Dr Charles Ray Jones

[pamsboy]

Anyone have any comments? I am in the NY area and want my son to see someone great who can really tell if he has Lyme. If you have Dr Jones contact info that would be great too.

 

TIA, Pam

[coco]

Dr Jones is in New Haven, CT. He is booked out quite far, I believe, or at least that's the impression. If you live locally you can probably get in fairly quickly. Your first visit will probably cost you around $1500, no insurance taken, and they will draw blood after your consult right there. First visit is quite extensive and takes about 1 hr and 15 mins or so, but you get 2 hours. You will get results of bloodwork and a written report within about 3 weeks. Follow-up appointments are $350. The front office is who will most likely be in contact with you. If you have questions you talk with them, not Jones himself. They forward your question to him and they call you back with an answer/reply. You always get the answering service regardless of what time of day you call and his office staff will call you back. Dr Jones does not do phone consults or emails, and it may be partially due to his age, over 80, and what he is comfortable with doing. Hope that helps. Best of luck.

[harpazo_hope]

Dr Jones is in New Haven, CT. He is booked out quite far, I believe, or at least that's the impression. If you live locally you can probably get in fairly quickly. Your first visit will probably cost you around $1500, no insurance taken, and they will draw blood after your consult right there. First visit is quite extensive and takes about 1 hr and 15 mins or so, but you get 2 hours. You will get results of bloodwork and a written report within about 3 weeks. Follow-up appointments are $350. The front office is who will most likely be in contact with you. If you have questions you talk with them, not Jones himself. They forward your question to him and they call you back with an answer/reply. You always get the answering service regardless of what time of day you call and his office staff will call you back. Dr Jones does not do phone consults or emails, and it may be partially due to his age, over 80, and what he is comfortable with doing. Hope that helps. Best of luck.

 

 

$1500 This was going to be my last resort... I understand with all the legal crap going on, but still...

[Fixit]

i have not fully persued lymes yet....

but i have to believe there are other lyme doc's who would serve you well..

hopefully this man has trained and guided many and you can find someone..maybe not as many years experience..but caring enough to follo through and maybe save you some pennies...till he/she gets to be 80!!!!

 

get in contact with llads and maybe talke with lyme mom

[PacificMama]

Your first visit will probably cost you around $1500

 

This is not correct. I'm not sure exactly what the first appointment fee is, as we have only been paying follow up fees for some time. But it can't be anywhere near this amount. Perhaps someone who has scheduled a first appointment recently can verify what they have paid. Maybe you said $1500 because you are including the cost of lab work?

I can tell you that the two hours he spends with you for initial visit are the most thorough two hours you will ever have with a doctor.

 

Dr. Jones has always done phone consults. Of course, you have to be a patient of his first before he will consult over the phone.

[LNN]

His fee for initial visit, as of last week, is $900. Follow up visits are $350. According to his fee schedule, he does do phone consults - $350/hr. (unless they just send out an out-dated schedule). if they draw blood on site, it's $75 for the draw plus any lab fees. But you also have the option of having the blood drawn at your local lab. Clinical Labs, which is in northern CT, will draw blood for others labs (they did our Igenex & Cunningham draws) for $15 so long as they have signed doctor's orders.

 

he is booking 3 months out, but you may be able to get on a waiting list of cancellations. When I called, they had a cancellation available two days from when I called. Unfortunately, I wasn't able to make it then. But if you're flexible, you can probably get in fairly quickly.

 

You can also contact Ilads.org and get a list of doctors in your general area. When I contacted them, I was given several doctors in NY. I saved the list they sent. PM me if you want me to email it to you. But I understand from at least one other mom that $900-$950 is a common initial fee. Most will not accept insurance but you may want to contact your insurance co. and see if they'll reimburse you a portion of an office visit. I know our insurance co. will cover igenex if we submit for reimbursement. Have not checked on specific doctors yet.

[lyme_mom]

Anyone have any comments? I am in the NY area and want my son to see someone great who can really tell if he has Lyme. If you have Dr Jones contact info that would be great too.

 

TIA, Pam

Dr. Jones is an amazing doctor. His fee is not unreasonable considering he spends two hours with you and throughly reviews the medical history before you arrive. If you have a sick child and you are not sure what is wrong with the child he is an ideal doctor to see. He has been treating the sickest kids with Lyme Disease for forty years so he has seen a lot. He also knows what lyme and the coinfections look like better than anybody based on his experience. Dr. Jones got his start working with kids with cancer I believe. He is extremely smart. The way I look at it is if you think you may want to see Dr. Jones I would do it while you can. At his age you never know how long we will have him to give us advice. Dr. Jones will never retire b/c this is his calling. He works 7 days a week, often for 15 hours a day. He is totally devoted to his work with kids. He was going to be a minister and went to divinity school with Dr. King but later decided that medicine was his calling.

