I got to find a What? LLMD? What is that?

Once again I privately messaged friends and ministers that I knew would come before the throne of grace boldly on Hope's behalf telling them that I thought that is might be a possibility of Wilson's Syndrome of the thyroid or Lyme disease and letting them know that I had arranged several doctors appointments and was waiting on more lab reports..  The Lyme support group had told me that I needed to find a LLMD (Lyme Literate Medical Doctor) and get a "clinical diagnosis" of whether or not Lyme was present in her body.  Do what? You mean to tell me you want me to drive most likely to the north eastern part of the USA to poke a needle in my daughter's arm and draw blood and send to a lab in CA to tell me IF she has Lyme?  Are you crazy? More doctors to poke her,and tell her she ain't feeling the pain!  blah, blah, blah..... wait, what Lyme can HIDE in your body!?!?!?!?!?!?

Lyme moves throughout a person's body and can hide from blood test!  But wait Hope lives in Alabama!  Yes she does!  Folks most of the doctors in this whole blog except for one stated, "We don't have Lyme in Alabama".  Doctors make mistakes, doctors are wrong, doctors mis-diagnosis for YEARS, otherwise why have I met several people in the past couple of weeks that reside in Alabama and have Lyme Disease? Ummmmm......

Lyme is NOT just a tick disease!  You can get Lyme from ticks, mosquitoes, spiders and other flying insects.  Think about it how many mosquitoes have you met that knew where the Mason Dixie line was? How many ticks have you met that knew where ALL state boundary lines were?  You may think come on Sydney, you are just being foolish, think about it!

So HOW do you know if a person has Lyme disease? Read carefully and share this information with your friends. 

Most Lyme patients don't even remember a tick bite!
Most Lyme patients NEVER have a bull eye's rash!
Lyme disease is in ALL 50 states and worldwide!
About 50% of Lyme patients have a FALSE negative blood test!

WAIT! What? You mean to tell me that when the nurse called me about my blood test that the test could be WRONG? Yep!

Lyme disease is known as the "great imitator".  What does that mean?  Folks I personally did not "get it" and understand that phrase until I have walked along side my daughter this past 1.5 years and I have been the mom to her to take care of her.  Okay yeah, so? There are some days her joints hurt so bad I would think, what about Lupus? Fibromyalgia? I even had friends ask has she been tested for Multiple Sclerosis?  

Perhaps the next day her abdominal pain would be so bad that I would think, what about Celiacs Disease? Or so kind of stomach intestine problem? 

Then after trying to "fix" those a migraine may be next, oh but wait we had an MRI, all of the is clear, maybe it is hormonal with the thyroid off? 

Yes of course what about the fatigue, but the endocrinologist said she didn't have Chronic Fatigue Syndrome!

Do you get the picture?  Lyme looks like so many different illnesses! After researching and learning what little bit I have learned about Lyme disease, and the fact that it is NOT just a tick disease, I wonder how many people reading this are mis-diagnosis?  IF any of those symptoms fit you, please have a Lyme test through Igenex lab in California.  

There is one MAJOR difference about all of the illnesses I compared Lyme to above, the other illnesses are bad, awful, but with Lyme if you go mis-diagnosis it can be fatal if left untreated.

P.S. I am NOT affiliated with Igenex lab of California in any way, shape, form or fashion, other than sending a blood test in to save my daughter's life!

The following is a video from Igenex lab in CA, it may start off a little boring to you...but pay clost attention and find out WHY Igenex is the MOST ACCURATE for Lyme testing!
 

Okay so I need to find a LLMD, where the heck do ya find that?....


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Smooth sailing! Medical test are Normal!

Summer was coming to a close and now she was starting her junior year of high school, AP classes with some electives, football games and fun filled weekends.  I started to notice a change again in her health, she started slowing down again. I took her back to have her thyroid check, all normal.  In Oct 2012 she had strep, of course it kept her down and out of school for about a week, there again nothing that an anti-biotic won't knock out!

Thanksgiving holiday went by and all I could think of is how thankful I was that the doctors had ruled out all of the scary stuff this past year, and that the thyroid might be causing a few minor problems.  Woke up on the morning of December 2, 2012 (her dad's birthday) got ready for church, ate breakfast, the usual.  We got to church, attended Sunday School and Hope suddenly didn't feel good, nausea and upset stomach.  I am thinking oh great now a stomach virus! (just my luck on Ben's b'day there goes the steak dinner tonight).  She goes and lays down on a pew in the sanctuary, I saw that she was okay so I go back to Sunday School. I was gone about 20 minutes, other church members had started coming in for the worship service, Hope was sitting up, and she recognized me, but she did not recognize the people around her!  In about 10 minutes it was all over and a sudden headache occurred.  During the service Hope and I sat outside and just enjoyed the warm Alabama weather although it was December, and after taking Ibuprofen her headache went away. (Hope didn't drive for about a month after this event due to the dizziness.)

The following morning of course as a mom, scared, called and the nurse said if it happens again let us know.  Within about 3 weeks Hope and I were checking out of Wal-Mart at the register, then all of the sudden, Hope couldn't form a sentence!  Nothing would come out!  The words were slurred and scrambled, then in like 5 minutes it was over.

I called the Drs office and made a visit, after researching she was tested for a Mitrel Valve Prolapse, Echo-Cardiogram, EKG all came back normal.   Then after research I asked if she could have a table tilt test done for Dysautonomia. Wanna guess what the test come back as?

You got it  NORMAL!!! 

Happy New Year!  All of the above test were normal!  Not long after the Christmas break and towards the end of January the fatigue was rising, the body aches were getting worse, the migraines were getting unbearable, cold hands, cold feet, everything falling apart.  She pushed through school days, some half days but for the most part full days, she pushed herself and attended two weekend retreats.  Then spring break came, and it was almost Prom time!  Time to get a prom dress.  Fun!  As a mom you know something is wrong with your daughter when she can't hardly go shop for a prom dress and the next 3 days she is wiped out and all she is doing spring break is sleeping! I kept praying God, please don't let her miss her junior prom due to health problems. He didn't she went!

Within days after I started seeing that she was not bouncing back and I thought maybe it is time for a third or fourth opinion, whatever # this would be.  We went to see another Endocrinologist in Birmingham, basically he stated that we needed to possibly see an ENT, OB-Gyn and a Rhuemetologist if she is really feeling all of the pain because with some people it may be all in their head or IF she is then it could be Fibromyalgia. Oh but let me test her Vitamin D level. Which came back a tad low, but now taking more of that.

Once again another doctor has the same outlook of IF she is really feeling all this pain, well Doc do you really think she would put off getting her Drivers License for 6 months?  Do you really think she really enjoys being at home and not going a ton of places due to not feeling good?  She is a teenager that loves life, loves to laugh, loves people, AP classes and trying her best to keep her GPA up with her unknown illness! Well Doc with a list of specialist, ENT, OB-Gyn or Rhuemetologist which end to you want me to start??? (don't worry those were just my thoughts that day I did not rant at the Doc!)

With that appointment behind us, it set a fire under this mom again, I did an update status on FB for people to re-commit to pray for Hope.  Now this is getting really interesting!!!

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