posted
I finally see an LLMD on Friday. I know things vary from doctor to doctor, but can anyone offer any advice as far as what questions I should ask or what I should do/ expect?
Just a brief history: I was bitten 18 years ago, had a large EM rash, was never treated, never had any problems until I became pregnant 10 years ago. I only made connection between Lyme and my the bull's eye rash this year after trying to figure out what was wrong with me. I have severe neurological problems...severe memory loss to the point where I forget I'm cooking and have started a few fires.
If I do get a IV port in, any guesses as to how soon I'd start treatment?
Thank you.
Posts: 29 | From PA | Registered: Jan 2013
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Be sure to bring a timeline of all your symptoms and any photos of the rash if you have them. Sometimes people get used to having so many symptoms it becomes their normal. Try to document all of them.
Many women experience a worsening of symptoms during and after pregnancy. You should have your child evaluated also. Tick-borne diseases can be transmitted through pregnancy and breastfeeding.
Print out the questions you have with room underneath to write replies. There can be a lot of information during first appointments, and it can be hard to remember everything. If possible, bring someone with you. Each case is different, but many doctors start with orals first. They can be effective, they are less expensive and less risky.
Good luck at your appointment! Let us know how it goes.
Posts: 4682 | Registered: Oct 2000
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desertwind
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Member # 25256
posted
I agree - a timeline of all your symptoms and exposure history. History of any abx.'s taken for any reason and reaction to them.
Do not be hesitant to share all of your symptoms - do not leave anything out. Your LLMD will hopefully guide you through the appointment.
Can you recall the last time you felt "normal"?
Alot of information will be given so do write things down, ask a lot of questions and bring someone with you.
Even though you were bitten 18 years ago it is very possible that you were bitten again more recently if you live in an epidemic area.
Best of luck
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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gmb
Unregistered
posted
Get Dr. B's guidelines at the top of this Medical Question's page. It includes a 3 or 4 page symptom checklist. It's very helpful to fill this out and bring two copies to the appointment, and leave one with the Dr.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Be ready to discuss symptoms in your child and other family members. Mentally prepare for testing of them for Lyme. I was not even thinking of this when at my first appointment with sick son.
PICCS are quicker to get in. PORTS have to be coordinated with cardiologist. Obviously more involved. It takes time to coordinate home health care and infusion company.
Our first doc's new patient appointment lasted about an hour. Our new doc is so thorough and lasted close to 2.5 hours.
When sick it will feel like overload, bring someone to take notes because you will forget half of what was said.
I read Burroscano's treatment protocol and that helped me understand why so many antibiotics were involved and other prescriptions. It is so darn complicated! Best wishes,
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
If you have any recent bloodwork then take copies for the doc. Most docs will not require repeat testing of things that have already been tested.
With your neuro symptoms have you ever had brain MRI's or CT's done? If so then copies of those reports would be helpful. Depending on how long it has been the doc might order that those tests be repeated and compared to prior test results.
It would be very unusual to be prescribed IV meds without waiting for test results. Insurance is very restrictive when it comes to IV meds even with positive test results.
A good lyme doc will try to determine if you have any coinfections or other chronic conditions.
Obviously take a list of any meds you are currently taking. Also if you have taken any antibiotics while you have been ill then try to at least recall the names of the meds you have been on previously.
Don't know how much research you did on your doc -- but there are many LLMD's who only prescribe oral meds.
Do you currently have a PCP? Most LLMD's require that patients have a PCP also.
I recently bought a digital recorder at Staples. It was on sale for $29. Wish now that I had had that while hubby was sick. Of course you would need to ask the docs permission to record your appointment.
Many docs will also want to know if you take any herbs or nutritional supplements. It is a good idea to take the actual bottles so they can see what brands you are using.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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