Topic: HELP! Is there anyone here that can attest to the legitimacy of Dr.J in CT?
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I need to establish Dr.J's credibility for my husband. He needs to know that my daughter would not be treated for Lyme if she does not have it.
My husband doesn't see the symptoms I see and is uncomfortable about only having the 41KD IGG and 23KD IGM positive Quest Diagnostics Western Blot test. He fears that a positive diagnosis would be made based soley on these grounds. I should also mention that I am Neuro-Lyme affected and I guess that also makes him question my judgement.
Can anyone here offer any input that might justify the trip to CT, the expense and going outside our insurance and incurring direct medical expenses?
Any published articles, personal experiences, etc.
Thank you in advance for your time & efforts. I truly appreciate any help I can get!
Ali
[ 08. November 2006, 09:26 PM: Message edited by: AliG ]
-------------------- 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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posted
The Lyme Times had an excellent article on him, is in the archives of the newsletter website. It might take some searching, but it is about the best thing for this situation. The piece was titled "A feeling for the organism" and was printed in the winter 2001/spring 2002 issue (number 32).
Plus, he has treated 10,000 kids. If this is not a recommendation, I don't know what is. Any good doc will do a differential diagnosis to consider other possible causes, will not automatically diagnose lyme. The difference is that the ignorant docs will hardly ever consider lyme in the differential; this is why you have to go to a lyme expert, so it will at least be considered.
Posts: 8430 | From Not available | Registered: Oct 2000
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I felt compelled to reply. I am from New Jersey also as you can see. I haven't posted alot lately because our lives are getting back to normal and we are making up for lost time. As with alot of lymenetters, one tends to post more when they are searching for answers, doctors, treatment options, and help. I found help through the SE PA Lyme Suppport Group. A personal phone call from their group in Jan 06, put me in touch with Dr. J. Now understand, I was new to this site, and new to the reality of this disease. Who could this Dr. J be?? Could he possibly be the "Angel" that everyone here affectionately called him? The thought of traveling so far to a Doctor with such a sick child seemed almost cruel, but honestly, New Jersey is just a skip away when you see people from Michigan, Texas, Florida, Maryland, etc. in his office.
To be honest, my husband had a hard time believing my daughter had lyme. He now admits that it was just too painful to admit that she had such a serious illness. To except illness is hard for some.
On our first visit, my husband brashly asked Dr J, how many people he doesn't diagnose with lyme. He replied with almost exact numbers and what the other illnesses where. You have to also understand that most children who finally make it to his office have been to many, many, many doctors and specialists looking for answers that they haven't found. My husband is now Dr Jones Biggest fan. My 10 yo daughter is his biggest admirer. She thinks he is the coolest "old" person she has ever met. I had my prayers answered the day we walked through his door. He saved my daughters life!!!He is very witty, very clever and very knowledgable. His experience and expertise on lyme disease is unparalleled. He can actually tell you what abx work in central to north jersey and what abx work best in central to south jersey b/c he knows what strains of lyme are most common in those areas. There is no better lyme pediatrician in the world. And yes, he fields calls from all over the world. Another point I feel I must also make is that his staff is the most responsive, organized, and friendly staff I have ever dealt with. They are not scam artists by any means and I have to tell you I was saddened to see this even suggested. They are very conservative in their testing and are not looking to rake anyone over the coals. Just the opposite actually...they never turn anyone away who can't pay.
I am not going to tell you that it was easy for my daughter to become better. She suffered terribly. Vision loss, siezures, nausea beyond all control, gastro issues, weakness, and so on. It took many months of treatment before we saw some real relief. She is still being treated because she is still not symtom free. I thank God every chance I get for bringing us to Dr J. You will not be dissapointed.
He has many, many published articles. I beleive I found a very thorough one at the "Lymetimes" web site. There are probably some listed in the newbie link also. One word of advise, don't wait...time is of the essence.
Posts: 263 | From Georgia | Registered: Feb 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
AliG said.. "He needs to know that my daughter would not be treated for Lyme if she does not have it."
I would be THRILLED if your daughter didn't have Lyme.. and so would Dr. Jones. We must remember.. a Lyme doctor was first and foremost.. a doctor. Only the idiots accuse him of seeing "everything as Lyme". That is because they were the ones who totally blew it in the diagnostics and treatment field... and ended up being the cause of the childs problems.
And it isn't as if he NEEDS the business. Heavens no! He is ONLY doing what he does for his love of the children.. and we all know that no one else has the know-how or dedication to do the same.
I tell mothers and fathers here .. and I've been doing it for years.. that I would crawl on my hands and knees if I had to... in order to get my child to him if they had Lyme. Never ever ever... not one time .... has someone come back to me and had a complaint about Dr. Jone's. It is almost surreal to see the effect he has on so many. A positive effect... always.
