posted
I finally have an appointment with an LLMD in Tampa on Monday, after 3 yrs of not knowing what the cause of my many symptoms were, so I have not been treated. (positive iGeneX testing) I have made a list of symptoms, both current and previous, as they "wax and wane", a list of questions and have ALL of my medical records. (numerous MDs, a trip to Johns Hopkins and Mayo-BTW none of them picked up on Lyme)
Does anyone have any other suggestions, what to expect, etc? I am so used to going to MDs who have "no clue", have been told SO many times that everything is negative and "we have no idea" , so I am a bit anxious and am cautiously optimistic!! I have read numerous articles and the treatment guidelines to better educate myself....any other suggestions? Or anyone whom has "been there"? Thank you in advance......
Posts: 7 | From Satellite Beach, FL | Registered: Nov 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You already have a positive test, you have classic symptoms. There will be no need to plead with this doctor IF they are a true ILADS educated LLMD.
Take your test. The lyme test on top, for them to see first.
Your symptom list.
Type out your questions and just hand them the page. This will save a LOT of time that will be best spent with their guiding the appointment. You are paying for their thoughts.
It's okay to voice some frustration with what's going on but remember that you hope to get good information out of the doctor so listen up to what the doctor will be talking about.
Take notes, or record but I would not take anyone with you into the room.
the doctor needs to see YOU, how YOU function. Anyone else in there and it's a whole different dynamic. Now, after the first part, maybe then a friend could come in and take notes but i would not suggest it. You need to first establish a professional relationship with just you and the doctor.
My suggestions for a start to your questions:
Q. #1. How do they address the cyst form of lyme. And When, how soon into treatment?
Q. #2 Are they an ILADS member . . . or have they attended some ILADS conferences?
Q. #3. Of the ILADS doctors who have a book out, which one might they recommend.
Q. #4. Do they follow the basic Burrascano guidelines -- with individual variations?
Q #5. Can they assess other TBD (tick-borne disease) fairly soon? And will they also treat other TBD?
Q. #6. What kind of time frame, just a rough idea?
Q. #7. Will they also suggest liver support and adrenal support supplements?
Q. # 8. Which form of magnesium do they think is best?
But, it may be more than just lyme, too, so just present yourself honestly . . . be yourself as you are naturally . . . in walking, talking, etc. They need to see how you move in space, etc. No need to hide ANYTHING or emphasize anything, either. You can relax and just be yourself.
This way, they can assess what ALL is going on. Let them do most of the talking, though, so you can assess THEIR knowledge, skill and any red flags in case they may not be ILADS educated.
a link to come about how to have a good first appt. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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What Makes a Lyme Doc Top Notch (TF shares this) -
[ 01-18-2014, 04:04 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
No worries. A good lyme doc has heard it all before. Going to see a lyme doc is a breath of fresh air compared to every other doc. They know it's real and not in your head. :)
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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GretaM
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posted
I agree with Keebler and Catgirl.
Don't put on any positive or falsly energetic fronts.
My mistake over and over is being positive in the appointment, and good humoured about my symptoms.
Then collapsing in the car afterwards.
Just be how you would be if you were relating your symptoms to a trusted, compassionate loved one.
And be honest with all your answers even if you think you may sound cuckoo.
Just an FYI: if at any point this doc or any doc from this point forward asks you to take a computer test to assess your abilities (probably won't, but just in case), politely decline the test.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Keebler
Honored Contributor (25K+ posts)
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posted
- If you need certain accommodations, tell the office manager. Call beforehand if you can.
Such as: if you need a quieter room. Away from busy-ness, machine noises, etc.
need to lie down while waiting. No overhead lights (just natural from a window)
or able to close mini blinds or turn another direction once you get there if it's hard on your eyes.
take what you need to stay warm if the room is cold or too bright. A visor, a scarf. Your coat.
Water. A small snack if you might have a drop in blood sugar during a long appt.
Locate the rest room.
Whatever you need to be able to make this appointment WORK for you, at all times.
You might even just hand him the pages to look over and if you need to lie back and close your eyes, tell him to let you know when he's ready.
Take every advantage to rest so that you can be as present for the segments of time that matter most. -
[ 01-18-2014, 04:08 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- The tests . . . make sure they are all copies he can keep. Same with your question list.
You might make a copy of that for yourself, with space to mark his replies for you to remember later. Or just an + for "okay, he's KNOWS all this"
It's not that you want all the specific answers, you just need to know that he KNOWS all the specific answers, in an ILADS minded sort of way . . . and that he will take decisive action, rotating & combining, for as long as it takes.
