Will I ever feel normal again? I'm scared of what is to follow. Is this ever going to be over?

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labrat72
New Member


Date Joined Feb 2010
Total Posts : 12
   Posted 2/8/2010 10:02 AM (GMT -7)   
 The more I research I do, the more depressed I become. If I really have Lyme Disease, and I truely believe I do, I read all about how doctors don't know how to treat it and that the whole world seems to turn their backs to those with it. What is to become of me? Will I never be an active, happy person? Will I slowly fade away in my pain and fatigue? My husband is already turning his back on me. I have a type A personality - which I believe is what has gotten me this far- but I've been running on EMPTY and continuing to push myself for sooo long that I am just completely spent.
Those of you that have been treated successfully- are you normal now? No pain, no more fatigue, no more depression. Is the numbness in my hands and toes permanment? Will the hair loss stop? Will I be able to be a mom and a wife?
Please tell me there is a light at the end of the tunnel.....
 
sad Cass

Carly18
Regular Member


Date Joined Apr 2009
Total Posts : 125
   Posted 2/8/2010 11:09 AM (GMT -7)   
What sort of tests have you had that make you think you have lymes?

achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 2/8/2010 11:51 AM (GMT -7)   
Hi Cass,

Yes, there is a light at the end of the tunnel -- I'm almost there!

As I wrote in one of your previous posts, I was diagnosed with lyme and ehrlichia after 24 years of pushing through by sheer force of character until I literally lost it. I have now been on a variety of antibiotics for 18 months.

I feel well. This is a huge statement. I have not been able to say this for years... years. I do not feel any pain, anywhere. I am warm, finally. And my mind is blissfully quiet. I can see something that needs doing and do it. My spot on the sofa looks abandoned instead being the center of my universe. I'm laughing, singing and dancing.

It was a lot of work to get to where I am now. I felt more horrible than I thought a person could and still be alive. I learned what stuff I was really made of and what incredible people surround me.

It is totally understandable that you are frightened about your diagnosis. But this is treatable. You must find a good lyme literate doctor you feel confident in and start that treatment. Get your loved ones on board, they need to know what this means and how they can help.

Your type A personality will help you with this. You're going to do something about getting better. It will be frustrating that you can't do all the other things you want to do but put them aside for a little while to get on the path of recovery. Make it your project and focus and you will get better faster.

Keep talking to us about how you are doing. We're cheering for you!

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 2/8/2010 1:43 PM (GMT -7)   
Achievinggrace, what a wonderful post for us to read that are still feeling so lousy. Hope is all we've got but it's nice to know we are not trying to achieve the impossible. thanks so much.

labrat72
New Member


Date Joined Feb 2010
Total Posts : 12
   Posted 2/8/2010 2:40 PM (GMT -7)   
Achievinggrace,
Thank you! I just woke from a nap and wasn't even going to come on- the web has added more to my anxiety than helped....but I am so glad I did. Thank you for taking the time to write me back. I just needed to hear that this is beatable.
God Bless and stay well,
Cass

Caely18,
Sorry, I forgot to mention I have these results back from the doctor-
ANA + (homogenous)
EBV + (everything + IGM and IGG)
LYME + (ELISA)

pepphell
Regular Member


Date Joined Jan 2010
Total Posts : 134
   Posted 2/8/2010 4:24 PM (GMT -7)   
achieving grace - amazing post. you inspire fight, wholesomeness and hope.

I am not feeling better today :(

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 2/9/2010 1:18 AM (GMT -7)   
labrat,

Since you have a positive Elisa, you need to find a LLMD to start treatment for Lyme Disease. It looks like you also have some auto immune problems too so you should definitely see a Rheumatologist. The important thing you need to know is that taking high doses of steroids is not good at all if you have Lyme. It suppresses the immune system and causes the Lyme to come out and multiply. Your Rheumatologist needs to know this.

