[ 03-29-2009, 12:49 PM: Message edited by: Kreynolds ]
Posted by lakes592 (Member # 18905) on :
Awesome article! Your so young, it is so heartbreaking...Thanks for sharing your story with others. Please know that you are helping people. I will keep you and your family in my prayers. Tell your wife " good game. " and thanks for her help with this disease. Having a supportive partner makes all the difference.
Take Care, Ann
[ 03-29-2009, 11:05 AM: Message edited by: lakes592 ]
Posted by Kreynolds (Member # 15117) on :
Thanks for the reply!
My wife is great and wouldn't be able to do it without her.
Posted by KirstenS (Member # 15146) on :
Really wonderful article! Well said! You are bringing light to a lot of people that are living with this disease in NJ and not realizing it.
I hope that you and your family will catch a break. I saw some of your posts about your son and that really breaks my heart.
Keep focused, which is hard when you feel horrible,I know this. And ty for getting the word out about your story!
Take care Kirsten
Posted by Abxnomore (Member # 18936) on :
GO Reynolds! Great article that will benefit us all. Keep the faith, you and your wife are doing a great job.
Posted by madge (Member # 13704) on :
Great job...from one Jersey Lyme affected family.. it is always good to get these stories out...thanks to you wife i know just how hard it is when your husband is so sick...friends as well as family really don't understand... angain good job for you and all of us...Madge
Posted by soleil16 (Member # 16326) on :
Congrats on getting this in the newspaper. As a fellow 23 year old Lyme sufferer on IVs, your story encourages me to get involved at some level of activism.
Posted by njlymemom (Member # 15088) on :
Roy and Katie, job well done! You are in my thoughts and prayers....good luck on Tuesday.
Posted by Leelee (Member # 19112) on :
Moving story that I am sure will touch many people and give them cause to consider the devastation of Lyme and cos.
Posted by Dekrator48 (Member # 18239) on :
Wow, great article!!!
You are my son's age, so it really breaks my heart.
I will pray every day for you and your family.
God bless you for helping others when you are suffering so much yourself.
Posted by Kreynolds (Member # 15117) on :
Thanks guys.....
I feel that everyone should have a chance to tell their story and how bad this disease really is.
If we can get more articles done all around the country, maybe something will be done about this disease.
Thanks again for the support, this site has helped me in so many ways!! Posted by bettyg (Member # 6147) on :
NOTE; SEND FEEDBACK TO REPORTER; her email is there folks!! outstanding, accurate article and additional info included too! i showed at end. betty
copying entire post here and breaking up for us neuros; i had just finished this, and poof ALL GONE! UFFDA
Battling Lyme disease
Photos by Amy Paterson/New Jersey Herald
Roy Reynolds, of Lafayette, talks about his battle with Lyme disease and the impact it has had on his family's life. Reynolds has been fighting the disease for nearly two years.
Lafayette resident Roy Reynolds knows the exact moment when his life changed forever.
``June 26, 2007, 7:15 a.m.,'' said Reynolds, 23. ``I remember. I was at work and I almost passed out.'' His ears began ringing. His vision became foggy.
After several misdiagnoses including multiple sclerosis, cystic fibrosis and chronic fatigue, his doctor ran some blood work and discovered Reynolds had 7 out of 10 bands on the Western blot test.
He was diagnosed with Lyme disease, along with a host of other tick-borne illnesses.
Almost two years later, he's still suffering from a variety of related problems, including memory loss, fatigue, dizziness, migraines and agoraphobia.
He never saw the tick that bit him. He never had the bulls-eye rash that often accompanies the disease.
``I went from healthy as a horse to disabled overnight. It's pretty bad,'' said Reynolds, who had a son, Roy Jr., with his wife Katie mere months before he was diagnosed.
``It doesn't just affect the person -- it affects the family. I can't take (my son) to the playground. I can't take care of him by myself.''
According to the Center for Disease Control's most recent data, 3,134 New Jersey residents had been diagnosed with Lyme disease as of 2007, giving the state the third highest number of cases in the United States behind New York and Pennsylvania.
``We live in a very tick endemic area,'' said Katie Reynolds, who has made it a personal mission to learn as much as she can about her husband's health condition, including the infections that came along with the Lyme disease, such as bartonella, babesia and mycoplasma.