Never have I seen a child run up to hug their doctor when they get there like they do with him. I was a kid once.. and from what I remember .. my thought while in a doctors office was to get up and run out as fast as my little legs could go... AFTER kicking the doc in the knees!
Dr. Jone's has just the opposite effect. The man is incredible. He would be MY doctor, but for one small thing...
I am too old!!!
I also agree with everything lymedesign said.. only there is something else you need to know.
Lymedesign is talking about one child... one precious dear child. And you see how she feels... and how strongly she feels it.
I've been working with thousands of sick children over the years.. and have sent ALL of them to him. At first we had no one else... but then again.. we didn't need anyone as long as he was there.. and he always has been there.
Please tell hubby for me that the worst thing one can do, if they suspect Lyme MIGHT be the problem, is to wait. At the least, go one time and see for yourself. And ALWAYS give the child the benefit of the doubt. They depend on their parents to do what is best and go the extra mile because they can't do it for themselves.
Also.. using one QUEST Western Blot as a basis for a yes or no is not realistic. That test leaves a lot to be desired, to start with. Let Dr. Jones run more tests like he always does... and perhpas once a decent set of tests are done.. the proof your hubby needs will be there.
If it isn't.. and sometimes it isn't... hubby needs to remember our BEST tests.. under ALL the right circumstances... usually only detects about 60 percent of the folks with Lyme on the first run through. (Actually I think the 60 percent I mentioned has improved.. since the tests have.. so I believe it is higher now.. but I don't have time to search it out... sorry)
I could go on and on and on about how wonderful he is... and how this is the right thing to do... but I do believe you know me well enough to know that I would never jeopardise a child's life and send them there if I had ANY doubts about Dr. Jone's ability to determine a proper diagnosis and a proper treatment protocol.
Oh.. and the staff in his office. Absolutely wonderful!
All I can say is that I've been on this board for 6+ years and I've NEVER heard ONE bad thing about Dr Jones. It's been ALL GOOD. Rave reviews, you might say...with kids getting their young lives back.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Ali, Here's a link to the article in the Lyme Times... scroll to page 5.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
I want to repeat Lymetoo's words. I will tell you that Dr Jones has literally saved my sons. I no longer trust any Dr 100% .... except for Dr Jones.
If your husband would meet Dr Jones he would know he has made the right decision to take your daughter there.
Have your husband keep in mind that this is your daughter's life........ and it is for the rest of her life.
Posts: 758 | From now TX | Registered: Mar 2001
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posted
Ali, We are from NJ and my 14 yr old son has been seeing Dr. J since last year. He is absolutely the best doctor, peds or otherwise we have ever seen. He spends a lot of time on each visit with a thorough exam, keeping very meticulous notes.
His bedside manner is outstanding - very down to earth, very approachable. His has a very sharp, subtle sense of humor. We never feel rushed; he always takes a lot of time answering any questions we may have. He doesn't just dictate his opinions, but rather discusses them with you, listens to what you are saying (!!!) and works with you for a solution that makes sense.
His dedication is exemplary - he works 7 days a week! At the last hearing we asked him if he was going home to rest after it was over - he replied he had to go back to the office since he had patients scheduled.
I also need to complement his office staff as well. They are the very compassionate, knowledgeable and always try to help. With all the insurance hassles, they know what to do. Like Dr. J., I have to say they are the best in what they do.
I would not hesitate recommending him at all.
We had an appointment originally scheduled for this week but had it changed to next week. We will be seeing him Wed, the day before the hearing and staying over to support him at the hearing the next day.
As a side note, we first saw Dr. J speak at a conference last year, and in his presentation he mentioned the thousands of patients he treated over the years. After his presentation he fielded anonymous audience questions which were written on index cards. We submitted one which described my son's chronic condition, how we were struggling with treatment and basically asked the question of what would he recommend. His answer, was ``...he needs to come to my office''.
We waited after the presentation and were able to speak to him. An earlier LLMD who presented indicated she had a 1 year waiting list and was not accepting new patients. We expected a similar answer from Dr.J, since he is the top doc for pediatric Lyme. We mentioned that he had answered our question and we wanted to him see our son. Cautiously, we then asked if he was still accepting new patients. His answer - ''I never turn down patients, I would not be able to sleep at night'' says it all.
Posts: 36 | From nj | Registered: Sep 2006
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posted
I also think you need to make sure your husband goes with you to the appt, and forms his opinion on personal experience. Let him talk to other parents there, etc. Some hubbies have a hard time getting on board, and you should make the effort now so you will have his support when treatment takes a long time.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Dr. Jones is a gem! hats
Posts: 956 | From MA | Registered: Nov 2004
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
God Bless each and every one of you! Thank you so much for taking the time to help me with this.
I'm going to pass this info along and I hope it might give him a better picture of the kind of man Dr.J really is.
Thank you again, and again, and again..........
Ali
-------------------- 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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