posted
HI Nancy, I live in Sussex Co, NJ. My first bite was abt 1988. Undx'd for Lyme 19 yrs, but many other dx's. Second bite 2006, got some treatment for this one. Take care.
-------------------- Take Care, DakotasMom01 Posts: 371 | From NJ | Registered: Dec 2007
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posted
new to the site..... just reading some of the threads.....its been very interesting.... then I found this one.....
started my Lyme journey in 1990.....had it for at least a year or more before dx and treated. years of treatment...years of remission.....
i live in Point Pleasant....originaly from Summit......was probably bit in PA (family trip). this website has been helpful....I really don't know anyone personaly who has Lyme...or had it.....or has gone through it...... so here i am...... so hello....
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
I was born in California, then I lived in Ocean County, NJ and now I'm in Sparta, NJ. I'm not sure where I was bit. But it was either in California or Ocean County about 8 years ago.
posted
Grew up in Westfield, NJ. We also had summer house in the Poconos. Lived in Upstate NY for 1 year in 1977...but believe it or not, I think I was bit over 20 years ago on a trip to the woods of Oregon. I have been ill since early ninties (was diagnosed with MS) but was still able to function. Diagnosed with lyme in late 2003. Started treatments and am now on permanent disability since 2005 and can no longer work. Still live in NJ.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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posted
I was also born in California, but lived in NJ for more than 25 yrs. I live in Northern NJ. Not sure when I got bit. It was probably as a teen, but was kept in check by my immune system until I got the vaccine and probably another bite (unexplained rash on arm that I though was poison ivy, but it didn't itch) about 8 yrs. ago.
Posts: 418 | From NJ | Registered: Sep 2007
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have any of you found any support groups...... this website has been so helpful to me.. was wondering if there was anything else out there....
cordor....i just applied for disability..... i don't NOT want to work......but its impossible. did you have a hard time getting it..... they say i will probably get denied and have to appeal......ugh!!
anyway....you all have a nice weekend....its a pretty one out there today........ my husbands going to walk me..... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
mtree- They started to give me some problems with the disability. They told me I had to go for a physical with one of the State docs. My husband went nuts and emailed the Governor's office. My own doc who filled out the paperwork is a very well respected lyme doc in NJ and WHY was that not good enough for them? Anyway, the e-mail stirred the waters and we actually DID get a call back from the Gov's staff. Lo and behold, the "physical" no longer was needed and I was approved within 2 weeks (first time applying) I will say.... I have documented brain lesions and abnormal brain spect among many other disabling symptoms. I would like more than anything to be able to go back to work. I LOVED my job of 13 yrs. But honestly doubt at this point that will ever become a possibility again. Sad to say.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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posted
..... cordor..... thanks for the info. on disability..... haven't heard anything yet.....my doctors all sent in something........ i too have complications from Lyme and also other challenges besides Lyme...(brain wise)....so im hoping it can just be a slam dunk...(don't think that will happen though)........
good for your husband.....so important to have that support.....tell him thanks for me......maybe it will make mine and others who apply easier....
jennyflyer- someone on this website....said he started a group in south jersey exit 63 off the parkway.....every third thursday of the month....i pm'd him to tell me more but have not heard anything....I think his name was improv..... know anything about that?? just looking for people that are going through the same stuff.....everyday stuff....trying to keep up with Lyme and life........ i don't know about any of you....but my husband and I are having such a hard time with family and friends....they just don't get it..... we just keep it to ourselves now mostly....its easier then to have to explain..... not looking for sympathy but a little compasion wouldn't hurt.....
have a good day everyone.....and night.... mtree ps........don't know if you read that very sad post about Adam.....he lived in Verona NJ..... sooooo sad.....
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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I am posting them but not sure if they will be clickable.
You can go to the left side bar, click on support groups, then United states, then NJ, this list of groups is there.
~Cape May County ~Greater Raritan Lyme Disease Support Group ~Long Valley LDSG ~Lyme Care Support Group ~Lyme Disease Association, Inc. ~Lyme Disease Information Group of Burlington County ~The Lyme-Tick Borne Disease Support Group ~Lyme Vaccine Victims ~LymeLight Lyme Disease Support Group ~Morristown Lyme Disease Support Group ~NJ Self-Help Group Clearinghouse ~North Jersey Lyme Disease Support Group ~Resources Only ~Southern Ocean Co. Lyme Support Group ~Sussex County Lyme Support
Hope these help.
It is very sad news abt Adam. Tim, his father, runs the Sussex Co Group.
Good luck with the disability. Hopefully with the right dx it will be easier & less stressful to get. Take care
-------------------- Take Care, DakotasMom01 Posts: 371 | From NJ | Registered: Dec 2007
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Itsy_bitsyone
Unregistered
posted
Johnny,
WELL. Looks like we were neighbors.
