Dr Charles Ray Jones

[P_Mom]

yeah....I thought you needed to get some work done anyway! And I was "out" a few threads ago!

 

(I should be cleaning my house! )

[JTs-Mom]

I know this thread has veered far away from the original post, but just thought I'd add my two cents about the cost of LLMDs.

 

At my son's previous pediatrician office, he got less than 15 minutes with the doctor at his appointments. They charged around $125 for each appt. Thus, the hourly rate for these pediatricians is $500 ($125 x 4 patients per hour).

 

My son has an appt with an LLMD who charges $1100 for the first office visit. Sounds outrageous you say? Well... she allows 2-3 hours for the first appointment and thoroughly reviews all medical records, test results, and a chronology of symptoms provided by the parent PRIOR to the appt. So, in actuality, she is charging about the same hourly rate as the pediatrician with whom you get only 15 minutes.

 

Furthermore, I would consider her a "specialist" because she is well trained in the disease that is affecting my son. So from that standpoint, her fee seems like a bargain to me!

[H Mom]

On the issue of Pandas vs. Lyme. I started down the Pandas path in February and totally believed that I finally found the answer to my D!2's long term symptoms. I immediately began Pandas treatment of High dose IVIG and low dose antibiotics (in March 09). The treatment was not working and in August I consulted with Dr. B who ran a large panel of blood work - including Western Blot Lyme - which I had done at Lab Corp (not Igenex). I did not think my kids were at risk for Lyme and was shocked to find out that both of my children tested positive for Lyme. Both of my children also have symptoms to support the diagnosis. We were fortunate to be able to get in with Dr. Jones quickly and spent in excess of 4 hours in his office for our initial consultation. In the three weeks since our consultation, I have had to call Dr. Jones office multiple times with questions about my kids symptoms and treatment. I am extremely pleased with the fact that his caring staff takes my questions to Dr. Jones and returns my calls with answers in a timely manner. The cost of this is covered by the initial consultation fee. I still cannot help but wonder if there is some connection between Pandas and the Lyme. I am hopeful for answers.

[ajcire]

What symptpms do your kids have that go with the lyme diagnosis? Physical symptoms?

 

 

 

 

 

On the issue of Pandas vs. Lyme. I started down the Pandas path in February and totally believed that I finally found the answer to my D!2's long term symptoms. I immediately began Pandas treatment of High dose IVIG and low dose antibiotics (in March 09). The treatment was not working and in August I consulted with Dr. B who ran a large panel of blood work - including Western Blot Lyme - which I had done at Lab Corp (not Igenex). I did not think my kids were at risk for Lyme and was shocked to find out that both of my children tested positive for Lyme. Both of my children also have symptoms to support the diagnosis. We were fortunate to be able to get in with Dr. Jones quickly and spent in excess of 4 hours in his office for our initial consultation. In the three weeks since our consultation, I have had to call Dr. Jones office multiple times with questions about my kids symptoms and treatment. I am extremely pleased with the fact that his caring staff takes my questions to Dr. Jones and returns my calls with answers in a timely manner. The cost of this is covered by the initial consultation fee. I still cannot help but wonder if there is some connection between Pandas and the Lyme. I am hopeful for answers.

[H Mom]

My DD13 was diagnosed with OCD at around age 7 or 8. Her OCD was mild and she functioned well at school. She was also a calm and obedient child. The OCD symptoms would change through the years and there were periods of time in which her symptoms were mild or in remission. A few years ago when she was sick her symptoms increased and I asked our Dr's about Pandas and I was told that Pandas was not recognized and I should not look into it. In February 2010 my 15 year old came down with strep and my daughters symptoms skyrocketed. She became violent, her OCD symptoms got very bad, and she had hallucinations on a couple of occasions. Because her symptoms got worse around the same time my son got strep I started researching Pandas again and found this forum and became convinced my DD13 had Pandas.. Her strep titers were high. We consulted with Dr. K and he dx Pandas and recommended IVIG. We had the IVIG in March. She seemed to improve a little during March and April, but this summer she seemed to be going down. Her OCD escalated, her stamina and motor skills went down, she began having headaches, she developed a bad rash on her face we thought might be from the low dose antibiotics, she complained of rapid heart beat and chest pain, ringing in her ears We felt we were not getting the answers we needed and consulted with Dr. B. Dr. B ordered a complete panel of blood work, including Lyme and the results were positive. My husband and I now believe that all of the increased symptoms that started in February are the result of Lyme - especially the raging and violence. Based on a telephone call with Dr. Jones office yesterday, they can tell that she has had the Lyme for at least 6 months because she is positive for Band 31 which does not show up early. (The Lyme testing was done at the end of July). (same with my son - see below)

 

My DS15 has never had OCD symptoms. He has always been an excellent student and participated in sports. Last Fall he began losing weight (he lost 15 pounds), his grades went down, he quit all sports and became lethargic. He was disappointed in his falling grades and told me he did not feel like his mind was clear like it used to be. We were very concerned about him, but his symptoms were different from my DD13. He did not have high strep titers. Because we were consulting with Dr. K about DD13 we brought these issues to his attention and he DX Pandas for my son. He had IVIG in May. He seemed to improve greatly post IVIG but we noticed a slight bit of back-sliding at the time we decided to consult with Dr. B. Dr. B ran the same panel of blood work for DD15 and he was positive for Lyme also.

 

Both kids have been on Lyme antibiotics (3 kinds - full dose) for 2 1/2 weeks. I feel I am starting to see improvement with both, but it is a little soon to tell.

[Sheila]

Hi Folks -- I toned this down in spots. Once one post was adjusted, sometimes others needed to be changed also so they would make sense. Sorry in advance if anyone is annoyed about it.

 

In a nutshell, Dr Jones is a respected and extremely experienced Lyme specialist--as well as a pioneer in the field. There are certainly other good Lyme docs around the country.

 

it seems most of the medical fees for consultations and lab testing on conditions we on these forums are concerned about would not be considered a problem if insurance covered them---nor are they necessarily out of line when compared to other specialists. Beyond that of course, everyone needs good medical coverage to begin with. Sadly, we know this will remain a huge problem and source of pain for our families for quite some time. If one does have insurance, it is always a good idea to check to see if the same lab work can be done through a location where insurance coverage will be better, if that issue applies.

 

Since the thread switched topics along the way, I am now closing it. Thanks for everyone's input. Sheila

 

 

 

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