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Posted 7/1/2012 8:50 PM (GMT 0)
My 15 year old daughter was bit by a tick 3 years ago I removed it about a week later i noticed her face was drooping and rushed her to the er. They did a ct scan and tested her for Lyme which was negative, The Dr said it was Bells Palsy she had no rash and didnt feel bad. She was put on steroids and antibiotics for 2 weeks just in case it was Lymes while we waited on the results. It just seems to me she has never been the same she has daily headaches for a long time now they say its depression because they cant find anything wrong. She also has alot of anxiety i dont know if this is normal anxiety or induced by Lyme. Now in the last six months her joints hurt and she has trouble sleeping. Btw I have had her tested for Lyme three times never knowing until now the test they use is useless. It really sounds like Lyme to me what about you guys? Heres where i can use some advise I ordered the Igenx kit do I need a LLMD to order the test or can i bring it to her dr and ask for him to order it and if it is positive go to LLMD? Also since it has been 3 years should be on antibiotics before i have her tested? I live outside of Tulsa about an hour please send me info for a dr.
Posted 7/1/2012 10:55 PM (GMT 0)
Hi Okmom,

I would not wait for the test results. The Bells Palsy should have been confirmation enough for treatment.

You can have your doctor draw the blood for the Igenex test and send it off.

Just so you know, steroids are not at all the right thing for Lyme patients. They suppress the immune system, allowing the disease to get an even better hold.

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]
If you'd like more doctor suggestions, you can email stephanie at: [email protected] You can also go to: www.turnthecorner.org/bod.htm 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 a great place to read to get you started on your Lyme journey.
www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Hope you can get her into treatment soon.
Posted 7/1/2012 11:01 PM (GMT 0)
So what test would you recommend i ask her dr to order through Igenex? The Palsy was 3 years ago and the dr said the steroids were for that. It looks like I have really messed up trusting her dr and I am hoping it is not to late to help her. So should she be on antibiotics before testing her i thought I read that will help the Lyme to show up?
Posted 7/1/2012 11:41 PM (GMT 0)
Ooh, don't beat yourself up that you weren't able to get your daughter the right treatment -- it is the medical community that is to blame here. They have been very slow to respond to this disease.

It is not too late to help her. In the right hands, she should make a full recovery.

Some say the antibiotics make the Lyme show up, other times they say you have to be off antibiotics. The bacteria that causes Lyme disease suppresses the immune system, especially in long held infections, such as your daughter's. Taking antibiotics could give the body a chance to develop the antibodies the tests are designed to detect.

Really, though, you shouldn't be worrying about the test results. The tests are terribly inaccurate. Instead, it would be best for you to locate a Lyme Literate Doctor who will diagnose your daughter clinically. Even the CDC recommends this as the way to diagnose Lyme.
Posted 7/2/2012 2:15 AM (GMT 0)
Hi okmom, where are you located? Finding an LLMD could be the most crucial decision you make for your daughter.

My 12 year old son was diagnosed and treated and is totally fine these days. The more you research the more you will learn that with lyme you have to be your own medical advocate. I went years undiagnosed and untreated so when they tried to do the same to my husband, I knew what to expect and how to demand treatment.

Best to you and your daughter. Keep us informed.
Posted 7/2/2012 2:32 AM (GMT 0)
Thank you for replying I am in panic mode right and she has'nt even been diagnosed. I have just finally put the puzzle together and so I ordered the kit from Igenex I have an app. on the 11th and really need some advise on what to demand. from what I understand I should ask for the western Blot test sent to Igenex but should I ask for her to be put on antibiotics and then giving the blood test? I live in Tahlequah ok. Im so tired of them telling me nothing is wrong I know my child and something is wrong. Please advise
Posted 7/2/2012 3:30 AM (GMT 0)
Hi,

Regarding whether or not antibiotics make the test more likely to be positive, I think that's still up in the air. I had been on doxy for 28 days before doing my western blot through Igenex. I was off antibiotics for 20 days before the test. My LLMD told me that it was best to be off for at least 2 weeks before the test. I tested positive.

Since it is not a new or recent infection, I personally wouldn't go on antibiotics before the test, but that's a non medically trained opinion. Finding a LLMD will be a good idea because generally PCP's do not have enough specified knowledge to properly analyze a western blot let alone treat the complexities of Lyme and co-infections.
Posted 7/2/2012 3:41 AM (GMT 0)
ok i am going to ask for this blood test on the chance it is positive and regardless of the results find a LLMD as far as I can tell the closest one is 6 hours from me unless someone else knows of one any closer? Thanks
Posted 7/2/2012 10:56 PM (GMT 0)
HI okmom,

Go on the Igenix site and do a search for the tests recommended by them (wish I knew about the info on that site before I sent my bloodwork out as I would have asked my GP to order other tests).  There is alot of good info on that site.  I think 6050 is one of them but check out the site.  It is a good idea to check for co-infections, too.  I would also check with your insurance plan if they cover the cost of the tests....not that you wouldn't have them done in any case.

I, too, requested the blood test kit from them.  I had my GP (general practioner) fill out the needed blood tests and sign and fill out the rest of the form.  I then took the kit to a Quest lab where they drew the blood required (had to wait 40 minutes for them to spin the blood) and took it immediately to a Fed ex store to be sent out. I would ask the people at Fed ex what time their pickups are so you can have your blood work done prior to this pickup and don't forget that the blood is going to be spun.  You have to have the blood drawn at the beginning of the week so it get to Igenix on time.  Hopefully, your doctor can do the bloodwork but he has to make sure that a lab is picking it up in a timely manner. 

Sometimes it can take awhile to get in to see a LLMD.  I, too, read that antibiotics shouldn't be taken prior to the bloodwork.

I am new to Lyme's disease and have a lot to learn.  Good luck with finding out what is going on with your daughter.

 

Posted 7/3/2012 3:41 AM (GMT 0)
I hope your daughter will get the help she needs and I'm so glad I read your post. Igenix is the only labratory that confirmed my lyme disease in 2001. I've been symtom free for years and I think it has come back. I'm so glad I read your post because I couldn't remember the name of the lab! Now to find a doc who will do the right test.
I took antibiotics for around 6 months the first time and it worked for years, now I need to find a doc who send the right test. Good luck!
Posted 2/13/2014 8:49 PM (GMT 0)
okmom,
I just read this thread, & I also live in Tahlequah OK!! I & my 11 yr old son both have chronic lyme + several coinfections. OK only has TWO qualified lyme providers. email me at [email protected] & I will send you their info! This thread is a few years old, so I hope your daughter is all healed up now & you won't need this info, but if she's not better, please contact me!
Blessings & take care,
Teresa
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