I lived in Sayreville, where I caught the bug. Then Monmouth county...Middletown...till 95 (I think). I come back a few times a year.
seems like there are quite a few of us around this area.....
Jennyflyer.....maybe we can start some sort of support group........or somethin.....
I know that it is difficult.....the well people are back to work.....back to ...as my husband and I call it ....."the land of the living.".....
and the people that are not well.....can't get anywhere....or they are too sick to travel.....
but its so hard to fit in to the "normal" people's lives......
I don't know.....does anyone else have this lonely abandon feeling as we do... ...nobody gets it..... its so difficult sometimes...
anyway......sorry for my little pitty party....
have a good day everyone..... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
I would like that very much. At the beginning of Feb, I will be getting an studio apartment up in northern NJ to be closer to work, but will still be down in the Ocean County area most weekends and some weeks during the week.
It is tough with work. I don't know how anyone would feel about meeting on a weekend...?
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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yes Jen....I would be willing to support on the weekends
I'd like to say my weekends are full with my social life....but........
..totaly free..... just don't feel like being around people that just don't get it....like you said Jen.
.and I don't want to have to explain myself.....
Johnnyb....yes you are lucky with work....whatever you do.....
let me know if anyone wants to get together..... and or if you know anyone from NJ who would like to....
have a good night..... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I have lived in jersey my entire life..
except when i was in college then i was in philly.
symptoms started in 1987. I never had "the rash" and by the time my symptoms started i was 10 years old so i had been bit by lots of ticks..
but had to be infected somewhere around here in south jersey.
I was finally diagnosed with lyme 2000. By then i was disabled. (and still am)
babs diagnosed 2006-07 about 18-19 years after symptoms started.
alot of you sound like you are central or north jersey (although since my brain is not working to good i may be mixing up where certain counties are )
Its kinda odd there is not more south jerseyians cuz there is alot of lyme down here... although no llmds down here.
I have to say....reading all these threads from NJ Lymies has been a comfort.....
this website is great....but some how reading NJ peoples threads have been even more of a comfort...
not sure exactly why....
anyway.....
bad day to start.. ..lots of head pain..... been on Doxy for a week....
totaly a herx reaction.....?? who know's...... just hoping its not ALL day.....when its pain like this it can get scarey.....
its amazing how much the tolerance of pain becomes......
you all have a good day..... so pretty out there.....(hurts my eyes though) difinently a sunglasses day...
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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oh would i love to just sit on the beach and breath.....
but today is a couch day and football...
always better then no day....
have a good one mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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Well now, Angela & I are in Passaic County, Totowa, but we're not the Lyme victims ... as far as we know neither of us have ever been bitten by a tick.
The Lyme victim is (symptom free for 8+ years) our daughter, Lori, who (best guess) was bitten in the PA Pocono's sometime between '84 and '88 when she went to basketball and cheer-leading camps there. She was dx in 1996 ... her story is at: http://www.angelfire.com/nj/lorib/ (Geez, another to-do ... I need to update that page.)
thank you for the website on how Lymenet came about......very awsome.....
I came on this website looking for a support group.... haven't found anything close to home.....I'd have to travel a bit to get to one.....
but in doing so .....found that this website is a great support and comfort...... it really has made a difference for me.....
anyway..... I just wanted to say a hello to you.... do you or anyone in your family attend a support group.
we will be going to the documentary of Under Our Skin in NY......
planning and doing are two different things though lately...... but we do plan to.
have a good day..... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
Hi, this is for my hubby...about 12yrs ago we bought a summer place down the jersey shore (south) he just loved it..i was to busy waiting for our first grandchild..well in 1999 0r 2000 he had this round bulleye type rash on his leg..he said it look like a spider bit..we never saw anything like it before..oh he was raking leaves...in 2001 he got so sick dr thought it was the flu...he got sicker and sicker and ended up with such bad head and eye pain he could not work and had to go out on disability..not until 2006 did he finally get a pos for lyme...being treated now for 15 mts..no changes yet but i'm sure glad i found this website because it has helped so much and the people here are so helpful..we family menbers need support..some just don't understand how bad this disease really is...by the way we live in camden county and since he was pos for lyme he has no desire to go to our shore house only because he is to sick and can't enjoy the sun and fun.. so i take the now four grandkids or our daughters and family go down..take care everyone and God bless
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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lived in North Jersey moved down in 1990..... and my journey with Lyme began.....
madge.... I hope you do find support here..... I know for my husband it is hard as well.....
do any of you go to a support group anywhere in New Jersey??
