Lyme Disease Support Group

Well we got the results back this week.

My 11 year old daughter also has lyme. I knew deep down what the result would be but I had hoped it was going to be negative. I remember a migrans type rash when she was aged 3 days old, 5 years and 3 months ago and she has pain and fatigue. She stopped breathing when she was 1 week old and had defective kidneys.

I was only diagnosed 8 weeks ago after 23 years of fighting for a name for what was happening to me..

My symtoms as some of you know can be pretty bad, so she has watched me suffer and often seen me bed bound unable to talk or walk and also with bells palsy and severe pain.

My daughter is angry , scared but also brave.

She said God must have a plan for us.. she really humbles me.

I just wanted to let you guys know.

My 4 year old is also going to be tested soon.

My older daughter and I both tested positive on the western blot.

Sadly again Uk treatment protocols are not great , VERY basic although some doctors are trying to view lyme differently and listen to patients. However we will be going private to one of the VERY few lyme docs here. I may need to consider raising funds in the hope of travelleing to states for treatment for my older daughter and possibly also my younger daughter too.

This has been a really difficult time, finally finding out what was wrong with me.. then a few weeks later My 11 year old also being diagnosed with lyme. She has also just started high school last week and is finding that hard. her legs hurt walking up and down stairs and she cant do Physical activities. She has also been very tied something I have often asked the doctors about before now and been told its puberty.

She asked me to ask if there are ANY lyme groups for kids or children with lyme who would be her email buddy supervised by myself of course.

Thanks once again for this amazing forum..

and sorry I havent been around for a while..

xxxxx

Post edited by: fraggles, at: 08/22/2009 03:36 PM

Post edited by: fraggles, at: 08/22/2009 03:44 PM

I'm so sorry. I am sitting on pins and needles waiting for my kids results right now. Its taken me a while to get up the nerve to test them...this is actually the second time. The first I asked for a western blot and got some reflex thing that was of course negative and i don't trust it. My 6 yr old has terrible leg pain and has had gastro issues off an on I'm almost sure he'll be pos. I'm sorry you are having to deal with this but it sounds like you have great kids and they have seen how strong you are over the years and will be better for it. I saw where one poster (bethtom) wrote of her children growing up with her being sick and she said how it made them very independent. I think thats great to hear. Our family's will only be stronger for having been through such things. Hang in there. We will all pull through this. I am convinced! Take care.

Ive been putting it off 4 awhile now,,but the more i see the more i no i must get them tested...I do believe my lil guy has it,,i no it...I took him to my llmd and he said that being that he is always sick and on abxs at least once a month jst to leave him for now,,because hes on abxs all the time hes being treated...The test would run me 500 for the both of them,,Im gonna try hard to have this done soon,,,It kills me to think of children having this disease,when we no what we go threw...JENN

So sorry to hear all your news, hopefully soon the people suffering from this disease will start to get the treatment they deserve as the numbers increase, especially in our youth. I think a kid's group would be a great idea... or perhaps there is another member who might have kids about the same age who would like an e-mail buddy too. Maybe you could put a post about it ...and PM each other the info.

Honey Im sorry to hear this. As you know I have 4 in my family with it.If there is anything I can do let me know.

I spoke to my cousin and he said he is in the mental health part of the NHS as a pharmacist. If you have a specific question I can ask for you.

Thanks everyone. I definately think anyone who hasnt had their kids tested should. My oldest daughter was on anti-biotics for a cosntant 5 years from 1 week old as she had defective kidneys. She has also hadm many courses of anti biotics for strep throats etc. yet she still has syimtoms of pins and needles , fatigue and pain also headaches.

I am going to try some natural methods such as diet change and detoxing.

I am definately looking into setting up a kids section on the website I am trying to get live.

I will also make a seperate thread for any adults or kids who would like an e-buddy.

much like a pen-pal only with email

xxxxx

sounds like a great idea.

have started a thread... my daughters really excited so we are thinking of fun ways to set it up...