If I were you, I'd find an LLMD that knows how to treat auto immune diseases too.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 2/9/2010 12:46 PM (GMT -7)   
I am now back with a full head of hair...lol. And I am a person again. Came out of my brain fog and recovered.
But I am not stoping with treating my body better.
Are you taking huge amounts of oral abx? This is the problem. Can you get ozone therapy in your state?
Would you be willing to stop popping pills and take tons of supp. and vit.'s instead?
Our family all got lyme in 2004. It has been a long battle. But all is well now with my children. Feb 8 TH of 2009 is when I left Envita. And I am celebrating a year of perfect health.


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 2/9/2010 12:48 PM (GMT -7)   
I had the tingling too and bels palsy.
All of that stuff goes away and all of the wierd stuff that comes and goes daily goes away. But the only way to get better is to feed the immune system, not drug it.
Our family all got lyme in 2004. It has been a long battle. But all is well now with my children. Feb 8 TH of 2009 is when I left Envita. And I am celebrating a year of perfect health.


therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3533
   Posted 2/9/2010 2:17 PM (GMT -7)   
Acheivingrace, you made me cry tears of HOPE, thank you.
 
I do believe some of us have to take drugs.
 
Marthavineyard, I was without drugs, $30,000 in supplements, doctors and NP and it didn't help. The abx right now are giving me some help. Yes I would love to do it naturally, I've tried for five years! some days better than other but still ulcertive colitis. My gut and colon have all the pain. Rarely is it fingers, toes, knees or anything else. I do believe in feeding the immune system, that's a great suggestion! I've been working on it, so it can fight and win the war not just the battle.
Very mild left sided (could have fooled me with the "mild")  UC.Just found out 4 years into it I might have Lyme's Disease, going to a LLMD in December. Confirmed Lymes on 12/8/09 before my new antibiotic protocal from my LLMD, I  Started and stopped LDN ON 1/25/09 to mid May no improvements. Tried Asacol, Pentesa, Colozol, Sulfasulsadine and Lialda, they made me worse. A range of antibiotics, not much better. Supplements: Threelac, multi, iron, very low yeast/sugar/wheat  No UC meds at this time. Started Doxy and Cedfinir too rough on stomach, started Bicillin injection 1/12/10, once a week of injections. Feel much more energy on shot.


labrat72
New Member


Date Joined Feb 2010
Total Posts : 12
   Posted 2/10/2010 12:00 PM (GMT -7)   
Thank you everybody!
This is day 2 of waiting for stupid g.p. doctor to call me back. How do I find a LLMD in Oklahoma?
Cass

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 2/10/2010 12:48 PM (GMT -7)   
labrat72 said...
Thank you everybody!
This is day 2 of waiting for stupid g.p. doctor to call me back. How do I find a LLMD in Oklahoma?

Cass


There are no LLMD's in OK (I live here). However, there is one doctor who treats lyme patients in OKC who uses the Marshall Protocol. I don't think this is a good protocol (my opinion) but that's the only doctor in OK that I'm aware of that treats lyme disease. PM me and tell me where you live. If you're willing to go to Texas there's an LLMD there that my wife and I used to go to. I didn't get well from his protocol because I can't handle abx, but I am getting better from going to the Hansa Center in KS. If you want more information about that then just look for my posts on the Hansa Center and there's plenty of information there.

Gary

labrat72
New Member


Date Joined Feb 2010
Total Posts : 12
   Posted 2/10/2010 5:09 PM (GMT -7)   
Gary,

I guess since I'm going to be posting here more often I should start to learn how to use the computer more effectively. I am about the last 37 year old alive that just doesn't get on the computer except at work. So, I need to learn first --What is "PM"ing someone? Also, what is the Marshall Protocol? and lastly "Hansa Center"?

OKay- I fiiiiiiinally got in touch with my doctor and he looked and my labs and said he thinks I have mono (on top of my fibromyalgia) and NOT Lyme. He said that all the infectious disease doctors he talks to say that there is "no Lyme in Oklahoma" ....
....so why the heck did he even order the stupid test if A. he doesn't believe Lyme exsists in Ok and
B. if he wasn''t going to believe the results once he got them.
He just said "Oh, I'm sure that is a false positive".
I may have just hung my head like I have done in the past and said okay, but after all the research I have done on Lyme I am absolutely certain the Bb is what I have. I honestly believe my doctor wants to keep me sick so I can keep coming to him. I think he was stunned that all my labs come back positive. He even had the nerve to say I don't have an autoimmune disease. He did that last time it came up positive and I believed him.
But thus time I really educated myself. I have done tons of research and I actually stood up to him and said that I thought he was wrong.


