Hey Lymies......need LLD suggestions

[theoldgreymare]

To make a very long story short, my LLD is going to retire unexpectedly at the end of this month. Lots of BS with insurance companies and the AMA have taken it’s toll on the poor man. We are devastated by the news…such a great, caring Dr. who really went out on a limb to open a practice that focuses on tick borne illnesses.

I need recommendations for a LLD (does not have to be infectious disease specialist). We live in SE VA. Dr. Jemsek is out as he will not take insurance and with two kids and a husband who also have Lyme and multiple co-infections I need someone who actually takes insurance so at least meds will be covered for me and DH (kids will most likely be seeing Dr. Jones in CT who does NOT take insurance). Do any infectious disease specialists that focus on LD take insurance anymore? Any recommendations on LLD’s or ID specialists are appreciated.

[diKecnadnuS]

I have a fantastic infectious disease specialist that I absolutely adore in Northern Virginia. No clue if he is Lyme literate though. His name is Dr. Richard Sall and he’s in Fairfax, VA. So it would be a bit of a trek for you. I see him for my Toxoplasmosis, and they’re great about taking a variety of insurances.

[Dad_Said_Not_To]

I wouldn’t necessarily rule out Jemsek, particularly if you have a hard time finding someone else. An acquaintance sees him and gets detailed paperwork from his office so she can submit it to her insurance company for reimbursement.

[DressageGeek_Ribbon]

contact whicker on the board - while she doesn’t have Lyme, she knows a ton of people who do - since she’s in VA (central). So she could at least put you in touch with some people who have been there.

[theoldgreymare]

[QUOTE=Dad Said Not To;5113990]
I wouldn’t necessarily rule out Jemsek, particularly if you have a hard time finding someone else. An acquaintance sees him and gets detailed paperwork from his office so she can submit it to her insurance company for reimbursement.[/QUOTE]

I am at the point with the insurance co. that everything is a battle when it comes to Lyme, not sure how they would do with reimbursements…worth keeping in the back of my head though. I do have the name of someone in Baltimore now which is only about a four and a half hour drive for me, was just hoping for something a bit closer as long car rides are killers at times.

Thanks all!

[Obi]

I see Dr. Jemsek and he has referred me to both pain management dr’s and therapists that DO accept my insurance. Plus, my insurance covers ALL of the meds he presecribes (which is worth its weight in gold imo). Yes, his office visits can be a bit steep (I don’t even submit mine to my insurance co. as it just goes toward my deductable). But the key in my book is the quality of treatment by a Doctor who understands the disease and knows how to treat it. Living in the south, I cannot even find a primary care doctor that will touch me if they know I am going to a LLMD. I go to urgent care fro all of my ‘basic needs’ med issues.
Please becareful when you shop around as in the South, it is especially difficult to find a LLMD who will actually treat you. Trust me, I have been there!!! After Jemsek moved to DC I tried to find a doctor who would treat me and I got told I had a better chance of having AIDS or Syphilis than Lyme (although I lived 10 miles from Lyme CT when I was first exposed). I was told “I drank the kool aid” aka Jim Jones, and that I followed a ‘witch doctor’ who treated me for a disease that did not exhist.
It took me months to emotionally come back from these accusations from these doctors. If I were you, I would stick with Jemsek. Of call his office and ask for his patient advocate service which is now part of his team. They will assist you or offer options.
Lyme in the south is non-exhistance in many doctors eyes. Up north, it is running virtually out of control. PM me if you want to discuss further. Also try to go to webmd.com and join the Lyme section where you can post about finding a doctor as well as get support.

Dont give up but do not settle for a less experienced doctor!!!

Good Luck!

[LauraKY]

I use Dr. Singleton, but I understand he is planning to give up his practice and go into research. I think the insurance companies are running the good ones out of business.

There is a forum for lymies… www.lymenet.org. Some crazies (always) but if you ask for doctor referrals, someone will be able to help you.

I’ve been to Dr. Jemsek, then found Dr. Singleton. There’s also a woman in Baltimore, but I really did not like her. I think she was in it for the money.

[Obi]

Also check out www.mdjunction.com and join the Lyme group. They allow you to inquire about a LLMD once every 30 days. Also joing the forum and ask the same question. Many people in the Lyme group have been in your shoes and are very helpful in directing you to the right doctor. Good Luck!