posted
I live in Nashville and have tested positive on a Western Blot for Lyme. I have been dx with MS for the past 4 years, but now find out that I may not have MS. I hear that this happens often. I have been told by lots of people on Lymeaide that my best bet is to see an LLMD. Does anyone know if there is one in Nashville or around? If so, do you have a number I can reach them at. If not a number at least a name and location and I can search myself. I'd appreciate any info anyone can give me.
IP: Logged |
jpoppeck
Unregistered
posted
Hey there Head west to Springfield Missouri to Dr. C. this wonderful doctor has a website www.drcharlescrist.com - the site can give you phone numbers and addresses etc. Run don't walk this man knows his stuff about Lyme
posted
Really - I heard about Dr. C. and went on his website yesterday. Do you really think I should go to MO to see him? He's that good??????? Thanks for the reply.
IP: Logged |
posted
Welcome to LymeNet. We'll do all we can to help you.
Unfortunately, there are very few Lyme Literate Med Drs (LLMDs), so most Lyme patients have to travel to be evaluated by an LLMD.
In 1992, my father & I had to travel from South Carolina to New Jersey for an accurate diagnosis, and my grandson is now seeing a Lyme Pediatrician in CT.
Traveling to a LLMD takes time, money, & energy, but it is definitely worth it!!
If you were diagnosed with MS but now have a positive Western Blot for Lyme, then you really need to be evaluated by a doctor who has a lot of expertise in treating Tick-Borne Diseases (TBDs). You need to see a dr with a lot of "satisfied customers" who have been diagnosed & treated for Lyme disease.
Keep in touch & ask as many questions as you need to.
Posts: 4638 | From South Carolina | Registered: Mar 2001
| IP: Logged |
lmarchese
Unregistered
posted
Thank you for the post re travelling and the referral to the site about Dr. C. I think I will call his office today. thanks. I also wanted to know if you could give me the name of the pediatric lyme doc. I'm pretty sure they are in big demand. If there are so little for adults there must be even less for kids. I have two children and will probably need to have them tested (from what Iunderstand). I grew up in NY and my parents are still there. It would not be too big ofa deal to take the kids to CT or for me to go to NJ either. Are there any rave reviews of NJ docs???
IP: Logged |
rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
Are there any rave reviews of NJ docs??? I, personally do not know of any. People from all over the country go to MO to see Dr. C. And, he is a member of ILADS, a medical professional organization specificly for the treatment of Lyme Disease (LD). Dr. C is one of the most respected LLMD's in the country and sees several patients from Nashville area.
My daughter and her two children, 7 and 1, will be seeing him in August. I've seen him for almost two years now. Not, to say that you'd need him for that long, I've had this for probably more than 15 years.
And, I made, what I think, was a great mistake by letting my PCP prescribe IV Rocephin as a first course of treatment not knowing that that alone would send the bacteria (spirochetes) into the cysts form thus, interferring with my recovery process.
Dr Jones is the pedi, and, he has given permission for his name and number to be given here. You may phone him at 203-772-1123.
You may do just as well for you and you children to see Dr. C. Children respond very well to treatment and, if time is of the essence, then you may want Dr. C to order the tests for your children.
Just a thought. Good luck and let us know what you do and come here often for answers and support.
posted
I don't have any current info on NJ drs, so someone else will have to help you with that.
When you call Dr C's office in MO, ask if he treats children. He may be a good one to do the testing, consult with Dr Jones (if needed), & work with Dr Jones on treatment.
Dr Jones has given permission to give his info here:
Dr Charles Ray Jones, Lyme Pediatrician 111 Park ST, 1st Floor New Haven. CT 06511 Phone: 203 - 772 - 1123
What ages are your children? Do they have symptoms of Lyme disease?