[coco]

We went in to see Jones as "Lyme Virgins" and had him do all the bloodwork HE wanted to do, so as we wouldn't miss any appropriate test needed. We figured he knew best, so OUR first appointment with bloodwork was $1500. I was told by Bonnie that he does NOT do conference calls, because we had to reschedule a followup appt just 2 weeks ago and tried to see if a call could be substituted. The reply was that Dr Jones does not do conference calls, so that's what I'm going on. We found him to be kind, caring, and patient. However, he was a bit difficult to understand, repeated himself quite a bit, and, frankly, was showing his age. I mean no disrespect at all...I wish he could stay 50 forever for I'm sure he has the best knowledge of Lymes, but sadly age does take it's toll. I found it a bit frustrating that you always have to run your questions through the office people, and you can never have a 5 minute question session with him on the phone. You have to book a full in-person appointment for $350. I'm sure many people find that to be just fine, but at this stage of the game I'd like to talk to the doctor myself. I wish the best for Dr. Jones and am appreciative of his help. I know many doctor's offices have quirks, it's just what you're willing to put up with. Just my opinion.

[P_Mom]

WOW!! Major expensive! The LLMD I saw up here in PA was 350 for the initial 2 hour visit! Then, 140 for follow-ups! He, of course, was not covered by insurance, but, they sent in claims anyway and it counted against my deductible. He sent me to get my bloodwork done (dozens of tests) at a lab that takes my insurance...so, that charge was covered and not included in the visit.

 

As Emerson said on another thread..."it is disgusting that sick kids can't find treatment." (meaning no LLMD's in her area......it is....I agree!) However, it is also "disgusting" (per Emerson) for the LLMD's to charge sooo much money to help these sick kids!! I wonder how many are going untreated because they can't afford the prices! (and insurance will hardly ever cover them)

 

Same goes for PANDAS and finding docs who believe...IVIG..etc. It is a shame. People are cashing in retirement funds, selling homes, etc.

Edited September 1, 2010 by P.Mom

[lyme_mom]

WOW!! Major expensive! The LLMD I saw up here in PA was 350 for the initial 2 hour visit! Then, 140 for follow-ups! He, of course, was not covered by insurance, but, they sent in claims anyway and it counted against my deductible. He sent me to get my bloodwork done (dozens of tests) at a lab that takes my insurance...so, that charge was covered and not included in the visit.

 

As Emerson said on another thread..."it is disgusting that sick kids can't find treatment." (meaning no LLMD's in her area......it is....I agree!) However, it is also "disgusting" (per Emerson) for the LLMD's to charge sooo much money to help these sick kids!! I wonder how many are going untreated because they can't afford the prices! (and insurance will hardly ever cover them)

 

Same goes for PANDAS and finding docs who believe...IVIG..etc. It is a shame. People are cashing in retirement funds, selling homes, etc.

I am also disgusted that all children are not getting the proper lyme treatment but I am not disgusted with the lyme doctors about this. They are risking their livelihood and their savings to treat lyme disease. I hold the infectious disease society of america responsible for the growing number of really sick kids who are not properly treated for Lyme Disease. The IDSA guidelines for the diagnosis and treatment of Lyme are so narrow and limiting that you would think an insurance company wrote them. They were the subject of a lawsuit by the Attorney General of CT which you can google. I think it is a mistake to think that these Lyme doctors are raking in the money b/c they are routinely called before Medical Boards to explain their lyme treatment. They have to hire a lawyer and sit and wait for these boards to decide their future. At any point in time they could lose their license and face big fines. They could wipe out a practice. Many lyme literate doctors have stopped treating lyme because it simply isn't worth it. The reason these doctors do not take insurance is that the insurance companies would drop them for "overtreatment of lyme disease" b/c they are pointing to the IDSA guidelines which indicate that chronic lyme does not exist and that anyone with symptoms after being treated for three weeks has "post lyme syndrome" (which the by the way is not treatable, lucky for the insurance companies). The outrage should be directed toward these ID doctors who dismiss lyme as easy to treat with three weeks of an antibiotic.

[mandyknowles]

Anyone have any comments? I am in the NY area and want my son to see someone great who can really tell if he has Lyme. If you have Dr Jones contact info that would be great too.

 

TIA, Pam

 

my daughter sees dr jones. we really like him. our first visit was $875 for office visit and like $333. for labs, but i think it just depends on what he wants to do.

