posted
I just recently posted this under "Seeking Doctors" and decided to post it here as well, after reading other threads that more people read here, so I am giving it a shot.
This Dr. L is in Lutherville, MD, which I assume must be close to the Baltimore area. I was encouraged to see her by another lymie of a local LD support group, who highly recommends anyone from my area of MD to see her.
I have yet to see Dr. L, but I hear that she is going to be doing a presentation for an LD support group up at Kennett Square, PA on Wed, March 15th, which I look forward to attending and learning more from her.
I have recently been to see my family doc about becoming more aggressive on treating my lyme disease, as well as any possibility of referring me to a LLMD, which I showed him a business card of Dr. L & asked if he'd heard of her, which he hadn't. He said he would check it out, as well as check out for other LLMD in the area.
My family doc also warned me to be careful about seeing any LLMD that others may mention, as some may be quacks who only see you for the $$. He went on to mention that he had another lyme client a year or two ago, who decided to see a doc up in NJ that claimed to be an LLMD, as referred by a friend.
Unfortunately, this lyme client had to pay costly fees out of his own pockets for all the visits, medical expenses and transportation. Now, he has gone back to being treated by the same family doc and keep up treatments under him to now.
Hmmm...what does it take to become an LLMD, I wonder?? Even though my family doc is not a lyme literate, but he seemed quite open to finding out more and treat accordingly.
I'd also like to learn more about Dr. L of Lutherville, MD if anyone knows more about her.
Posts: 90 | From Maryland | Registered: Jan 2006
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posted
My LLMD is a family physician. Some are ID drs, some are internists, etc. They can have any background as long as they are MD's!!
Some are Lyme specialists simply by choice. They don't have any extra training except what they learn from international and national conferences on tick borne illnesses.
My LLMD began to treat Lyme because his wife had it. Most LLMD's are very caring and want to help those who have basically been abandoned by the medical profession.
And yes, there are a few bad apples, as in everything else in life. Just make sure whatever dr you choose has come with SEVERAL recommendations from other Lyme patients of this MD.
Good luck with your choice. I hope you will be able to recover. It's great that your dr is so receptive. Hats off to him!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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I can't speak first hand...only second hand of 3 families in my support group in York PA that see her....All have nothing but the very best to say about her.
I'm sure you'll hear from a few more via this msg.
If not, you can email me and I can put you in direct contact with these patients and you can get specifics.
I wish I could attend the mtg in Kennett Square to hear her personally, but will miss it...
Good Luck!!!
Gail
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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I have had a few negitive issues at the office, but they are being worked out. Most importatnly I have been improving.
I think they stopped filing insurance.
I always pay up front and you must see her once a month. But it has been worth it.
She told me about the free conference at the community college on the Eastern Shore, March 25.
Maybe if other options fail you could ask hearing ASL student to go with you for translation practice, or school credit or something like that. Just a thought... e.
Posts: 18 | From mid-atlantic | Registered: Jan 2006
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Moose-
some of the local llmds attend that support meeting on occation. I'm planing on attending just to meet Dr L too.
posted
Wow! I nearly forgot that I posted this here before. I have a hard time keeping up regularly and remembering what I have done or haven't done so far. I guess many of you may feel the same way too, smile.
Esthermax- thanks for your support and suggestion on the Free Symposium occurring at Chesapeake College on March 25th. I have contacted the people in charge of the conference to see about the possibility of having an ASL interpreter there. So far, they aren't cooperating with the idea yet and suggesting giving me a video from the conference instead.
Gee whiz, I don't have a problem getting there! My problem is being able to understand what is being SAID and how am I supposed to get that from a video either??
Not only do I have to deal with having lyme, but I also have to deal with many people who do not understand deafness either. I've been deaf all my life and it can be a real pain in the rear when trying to overcome barriers.
I teach ASL classes at a local community college and none of my ASL students are qualified enough to interpret for me. They're only on the beginning levels and they have a long way to go yet, especially when interpreting for this type of conference with a lot medical terminology and so forth.
I do not know of any other ASL students or any others taking interpreter training courses who needs a practicum experience, so I am out of luck there.
MLKEEN - I hope to see you at the Support group up at Kennett Square. I may NOT be able to go, as so far I am still unable to find ANY interpreters willing to interpret for this event. I don't know any interpreters who are willing to interpret without pay. If I had a steady cash flow, I'd pay an interpreter if I could, but I don't have that kind of luck either.
I will be going back to see my PCP again this Wed. for a follow-up visit and see what he has learned about Dr. L and about any other LLMD in the area. I doubt that he will find out much, but am trying to keep an open mind about this and give him the chance, then see where we can go from there.
One way or another, I hardly feel much better than I did when I last saw my PCP 3 weeks ago. Actually, I am very discouraged at this time by all the barriers I am facing and finding hard to overcome because my deafness prevents me from having as much free access on gaining info. & support as I would like to get.
Either way, I am still waiting, hoping and praying that something good will come up in which I can break through another barrier or to find good news on steering myself on the right path towards recovery.
Posts: 90 | From Maryland | Registered: Jan 2006
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I am involved with a community college in Maryland also.
Would you like me to ask about possible ASL student/translator that might want to go to a Lyme conference and try translating just for the experience (read for free)?
Its a long shot but you never know...
e.
Posts: 18 | From mid-atlantic | Registered: Jan 2006
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posted
Hey Esthermax, Gee, that would be helpful if you can check that out. It doesn't hurt to try and I'd appreciate it. So if it's not too much trouble for you to ask around, please do!!
Thanks!
Posts: 90 | From Maryland | Registered: Jan 2006
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posted
Since the topic of this thread regards LLMD in Maryland, something else just popped up yesterday that I want to share with you.