``It is grossly under-reported. It makes it very difficult for people like my husband and their doctors. It's really, really devastating.''
To increase awareness and education of the disease in the area, Katie and Roy Reynolds have started the Lyme Disease Support Group of Sussex County.
The group meets twice a month at the Lafayette Municipal Building, and has already brought out a diverse crowd of people interested in learning more about a disease that affects hundreds in the county, often without their knowledge or a formal diagnosis.
``I try to make sure I can offer a supportive aspect,'' said Katie Reynolds, 22, who does not have Lyme disease. ``I would love nothing more than to see the group grow.''
``This disease can be fatal. People need to know, if they think they have it and they have a negative blood test, pursue it,'' her husband said. ``I didn't know I had it until I passed out.''
When living in a heavily-wooded area, it can be challenging to protect yourself from tick bites and the bevy of diseases and infections that come with them.
Despite a relatively cold spring so far, Horticultural Program Associate Brian Oleksak of the Rutgers Cooperative Extension said his office has already had a few people complain about finding ticks.
To prevent tick bites, Oleksak recommends keeping your lawn mowed, especially in the perimeter areas close to wooded areas and shrubs.
Walking near stone fences and wood piles should also be avoided. ``Those tend to be hot spots for ticks,'' he said.
When working or playing outside, use insect repellents on your clothes or skin, according to the directions, and dress appropriately.
``Even though it might be uncomfortable, it might be a good idea to wear long sleeves and tuck your pants into your socks,'' Oleksak said.
When you come back inside, shake off your clothing and do a thorough inspection of yourself and family members, concentrating on any creases of skin where ticks might hide.
``One thing I do recommend, we always strongly encourage people if they've been bitten by a tick, just be in contact with their medical provider,'' he said. ``It's really important that it's detected early and they're getting good medical care.''
Roy Reynolds knows first-hand the problems that can come with late diagnosis.
He currently spends around $5,000 a month on medications, including some that have to be administered intravenously twice a day. He wears a bandage around his arm to cover the IV tube that runs directly to his heart.
``I've been on it all. Is it helping? I don't know. It's basically trial and error. (My doctor is) boggled.
Nothing's helping me,'' Reynolds said. ``I'm not only being tortured by Lyme disease, I'm being tortured by the infections it brought with it.''
Each day is a struggle for Reynolds. Due to his headaches and inability to concentrate, he can't work or spend extended periods of time alone with Roy Jr.
``A lot of people say, `I have good days and I have bad days.' For me, every day is a bad day. Every day, I wait to wake up and feel some sort of relief,'' he said, noting that if it weren't for his wife, he wouldn't survive.
``Without her, I couldn't do this. She is my other half. I always pray at night, `Am I going to be there for my family?' I don't even want to think about it.''
``Lyme disease does not target one specific person, age, gender, or race.
It's really unfortunate that my husband has essentially been robbed of a healthy life,'' Katie Reynolds said.
Created: 3/28/2009 | Updated: 3/28/2009
For more information about Lyme disease: **********************************************
Centers for Disease Control and Prevention www.cdc.gov
Created: 3/28/2009 | Updated: 3/28/2009
Support group to meet; Documentary to be shown Support group
The Lyme Disease Support Group of Sussex County meets on the second and fourth Monday of each month at the Lafayette Municipal Building on Morris Farm Road in Lafayette.
Meetings are 4 to 6 p.m. on the second Monday, and 8 to 9:30 p.m. on the fourth Monday.
*** Documentary to be shown The award-winning Lyme disease documentary ``Under Your Skin'' will be screened for free at 7 p.m. on Wednesday, at Vernon Township High School.
A Lyme Disease Association representative will also hold a question-and-answer session after the screening.
Created: 3/28/2009 | Updated: 3/28/2009
Protect yourself against Lyme disease ----------------------------------------------------
Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans by the bite of infected blacklegged ticks.
Symptoms include fever, headache, fatigue, and a skin rash called erythema migrans.
Some ways to prevent a tick bite:
* Wear a hat and light-colored clothing, including long-sleeved shirts and long pants tucked into boots or socks when outdoors.
* Use insect repellents that provide protection for the amount of time you will be outdoors. Follow directions for use and reapply as needed.
* Wash and dry your outdoor clothing in a hot dryer to kill any ticks present.