A little side note - I work in a clinical laboratory. I am a Medical Technologist. I make a living doing all types of laboratory diagnostic tests. That said.... I always try to stay away from the internet- self diagnosing. I see way too many people get really upset...thinking the worst of every symptom before they even get any results back. So, I always swore I would leave the diagnosing up to the MD.
But, I think doctors have really become too dependant on people self diagnosing. Someone sees a commerecial for ED and says "I have that" They go to the doc and say the want a presciption for ------- and the doctor fills it. They don't try to figure out what is wrong anymore...why should they? There is a pill for everything now. Who cares what you have or what is causing it...just take this pill and come back in 2 months. THE END.

Okay, off the soap box....
I told the doctor I thought he was wrong and he sat at the other end the phone sort of stunned and ask why I thought I had Lyme. I went into tons of detail about the organism..probably over his head to be honest, and he said-quite reluctantley- "well, if it would make you feel better we can order a western blot". I said it would and I would like to start treatment ASAP.

He is prescribing Doxycycline 100mg 2 times a day for 6 weeks. What do you all think? Is that okay for chronic Lyme?
I also already take
Vit B Complex
Magnesium
Vit D
Mutivitamin (Flinestone chewable)
Prestique - for my serotinin deficiency

Any other recommendations?

Thanks,
Cass

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 2/10/2010 5:57 PM (GMT -7)   
Cass,
Learning about Lyme is like learning a new language. Be patient it takes a while to learn all the lingo. PMing someone simply means to send them a private message. This feature is built in on some Lyme disease web site locations such as lymenet. Here you simply click on the persons name such as mine "cheezhead" and if they made their email address available, you can send them a private message.

The Marshall Protocol is an alternative treatment. Google this if you'd like to learn about it.

If you asked doctors in half the stated in the US, they would say Lyme does not exist here. You must remain you own advocate!! If you have a Western Blot test, you should look into having it done at IgeneX labs. For info. check out their web site. igenex.com

May I suggest you look for Cure Unknown by Pam Weintraub, and The bakers dozen and the lunatic fringe by P.J. Langhoff. These are very good books about Lyme disease.

Also have you visited underourskin.com and viewed the trailers of this film yet?

Best wishes

P.S. Most doctors do not respect this disease, or know little about it. Only a LLMD who follows the ILADS treatment guidelines will treat you for chronic Lyme disease. Please read the guidlines at ilads.org

Post Edited (Cheezhead) : 2/10/2010 6:03:43 PM (GMT-7)


GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 2/10/2010 7:18 PM (GMT -7)   
Hey Cass,

Don't feel bad about not knowing computer terminology, I'm 56 years old and still learning it. Thank God for two computer literate sons who I depend on to help me understand computer stuff and help me out when I make a mess of my computer or have problems with it.

Anyway, a PM means private mail. I just noticed for the first time today (after being here since 2008), it appears the Healing Well forum doesn't have a pm option. However, you will notice on the left side, underneath you name, a bunch of icons. One of them is an email icon (envelope). Your icon is not colored which means you apparently didn't list your email address on your profile. That means there isn't anyway for a member here to contact you privately unless you add your address to your profile. Some people don't like to do that because they don't want everyone to know their email address. Some have other reasons for not listing it, but the point is, if I wanted to give you the name and address of an LLMD, there's no way for me to do that unless you had your email listed on your profile. However, you can click my email icon and I will gladly respond to any questions you have.

