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DOES MY DAUGHTER HAVE LYME DISEASE?? HELP PLEASE!

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Posted 3/20/2015 2:47 PM (GMT 0)
I have a question my daughter got bit by 2 deer ticks in NOvember. I got both of them out and have been asking for months to test her for Lyme. Recently she has come down with a fever, cold, and cough. They finally tested her for Lyme and two bands came back positive but they are saying it is not Lyme. I am having trouble believing that being that the bands came back positive. I have a picture of her results and wanted to post it on here but cannot figure out how to do that. I will put the bands that were reactive below. If anyone can please help me out I would greatly appreciate it! I am very worried and think I need a second opinion. One other thing, the ticks were in her scalp and I never saw a bulls eye rash but the back of her head where she was bit has been extremely itchy ever since then. I assumed it was dry scalp because her scalp is dry. Now I am wondering if that is a side effect from the bites. She is always so itchy in the spots where she was bit. Here are the reactive bands. If anyone knows anything and needs me to provide the other bands that were non reactive I can do that. THANK YOU!!!!

23 KD(IGM) BAND REACTIVE
41 KD(IGG) BAND REACTIVE
Posted 3/20/2015 3:07 PM (GMT 0)
what lyme test did she take? Did she have any indeterminate bands? does she have any other strange symptoms?
Posted 3/20/2015 3:12 PM (GMT 0)
The top of the page says LYME DISEASE AB (IGG.IGM), WB
Posted 3/20/2015 3:14 PM (GMT 0)
The only symptoms she has is the extremely itchy scalp where the bites were no rash there just itchy. She has been sick with a fever and cough and cold. At times she say her left thigh is sore but that was about 3 weeks ago and she hasn't said anything about being sore since. I think she looks pale and not herself. Granted I know she isn't feeling well. She is also tired easily.
Posted 3/20/2015 3:15 PM (GMT 0)
Nicole,
Band 23 is a Lyme specific band.

https://www.healingwell.com/community/default.aspx?f=30&m=1606610

I would recommend getting an Igenex Western Blot test done and finding a Lyme Literate doctor.
Posted 3/20/2015 3:16 PM (GMT 0)
Do you know how I can post her results on here? I have a picture of it but I can't figure out how to put it on here. I'm sorry I am so upset and worried. I don't even know how serious Lyme disease is. The doctors did say to still watch for symptoms which tells me that it is a possibility that she has it. When I google the 23 band everything that comes up says that band is positive for Lyme. Everything on her test either says NONREACTIVE OR REACTIVE.
Posted 3/20/2015 3:18 PM (GMT 0)
Nicole, if she has a Lyme specific band, which she does, that means you need to see a Lyme Literate doctor. If you catch it early it's much better than letting it go untreated.

Can you type out the results of the Western Blot? As I said, you need to get a bettern Western blot done through Igenex.
Posted 3/20/2015 3:26 PM (GMT 0)
Nicole, I am sorry this is happening to you and your daughter, BUT, you are catching this early and that is really awesome. Start a new thread and ask for a LLMD in your area. We will be able to find a doctor for you to take her to. It will be ok, you are doing the right thing and you are in a great place here to find all of the help you need.

Good luck!
Posted 3/20/2015 3:28 PM (GMT 0)
She needs the IGenex test. It's about $200, but is the best test available. You need to get her to an LLMD ASAP. And sometimes there is a waiting list! If you need help finding an LLMD, please let us know. PLEASE, don't let this go any longer!!

Xoxoxo
Utah
Posted 3/20/2015 3:34 PM (GMT 0)
I am just going to type everything that is on this results page exactly the way it is written

LYME DIESASE AB IGG.IGM), WB

TEST
18 KD (IGG) BAND NON REACTIVE
23 KD (IGG) BAND NON REACTIVE
23 KD (IGM) BAND REACTIVE
28 KD (IGG) BAND NON REACTIVE
30 KD (IGG) BAND NON REACTIVE
39 KD (IG) BAND NON REACTIVE
41 KD (IGG) BAND REACTIVE
41 KD (IGM) BAND NON REACTIVE
45 KD (IGG) BAND NON REACTIVE
58 KD (IGG) BAND NON REACTIVE
66 KD (IGG) BAND NON REACTIVE
93 KD (IGG) BAND NON REACTIVE
LYME DISEASE (IGG), WB NEGATIVE

IGG WESTERN BLOTS WHICH HAVE 5 (OR MORE) OF THE 10 SPECIFIC ANTIBODY TO B.BURGDORFERI.

