1. Arrive prepared and on time. Research ahead of time and educate yourself on possible treatment options. Be aware of your limited time. Write down your questions before each visit. Make a short list of the topics that you wish to cover. Prioritize your questions and agenda...keep it simple.
There will be MUCH discussed, so most of us can benefit by having a family member or friend attend with us as an extra set of ears. If this isn't possible, consider taking a tape recorder along.
2. Provide copies of your health records, including pictures of any unusual rashes that you have had and the results of any laboratory tests. Bring any important abstracts, medical papers, etc. which support your specific requests.
3. Always discuss your most important current and past symptoms. Have this typed out to leave with your doctor for your file. This is an important base for future comparison. Keep a weekly medical log in which to graph your symptom progress: types, amounts, and dates of all medications taken and any other pertinent health related issues and take this with you.
4. Ask for some basic parameters as far as what to expect. When will your test results be available? What are the signs that things are getting better, worse, or not changing? How long should you expect to stay on this protocol? Who should you contact should an emergency arise? Is the Doctor available for phone consultations? When should your next appointment be? Will he consult with your regular physician?
5. Be sure you have your prescriptions in hand and understand completely the recommended protocol. Make certain that you have all of your questions answered now while you have the doctor's attention.
6. Before you leave, be sure to sign for release of all office records for yourself and your regular physician. Although it is important to have a home based physician, do not be surprised if they leave your treatment for Tick Borne Diseases to your LLMD. It is however, important that you build a team effort approach to your healthcare early, so be certain that each physician is aware of any health issues.
7. Set up your next appointment now.
Please feel free to add any other advice!
[ 04-11-2010, 10:30 AM: Message edited by: Melanie Reber ]
Posted by Mary J (Member # 4234) on :
Dear Melanie, I've read your posts over the last 4 months with great interest (and those of the rest of you Lymies too!). You are so very thoughtful to post for new Lymies. I've gained so very much knowledge from you. A big warm hug for you!
Posted by Melanie Reber (Member # 3707) on :
Why thank you Mary J...that is very kind of you!
I try to remember what it was like when I first discovered this site last March- I was so frightened, confused, and overwhelmed by all of the information to be gleaned here.
Everyone was so supportive and helpful! This site and the warm and generous people who volunteer countless hours in order to help others literally saved my life back then.
So, the information that I post now was gained from all of the other wonderful people who came before me- the appreciation that you feel now and that I felt then is part of a continuum that I hope we all will contribute to in our own way.
------------------ C O L O R A D O * S U P P O R T * S Y S T E M [email protected]
Posted by Danser (Member # 7373) on :
Melanie, you wrote "Keep a weekly medical log in which to graph your symptom progress: types, amounts, and dates of all medications taken and any other pertinent health related issues and take this with you."
I had seen a really nice one that I could print but then my computer crashed and now I can't find it. Where can I find a good symptom log?
[This message has been edited by Danser (edited 03 June 2005).]
Posted by Melanie Reber (Member # 3707) on :
Posted by SickRI (Member # 16803) on :
Thank you so for this, excellent suggestions.
Posted by Barby (Member # 18348) on :
Thank you very much for posting this.
Posted by Tincup (Member # 5829) on :
up see daisy...
Posted by lostgurl (Member # 19293) on :
Melanie- hi, I am new and shouldn't just start a post like this but am looking for an LLMD in CO, Denver area for a friend who is relocating.. I will search around here but my list is really outdated and I know we don't post names.. This seems like a really nice place with great info and nice people.. We need that combination for sure! Thanks
Posted by mandy614 (Member # 16524) on :
Thanks Melanie!
Just printed this to go over for my next appt!
Best, mandy
Posted by Keebler (Member # 12673) on :
- I just saw this wonderful advice from BettyG to a new patient about their first LLMD appointment:
" . . . 1st one, you are there to listen to what they have to say, but the 2nd/followups; look out; questions galore to take with you since you know more then!! "
As we learn more and do our homework in advance, we may have more questions up front. But I cannot emphasize the importance of listening to the doctor.
You will want to hear in his or her own words about his experiences and his thoughts regarding your case. Listening skills are rarely taught and yet they are much more powerful than speech quite often.
Since, sometimes, patients do find themselves with doctors that are not really LLMDs, you can keep your ears perked for phrases that may indicate your doctor may not be fully educated in lyme or coinfections. Rather than charge in right away with your own agenda, it really helps to listen to the doctor's thoughts first.
It could save you a great deal of time - whether you need to find a better doctor - or if you then get an idea of how your doctor wants to proceed. Then you can pull out all your questions - or ask if there are books recommended to explain more. -
[ 04-11-2010, 02:46 PM: Message edited by: Keebler ]
Posted by Melanie Reber (Member # 3707) on :
Thanks so much Miss K for the added suggestions! I appreciate all of the continued input!
