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» LymeNet Flash » Questions and Discussion » General Support » Bad experience with New "LLMD"

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Author Topic: Bad experience with New "LLMD"
Wonko
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I guess the title says it all, but if you want to hear the longer version...

I was recommended, via this site, to a Dr. O. in MN. But the office suggested I see a new doctor at that practice to reduce the wait time.

To be clear, this story is NOT about a Dr. O in MN. It is another new doctor at the same practice that their receptionist told me had the same special interest in Lyme.

I should not have agreed to seeing this other doctor. I drove 6 hours to see this doctor. I instantly had a bad feeling, as this doctor was very rude to my (same sex) partner who was with me for support.

Back in the exam room, it was only moments before I was being offered antidepressants and being told that I have fibro, or possibly PCOS.

The doctor treated my history like a buffet, picking and choosing what to latch on to.

So, the doc ignored the red bumps all over my arms, my abnormal brain MRI and abnormal blood labs (which, among other things, show years of chronic inflammation) and instead focused on my being estranged from my parents. (Which came up when he asked about family history.)

I could go into more detail, but why bother? It was overall a deeply humiliating experience.

My history in brief is that I was dx-ed by an ILADS LLMD in fall '08. That was in Maryland. But I relocated to the Midwest in 2010 and it was getting to be too much of a strain (physically and schedule-wise, let alone financially) to travel that far several times a year. So I went to see this doc in MN today in hopes of finding help closer to my home in IA.

Before my first LLMD, I had a lot of doctors treat me poorly. So this isn't my first rodeo, so to speak, but I'm still hurt by the experience.

I'm fine that the dr. doesn't think I have Lyme, but how in a matter of moments can docs like this jump to conclusions about what is happening in the body (or mind) of another person?

On the bright side, since I had to drive this far in the first place, we planned a mini-vacation around this trip. So we're in a nice hotel and have some fun plans the next few days before driving back home.

Also on the bright side I was skeptical about this in the first place, so when I booked this appt. I also booked the first available appt with Dr. O. for later this summer. Though it will be difficult to return to the same office...

Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
momindeep
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It never ends, does it? Aren't there other LLMDs in our area...I know there are some here in WI.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005  |  IP: Logged | Report this post to a Moderator
Rumigirl
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OMG, that is really appalling. My sympathies. We have all been there with one or many drs, but from a supposed LLMD??!!

You should register a complaint about this both with the sec'y now and the real LLMD when you see him. I hope you didn't have to pay LLMD prices for this you know what! If so, I would complain about that. (Of course, since you are a new patient there, you may have to temper your complaints somewhat, so you don't become a "problem patient."

Get on the cancellation list of the real LLMD, and keep calling to see if there is a cancellation, so you don't have to wait so long.

If I were you, I'd wish that I could place some nice ticks on this guy's office chair! Arghh, that's sooo bad. That's such a looong way to have to travel for this.

Oh, and do write up a review of this "LLMD" for the people who are keeping lists on Lymenet. I know MetallicBlue has a list, others do, too. Warn others, so they don't go down the same rabbit hole.

Posts: 3747 | From around | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
linky123
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I went to a well-known llmd. He told my husband I was neurotic. His office staff was rude too.

He later apologized, but the damage was done.

Just because they are tagged as a llmd doesn't make them great.

The really good ones are few and far between.

--------------------
'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28

Posts: 2607 | From Hooterville | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
lpkayak
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im sorry this happened

i agree with linky...i have talked to ilads about it and they are working on the problem...but it is not easy to fix

i continue to say "good" llmd... but its hard for those who have not been around a llong time to understand

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Edessajarrue
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I see Dr. O in Minnesota - she is fabulous, compassionate and very thorough in her treatment of Lyme. She is primarily an antibiotic driven MD and you need to be on top of the natural remedies and detoxing, but she's open to listening and adding her expertise in this area if asked.

What I know about the new partner in her office is that he is just starting out (one day a week working as a lyme doctor) and is not ILADS trained at this time. I believe Dr. O said he was a Psychiatrist who has treated several Lyme patients in his practice.

If you see this doctor and have a bad experience, I would suggest letting Dr. O know of your experience. I would hate for Dr. O to get a bad rep. because of a new partner who doesn't know what he's doing.

Dr. O can't do anything if she isn't aware of any incompetencies of this new doctor.

-Edessa

Posts: 138 | From Eden Prairie, MN | Registered: Dec 2011  |  IP: Logged | Report this post to a Moderator
Lymetoo
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AWFUL!!!

YES, be sure to let Dr O know about this. They should NOT be scheduling Lyme patients with this other Dr.

There are LLMDs in IA and MO if you need them.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Muscle Car55
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Just like regular MDs, LLMDs are not all created equal. In fact I wouldn't even consider some of the LLMDs in my state as Lyme literate. But because there are so few doctors that treat the disease, a doctor that treats is tends to be considered a LLMD. But hey any treatment is better than none. If you do have a chance to see a better LLMD with a proven track record, I highly suggest changing.

Looking up through Google and see if anyone has written about your LLMD on forums and blogs is a good start. Of course you can't always trust everything you read on the Internet, but I tell you what, it's the number one tool to help fight Lyme disease. See if you can locate other members on forums within your state and see if they can give you insight on your LLMD.

Look your LLMD up on ratemds.com, read the reviews. Just like I said though you can't trust everything you read. Some Lyme patients leave negative reviews while others positive reviews. Many patients are in different stages of Lyme along with different coinfections, this can dictate on whether or not they had a good experience with their LLMD. For instance one LLMD might be good for a late stage Lyme disease patient because he hands out IVs, but his downfall is he cuts you off too soon because he doesn't believe in long-term treatment. Then you can change and see a LLMD that treats long-term. Then there's LLMDs that just use conventional medicine while others use both. LLMDs that treat aggressively and others that do not. All of this has to be taken into consideration and understood by the patient.

I honestly wish that there was one specific treatment and all LLMDs were created the same, but the truth is this is a very complicated disease.

But I highly recommend going with LLMD with a proven track record.

Posts: 267 | From MI | Registered: Oct 2011  |  IP: Logged | Report this post to a Moderator
Wonko
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Thanks for the replies. I certainly understand and appreciate that LLMD's are not inherently great. After all, "LLMD" is really just a label us patients use to identify doctors who may be more helpful to us.

I went into this knowing this was a new doctor and not an ILADS member. As I said, when I scheduled this appt I also scheduled one for Dr. O's soonest availability.

Since I was dx-ed years ago and have seen an LLMD for years, this experience was not nearly as bad as it would have been were this my first attempt to see an LLMD.

When I see Dr. O later this summer, I will tell about my experience with this other doctor. I'm glad to hear so many good things about Dr. O. here, as based on the other day I'm very discouraged to return to the practice. But I will keep my appt.

Others wrote or PM-ed about other doctors, and I appreciate that very much. I know Dr. O. is not the closest option for me. I picked Dr. O. based on great reviews and a match in approach and what works for me.

Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
linky123
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Maybe Dr. O can put you on a list to call if someone cancels - so you can get in a little sooner?

Hope it all goes well for you.

Take care.

--------------------
'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28

Posts: 2607 | From Hooterville | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
LymeXtu
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^
Posts: 448 | From minnesota | Registered: Feb 2010  |  IP: Logged | Report this post to a Moderator
randibear
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I had a horrible experience with one doctor here
In tx.' but when mentioned it to another doctor I got the ole "oh you must have misunderstood and he must have been having a bad day"' crap.

Sorry but doctors will stick together no matter what. Period.

I've learned not to complain cause they always treat you differently afterwards.

--------------------
do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
   

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