retirement position in another state, effective at the end of the month. back for me.
I'm trying to keep a positive outlook... has anyone "lived through" something like this before? I have one more visit scheduled with my doc before he moves on, and I'm sure we'll discuss a transition plan, but I have to say, I'm kind of in shock. Any advice?
OK - I don't know WHY or HOW this happens, but sometimes part of my posts don't "make it" onto the site.... so let me fill in some of the blanks.... I got a letter today - it said that my LLMD is retiring, I'm scared, I hate this and I want to whine and I want you all to tell me that it will be OK. ;) And if you know why bits and pieces of my postings might disappear, please feel free to share that too!
Hi LostGirl,
I have had to acquire new doctors countless times; it is absolutely one of the most stressful experiences, especially when you aren't feeling good, need treatment, and have uncertainty about what to do next. Here are some thoughts that come to my mind:
1- Ask the LLMD who is retiring to give you the maximum number of refills for your meds possible. Perhaps a three to six month supply is he or she can.
2- lymedisease.org has a portal to find a Lyme doc in your area. here is the link:
http://www.lymedisease.org/resources/referrals.html or just go to lymedisease.org, click on "resources" and you will find the portal to look for a LLMD. They do the search based on your zip code.
3- Ask for paper copies of all your records before the doctor closes shop. Keep all your records in a file folder and bring them with you to new doctors. It is a pain to get records transferred especially if your LLMD is retired. It may cost a couple dollars depending on how many pages, but I carried around my records for years and it is very helpful.
4- Feel free to vent or "whine" we are here to help!! Let us know how you are doing or if you need more help!!
Thank you - that's very good advice - I'll beg for the Rx refills and see what happens. As for finding another Lyme doc, I'm nervous about finding another "good" one near me... it seems like a few docs (in my area) have "put out a shingle" saying they can do anything, but you just walk away with a bunch of vitamins and nothing else... granted, I'm only relying on what I can see on the internet for that info, but it's not very comforting so far.
I'm having a REALLY rough time with my new seizure meds, the side effects are making my life a lot harder (everything from making it hard to put a complete sentence together verbally and/or in writing, to remembering what I was doing 30 seconds ago and what I need to do next - NOT HELPFUL WHEN YOU'RE TRYING DEPSERATELY TO KEEP A JOB, to staying awake for a few hours at a time). The neuro feels like we've accomplished the goal (48 days and no seizure!) - but I can't really function like a normal person.... its taken me 45-60 minutes to type an email for work when (in the past) it would have only taken 10 min - but I had to re-read and edit it over and over because of so many missing words and because I kept repeating my thoughts. I hear myself repeating my words during conversations frequently too... I can't help but think I'm sounding like a drugged up crazy person, I know it's damaging my credibility at work. Without my job, I don't have insurance. And I don't have friends/family who can help me. So... there's the whining. It's such a terrible downward spiral. The antibiotics & anti seizure meds for the neuro lyme and the amphetamines for ADHD - I've talked to the pharmacist and several doctors about (what I believe is a conflict between the stimulants and the antiseizure meds) because I think the meds are working against each other and I think the side effects are just adding to my struggle. The general consensus is "this is just how it is... what else could you want?" The last time I brought this up, the neuro said to me "Look, even Tylenol has side effects, there's nothing we can give you that won't have side effects.".
Thanks again everyone - it's so nice to have a place to unload, where I know people are listening - even if you can't fix the problem, you understand, and you don't think "it's all in her head" or worse... "but don't look that sick...????"
Hi LostGirl,
Great to hear from you! I have been told I "don't look that sick" countless times. It is so frustrating to be insulted with the all in your head or 'you like fine' rhetoric. Also my recent labs showed I was "healthy" except for some vitamin deficiencies, so my general practitioner told me 'your body is working perfectly' to which I replied 'Lyme is devastating! And standard tests do not show much!' (I have a general/family doctor and pay my Lyme doc cash because she does not take my insurance...) So I hear conflicting diagnoses constantly. Lyme doc calls me 'very sick' and GP says my body looks fine.
Regarding meds, the only thing most doctors do is symptom management I have found...which it sounds like you are experiencing. And I say listen to your body...if you believe there are meds conflicting with each other the doctors should listen to you...it is your body and mind. Also, the "benefits" should outweigh the "side effects" so if the side effects are affecting you more than a drug is helping, your doctors are supposed to take action! I am sorry to hear that isn't the case for you and hope a new doctor can find the right balance.
In terms of finding a 'good' LLMD, unfortunately I think it is trial and error. No offense meant to any males here...but after trying countless docs I have found women to be very good for female patients. My Lyme doc is a woman and she goes over women's issues as well as Lyme and co-infections. Not to say a male doc couldn't be good...but the women docs I have seen know the female body first-hand.
In the event you cannot work anymore, insurance through the healthcare exchange is very easy to acquire. And we cannot be denied for pre-existing conditions. I hope that you are able to keep working, but if not we are here for you to help with resources or ideas!
I hope you are having a good day...
I think I’m close to your area. Who will you go to now? I need to find a dr.
I have no idea.... good luck finding one - I don't know of any good referral resources for lyme docs in our neck of the woods. :( If you know of any, please share!
Hi LostGirl,
Besides the link that slmo gave you, this may be of help to you too.
http://www.lifescript.com/doctor-directory/condition/l-lyme-disease-in.aspx
Thank you SK. I tried the link - I'd be interested to know how the physicians tied to that link are "picked" - do you have much history / experience with the website? Thanks!
I'm sorry I don't know the answer, it was a link I found when I googled for LLMD's in your area. I do not have Lyme, but am here to support all who do.
It may be worth a phone call to these Doctors to qualify their credentials, you may also want to ask your present Doctor for a referral to another LLMD.
Wishing you well,
SK