I still would like to find one.....or create one....
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
no Lyme support group..but more than 30 years ago he went throught another realy bad time and i went to that group for families...and to this day they are there for me...they call and give me words of wisdom..and i get to feeling ok again..plus a few close friends keep me busy...and last week after being retired for over a year my work called and needed me..my replacement got hurt and will be out for 2 mts..so i can make my own hours and it gets me out and about... and few bucks don't hurt...so we all do what we have to..just to get by...in a few week i'll be able to go down to shore and breath in the air and walk on South Jerseys Avalon Beach.. that makes me feel calm...take care all
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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posted
gee, the things you find when your just playing around!!
I'm another Jersey person, lived most of the first 20 years of my life in Sussex County, spent the last 21 in Monmouth.
My son is the only one in the family with Lyme, he was diagnosed last summer.
mtree, we are pretty close to each other, if you want to get a support group going, and are open to a non-lymie who cares for a little one with lyme, let me know. (remember, parents of kids with lyme can use some support too!!)
Given my past life as a social worker, I might be pretty useful in setting up a support group. (I'm a stay at home mommy now).
Take care all. kp
ps, I've noticed a new NJ lymenet member, njlymemom, I welcomed her on board already, but I'm sure she'd appreciate a hello, especially from someone geographically close to her (she's in Sussex county).
good night again. kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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Kp...when I first got on this website i was looking for a support group for my husband and I....the one I found was south jersey..... my husband would take me....but I started to get so much out of this website....support...comfort ...information..... its has been a blessing to say the least....
I would like to have a support group though..... My husband and I were just wanting to meet others that are going through the same stuff........ ......everyone....including spouses...mom & dads......all who need it...
.we are all in this together whether we actually have it...or have a family member that has it.....we all struggle....we all fight....
I am just starting to see some light right now......getting better....slowly.....baby steps...but moving forward and not backwards....
I would definently like to help with getting one together....I would like to offer more of my husnbands help....I'm still not driving much...and can't rely on myself yet with any sort of commitment......but I'm willing to try...
....and I know my husband would do anything....he needs just as much support as me.....
let me know your thoughts....I know you must be really busy with your son.....I'm thinking you have more kids too....
I will talk to my husband today of what he thinks.....
He works at a hospital.....and I keep asking him what they are going to do for Lyme Awarenss month......I'm thinking that maybe his department can where a lyme ribbon or something......and to take a pol of how many people are effected by it...through out the hospital....
I think that there are more of us out there....but we suffer in silence...walk in silence and support in silence....its gotta change....
Also......I think Jennyflyer (Ocean County) was looking for one....or wanted to start one......
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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4 out of our family of 5 have lyme and coinfections. we have lived here 18 years. I probably have had lyme since childhood, and grew up - are you ready for this - in Paterson NJ.
Spent summers at the shore - and played in the woods on the outskirts of of town.
Wanted to start a support group, but then I get hit with the usual, well you know, and it is too overwhelming. I looked up support groups and there was one here, but it disbanded.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
Hi All, it's been a while since I've posted anything here. It's not been a good few months.
Got better for a while, then started going downhill again, as you guys are all too familiar with.
Still living in Ocean County, that's another story, lots going on with my job and may be going tto another company which would allow me to telecommute.
Still interested in a support group, it's just having the time and energy to organize.
Is anyone attending the premiere of Under Our Skin in Tribeca? How does one go about getting tickets?
Jennifer
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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My husband and I are thinking about going to the premiere in May, rather than Tribeca. My son has a doc appointment the day of the Tribeca screening, so it is bound to be a long day for him, and we hate to have a sitter on days that he's wiped out.
The Monday night thing is rough too, but what can you do??
If anyone else is going, perhaps we will see you there.
take care. kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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posted
we are possibly going in May..... I want to .....but not sure if the Lyme wants to go.....
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by njlymemom:
and played in the woods on the outskirts of of town.
Barbour's Pond on Garrett Mountain?
I grew up on Rifle Camp
Lived in West Paterson, Clifton, Rutherford, Fairfield, North Caldwell, Nutley, Howell, Manahawkin, Brick Twp., Edison and now at the seat of Middlesex Cty, right between Monmouth & Mercer.
Briefly lived in the Catskills (Upstate NY), vaca'd in the Adirondacks, Catskills, Poconos, (Jersey Shore of course), Florida, California, Greece, Bahamas, Bermuda, Tuscany ( febrile illness), Yugoslavia, Hawaii.
I think that's the extent of my travels.
At age 17-18 I worked in a research lab at Roche, Nutley. We were evacuated because of a "release" & HazMat had to clear the bldg. They said everything was fine, that it was on a higher floor.
