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1st LLMD Appt.!!! Finally!

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Posted 3/10/2015 3:01 AM (GMT 0)
I have been waiting on a list since October but suddenly I am so nervous now that the actual appointment is scheduled... Can any one help with what to expect? Information I need to have records of? Anything I need to bring? I am a big ninny-baby even at 45... Is there aanything I can expect to be scary or unnerving? I am excited to finally be going but reality comes in to play here too... confused
Posted 3/10/2015 3:14 AM (GMT 0)
Hi Cajun,

Yes the first appointment can be daunting, but look at it as the first step to taking charge of your health.

This is how i prepared, i brought copies of all the testing I had done the year previous, including blood tests, MRI's, cat scans, Igenex, neurologist findings. Also, make a symptom list, if you havn't already, in chronological order of when they started and what you were feeling.

Thats really all you need

Good luck and let us know how it goes!
Posted 3/10/2015 12:26 PM (GMT 0)
I found my first LLMD immensely reassuring. It was so good to talk to someone who did not question the reality and number of my symptoms, who was familiar with my disease and was confident about how to begin treatment.

It felt very good to be getting started -- like the first steps of a very important journey.

If your LLMD is like mine, he or she will test to rule out other diseases that could be causing your symptoms. Try not freak out about all of that, it is just precautionary.

Like Wondering suggests above, writing a symptom list is a very good way to organize your memory: Your LLMD will probably have their own forms, but it will help you bring it all to mind under pressure. You can even label each symptom as to whether they are seldom, often, or acute symptoms.

Good luck!
Posted 3/10/2015 1:28 PM (GMT 0)
My first appointment was just talking about my health history in detail. As with most of us, it is a long and complicated story. It was reassuring to finally have a dr. who listens!
Posted 3/10/2015 2:44 PM (GMT 0)
We just happened to switch to a doctor who was Lyme literate before we knew we had Lyme disease, so that began my journey into Lyme disease. I knew nothing about it before then.

Just try to relax, knowing you're going to a doctor who understands and will get you started on treatments. I hope it will go well.
Posted 3/10/2015 8:28 PM (GMT 0)
It'll be a long appt - and exhausting most likely. So if you can, do be sure to have someone with you that can drive you home.

Take along water, and a snack - or be prepared to get something to eat along the way, especially if you have much driving to do.

Take a recorder (your phone likely has one) and take notes. If you have someone that can be in the room with you, that's even better as there will be a TON of information exchanged at this appt, and the more ears to hear it the better, as you will be thinking of your response more than trying to remember every word that the doc says.

If you have had any positive tests, take those copies. If you have a picture of a Bull's eye rash, take that as well. I would write down a short time line of when what happened. You can fill in whatever details as needed, but that gives you something to work from.

If you don't have any positive tests, do be prepared for the doc to want to draw blood to send off for testing.

That's all I can think of for now. When is your appt?
Posted 3/11/2015 1:58 AM (GMT 0)
My appointment is March 31st. I am so thankful it was able to be scheduled during Spring break as I have no days available to take off.

I do have a full list of symptoms but I do not know that I can put them in chronological order.

I think I am good in every other aspect. Except the nerves.
Posted 3/11/2015 2:28 AM (GMT 0)
Sounds like your good to go then! Try to not let yourself get to nervous before you even get there though. It won't help you at all.

Good luck and be sure to let us know how things went when you are able to! Until then, keep learning!
Posted 3/11/2015 3:25 PM (GMT 0)
Best of luck to you! You're going to be great!

You've gotten a lot of great advice from other members. Something my LLMD said was very helpful for him was that I wrote up a brief timeline of the onset of illness to present day. (I had about 12 years to explain.) I included different medication protocols and how I felt on them in the timeline.

Please keep us posted!
Posted 3/11/2015 5:28 PM (GMT 0)
But if you can't write up a timeline like Bluebyyou suggests, don't worry about it - there are plenty that can't. I couldn't - but my illness has stretched across my entire life.
Posted 3/11/2015 8:59 PM (GMT 0)
If it was me I would just go to your primary care physician and ask for three tests.

1. ospA nano-trap antigen test by GMU / Ceres Nano coming out later this year.
2. Dr. Lee from Milford Hospital's low temperature PCR DNA Borrelia Genus test
3. Cultured PCR DNA test Bartonella Genus from Galaxy labs.

Try to tell your doctor you don't expect him to treat you, but you just want the tests for investigation.

I wouldn't mess with LLMD's and antibody tests and igenx anymore. I went through all that. It didn't get me anywhere but create more unanswered questions. I developed weird water dripping raindrop, burning and stinging sensations from the antibiotics. I still have them 5 years later and it didn't fix my chronic myofascial pain syndrome and tinnitus problems which is why I tried treatment with a positive igenx test in the first place.

I was very skeptical of the LLMD as they call themselves, but I thought I'd let the antibiotics be the test.

The LLMD's will tell you there is no cure and you just keep taking antibiotics for a long time or forever.
Posted 3/11/2015 9:40 PM (GMT 0)
I'm really sorry that you had such a bad experience with a doc that was claiming to be a LLMD - because LLMD's that are trained by ILADS aren't that way - and if they are, then please let one of the Mods or myself know so that we can stop recommending them.

And it would be greatly appreciated if you don't tell people to avoid LLMD's - being cautious is one thing, and it's always an option to change doctors when you find out one is not good, but they are the only ones that are properly trained to help us through this.
Posted 3/12/2015 1:03 AM (GMT 0)
As the fifth one in my family to test positive, one only a carrier and the other three-all treated at least one year and all no longer on antibiotics and feeling well... I am looking forward to my appointment with the LLMD verses the ignoramouses that would tell me I have no idea what those numbers mean but you do not have lyme and then send me home without asking me about a single symptom.

I second Traveler's apology that your experience was evidently so very negative. I have to wonder if that person was actually an LLMD or at least actually an educated one. I wish you could have had a much more productive experience.
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