LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » General Support » pleasantly surprised by the response to my letter to CT's gov. re Dr. J

 - UBBFriend: Email this page to someone!    
Author Topic: pleasantly surprised by the response to my letter to CT's gov. re Dr. J
Julie-MA
LymeNet Contributor
Member # 5110

Icon 1 posted      Profile for Julie-MA     Send New Private Message       Edit/Delete Post   Reply With Quote 
In response to a recent email I received asking all of us to write to CT's Gov. and Atty. Gen. about Dr. J., I sent an email to the Gov. and copied in the Atty. Gen. I quickly received an email from the Gov's office, indicating that per the Gov.'s request, my email had been forward to the Dept. Of Public Health and I should expect to hear from them soon.

Today I received a letter from the Dept of Public Health, indicating that my comments will be reviewed by the Asst. Atty Gen who is advising the Board (the one examining Dr. J) in order to determine if they should be made part of the public record!

I have to say I am pretty surprised by the response. I guess I thought that my email would get an automated response and that would be that. It seems as if these can help, so

PLEASE WRITE CT's GOV!!!

Julie

Posts: 307 | From Byfield, MA | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
That's a great idea! Would you be willing to post your letter here?

Good job!!! [Cool]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95978 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
hatsnscarfs
LymeNet Contributor
Member # 6562

Icon 1 posted      Profile for hatsnscarfs     Send New Private Message       Edit/Delete Post   Reply With Quote 
Wow. Please post more details. Who do we send to?
It would be great to see your letter.
hats

Posts: 956 | From MA | Registered: Nov 2004  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
this was harder to find; took 30 min. worth!

Gov Mrs. M. Jodi Rell
Office of the Governor
State Capitol
210 Capitol Avenue
Hartford, Connecticut
06106

Telephone:
Greater Hartford:
(860) 566-4840

Toll-Free:
(800) 406-1527

TDD:
(860) 524-7397



Contact Us


Mailing Address

Governor M. Jodi Rell FEMALE!
Executive Office of the Governor
State Capitol
210 Capitol Avenue
Hartford, Connecticut 06106

Telephone

Greater Hartford Area: 860-566-4840
Toll Free: 800-406-1527
TDD: 860-524-7397

E-Mail

[email protected]

Electronic mail submitted through this web-site may be considered "public records or files" as those terms are defined in the Connecticut Freedom of Information Act, (the "Act "). [Big Grin] [Wink]


i forwarded this link to folks on my lyme list group! great news here; we must write conn. gov. too! [Big Grin]

IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 10 posted            Edit/Delete Post   Reply With Quote 
up; we want to read your letter you received so bad; then we'll email gov. too!!!! write SOON OK! [Big Grin] [Wink]
IP: Logged | Report this post to a Moderator
Julie-MA
LymeNet Contributor
Member # 5110

Icon 1 posted      Profile for Julie-MA     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sorry for my delayed response! I am so glad that people are interested. Thanks for finding her info, Betty.

Here is my letter. It was one I had done previously for other Lyme activism stuff, but I tweaked it for her and the specific needs of his case. I will break up the paragraphs so they are easier to read, but you will not see where I had my original paragraphs.

I hope this all helps him!

With thanks and appreciation,
Julie


Dear Governor Rell:



I am writing to ask you to please do whatever is possible to help Dr. Charles Ray Jones's in his defense against the Connecticut Medical Board.



I grew up in Simsbury (where my parents still live) and now live in Massachusetts. My 6 year old son and I have both been treated for chronic/disseminated Lyme Disease and were it not for Dr. Jones, my son would be a very sick boy now.



In the summer of 2001, when he was 1 1/2, we noticed that he periodically had trouble walking: he would buckle under and cry for several minutes, unable to walk again. Because of his age, it was hard for us to determine what came first: the inability to walk or the fall and the ensuing pain.

We finally determined something was not right and we took him to our pediatrician in Newburyport, MA. This remarkable woman is very knowledgeable and progressive about Lyme. As a result, when she saw even subtle positive signs on his Western Blot test, she determined with the clinical diagnosis (and with ruling out many other things-we had X-rays, other tests, etc.) that he had Lyme and she treated him with antibiotics for two months. He improved tremendously.