* Check your skin and clothes for ticks every day, including our hair, underarms and groin area.
* Immediately remove ticks from your body using fine-tipped tweezers, grasping the tick firmly and as close to your skin as possible.
Pull the tick's body away from your skin with a steady motion and clean the area with soap and water.
Removing infected ticks within 24 hours reduces your risk of being infected.
* If you develop symptoms of Lyme disease,
including an expanding circular rash, fever, joint and muscle pains, headache, chills, fatigue or swollen lymph nodes,
seek medical attention promptly.
-- Information courtesy of the Centers for Disease Control and Prevention. Created: 3/28/2009 | Updated: 3/28/2009
Posted by bettyg (Member # 6147) on :
roy and katie,
here is the feedback letter i just wrote on your outstanding, informative article!
Thank you Elisa for your accurate article on Roy Reynold's lyme and co-infection diseases article!
I have been corresponding with Roy since he sought out a lyme message board, and learned how to find a LLMD, lyme literate md in his area, as well as accurate info on starting his long lyme journey to remission!
It was nice seeing his photo since I know Roy online only.
So glad you showed how to dress outdoors and what to stay away from and cut down on exposure to ticks for your family.
Glad you showed the LDA website, Roy's support group info, and protecting yourself against ticks info.
Please note that the CDC statement of having a tick on you for 24 hours is inaccurate.
I know of folks having a tick embedded 1-2 hours; they got lyme and/or co-infections from it ... so that part is NOT correct.
I've talked to over 23,725 people since I joined www.lymenet.org almost 5 years this Aug! I've heard many of their stories online or when they sent me a private message !!
We have had a lyme disease bill in congress for 10 years and NO subcommittee has ever discussed it!
HR 1179 is this year's tick-borne disease bill for research and education for $100 million dollars for 5 years. The Senate bill has no number at this time since Pallone stopped last year's previous S 1708 bill by sitting on it! HOG WASH!
NJ's House Rep Frank Pallone, chair of subcommittee on health, having our bill has SAT on this since he listens to the IDSA, Infectious Disease Society of America, aka infectious drs. since the medical community contributed almost $500,000 to his lobbyist funds!!
Who would you listen to them, IDSA, or us sick lyme and/or co-infection patients who have spent all our money on our illnesses getting to a LLMD, treatments, meds, labs, and all other associated costs including travel, food, and lodging to go out of state to a LLMD when our own states do NOT have a llmd here!!
Many have lost: their jobs, health insurance, spouses and custody of their kids, homes, family/friends, bankruptcy, and the biggest loss .... SUICIDE since their pain is so great and they just can NOT go on any longer!!
Our active/inactive military were bitten and have lyme/co-infection diseases too but they can NOT get the needed help they need!
They are forced to go to IDSA infectious disease drs. vs. our ILADS, chronic lyme literate mds who treat LONGER THAN 3 WEEKS OF ANTIBIOTICS.
Infectious drs. treat from 1 pill to 3 wks. max and you are "cured"! HOG WASH big time!
Again, Elisa, thank you for your excellent article on Roy and Katie Reynolds.
Please follow-up with articles on some of the additional info I wrote you above!
God bless you for your journalism skills and compassion!
Betty G Iowa lyme activist
Posted by lakes592 (Member # 18905) on :
Hi, Great reminder betty! I wrote in: Hi, I just wanted to say thank you so much for your well written story on the Reynold's family. As a person who suffers from Chronic Lyme disease your article really touched me. I am hoping more people will write stories like this to help others learn about this devastating and life threatening disease.
Sincerely, Ann Ehlers
" Lyme disease is growing at four times the rate of AIDS and is quickly becoming our nation's most misdiagnosed and fastest-growing infectious disease. Educating the public and physicians regarding the disease and the progression of treatment is essential."
Posted by Kreynolds (Member # 15117) on :
bettyg:
Thanks for breaking the article up! The reporter contacted the CDC without my knowledge.
So the whole bit about 24 hours is definately wrong.
I'm just gonna let it be, I feel she did a fair job on the article and am very pleased by it.
Thanks again bettyg!
Posted by Ocean (Member # 3496) on :
Wonderful Roy!! Job well done =)
Ocean
Posted by Kreynolds (Member # 15117) on :
Thanks Ocean....