Most lyme forums forbid us from posting LLMD names and addresses. I'm assuming that's the rules here too but I may be wrong about that. Maybe CajunGrl (moderator here) or someone else can tell us if that's the rules here. Also, maybe someone can explain how to go about getting names of LLMD's without posting them on a thread. In the mean time, if you'd like some names of some LLMD's in Texas, MO, LA or KS (since they're closest to us) I will be glad to provide you with their names and contact information. Just click my email icon and send me an email and I'll send the information to you.

Of course, the infectious disease doctor here in OKC doesn't believe lyme exists here. That's pretty much they way it is in most states, and OK is no exception. I have a friend who went to the infectious disease doctor here and he refuses to tell him he has lyme disease in spite of all the evidence to the contrary. My wife went to the top infectious disease doctor here in OKC back when she first got bit by a tick. She had the typical bulls eye rash and the infectious disease doctor looked at her rash and said, "that's just an age rash from getting older". How dumb is that?

Back then we didn't know that a bulls eye rash was evidence that you had lyme disease, and according the the Center for Disease Control (CDC), if a person has a bulls eye rash it has to be reported to CDC. This idiotic "infectious disease doctor" denied it was lyme disease and tried to convince us it was spot caused from "old age". My wife was 50 years old when he made that comment. My wife not only saw the tick on her, she pulled it off, but still, the doctor said it wasn't lyme disease. What my wife experienced is very common and typical of what lyme patients deal with on a daily basis.

It's sad, because so many people who don't know any better (like us at the time) believe what these "experts" tell us, in the mean time we go on suffering with this disease and continue to get worse. By the time we finally get a proper diagnosis, the disease has advanced to the point that it becomes harder to treat. Thankfully, my wife was finally diagnosed about two years after her tick bite and was able to be successfully treated after 13 months on antibiotics (abx). She did relapse a couple of years later and had to go back on abx for 8 months but she got well again. She's not what I would call "healed" but she's definitely in remission. By the way, she's a member here too under the name "daisyrlb".

Arguing with your doctor is pretty much a waste of time. Unless you see a LLMD you will not beat this disease, and the longer you allow yourself to be treated by a doctor who's not an LLMD, the more harm you're doing to yourself by putting off getting the appropriate treatment for yourself. I will say this, I am shocked that your doctor offered to do a Western Blot test. Most doctors won't even do that. Is he using Igenex for this test? If not, then the test will most likely not be reliable. Igenex is "the" laboratory for lyme testing, and anything less than that is not considered reliable--in my opinion. Although, there are a couple of other labs that are pretty good too, but this lab is the "cream of the crop"-- the go to place for lyme testing.

However, be warned, since diagnosing lyme disease is primarily a clinical diagnosis, even Igenex test results will often come back negative. The diagnosis for lyme is based more on your symptoms than it is the actual results of your test. If you haven't already read the "New to Lyme" page (on top of the forum list) I strongly encourage you to read it. There's a lot of excellent information listed there, including a "master list" of symptoms that are typical to those with lyme disease. Check it out if you haven't already. Most people who have lyme disease get their diagnosis because they did their research and finally realized that they would never get a proper diagnosis, or get better, until the found a LLMD and got the proper treatment. You have to research this on your own (as you've already learned) and become your own best advocate for fighting this horrible disease.

200 mg of Doxy for six weeks is nowhere near enough for treating lyme disease. This is what all doctors typically prescribe because this is what they're told to do from the infectious disease doctors. You should be taking three times that amount, and typically you will take two or three other abx along with it depending on the LLMD's protocol. Not all LLMDs use the same protocol. The best ones typically follow what's known as Dr Burrascano's Guidelines. There's good information here for you to read and to educate yourself with: http://www.turnthecorner.org/documents/Lyme_Disease_Burrascano_Guidelines_2008.pdf

Some doctors follow Dr B's guidelines and some don't, but the majority of them do. If you are going to be treated with abx, I would suggest you get a LLMD who follows his guidelines. Having said that, there are also a lot of alternative treatments available as well. There's herbal treatments, ozone therapy, homeopathic treatment (what I had) and a few others as well. You'll find a list of alternative treatments at the link I provided you with above, "New to Lyme". Not everyone can handle abx or desire to take them for various reasons. I tried to get well on abx for five years and I just got sicker and sicker. Some people just can't handle abx (I couldn't), some simply refuse to go that route because they believe the risks of taking abx outweigh the benefits. Everyone has to find the path that they feel most comfortable with when it comes to treating this disease.

