If I even hold something too tightly with my hands, they feel bruised. Very strange and very difficult to get use to.
Do your feet also swell quite a lot too? I think this is what causes the loss of elasticity of the skin. Once the swelling decreases, the skin does not go back to normal, but wrinkles up instead to what is termed 'cigarette paper' texture.
If you look at the link to the other photos I have posted, you will see more images of the swelling and skin issues.
ping
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quote:Originally posted by Melanie Reber: Do your feet also swell quite a lot too? I think this is what causes the loss of elasticity of the skin. Once the swelling decreases, the skin does not go back to normal, but wrinkles up instead to what is termed 'cigarette paper' texture.
Oh yes...they do definitely swell.
Melanie, do you have hypertension?
ping "We are more than containers for Lyme"
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Melanie Reber
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Yes, unfortunately and a high pulse rate. This is something new for me, as I have always had a very slow rate and low BP. My last apt. readings were BP 159/90, HR 126. I was not nervous and I had been sitting for at least 10 minutes before these were taken.
Most times I can feel my heart beating, and at other times I can actually see beating. I was told that this isn't 'normal'.
My doc believes it is due to my endocrine system being whacked now. Thyroid and adrenals are way off. I am basically in a catabolic state, this explains so many issues I have currently.
We are trying to regulate these with thyroid meds and diet modifications... but I'm not sure any of it is actually helping. Well...especially the diet mod, as I simply forget to eat.
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ping
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Yep. What you've described is what Dr. H. said he found in the majority of advanced Lyme pts. Low BP for most of the pts life, spiking to high BP and fast pulse. Even when you go into remission, these malfunctions remain.
Mine was 180/110 before it was diagnosed. I take beta blocker to help lower BP & pulse and diuretic for the edema. AThyroid also, although my readings are just inside the normal range, my doc says that sort of reading is deceptive and that thyroid is an issue.
ping "We are more than containers for Lyme"
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Melanie Reber
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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.
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ping
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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 ]
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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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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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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
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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?
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nenet
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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?
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Melanie Reber
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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.
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Melanie Reber
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Panda's left footPosts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
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What's going on with that ankle Panda?
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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.
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Melanie Reber
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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
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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.
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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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