I just been to see my PCP for a follow-up along with a bunch more questions, including his quest for an LLMD to refer me to. He said he was unable to locate one in the area, and suggested sending me to John Hopkins to see a lyme specialist there.
He suggested I go there first because my insurance said they would cover it. I don't know much about LLMD at John Hopkins Hospital/University, but I do know that they do some research on lyme.
I am trying to be hopeful and positive that this will lead me closer to getting the appropriate treatment for my case and getting a bunch of my questions answered, since each of us are individuals and need to be treated differently.
I wonder if any of you have ever been to John Hopkins to see a lyme specialist there?? If so, how does it work out?
Posts: 90 | From Maryland | Registered: Jan 2006
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posted
m, I went to Johns Hopkins before dx to see a well known and "respected" Rhuematologist. He cut me off when explaining my s/s and asked what I felt to be leading questions.
He then announced " I know what you have." End of story... Fibromyalgia. I asked about Lyme, but since I had had 3 negitive tests he thought not.
But he is not known to be a Lyme specialist. I just did not have a good experience there. I have not heard of any one there being well versed on LD.
I would check out Dr. L before I tried JH. But things change, as always. Good luck. e.
Posts: 18 | From mid-atlantic | Registered: Jan 2006
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
We see the MD llmd. No complaints.
I also have heard that Johns Hopkins is not the place to go. I do remember finding the name of a lyme physician there some years ago but I think this group would have heard if there was a good practitioner.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
I have heard nice things about the Md. llmd but have never met her..She has spoken at our support group.
As for Hopkins...Forget it, grab your money and run...NOw, I have read that their researchers know a lot about lyme in mice and even know it can be chronic..So take your mice and you may have success.
We went for an evaluation for our daughter..It was to help figure out what was going on and to adjust her meds for psych issues.. They refused to accept any notion of lyme causing any of it..Especially with only equiv. tests.
Insurance was to pay but later only paid a small portion of the bill.
I did hear someone say that they got some help from a Hopkins Dr at their Green Spring Station offices, but I do not know the name of the Dr so it is definitely a crap shoot otherwise..
Posts: 2360 | From SE PA | Registered: Mar 2004
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I really appreciate your feedback regarding John's Hopkins and now have second thoughts about going there at all.
I also mentioned this to the local LD Support Group coordinator who also didn't greatly encourage going there either, due to their controversial approaches and not really dealing with it, no matter how many other tests have already been taken to exclude other possible causes.
No one from my doc's office has called me yet to give me an appt to JH. So I am hoping to learn more from Dr. L when I attend the meeting up at Kennett Square tomorrow evening, in which I will hopefully find a way to get around this stumbling block and approach my PCP about this.
I just wish that I didn't have to do all the work of researching, checking around, teaching my doc and multitudes of family and friends about lyme, fighting for the best approach and trying to be a strong advocate through it all.
I could really use more of this energy toward resting and focusing on getting well. Ah, you all know this already about trying to beat the odds, and I am thankful to be a part of this board which I can do within my own home.
Thanks again to you all!
Posts: 90 | From Maryland | Registered: Jan 2006
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posted
As usual, after reading your comments regarding John's Hopkins, I got to thinking about what other alternatives there are out there.
I decided to call the MD llmd to check out their procedures & policies. Apparently, they cannot accept my insurance & I would have to pay up front for a visit.
So I asked how much an intake visit would cost? She said about $600-700, whooooaaaa! How is anyone supposed to be able to pay that much???
I lost my job due to my illness and my husband can't even manage the monthly bills on his own without some financial help from his parents.
I am also going to have to file for bankruptcy for bills I had been paying on before I got sick 3 years ago, and been unable to pay since then.
I keep getting harassed by creditor calls, who I can't even talk to on the phone 'cuz I am deaf and they don't call thru a tty or relay service.
Yet they keep calling and calling and I can't rest in peace without having to get up and check the caller ID, in case it's someone from the school calling about my children or something.
I just went to see a Legal Aide and was adviced that I may not have to file for bankruptcy but to send out "judgment proof notification letters" to all the creditors that I am unable to pay to. I am not sure how this works, but that is another new thing I am forced to learn about, all because I got Lyme Disease.
Anyway, I am still not sure how to go about getting myself to see a LLMD yet. I guess nothing would beat having a fat bank account, then I can go see the right doctors and get the proper treatment.
How do any of you guys handle the financial issues when needing to see an LLMD who doesn't accept health insurance??
Posts: 90 | From Maryland | Registered: Jan 2006
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posted
I see Dr L and have been since I was 1st bit (6/05). I am about 90% better and overall feel 200% better than I have in many years. I visit from out of state.
JHU - My experience with JH is not lyme related. I had a brain anuerysm surgery in 1992. When I woke up they told me I didn't have an anuerysm after all. I was really mad.
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
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posted
I had the chance to hear Dr. L's presentation at a L.D. Support Group meeting last night. I learned a bit from her, as well as hearing again a lot of things I've picked up from here on the board.
Just a half hour before I left for this meeting, my PCP called me and said that they've finally gotten an appt. for me to see a Dr. S at John's Hopkins on March 24th. The receptionist from my dr's office says that Dr. S is a lyme specialist.
But I have my doubts and concerns about this as I approached Dr. L after the meeting, who also reported that most lyme patients have not had good outcomes from going to John's Hopkins, and she's never heard of Dr. S either.
Is there a place where I can check out to learn more about this dr? Seems like I remember reading somewhere that there is a site where you can see a list of MDs who are specialized in lyme disease.
I want to check out this doc quickly, so that I can decide for myself if this would be worth my time to go or not. I don't have a lot of time between now and the appt. so I need to get this information as soon as possible.
Thanx!
Posts: 90 | From Maryland | Registered: Jan 2006
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