Doin' it for everyone!
Posted by Tincup (Member # 5829) on :
Three thumbs up!
Posted by Kreynolds (Member # 15117) on :
Tincup,
I was waiting for a response from you!
Thanks!
Posted by mtree (Member # 14305) on :
Great article Roy and Katie...well said
mtree
Posted by Kreynolds (Member # 15117) on :
Thanks mtree!
Posted by Snailhead (Member # 18091) on :
I don't know you, but I do "know" your story, as it is mine. Thanks for taking the time and putting yourself out there for all of us. I'll be praying for you and your family. Amy
Posted by Tincup (Member # 5829) on :
Actually I am ashamed I didn't make more comment on this sooner.
I am ... well I was till 5 minutes ago.. neck deep in IDSA dumpster diving projects... and HAD to get done with this one before I went nuts.
This latest project has been sent now to the chopping block so I am ready to rumble for a short time... AFTER I get some sleep!!!!
NOW...
Tincup says...
What a good looker I see in the picture!
Yeah.. I'm back! Saying all the wrong things.. but meaning them anyhow.
I will assume that is your dear son in the picture.. or you just left the frames original picture in there? Either way.. what a cutie he is!!!
Lucky wife to have two good lookers in one family!!!
Yes, shut up TC.... ok I will. HA! Anyhow...
The article made me "feel" what you and your family are dealing with.. more in depth than I had been able. It touched me... and therefore it will touch others too.
Your courage of getting out there will make the reality come alive for many. You all did great... actually really great .. especially for the first time dealing with the press.
Good going!!!
And I have to laugh. I wrote such a doinky note to the reporter... SO not like me.. but I wanted to say something ... but I should have kept my mouth shut till I had time to do better. But I did try.
Hope you forgive me for that one!
I am happy to see your willingness to educate others to save them from this nightmare.
From the bottom of my heart...
Thank you.
Posted by Kreynolds (Member # 15117) on :
Tincup:
Haha!!
Yes that is my son in the picture frame.
I truly appreciate and so does my wife how much you hand bettyg have helped us on this long journey.
If it wasn't for the activism, time and effort you and a majority of the people on this site have given, I would not be where I am today.
2 years ago I was so ignorant about this disease, I take some of them green pills and I'll be fine. WRONG!
I have a fire burning inside me to get this disease out there. Keep in mind that I have really bad anxiety/panic attacks.
My wife and I are a "tag team", but at the same time if we don't know something we aren't too pridefull to ask.
You guys have far more expierence than us, but I can tell you that over the past two years of studying this disease, I can run a marathon around a regular MD or an ID doc.
This article, hopefully, will show people what this disease is all about.
I don't mind putting my name out there because I know the truth.
We recently found out my son has a positive Band 41 and a positive Bartonella test.
He is going to see Dr. J in September, but in the meantime we have him schelduled to see another LLMD on Tuesday.
The fire inside me burns real hot! My family is now being physically attached to this disease and I won't let what happened to me happen to them.
My wife is still a negative, although she did test positive for a band 60.
I am almost certain she has Lyme given her symptoms.
So as you can see, its getting to my family,Physically.
I have always been a fighter and I will fight until the death for myself and my family.
So Tincup, I want to tell you from the bottom of our hearts that we really appreciate your help.
Thanks for writing to the reporter and to all those who did the same, thank you.
Maybe this will spark more articles, I can only hope!
Best Wishes to you and all that make my day easier with the amount of support and advice!
Thanks, Thanks, Thanks!!! Posted by just don (Member # 1129) on :
I second that,,, Tincup,,,YOUR the ONLY person I know that can give a THREE thumbs up!!
They broke the mold when TC was born,,,or hatched,,,however she was created!!!
Posted by Tincup (Member # 5829) on :
Your courage and determination is commendable.
And your kind words made me cry.
Now cut that out.
Thank you!
We WILL win this war!
Posted by Tincup (Member # 5829) on :
Et tu Just Don?
Oh my.
You are just too sweet.. all of you.
You make me so uncomfortable.. but you touch my heart too.
Thank you.
Together we will make it.
Posted by bettyg (Member # 6147) on :
roy, you are most welcome for the help i've give you and others.
roy, that was the best and most accurate story i've read in a long, long time! you don't have to pursue the 24 hr. thing ... i just wanted to note that.
later my friend feels great being a short-lived CELEBRITY, doesn't it? Posted by Cass A (Member # 11134) on :
Let her know you read it, and that you want more coverage on this important topic!!