Two years later, in the summer of 2003, the same thing happened again. We did not waste any time getting back to her. A new Western Blot showed continuing and even stronger blood test results, and in addition to starting him on antibiotics, she recommended that we see pediatric infectious disease and rheumatology specialists at Tufts New England Medical Center-Floating Hospital.

They ran the ELISA (which later came back negative; it is only 67% accurate) and examined him, determining that this 3 1/2 year old who had trouble walking and had positive Lyme-specific bands from our pediatrician's Western Blot test was suffering from growing pains. I was incensed.



Our pediatrician recommended we see Dr. Jones. Dr. Jones examined him thoroughly; I have never had another doctor be as through and scrutinizing as he was. In addition to a lengthy physical exam, he drew blood for several tests. His Western Blot through IgeneX showed Lyme specific bands positive, and more indisputably, he had a positive PCR test, proving that the DNA of the Lyme bacteria was found in his blood.



My son was on two antibiotics for several months and not only did his walking improve, but also things that I had always dismissed as developmental issues resolved themselves: he was no longer tired and fussy; he no longer cried inconsolably; he no longer had tantrums; he finally enjoyed playing at playgrounds, etc. Lyme had affected him in many more ways than we had even been aware.



After several months of being off the medicine, I noticed in the fall of 2004 that many of those symptoms had returned: although he was almost five, he would often quietly tuck himself in on a chair in the middle of the afternoon and fall asleep; he would have tantrums; he would cry inconsolably; he would hit and kick for no reason. He also began to tell me that his knees hurt and that he had headaches.

In December, 2004 I took him back Dr. Jones and he retested him and put him back on two antibiotics. Within a week, he was a new child: happy, calm, energetic, and no complaints about his knees or head.



And Floating Hospital said he had growing pains; it's criminal.



Were it not for Dr. Jones, I shudder to think what my son would be like now, having been dismissed by the Lyme ``specialists'' in Boston. I will be forever grateful to Dr. Jones and urge you to please work as hard as you can on his behalf.



Sincerely,

Posts: 307 | From Byfield, MA | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
Momoftwo
Member
Member # 8732

Icon 1 posted      Profile for Momoftwo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes, I just had the same experience!

I emailed Governor Rell in support of Dr. Jones (both of my daughters are patients of Dr. Jones) and I very quickly received a personal email from an assistant saying Governor Rell was advised of my correspondence and it was being forwarded to J. Robert Galvin MD at the Connecticut Department of Public Health.

Shortly thereafter I received an email from someone at the Connecticut Department of Public Health thanking me for the letter and saying that it was being brought to the attention of the asst Attorney General.

I was also really impressed - thought that I would just get a form letter. I mean, I don't even live in Connecticut (or even in the country for that matter).

Also, I am writing a letter directly to Dr. Jones in his support.

Posts: 18 | From canada | Registered: Feb 2006  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 10 posted            Edit/Delete Post   Reply With Quote 
julie and momof2, thanks for sharing you both wrote the gov., who forwarded it to the health dept., and then AG asst! WHOOPIE~

momof2, i'm really impressed they were kind enough to write to you a Canadian; not a US resident, since your kids are being treated by dr. jones! HOORAY FOR THE GOOD OLD USA!


SINCE YOU ARE BOTH PARENTS OF DR. JONES' PATIENTS, YOU HAVE BEEN VERY INFLUENTIAL AS IT'S YOUR KIDS LIVES AT STAKE HERE! well done!


wow, julie, that was so touching and detailed how your son's life changed each time he had treatments by dr. jones! if they would not have been touched as i was, they have no feelings to very sick, critical children.

julie, god bless you also for breaking it up for this neuro lymie! i would have had to pass by not reading it otherwise.

i hope you influence other DR. JONES KIDS PARENTS by your touching letter. it was so effective; especially the ending! god gave you the write words to write from your heart and soul. thanks for sharing! [group hug] [kiss] [group hug]

IP: Logged | Report this post to a Moderator
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436

Icon 1 posted      Profile for shazdancer     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you, I will be adding my son's story to these reports as well.