I was out with pneumonia for a month & I can't remember the time frame with relation to that evacuation. I find that a tad disconcerting, with presently trying to discern the "coinfections" that have been preventing me from fully fighting off the Bb.
I do know that they were working with different airborne viruses & such. At age 17 the thought that they could have actually jeopardized my health, and NOT told me that I should be concerned, never occurred to me.
I have often thought that I would LOVE to get a support group going around here, but I just can't seem to trust my ability to be functional enough on any given day to commit to keeping it going.
I wonder if it could work if we could got a few people together to try to run a group. Then perhaps we'd have a better chance of maintaining a meeting schedule & not having to cancel meetings.
IMO, weeknights would likely be really hard for those who are working, raising children or have vision problems. I would have to think that Saturday afternoons would likely get the best turnout.
The group that Dr.B & Dr.Y have been moderating in NYC meets on Saturdays, once every other month. I wonder what type of meeting schedule other Lyme Support Groups have found feasible.
I also have to wonder what distance anyone would be willing to travel. Would we need North, Central & South or would a Central Jersey location be sufficient? I guess it would probably depend on when the meetings are held.
It's so much easier to just get on the internet, in the comfort of your home, in your pajamas, when you don't feel well. It does concern me though that there ARE people out there without internet access, who may need help/support.
I believe that there is an active group in New Brunswick. I think I saw something posted about a meeting, but for some reason I think it was a weeknight. I'll have to go look for it.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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In regards to the support group thing, my first thought would be to contact local churches to see if they have space available, recommended donations for use of space, ect. I would also like to see if it it is possible for the space to have an adjoining area for kids, as many of us are moms and dads, and our kids could, in a manner of speaking, have their own little support/play group going while us grown ups figure out what it is that we want to do.
It is not unheard of for churches to allow such use of space, many here in Monmouth Cty host AA/NA and GA meetings. I like the weekend idea, particularly if we can include the little ones, although if we can't get that piece in, then it adds in a babysitting factor for the parents who participate.
Let me know what you think, I can call around to local churches if you like.
Take care. kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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My husband said that hospitals also provide a place for meetings/support groups.....
glad to see many of us WANT one....we just have to stay well enough to get to one....
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
I was going to suggest that we all start by attending the Spotlight on Lyme function on May 18, but then I remembered I'll be on vacation that week.
Renting a beach house down in SC that week. Can't wait, nice and relaxing. Not the usual adventure travel that I like, but just as good relaxing on a beach for a week.
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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posted
Jen, The spot light on lyme thing is tempting, but it happens to be on my son's birthday. For some odd reason, I suspect that he won't want to be doing anything lyme-related on his big '6' day!!!
We can look into hospital space as well, but I think it will cost more. (that would be why AA/NA ect use church space, it's cheap). I used to transport people to meetings, that's why I know about them.
If I were working, I'd just use my own office space!! Oh well, my current job needs me too much to give me back to the workforce.
If you want, I can look into it, it doesn't hurt to find out if or what the cost would be.
Take care. kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Oooops! Lymed-Late as usual. Thanks for the link hubernacker.
I know there was a link somewhere for help with getting a support group started. I'm not sure where that one was either.
Perhaps it would be a good idea to try to make meetings at an established group, that might be out of the way or inconvenient, for a while and then branching off into another. ????
Thanks for the link Meg! Nice of you to drop in
I wonder if you could get cheap space from a hospital, if you could get the support of an affiliated Dr.? The problem there being that most affiliated Drs are probably not LL.
Where IS the "Spotlight on Lyme" function?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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As far as May 18th....sorry but you have to count us out too........ I am very happy to say that my son will be graduating that day..at Brookdale College..for Respitory Therapy..... .as a Respitory Therapist... you would have thought that being around an illness all his life he would stay clear of a hospital and sick people......
I am so proud of the compassion he has for people....and shocked that he can stomach it all.... anyway...it is on May 18th....
I also agree that maybe we can meet at an established place first...... I know there is one in South Jersey......but the New Brunswick one may be closer to all.... either way we would try to get to one........
Jen- have a great time in SC..... a week at any beach is wonderful......I'll send some prayers up that you will feel great!!!
Hope everyone is doing good..... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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just wondering if anyone is going to the Under our skin documentary?
we are going tomorrow night.....Sat. 26th
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
I'm not from NJ, but I did get lymed in NJ. But they get lots of good birds! DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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posted
I contracted Lyme disease while working at a historic farm in Morristown in the 1990's and my mother and husband were bitten in Jefferson Township.
Posts: 15 | From Maine | Registered: Jun 2008
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..lots of head pain.....![[Cool]](cool.gif)
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febrile illness), Yugoslavia, Hawaii.
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