posted
We are currently searching for a LLMD. I received several referrals from the Lyme Disease Association. The doctors' names that I received are all members of the ILADS but there is no other information given. Is being a member of ILADS enough for us to trust a doctor?
Posts: 7 | From fort myers, fl | Registered: Oct 2013
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
No. Not at all. ILADS has found out that they need to make a test or something similar to be sure that the names they are giving out are doctors who really understand lyme disease.
However, as of yet, they have not designed such a test.
I do NOT recommend getting names this way. Only get personal recommendations. Get lots of them.
People have written to me and posted about their terrible experiences going to docs they got through ILADS, etc. And, then after I sent them to a good lyme doctor, they complained to the lyme doctor about the experience.
That is when one of the top lyme docs on the east coast said that ILADS now recognizes the problem and is trying to figure out a solution.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
I was just recently diagnosed with Lyme with very positive Igenex results.
I had been seeing a LLMD that is part of ILADS. I had been seeing him for 4 months trying to figure out what was wrong with me.
He told me several times that I didn't have Lyme and he did not suspect it. He tested me through Quest which was negative. Once those results came back he never sent me for further testing.
I decided on my own to go through Igenex, and of course the results came back positive.
I would have hoped an ILADS LLMD could have caught this based on everything I told him, but he completely missed it.
So...I guess it's not enough! Needless to say, I've found a new doctor!
Posts: 62 | From Chicago, IL | Registered: May 2014
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There can be a huge difference in being on ILADS list, even attending a conference or two and being
ILADS "educated" -- as in very familiar with the research of all its conference presenters / researchers over the years, especially recent years.
And, beyond being "familiar" it's vital to take steps beyond that to become truly ILADS "educated" -- part could be taking their physician training course but even then, that might not be able to tell you they are on the same page, up to speed, etc.
And even if ILADS "educated" -- which I think is absolutely essential -- they have to have a good track record and keep up with current research not just about the infections but also about the support methods.
And, even of the top notch ILADS "educated" LLMDs, there can be a wide range in how they treat.
Now this is important that they have the freedom to use their intelligence & experience in the ways that work best for them and their patients.
Yet that freedom can also go the other way. Some have gotten their names on the ILADS list but don't really fit. Some may have been up to speed at one time but then fell away for various reasons.
Word of mouth with all the area lyme support groups within even a several hundred mile radius can be of enormous help in determining just which doctor is not just a true LLMD but which one has the skill and ability to work with your specific case.
I do wish that ILADS could have some kind of qualifying system so we could have a better way of sorting out a true LLMD but not sure how in the world to really make that work. Yet, I can see that a certain degree of freedom in methods is also important beyond the being ILADS "educated"
I've used my first appointment to actually interview a doctor, sadly, he was not at all really ILADS "educated" and wouldn't answer many questions of mine. Not a really LLMD, it turned out. I wasted $400. just to find that out but saved more in the long run by not returning.
I had no other detail to go on but when one can find out more from others, that's the way to explore.
Ask the doctor's office manager if they have time to talk for a couple minutes (or if they can tell you when they will have time). Ask:
if he / she has written anything - articles, books (even if not on lyme, this will give you an insight) . . . and who he / she admires among the lyme researchers or treating doctors. Who taught them about lyme? About other TBDs?
Ask if they've attended any ILADS conferences? If so, which presenter might be most interesting to their way of working?
If you are all new to lyme, find someone very seasoned (lyme support leaders) and run those names past them. -
[ 06-07-2014, 07:22 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There could be a doctor who may not be a member of ILADS who would be good, though, IF they are (in essence) truly ILADS "educated" in that range & scope of knowledge & research -- and the issues involved on all levels at every turn (so many turns to all this).
It's the knowledge base - and the ability to treat at thoroughly & specifically as needed that matters. They won't find that with the IDSA. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Wow great question and discussion thanks people, it never crossed my mind, glad to know now
Posts: 22 | From West Warwick, RI | Registered: Dec 2012
| IP: Logged |
posted
I had a problem so have others I've known who went to this particular doctor who was very high up on ilads memberships .
Was my first visit with and when test came back negative left me hanging with no course or action on what to do next unless I paid another $ 400.00 I'm not going to bash her here , but do so at support group.
Maybe was under review board or just did not care.
I do and I did go to a non ilads doctor who treated me and was very educated in the medical community.
He was a walking encyclopedia of knowledge with medication , protocols , diseases , supplements and especially lyme and confections .
Was very compassionate , listened etc . What was unfortunate or a blessing depending on how you look at it .
Was also sick , had lyme and other tick borne illness who really understood what a patient or I should say a person went or go's through , because you were a name . He is retired now.
Posts: 238 | From Where | Registered: Aug 2012
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- One can have what it takes to be ILADS "educated" and LL - and not be an ILADS member. To me, it means knowing as much as humanely possible to know about lyme / TBD at this point in time . . . to know what other LL doctors and researchers are doing, what's working, what it not working, etc.
For those new to lyme . . . I always like to post the ILADS' website for educational reasons. It's not a place though to exactly FIND a doctor, though.
While I always suggest a doctor be ILADS "educated" - that is for a start, to be sure they are connected, have been to various ILADS conferences, exposed to researchers among the group, other doctors, etc.
There is no "certification" or official way to determine just how lyme literate or ILADS "educated" / "minded" any one doctor may be. And ILADS' doctors have a broad range.
But there are some doctors who will put their own name in with ILADS with zero justification to support such a move. Some are not at all ILADS "educated" - so be aware.
TF just posted this at another thread in response to someone in need of a LLMD. Excellent to keep in mind:
TF posted:
Just want to warn you that ILADS knows nothing about the doctors whose names they give out. They will give out the name of any doctor who wants his or her name given out. It doesn't mean the doctor is good or even that the doctor believes in chronic lyme or believes that a person can have lyme and have a negative lyme test. It is simply a referral service operated by ILADS. They treat all doctors equally.
So, this is NOT a good way to get a doctor's name. Many have gotten lousy doctors this way and come on this board and complained about it. I have heard that ILADS is now aware of the problem, but they don't know what to do about it.
So, you need to get input from other lyme patients and lyme support groups about any doctor who is recommended by ILADS. You can post in Seeking a Doctor forum using just the first letter of the doc's last name and the state. Or, you can call all the lyme support groups near you. See Support Groups on the left side of the page.
When you contact the support groups, ask them what doctors they recommend and who is having success curing patients.
You must do a lot of research before going to a lyme doctor. No sense learning the hard way. Don't want you to waste your time and money. New folks often don't know that they need to do a lot of work up front before picking their first lyme doctor. So, they often pick a lousy first lyme doctor.
We can help you avoid such a mistake.
(end TF's post) -
[ 12-15-2014, 03:00 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
You can ask for referrals here, or from local support groups, or from your online state group.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
No, just because a doctor says he/she are members of ILADS does not mean they are good LLMDs. The comments written on this thread are invaluable about the subject.
You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
There was one in Tampa, but he retired. They are far and few between, unfortunately. You need to go where they are.
Also, most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The initial post of this thread is from last May.
I was just building upon it as a set for future use since it's such a frequently asked question. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The intent was to add some addition notes so that this thread could be used as a fuller explanation when the question is asked again, and it will be.
Keep in mind, the reminder for anyone posting specific replies for the first post, that (as LymeToo points out) they won't likely see it.
The additional notes will be helpful to others, though with this common puzzle. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
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!
Printer-friendly view of this topic