[mandyknowles]

We went in to see Jones as "Lyme Virgins" and had him do all the bloodwork HE wanted to do, so as we wouldn't miss any appropriate test needed. We figured he knew best, so OUR first appointment with bloodwork was $1500. I was told by Bonnie that he does NOT do conference calls, because we had to reschedule a followup appt just 2 weeks ago and tried to see if a call could be substituted. The reply was that Dr Jones does not do conference calls, so that's what I'm going on. We found him to be kind, caring, and patient. However, he was a bit difficult to understand, repeated himself quite a bit, and, frankly, was showing his age. I mean no disrespect at all...I wish he could stay 50 forever for I'm sure he has the best knowledge of Lymes, but sadly age does take it's toll. I found it a bit frustrating that you always have to run your questions through the office people, and you can never have a 5 minute question session with him on the phone. You have to book a full in-person appointment for $350. I'm sure many people find that to be just fine, but at this stage of the game I'd like to talk to the doctor myself. I wish the best for Dr. Jones and am appreciative of his help. I know many doctor's offices have quirks, it's just what you're willing to put up with. Just my opinion.

 

Actually we have our appt by phone in two weeks. of course we have already been to see him twice.

[P_Mom]

Sorry, Lyme Mom...that particular docs fees are outrageous......only the wealthy have the luxury to afford to see him. That is a shame for the "less wealthy" kids....I know we could never afford that.

 

Just my opinion........

 

In an article I was reading about Jones.....

 

"Jones estimates the defense of his license over the months of hearings will cost more than $1 million. He is largely letting others solicit for and supervise his legal defense fund so he can focus on his practice, which remains all-consuming."

 

And..... "Because of generous donations to his legal defense fund, he has been able to continue treating desperately sick children during the four years of legal proceedings. Feeling the pressure of the 37% increase in Lyme disease cases from 2006 to 2007, Dr. Jones's office is averaging three new patient calls a day."

 

Kudos to him for getting children well...but, is anybody feeling my anger with the outrageous prices....and, then donors paying for his legal fees? I don't know....maybe it is just me g-night. In the end...I hope all the children get well!

Edited September 11, 2010 by Sheila Rogers

[KeithandElizabeth]

After almost 2 years of "PANDAS" issues and tremendous amount of family toxicity and emotional pain, I just have to say that these lyme doctors are few and far between (just like the PANDAS doctors) and I cannot say enough or give them enough kudos for what they are doing for these children/people. Please remember that they are dealing with ridicule from their physician peers and they are constantly protecting their medical licenses in order to help an epidemic of suffering people.

 

I am still in shock that we are dealing with lyme because our symptoms were mostly psychological and I am in awe in terms of what these "microbes" can do to the mind and body.

 

Our LLMD recently told us the Dr. J has paved the way for all lyme doctors.

 

Elizabeth

Edited September 2, 2010 by KeithandElizabeth

[PacificMama]

P mom, Why are you only posting on lyme topics? Why are you researching Dr. Jones? Really – why do you feel the need to denigrate a doctor who has devoted his life to helping kids?

 

Quite frankly, with all your research you apparently know next to nothing when it comes to Dr. Jones. (I guess there's no nurses and medical assistants and office staff to pay, no rent to cough up, no insurance premiums to fork over, and on and on). It'd be sweet for you to take a little train trip up to see Dr. Jones in CT… you might be surprised at the humble (and that's being kind) medical office he occupies. And you might be even more surprised to find him living with his daughter and grandson in a very modest apartment above his medical practice. But most surprising, perhaps, are the people you might meet in his waiting room. I can assure you, they are anything but wealthy. He works 6 full days a week seeing patients, and spends nearly a full seventh day catching up on files and doing phone consults. Do you know how many kids he helps for FREE or reduced fee?!

 

Do you have a clue what it takes to run a medical practice these days – let alone a lyme practice where the medical board is breathing down these doctors neck every second? Dr. Jones staff is AMAZING! They are there for us day or night. They will always return my phone calls and faxes, and have helped us though untold emergencies immediately. He deals with the sickest of sick kids. Every day, in addition to his visiting patients, he is called upon repeatedly to consult with other physicians attending to lyme patients – many times in very critical scenarios. Patients (lots of them!) are calling constantly, with all sorts of problems or emergencies, and he or his staff reply to or handle all of the calls! And one of his staff ends up spending a huge portion of her time just helping parents by writing them letters, and walking them through the process, so they can get the IEP's they need for school. Parents call all day long, BEGGING for help, and they get it. Money is tight for us too, but the fees I have paid to Dr. Jones' practice are the best bargain I've ever laid out for. We would be in a world of pain and despair without his (and his staff's) care for our daughter – REPEATEDLY coming to our aid every time we needed it (no charge!).

Edited September 11, 2010 by Sheila Rogers