That's why it's important to do your own research, ask questions, more questions, and even more questions until you get the answers you need to help you decide which protocol is best for you. But whatever you do, don't let some idiotic doctor here in OK (or anywhere else for that matter) tell you that you don't have lyme disease. Get the Western Blot test, look at the list of symptoms, and see a qualified LLMD to get a proper diagnosis. The longer you put off getting the appropriate treatment the harder it is to treat this disease. I didn't know I had lyme disease until over ten years of suffering with it. I finally got diagnosed five years ago. Because of not being diagnosed earlier I now have chronic, late stage lyme disease. I've suffered with major arthritis pain, neurological problems, abdominal pain, and the list goes on and on. Traditional abx treatments failed me, but thankfully, I was able to finally get relief from my symptoms when I went to the Hansa Center in KS. Here's a link to the center if you're interested in knowing more about it http://www.hansacenter.com/ .

Like I said, if you prefer to see a LLMD who treats with abx and follows Dr. B's guidelines, let me know and I'll be glad to send you a list of doctors. Just click my email icon and you'll be able to send me an email and I'll respond back to you with the information.

Feel free to ask any more questions. We're all here to help each other out and to support you in anyway we can.

Gary

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 2/10/2010 7:50 PM (GMT -7)   
GWB said...
Hey Cass,

Don't feel bad about not knowing computer terminology, I'm 56 years old and still learning it. Thank God for two computer literate sons who I depend on to help me understand computer stuff and help me out when I make a mess of my computer or have problems with it.

Anyway, a PM means private mail. I just noticed for the first time today (after being here since 2008), it appears the Healing Well forum doesn't have a pm option. However, you will notice on the left side, underneath you name, a bunch of icons. One of them is an email icon (envelope). Your icon is not colored which means you apparently didn't list your email address on your profile. That means there isn't anyway for a member here to contact you privately unless you add your address to your profile. Some people don't like to do that because they don't want everyone to know their email address. Some have other reasons for not listing it, but the point is, if I wanted to give you the name and address of an LLMD, there's no way for me to do that unless you had your email listed on your profile. However, you can click my email icon and I will gladly respond to any questions you have.

Most lyme forums forbid us from posting LLMD names and addresses. I'm assuming that's the rules here too but I may be wrong about that. Maybe CajunGrl (moderator here) or someone else can tell us if that's the rules here. Also, maybe someone can explain how to go about getting names of LLMD's without posting them on a thread. In the mean time, if you'd like some names of some LLMD's in Texas, MO, LA or KS (since they're closest to us) I will be glad to provide you with their names and contact information. Just click my email icon and send me an email and I'll send the information to you.

Of course, the infectious disease doctor here in OKC doesn't believe lyme exists here. That's pretty much they way it is in most states, and OK is no exception. I have a friend who went to the infectious disease doctor here and he refuses to tell him he has lyme disease in spite of all the evidence to the contrary. My wife went to the top infectious disease doctor here in OKC back when she first got bit by a tick. She had the typical bulls eye rash and the infectious disease doctor looked at her rash and said, "that's just an age rash from getting older". How dumb is that?

Back then we didn't know that a bulls eye rash was evidence that you had lyme disease, and according the the Center for Disease Control (CDC), if a person has a bulls eye rash it has to be reported to CDC. This idiotic "infectious disease doctor" denied it was lyme disease and tried to convince us it was spot caused from "old age". My wife was 50 years old when he made that comment. My wife not only saw the tick on her, she pulled it off, but still, the doctor said it wasn't lyme disease. What my wife experienced is very common and typical of what lyme patients deal with on a daily basis.