We have been denied the right to testify on behalf of Dr. Jones, yet the hearing panel is considering hearing from other digruntled parents.

We were denied because our testimony was supposedly not germane to this particular case. Then somebody explain to me how the testimony of unhappy parents is germane?

Yet I feel that our testimony absolutely pertains to this case. If they heard about how serious this disease can be in children, they could understand how Dr. J might extend a prior doctor's prescription for antibiotics based on a symptom history. To not treat in the face of a probable Lyme diagnosis would have done more harm than not treating. The risk in treating was minimal when compared to the risk of not treating something as serious as Lyme.

I'm gonna keep saying it until they get it.

Shaz

Posts: 1558 | From the Berkshires | Registered: Jul 2001  |  IP: Logged | Report this post to a Moderator
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136

Icon 1 posted      Profile for CaliforniaLyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
I posted it on our local group too!!!

Doc J helped get my daughter into full remission!!! She has been in full remission for over 4 years now!!!!!!!!!

He is an angel.

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

Posts: 5639 | From Aptos CA USA | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136

Icon 1 posted      Profile for CaliforniaLyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Oh my god- over FIVE years now I think!!!!

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

Posts: 5639 | From Aptos CA USA | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
Julie-MA
LymeNet Contributor
Member # 5110

Icon 1 posted      Profile for Julie-MA     Send New Private Message       Edit/Delete Post   Reply With Quote 
I am so pleased that others have had similar experiences and that others too plan to write. I truly think it can help. I hope!

Betty, thank you for your kind words; they meant a great deal to me and made me so glad that I took the time to write to the governor. I appreciate your taking the time to be so nice to me.

He has done so much to help so many; he can't lose his license.

Julie

Posts: 307 | From Byfield, MA | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 10 posted            Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Julie-MA:

Betty, thank you for your kind words; they meant a great deal to me and made me so glad that I took the time to write to the governor. I appreciate your taking the time to be so nice to me. Julie

my taking the time to be so nice to me....uffda!

you are more than welcome; it was a pleasure to write what after i did when you touched my heart so much with your 1st hand experience, thoughts, and feelings. YOU were the one who touched the governor's heart where she forwarded it on for ACTION~

julie, you are the one to be commended in SAVING YOUR PRECIOUS DR. JONES; HEALER OF ALL LYME CHILDREN!

i'm so glad you wrote to gov., but that you POSTED HERE telling us what you'd done and then adding your letter! it's giving others ideas who struggle to find the words to express themselves!

julie, keep up the good work; we lymenet lymies are just SO PROUD OF YOU/others WHO ARE WRITING TO SAVE DR. JONES! [group hug] [kiss] [group hug]

IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 10 posted            Edit/Delete Post   Reply With Quote 
up
IP: Logged | Report this post to a Moderator
Julie-MA
LymeNet Contributor
Member # 5110

Icon 1 posted      Profile for Julie-MA     Send New Private Message       Edit/Delete Post   Reply With Quote 
Betty:

I truly have tears in my eyes rereading your post. I have felt so helpless in this Lyme fight for so long, so to think that something I have done might have some positive impact is profoundly rewarding.

I don't think I would feel that way, though, if it weren't for your thoughtfulness and kindness. Thank you!


All:

This letter writing does seem to help; please take the time to email the governor!

With thanks,
Julie

Posts: 307 | From Byfield, MA | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
cbb
Frequent Contributor (1K+ posts)
Member # 788

Icon 1 posted      Profile for cbb     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you so much for the info about e-mailing Gov Rell.

I sent my letter in support of Dr Jones.
Tried to keep it brief, but had to include some things I consider very important. Ex: this affects all children with Lyme, NOT JUST those in CT.

The following are exerpts from my letter:

Gave enough med info about my grandson to show the seriousness of his situation.

Included: "When his mother asked their pediatrician to test him for Lyme, he refused stating, 'Lyme is not a problem here and I don't see enough evidence to even run the test.'

"Sadly, my grandson had the disease for years before he finally got a diagnosis: Lyme Encephalitis - inflammation of the brain...."

