ADVICE NEEDED

Hello My sister has Lymes Disease and it went untreated for a few months. She has only worked about 5 days out of the whole year. She has had anti-biotics and the doctors say she is now cured. But is she isn't getting any better, she is getting worst and the doctors are not really helping her as Lymes disease is not very known in my area. She is suffering with joint problems, weight loss, lack of sleep and then to much sleep, so cannot control her body temperature, her body is hurting all the time, she is finding it very hard to get out of bed, have a wash, get dress. Her boyfriend is helping her in and out of the bath, getting her dress, washing etc. She knows she is getting worst but doesn't have the strength or energy to fight with the doctors all the time. Is there any advice you could give us to help her get better? Any treatment we can ask a doctor to preform? Any help would be grateful. We are feeling like we are fighting a losing battle with Lymes and i am worried for my sister.

Post Edited (llrockon) : 10/25/2011 8:52:50 AM (GMT-6)

Hi Llrockon,
First of all Welcome to our forum! Next, I am sooo sorry to hear of your sisters ordeal! It is a scary place to be.

Carrie gave you some great advice!! Let's see if I can expand on that a bit and add a bit more to it. If you haven't already, it would be beneficial for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of relevant information, symptom lists and informative links that have been put together by our members here! Most of those who have read through it have said that it was very helpful!! We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge!

You didn't tell us where you are located, so we have to guess that you are in the US. Based on that here are a few places you can contact to help you find a LLMD (Lyme Literate Medical Doctor):

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:[email protected]

You can email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

If you are not located in the US, then I would suggest that you follow this link:
www.canlyme.com/.

Once there, look on the left side of the page, and scroll down until you see the tile "World wide support finder" - click on that tile. This will take you to another page where you will see : United States and under it you will see the words 'click here'
right next to it you will also see: Other countries, and under it also you will see the words "click here" for that one. Click on the appropriate "click here" and it will take you to a page that will show you even more options.

Best of luck, your sister really, really needs to get into a what would be considered long-term treatment by most doctors, staying in treatment until 2 months past the point where all symptoms are gone.

Please be sure to come back with any more questions or concerns, and to let us know how your sister is doing!! We would love to know!

I don't usually encourage our members to go to another site (it's frowned upon by those in higher positions), but I believe it would be really helpful for you in your situation. There is a support site called LymeNet Europe that would probably help you and your sister get to a doctor that can and will help her. Here is a link: www.lymeneteurope.org/

As I said before though - please don't leave us! We can still help you with information and support!