Posts: 4638 | From South Carolina | Registered: Mar 2001
| IP: Logged |
lmarchese
Unregistered
posted
Okay - I just called and got an appointment for August 19th. I was shocked to hear that they could see me that soon. I was expecting to wait for months. I have one concern. The $$$$$. I have insurance, but he does not accept it. They don't me what I had to pay and it had to be up-front. Plus if there was any lab work done. Does he do the labs then or do you get to go home and have them done with your PCP or another doc at home so insurance would cover at least thatmuch. I have missed so much work (without pay) and have spent so much in co-pays, deductibles, etc that I don't really have the $$. I think I need to see him so I'm willing to do it, but does anyone know if he works with you re payments, etc. Advice - please. Thanks, Linda
IP: Logged |
posted
Hi lm! Dr C is great! And he can take care of your children too.
I don't know if he will work with you on payments. Call and ask.
I think you could get the labs done by your PCP, but they may not know how to handle the blood, etc. They would have to follow his instructions to the letter.
Then there's the problem of whether or not your PCP will actually be willing to send the blood to the proper lab. LLMD's don't use "regular" labs such as Labcorp. [at least most don't.]
posted
Hi everyone. I went to my neuro and got part of my results. Unfortunately the Lyme part was not back, but I have ogliclonal bands in my spinal fluid as well as in my blood, which he says does not happen in MS. The bands stay in the spinal fluid when it is MS. Anyway, he says that I'm in good hands with the infec disease doc he's sending me too, but I'm a little concerned. I'm going to see her, but after everythign I've read it seems that all docs are not completely knowledgeable in Lyme. Like I said - I'm going to see her and then I'll decide if I like what she says. I have an appointment with Dr. C in August, but he doesn't take myinsurance. Does anyone know of any other good docs in NY. I heard that LI has a lot of docs that study Lyme. I'm just wondering if there is one there that might take my insurance. Like I said - $$$ is tight with me being out so much. I'm just confused about what to do and who to see. Also, has anyone gone on disability while going through treatment. From what I hear it can be tough and can last for a long time. Any thoughts on this??? Oh yeah - that you for all the responses so far. They have been very helpful.
IP: Logged |
rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
Most LLMD's do NOT take insurance as it keeps their treatment tied to the insurance companies and not the best for the patient. But, most will file for you.
From what I've read over the past few years, here on LYmeNet, is that the Eastern LLMDs seem to charge a lot more than Dr. C does. I've seen reports of outrageous charges and I've never seen this about good ole doctor C.
Many poster's here do not have insurance and, me included, until Medicare took hold. I do understand your concern about $$$. Dr. C is not only a great LLMD, but, compared to other doctors, he is also, one of the most reasonable in regard to fees.
He understands this and will work with you as much as is possible. I've seen reports of Eastern doctors charging as much as $1200 for the first visit saying they are including tests. Well, most tests aren't anywhere near that amount. So, I believe to say "buyer beware" is correct in this instance.
As far as disability goes, many posters here are on either work disability or SSDI or SSD, such as I am now on. It took me 3 years and 10 months to get my first check. Some longer and some get it earlier.
Dr. C is great at providing letters to support your diagnosis and treatment and subsequent disability. I know that his letter finally was one of the key factors in me finally getting approved for SSD.
He does see and treat children, as I reported above that my granddaughter's ages 7 and 1 year olds are seeing him at the end of August. They have recent positive WB's and this will be their first trip to see him.
posted
I have a PPO through Aetna, and they reimburse me 80% of Dr. C's charges.
Posts: 96227 | From Texas | Registered: Feb 2001
| IP: Logged |
lmarchese
Unregistered
posted
Rosemary - thanks for the info about the LLMD costs. That helps in my decision making. I know I just need to see him and deal with the cost.
It also helps to know that most people are on disability. I have company paid if I need to use it so I'm not completely worried about how long SSD will take to get, but if I need it it's nice to know that it is available.
Thanks - all fo this info is so helpful. I'll see him and then see what he thinks about having my children tested and treated.
Linda
Also to Lymetoo. Thanks for the info re getting reimbursed. I do know that my ins co says they will reimburse 70% of what they feel is fair and then I'm responsible for the rest. Do you usually lay it out or do they file and then you pay the difference?
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,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
oops! 
Printer-friendly view of this topic