You want to know how many others with difficult cases have succeeded with his guidance.
You will be doing all the work, but you need to know that he has the skill to outline a plan that has good chance if you do your part. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Most LLMDs and LL NDs strongly suggest their patients are gluten-free. It can really help maximum your chances of success.
Some detail on food choices, that if you know this before your appt., you can let him know so he know YOU will be on the right page in that dept.
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I suggest:
Stop reading by tonight. I'd stay off computer after tonight (or for no more than a short time Sunday early). The computer is actually terrible for our brains in some ways.
Get all your notes in order, your clothes, your shoes, etc. Think of the snack you will take and your driving route . . . parks along the way to pull over and rest, etc.
Locate a park or a nice attraction (art gallery, etc.) for AFTER the appt. IF you might have some energy. I think this is very important for you to go somewhere in a nice surrounding, maybe a quiet restaurant with flavorful healthy food . . . to just absorb it all . . . and celebrate that you are making an important transition.
So much about this discovery process, extreme learning and going to doctors can be gruelling.
Make room for beauty at every juncture.
Take all of Sunday "off" and just be present with yourself, so to speak. Go spend some time in - or at least observing nature, kids having fun, etc.
REST. REST. REST. Be with family / a friend. Enjoy the beauty of others & nature.
You are just going on Monday to "show who you are at this point in time." Breathe and Be. No other requirements. Just breathe and be. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I want to give a different perspective to Keebler's advice about not bringing anyone with you. Sometimes, it can be important to do so.
Early in my own treatment, I processed slowly, had no memory, and my notes would trail off in mid sentence. Having a non intrusive friend with me helped when I needed to refer to something my doc had said.
I just accompanied a colleague who has been down the usual long road to one of my former docs. She was giving inaccurate responses to his questions because, I think, she had lost perspective.
She was sent away with a prescription for a PICC among other things. She called me repeatedly over the next two days to ask questions and clarify.
It was helpful to me to take someone non-intrusive and I think the same for her.
Posts: 520 | From Maryland | Registered: Jan 2007
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Catgirl
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posted
I forgot about this (agree with Joysie). So much is covered during the first apt. It was so helpful for me to bring someone. I couldn't remember anything for the first year. My husband still comes with me and fills in the blanks for me later on. It's hard for me to travel and fill my specialist in on everything that has been going on, as well as retain everything he says (getting better though).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Thank you for all the GREAT advice!! He is an ILADS doc and has spoken at conferences, so I am confident there. I am bringing my husband, or I should say he is bringing me, who is an ENT and skeptical, so I think it is important for him to hear and understand. Although he is supportive, he is not "sold" that Lyme is the answer, but doesn't have a good alternative explanation. Here's hoping for the best, fingers crossed!!
Posts: 7 | From Satellite Beach, FL | Registered: Nov 2013
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Keebler
Honored Contributor (25K+ posts)
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posted
- joysie makes good points about the need to sometimes have a good note-taker.
I guess I just could never handle the added sensory input -- tried it once and the reaction of my friend went all wrong when I asked her to tell him how I really am because my speech would often just get stuck.
This was not with a LLMD, though, but a regular neurologist who was so against all my symptoms as he'd never seen anyone so bad (thought I was faking). My friend's empathy for me made it look to him like I was soliciting sympathy or that I told her what to say.
Still, there are times, and in the world I'm sure there are some just-the-right, well adjusted, non-judgmental and LL friends who can do this when needed.
And it is true that good "reporters" can often take better notes than most of us when we our senses are overwhelmed by someone just blinking or swallowing.
As for spouses, in a good marriage, this can be of help but it may not work for all couples. You want to feel comfortable and the information has to be conveyed accurately to the LLMD -- and then you need to receive instructions or get the gist of his or her thoughts. However that can happen.
But you don't want to be communicating with two people in the room. The conversation needs to be between the doctor and yourself.
I do know that it usually is best if someone else drives if it's very far.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Personally I say take your hubby into the appointment with you. If the doc wants to speak to either of you alone or either of you want to speak to the doc alone then just ask.
I went to every single appointment with hubby during his 12 year illness.
Some of the worst experiences he had were in a couple of ER's that would not let the spouse into the room until they had stabilized the patient. That was how hubby ended up getting 8 mg of IV Ativan in 1 1/2 hours and almost didn't wake up the next morning.
In your situation I would be upfront with the doc and let them know that your spouse is skeptical. You and your spouse and the doc all need to be a team to have the best outcome.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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GretaM
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posted
How did it go? Isn't is nice to see an LL?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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