IGM WESTERN BLOTS WHICH HAVE 2 (OR MORE) OF THE 3 SIGNIFICANT BANDS ARE CONSIDERED POSITIVE FOR SPECIFIC ANTIBODY TO B.BURGDORFERI.

I know it says negative but the doctors didn't seem to sure and the fact that 2 bands are positive bothers me. I also read that when your immune system is down (which hers is from the cold and fevers) that the lyme antibodies will not show. I am concerned because now that I said her head is always itchy where she was bit but there is not bulls eye they want her to be seen. We are going Monday but I feel like I need a second opinion. What do you think of these results????
Posted 3/20/2015 3:35 PM (GMT 0)
I agree, definitely get the Igenex test.
Posted 3/20/2015 3:38 PM (GMT 0)
Thank you all so very much!!! I am so worried and upset....how serious is this shes only 8??! What an LLMD? Can I just type that in my insurance page under specialist to find one? I live in Pittsburgh PA. Should I just ask her doctor Monday for that IGenex test?
Posted 3/20/2015 3:40 PM (GMT 0)
Definitely get the Igenex test and get to an LLMD as soon as you can. Don't wait. I waited with my daughter and that caused a whole slew of problems. Good luck.
Posted 3/20/2015 3:42 PM (GMT 0)
It bothers you because you are listening to your instincts and I can tell you, they are probably right!

As mentioned earlier, don't wait. Post a new thread with your state so we can start looking for you.

I only had two bands reactive (Non Lyme bands. I went for the Igenex test. Everything came back positive. Even the CDC themselves say their tests are unreliable! It's a shame really.

Your early start is the key here. It's golden.
Posted 3/20/2015 3:50 PM (GMT 0)
Nicole, I agree with Leilex, the very best thing you can do is listen to your instincts. They are usually right.

I had a Lyme test through Quest (just a normal mainstream lab) and my test came back completely negative or "non-reactive". I tried to convince myself I didn't have Lyme bc of those results...but the more and more I thought about it, I knew I had symptoms and that something was wrong with me!

I learned from people on forums like this that you need to test through Igenex to get better results. When I finally did that, I tested very positive. My instincts were right.

It's worth the extra money you will pay for the test :) Best money I ever spent.
Posted 3/20/2015 3:58 PM (GMT 0)
Nicole - a LLMD = Lyme Literate Medical Doctor.

He/she KNOWS about Lyme disease and how to treat it. We will help you find one in/near your area.

Yes, if your regular Dr. will give sign off on the Igenex req., that would be a good idea.
The Western Blot IgM and IgG are the two tests most of us get....approx. $200.00

I believe it takes approx. 3 weeks to get the results.
In the meantime, please schedule an appt. with a LLMD. They often have wait-lists.
Posted 3/20/2015 5:18 PM (GMT 0)
I just talked to the doctor and he said the Igenex test is just another lab or type of test and its the same. He said there is no definite way to test for Lyme disease. I'm so frustrated by them right now because I listen and have read everything you guys wrote but then the doctor tells me otherwise. It seems these doctors sometimes just think I am crazy and don't want to bother. We are still going Monday do you think I should demand this Igenex test? BTW thank YOU ALL so much for all of your help!!! I greatly appreciate it!!!
Posted 3/20/2015 5:30 PM (GMT 0)
It really sucks, but that is how most regular doctors are. They are mostly not helpful and your insurance may not cover an LLMD, but you really need one. Don't let these regular doctors talk you out of it or talk you into the sit and wait. You have a real advantage here, but you will have to fight and push for what is right. There is a big controversy regarding Lyme disease. Most doctors are trained that it does not even really exist. The Igenex test is NOT the same as the others. It is far superior. People from other countries use that lab. It is the best and most accurate lab for Lyme. So yes, DEMAND this IGENEX test. You will have to pay for it and may even have to supply the kit from the actual lab. All you need the doc for is the signature. They will most likely roll their eyes at you, but don't be intimidated.