Love,
Cass A
Posted by Tincup (Member # 5829) on :
Hey hey Cass...
How be you?
Posted by Kreynolds (Member # 15117) on :
I don't know about celebrity bettyg,LOL!
I wish they were under different circumstances, like winning the lottery or inventing something!
I'm glad the article was of good standing, that is exactly the approach I was trying to make when they were here.
Tincup,
I am sorry I made you cry, it was the truth! Even though I'm a male, I have no problems showing my emotions!
It must be the Lyme! HAHA!
Thanks again guys!
[ 03-30-2009, 01:21 PM: Message edited by: Kreynolds ]
Posted by zombie_mummy (Member # 17402) on :
Great article. My heart goes out to you and your family. It is so hard to be ill and have young children.
Posted by DaveNJ (Member # 17362) on :
Roy,
All i can say is Balls!!!....it takes a tough minded person to put themselves out there to help others when they are hurting so bad...your wife is very supportive as well and by the way i have band 60 also. CDC doesn't know what that is ...and therefore i do not have LYME..i have 4 other positive bands....
But seriously...Balls...(can i say that on here?) Keep your chin up...every dog has his day. Yours will come.
Dave
Posted by Kreynolds (Member # 15117) on :
Thanks Dave and zombie_mummy,
Dave, I strongly feel my wife has Lyme given her symptoms.
Also, We just found out my son has a Positive Band 41 and a Positive Bartonella test. He is seeing an LLMD tomorrow.
Thanks for the compliment! It's really been a roller coaster ride these two years. Now that my wife and son probably have it, it drives me nuts.
I would love for the paper to come to my house everyday and tell them the truth about this disease.
I would have loved nothing more than to see my former quack doctor when he read the article.
A lot of doctors probably crapped thier pants when they read it.
I just wanted people to know what this disease is all about.
Maybe I'll convince the paper to do more articles, they seem really interested in the disease, which I'm shocked about.
Normally people could care less, but they were great.
As a fellow NJ Lyme suffer to another maybe this will spark more for our state. I wish even bigger, like the country. We will have to wait and see....
Thanks again and Good Luck with treatment!
Posted by DaveNJ (Member # 17362) on :
Roy,
No problme..i am only an hour away...and pass through your part of NJ very ofetn. if you ever need a pick me up let me know.
Dave
Posted by Kreynolds (Member # 15117) on :
Will do....
Thanks Dave!
Posted by map1131 (Member # 2022) on :
Roy, no doubt this story will make a difference in someone's life. Probably more than one.
You and your wife did a great story on the "truth" about lyme & company.
Pam
Posted by Kreynolds (Member # 15117) on :
Thanks Pam, I sure hope people realize the harm this disease causes......
Posted by DakotasMom01 (Member # 14141) on :
Hi Roy, Did you see today's Herald?? { Friday April 3} I don't know if you get the paper everyday or not. { we know theres not alot in it..lol}
There is a letter to the editor " No Love for carrier of ticks".
The author from Sparta, talks abt his 15 yr battle with Lyme, sends his "special condolences to Roy Reynolds". He talks more abt lyme, co infs, and the spread of it.
He wants deer "gone". The last line is I have sympathy for Roy and no love for the deer.
I don't have an on line subs to the paper, otherwise I would have put the link here.
Hope this makes you smile. I didn't want you to miss it Posted by Kreynolds (Member # 15117) on :
DakotasMom01:
Yes I did, thanks to you! I am glad to see that my article touched some people.
Thank you very much for informing me, like many, I skim through the pages and missed it.
Thanks again for letting me know, it was a great article!
Posted by Kreynolds (Member # 15117) on :
Here is the link to the NJ Heralds "Letter to the Editor".
![[Smile]](smile.gif)
and thanks for her help with this disease. Having a supportive partner makes all the difference.![[group hug]](graemlins/grouphug.gif)
![[Big Grin]](biggrin.gif)
![[hi]](graemlins/hi.gif)
mtree
![[lol]](graemlins/lol.gif)
![[shake]](graemlins/shake.gif)
![[rant]](graemlins/rant.gif)
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