It's sad, because so many people who don't know any better (like us at the time) believe what these "experts" tell us, in the mean time we go on suffering with this disease and continue to get worse. By the time we finally get a proper diagnosis, the disease has advanced to the point that it becomes harder to treat. Thankfully, my wife was finally diagnosed about two years after her tick bite and was able to be successfully treated after 13 months on antibiotics (abx). She did relapse a couple of years later and had to go back on abx for 8 months but she got well again. She's not what I would call "healed" but she's definitely in remission. By the way, she's a member here too under the name "daisyrlb".

Arguing with your doctor is pretty much a waste of time. Unless you see a LLMD you will not beat this disease, and the longer you allow yourself to be treated by a doctor who's not an LLMD, the more harm you're doing to yourself by putting off getting the appropriate treatment for yourself. I will say this, I am shocked that your doctor offered to do a Western Blot test. Most doctors won't even do that. Is he using Igenex for this test? If not, then the test will most likely not be reliable. Igenex is "the" laboratory for lyme testing, and anything less than that is not considered reliable--in my opinion. Although, there are a couple of other labs that are pretty good too, but this lab is the "cream of the crop"-- the go to place for lyme testing.

However, be warned, since diagnosing lyme disease is primarily a clinical diagnosis, even Igenex test results will often come back negative. The diagnosis for lyme is based more on your symptoms than it is the actual results of your test. If you haven't already read the "New to Lyme" page (on top of the forum list) I strongly encourage you to read it. There's a lot of excellent information listed there, including a "master list" of symptoms that are typical to those with lyme disease. Check it out if you haven't already. Most people who have lyme disease get their diagnosis because they did their research and finally realized that they would never get a proper diagnosis, or get better, until the found a LLMD and got the proper treatment. You have to research this on your own (as you've already learned) and become your own best advocate for fighting this horrible disease.

200 mg of Doxy for six weeks is nowhere near enough for treating lyme disease. This is what all doctors typically prescribe because this is what they're told to do from the infectious disease doctors. You should be taking three times that amount, and typically you will take two or three other abx along with it depending on the LLMD's protocol. Not all LLMDs use the same protocol. The best ones typically follow what's known as Dr Burrascano's Guidelines. There's good information here for you to read and to educate yourself with: http://www.turnthecorner.org/documents/Lyme_Disease_Burrascano_Guidelines_2008.pdf

Some doctors follow Dr B's guidelines and some don't, but the majority of them do. If you are going to be treated with abx, I would suggest you get a LLMD who follows his guidelines. Having said that, there are also a lot of alternative treatments available as well. There's herbal treatments, ozone therapy, homeopathic treatment (what I had) and a few others as well. You'll find a list of alternative treatments at the link I provided you with above, "New to Lyme". Not everyone can handle abx or desire to take them for various reasons. I tried to get well on abx for five years and I just got sicker and sicker. Some people just can't handle abx (I couldn't), some simply refuse to go that route because they believe the risks of taking abx outweigh the benefits. Everyone has to find the path that they feel most comfortable with when it comes to treating this disease.

That's why it's important to do your own research, ask questions, more questions, and even more questions until you get the answers you need to help you decide which protocol is best for you. But whatever you do, don't let some idiotic doctor here in OK (or anywhere else for that matter) tell you that you don't have lyme disease. Get the Western Blot test, look at the list of symptoms, and see a qualified LLMD to get a proper diagnosis. The longer you put off getting the appropriate treatment the harder it is to treat this disease. I didn't know I had lyme disease until over ten years of suffering with it. I finally got diagnosed five years ago. Because of not being diagnosed earlier I now have chronic, late stage lyme disease. I've suffered with major arthritis pain, neurological problems, abdominal pain, and the list goes on and on. Traditional abx treatments failed me, but thankfully, I was able to finally get relief from my symptoms when I went to the Hansa Center in KS. Here's a link to the center if you're interested in knowing more about it http://www.hansacenter.com/ .

Like I said, if you prefer to see a LLMD who treats with abx and follows Dr. B's guidelines, let me know and I'll be glad to send you a list of doctors. Just click my email icon and you'll be able to send me an email and I'll respond back to you with the information.

Feel free to ask any more questions. We're all here to help each other out and to support you in anyway we can.

Gary


Very good post Gary!! Lots of great information
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