Like I said, you have an advantage by catching this early. Don't throw it away. Good luck.
Posted 3/20/2015 5:38 PM (GMT 0)
"I just talked to the doctor and he said the Igenex test is just another lab or type of test and its the same. He said there is no definite way to test for Lyme disease."

That's not true. He doesn't know what he's talking about. I went undiagnosed for 10 years because of this mentality. Please demand the Igenex test or go to another doctor to get it done.
Posted 3/20/2015 6:30 PM (GMT 0)
Thanks guys so much! I am going to demand that test. I will not leave the office until the sign off on it. I also scheduled something with Childrens hospital infectious disease in the meantime. We will see her pcp on Monday and hopefully get that test signed off. I am still looking for and LLMD but am having trouble. I did create another posting about finding one but I'm not sure if I did it correctly. I haven't been on here in years. I trust this site and you guys more than doctors most of the time. I have ulcerative colitis and reading on this site has helped me in so many ways....thanks again!!!
Posted 3/20/2015 6:42 PM (GMT 0)
Nicole, if your PCP won't sign for the Igenex testing...go to another Dr....I don't know about the U.S., but here in Canada, a ND can sign.
If that's the same in the U.S., find a ND to sign it. Or a chiropractor???
Do you have the Igenex test kit? Most Doctors don't have them in their office.
You can order the test kit from Igenex....you might need to do that...and then find the Dr. to sign it.

Good luck!
Posted 3/20/2015 7:36 PM (GMT 0)
Also, expect the same from the infectious disease doctor. They are just a clueless from what I hear. If you cannot find and LLMD you can try a NP. There are other ways to find a LLMD. You have to get on the lyme disease website which I cannot remember the abbreviation. IDSA? Maybe. Someone will help me with that here. And you can request doctors that are certified thru them. What am I trying to say here guys, help me out. :)
Posted 3/20/2015 8:30 PM (GMT 0)
Nicole -
I can't write much now but I will say this - all three of my kids had lyme, ages 3, 7, 10 last year, and they are all fine now. they got bitten in October 2014 (didnt know it) and started treatment in march. you caught it early - so you are just in the right timing before it goes more disseminated. kids are very resilient, but you HAVE to go to the right DR. it is the most important decision you will be making here, so that she gets the right treatment. most infectious disease drs don't treat for long enough and then the symptoms return.

where do you live??
Posted 3/20/2015 8:30 PM (GMT 0)
Any doctor in the US should be able to sign it if yours won't, Nicole. If your PCP won't sign it, you can at least ask the Infectious Disease doctor, but to be honest, most ID doctors don't understand Lyme. That's why the "LLMDs" are a separate group.

Nicole, not IDSA, ILADS,

http://ilads.org/ilads_media/physician-referral/

Try that.

Posted 3/21/2015 5:35 PM (GMT 0)
LLMD know how to test and treat for Lyme properly, Lyme is hard to diagnose, treat and is capable of relapse.. Test for Lyme are notoriously false negative around the globe and IGenex lab test are the best.. After 7 years and 30 doctors that told me i did not have Lyme a LLMD did PCR for Lyme and i did have Lyme disease.. Lyme disease and ticks do not need to be attached for 24 hours Lyme specialist told some of his patients got Lyme in least then two hours of attachment..

If your child is sick and has symptoms she need help and only Lyme doctors will help and regular doctors will not help at all in my opinion.. catching Lyme early in the game is so important but by time you get help it usually too late because doctors spend too much time on useless, unreliable Lyme test..
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