Lostgurl, I'm so sorry. I wasn't being notified on this older post, so I edited it to change that. If you are still looking for help in CO, please let me know. Posted by bettyg (Member # 6147) on :
melanie, i sent her colorado info!
yes, dek... has fantastic advise on everything she posts about!! Posted by Melanie Reber (Member # 3707) on :
Thanks Betty
Posted by IraGDB38 (Member # 20408) on :
Hi grettings to all. My name is Ira, I am wondering if anybody can help. I have been sick for over a year now, and I am not getting any better. all of the symptoms I am having have to do with Lyme ds so I am looking for a lyme Ds doctor a good one that has treated and diagnosed lyme. I live in the Chicago land area so I do have some of the best university hospitals around me. Can any of you point me on the right direction??? I am not sure how this works, but I thank you in advance. Good vibes to all.
Posted by bettyg (Member # 6147) on :
i sent ira a pm and asked her to post in seeking dr. forum, etc. DONE
Posted by Melanie Reber (Member # 3707) on :
Thank you SO much Miss B! I've been out most of the day and just now saw her request.
Welcome Ira! Chicago is a wonderful area, I'm sure you will be able to find the help you need soon.
M
Posted by Melanie Reber (Member # 3707) on :
up for Cactus.
Posted by cactus (Member # 7347) on :
bumping
Posted by Keebler (Member # 12673) on :
- It's good to glance over links here and look more closely at the self-care section and supplement sections here before your appointment.
Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
Dr. Burrascano's Treatment Guidelines (2008) - 37 pages (understanding that LLMDs may have updated since but this is a basic template that explains a lot)
As important as any supplements, sections regarding self-care:
Go to page 27 for SUPPORTIVE THERAPY & the CERTAIN ABSOLUTE RULES
and also pages 31-32 for advice on a safe, non-aerobic exercise plan and physical rehabilitation.
MAJOR REFERENCE LIST FOR SUPPLEMENTS:
This is included in Burrascano's Guidelines, but you may want to be able to refer to it separately, too:
This book is basic map & reference guide that every lyme patient should have. Great information about treatments options, support measures & self-care.
This book is based on interviews with 13 Lyme-Literate Health Care Practitioners. Each practitioner is given one chapter in which to share their healing strategies -
Posted by Keebler (Member # 12673) on :
- dmc just suggested this excellent source for someone in another thread: download & print out the FREE lyme booket from
Lyme Disease Association of Southeastern Pennsylvania
The last pages are symptom list organized by systems for you.
Then all you have to do it check them, and notes if you want & bring the pages.
If it is a true llmd, won't be supprised at the symptoms. -
Posted by Keebler (Member # 12673) on :
- * Ask if your LLMD has a web site or if they've written any articles that would help you learn more about their treatment style. Are there articles or books suggested for patients to read?
* Does he/she suggest a certain diet? If so, you can get started on that before your appointment.
* Paperwork - easier to complete at home
You may also call the LLMD whom you will be seeing and ask for them to send you the paperwork to complete now at home. They may have a symptom check list for you.
* You can print out any other lists of symptoms or questions you like and attach it to the paper work for the LLMD's file, then. Copy a set for yourself. You can use your own set of notes as reference during the appointment.
I used to have to type out all my questions in advance as by the time I got to a doctor's office, I was either too tired or too overwhelmed by all the sensory challenges to even think. I could hand my questions to the doctor and lie down and rest while he read my notes.
Try to be concise. Certain terms cover a lot: Brain fog is very descriptive, of example.
Also, look over these inner/middle ear symptoms. If you have any of those (as is very common with lyme & other tick-borne infections) you might want to copy, print and check off any that are relevant.
You may use a key of some kind to indicate: S = sometimes; F = Frequently; A = Always
(or use the same sort of code that the LLMD may have used in their own questionnaire). -------------------
Katie Couric TV program interviews two doctors & patients
Chronic Lyme Disease - Oct. 9, 2013
Two clips - notice the huge difference between the ILADS doctor (author of the book above) and the IDSA doctor
- but you may not be able to catch the serious errors from the ID doctor until you read a lot more. This is why it's good to have an ILADS LLMD. They know far more about lyme. --
Posted by C.P. (Member # 38378) on :
Dear Melanie, I just tried to PM you, but your mailbox is full. I wanted to ask you about Colorado LLMD's. Please send me a PM with any information about Colordao LLMD's if possible. Sincerely, C.P.
Posted by Lymetoo (Member # 743) on :
Melanie hasn't been here in a LONG time.
Posted by MADDOG (Member # 18) on :
I would like to know how she is allso!!!
MADDOG
Posted by LymeLightsIN (Member # 47889) on :
Desperately seeking a LLMD. I live in INDIANA, however am open to any surrounding state. Thanks in advance!💚💚💚
Posted by Lymetoo (Member # 743) on :
LymeLightsIN .. You can post in Seeking a Doctor and someone will help you there.
!![[Smile]](smile.gif)
![[Big Grin]](biggrin.gif)