"If I could talk with the CT Med Bd, I would ask that they look at all the successful cases...not just a couple complaints out of more than 10,000 patients....

"What doctor can honestly say that they have never had a patient with a complaint.
The Med Bd should be looking at the doctors who DID NOT give these children proper treatment, not the ONE who did.

"Dr Jones should be honored for his achievements and dedication, not called before the Medical Board....

"What doctors would want to follow in Dr Jones' footsteps and have the same fate befall them?

"Where will children obtain the medical care they need to have a happy, normal childhood?

"Their decision about Dr Jones will affect the health and lives of thousands of children who have Lyme disease now and those who WILL HAVE Lyme in the future."


Yesterday, I received a thank you from Gov Rell.
This morning, a staff member e-mailed that my letter was being sent to Com. J. Robert Garvin in the Dept of Public Health. Should receive a reply within 2 weeks.

I encourage all of you to write the Governor, especially if you have a child, grandchild or friend treated by Dr Jones.
It's bound to get their attention & it may truly help Dr Jones' case!!

Posts: 4638 | From South Carolina | Registered: Mar 2001  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 10 posted            Edit/Delete Post   Reply With Quote 
julie, god has given you a very special talent, and keep using it for ALL LYME KIDS AND ADULTS!

YOU ARE A VERY POWERFUL VOICE; you just keep opening up your heart, and god will provide the written words for you! ok.

you were feeling helpless before; you found your NICHE! i'm so glad we have you and many other parents/grandparents writing such important messages to SUPPORT DR. JONES.


i don't have lyme kids or know anyone personally who has been treated by dr. jones; so this is one time i won't be writing a letter! i don't have the 1st hand experience telling them of my PERSONAL HANDS-ON EXPERIENCE.

it would take away from the wonderful, heart-felt letters you all have been writing and posting. but i'll keep reading here, and writing to NEWSPAPER, etc. in support of dr. jones and other llmds like him!

as the ALABAMA country music band/singers say .... ROLL ON lymies! [Big Grin]

IP: Logged | Report this post to a Moderator
sizzled
Frequent Contributor (1K+ posts)
Member # 1357

Icon 14 posted      Profile for sizzled     Send New Private Message       Edit/Delete Post   Reply With Quote 
Wow! Letters coming in from all over the US!!!

Yes!
Yes!
Yes!

Not great that it is going through their Dept. of Health....but I believe the Assist. Atty Gen. is sensible.

EVERY letter counts!!! [group hug]

Posts: 4258 | From over there | Registered: Jul 2001  |  IP: Logged | Report this post to a Moderator
Julie-MA
LymeNet Contributor
Member # 5110

Icon 1 posted      Profile for Julie-MA     Send New Private Message       Edit/Delete Post   Reply With Quote 
This is wonderful...please keep writing! I am so pleased that there is this momentum out there, and Betty, you are a big part of that; your posts are truly inspiring...thank you.

Julie

Posts: 307 | From Byfield, MA | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 10 posted            Edit/Delete Post   Reply With Quote 
julie, you'll never know how much your post means to me at this time. a new troll entered and sent 2 of 3 nasty pms to me! glad this guy was short lived but very hurtful, nasty things written back to back.

so julie, you are my UPPER on this early morning hours post! wow, you brought back up my moral that hit rock bottom for awhile. [group hug] [kiss] [group hug]

IP: Logged | Report this post to a Moderator
FightFireWithWater
Frequent Contributor (1K+ posts)
Member # 5781

Icon 14 posted      Profile for FightFireWithWater     Send New Private Message       Edit/Delete Post   Reply With Quote 
Good going.

--------------------
"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

Posts: 1265 | From does not list | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
nan
Frequent Contributor (1K+ posts)
Member # 63

Icon 1 posted      Profile for nan     Send New Private Message       Edit/Delete Post   Reply With Quote 
[kiss] [kiss] [kiss]

Hugs and kisses to each and every one of you!

Our voices DO make a difference!

[woohoo]

--------------------
nan

Posts: 2135 | From Tick Country | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.