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» LymeNet Flash » Questions and Discussion » General Support » Trying to start a Lyme Disease Support Group in NJ

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Author Topic: Trying to start a Lyme Disease Support Group in NJ
kreynolds
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To All:


I am interested in starting a Lyme Disease Support Group in Sussex County New Jersey. If anyone would be interested in getting together once or twice a month to discuss anything and everything about Lyme & the obstacles and everyday challenges from this disease, please feel free to contact me.

[ 02-06-2009, 09:34 PM: Message edited by: Kreynolds ]

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

Posts: 1185 | From New York | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
njlymemom
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check your pm's

--------------------
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  |  IP: Logged | Report this post to a Moderator
radfaraf
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I would come if it was on the weekends, work times and travel make it impossible for me to go meeting during the week unless it starts really late.
Posts: 526 | From NJ | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
kreynolds
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Radfaraf

We are planning on meeting twice a month....one meeting will be from 4-5pm and the other would be 8-9pm.. we are still in the process of finding a location and picking the day of the week in which we would meet. Please feel free to contact me at through a private message...Katie Reynolds.

[ 02-06-2009, 09:33 PM: Message edited by: Kreynolds ]

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

Posts: 1185 | From New York | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
Tracy9
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Have you joined www.lymefriends.com? There is a group there just for people from New Jersey, I think it has about a dozen members.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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kreynolds
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Thanks for the link... I will definatly check it out! We are in the process of starting a Lyme Support Group in our area and have been getting responses and phone calls so it seems like there will be a great turnout out here... Can't wait!!!! Thanks again!

[ 02-03-2009, 07:19 PM: Message edited by: Kreynolds ]

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

Posts: 1185 | From New York | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
kreynolds
Frequent Contributor (1K+ posts)
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To All:

Thank you for responding if anyone know of anyone else that would attend the meeting please let us know... I will get back to you within the next few days regarding the place and the exact day of the week the meetings will be held on.... we are hoping to have as many people possible at these meetings so please pass the word on!


Thanks Again!

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

Posts: 1185 | From New York | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
radfaraf
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I would probably be able to make 8-9PM (Monday - Friday, weekends anytime is ok) unless the group ends up being farther away than I think it will be.

One way to run the group might be with meetup.com, unfortunately they charge the group leader for this. It would get the group a bit of exposure for other potential members to find it.

Also as mention above lymefriends.com would be a good place to post, there are several people in a NJ group on there.

Posts: 526 | From NJ | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
kreynolds
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Radfaraf:

I am hoping to get 2 mondays a month... I was planning on doing a 4-5:30pm and then a 8-9:30pm. The 8-9:30pm would work for you?

I am tryinging to get a location in the sparta area.

I am going to try thoses sites you & Tracy9 mentioned. Thanks again for the link!

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

Posts: 1185 | From New York | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
kreynolds
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To all:

It looks like our meetings will possibly be held at the Lafayette Township Munincipal Building right off Route 15.... Thats not final though... we have called several places in Sparta and they are not giving us an answer. We want to get this support group rolling.... As soon as we get a location we will be posting our support group in the NJ Herald soon and posting flyers all over. The group is called The Lyme Disease Support Group of Sussex County... Thanks again and if anyone has any questions feel free to call or ask. Roy & Katie Reynolds

[ 02-09-2009, 10:12 PM: Message edited by: Kreynolds ]

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

Posts: 1185 | From New York | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
bettyg
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katie,

may i suggest you delete your home email and telephone no?

we have healthy TROLL troublemakers who come here daily collecting this info and then HARASS those who post their home info!!

we have PRIVATE MESSAGE, pm, that works great and both yours/their home email addresses are kept SECRETY!!

you can share your home/phone info in a PM w/folks interested.


just trying to keep you/others SAFE from those preying on us sick folks.


to edit, click on PENCIL, 3rd box to right, and there were 2 separate posts giving out your home info. i suggest deleting that; they can PM you for that.


BEST WISHES on getting your support group up and running! it will be a success!! [Smile] [group hug] [kiss]

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kreynolds
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Betty G,


Thanks for the advice... wasn't really thinking but you made a very good point... Anybody interested should contact me through a PM and then we can talk further..All private info has been deleted. Thanks again!

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

Posts: 1185 | From New York | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
bettyg
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katie, thanks for understanding, and good luck on a good turn out!! [Smile]
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radfaraf
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8-9:30pm would work for me. Looks to be roughly 1 hour to Lafayette, NJ for me in Bergen County.
Posts: 526 | From NJ | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
bettyg
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breaking up katie's post and adding this...

have you checked with YOUR LOCAL LIBRARY? we are allowed to meet there FREE?

or how about a hospital conference room if you have a hospital there? betty ... again FREE!


quote:
Originally posted by Kreynolds:


To all:

It looks like our meetings will possibly be held at:

Lafayette Township Munincipal Building
right off Route 15...
.
Thats not final though...

we have called several places in Sparta and they are not giving us an answer.

We want to get this support group rolling.... As soon as we get a location we will be posting our support group in the NJ Herald soon and posting flyers all over.

The group is called Lyme Disease Support Group of Sussex County...


Thanks again and if anyone has any questions feel free to call or ask.

Roy & Katie Reynolds


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kreynolds
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radfaraf

When I get the location finalized I will let you

know with an address and if you need directions,

I will be happy to help!

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

Posts: 1185 | From New York | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
kreynolds
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Bettyg:

Thanks again for the information...Im going to try them as well.

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

Posts: 1185 | From New York | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
bettyg
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katie, you are most welcome! teamwork of sharing ideas that i have used in my many different support groups over the years!
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kreynolds
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Bettyg:

Did you have support groups?

If you did, would you be willing share some ideas with me?

Anything advice and ideas would really help!

Thanks again!

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

Posts: 1185 | From New York | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
kreynolds
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Anymore interested?????

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

Posts: 1185 | From New York | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
bettyg
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katie,

have you checked out the EXISTING support groups for NJ? MANY THERE ...


http://www.lymenet.org/SupportGroups/UnitedStates/NewJersey/

read down thru and click on them to see who support group leaders are, etc.

perhaps THEY would share info on what they have and WORKS for them! ////////////////////////


i went to 1 here locally 1 yr.; IT WAS GOOD AT THAT TIME; went to hell after my lyme diagnosis.

no more comments on me on that one! don't want to go back to those times ok!

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kreynolds
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Bettyg:

Yes, I have checked out the existing support groups.... the one in my county isn't active anymore.


I have contacted a group about 40 minute away and they weren't too friendly about giving out advice or tips.


We pretty much have everything set up except the location. The most important thing.


We have called about 30 places ranging from hospital, churches, libraries etc....


We have a couple that may accept our request we are just waiting to hear back from them.


Thanks again for the help it is very much appreciated! [Smile]

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

Posts: 1185 | From New York | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
DakotasMom01
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Has this group found a home yet?

Many of the NJ groups on the lymenet link are closed, I posted them on another thread, abt a new group in Highland Lakes.

--------------------
Take Care,
DakotasMom01

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kreynolds
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No not yet we will be finding out tomorrow!!!!

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

Posts: 1185 | From New York | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
kreynolds
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To All:

Tomorrow I will update with more information about the location... I should find out tomorrow of Wednesday. Thanks for your patience

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

Posts: 1185 | From New York | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
   

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