MRI results and the debate about false positives??!!

I am so glad Tuesday is over.  Waiting for test results is never fun.  Especially when it's about your brain.  I had the most mentally distracted week ever just trying to forget about it and pass time.  I found plenty to do and borrowed too many spoons to accomplish it all...  So my 14 hour night of sleep was not a choice.  It just happened!  Although it did give back my spoons and then some which I needed to get through Monday's anxiety.  

My appointment was in the morning and I arrive nearly in tears.  Everything hurts, my brain is a mess and my patience with the test results was running thin.  Once they told me it came back just fine I felt a huge relief!  Not one lesion, tumor, growth,...  Just nothing but a healthy brain!!  I am beyond thankful!  

Our next step is to refer me out to do some testing on brain activity since the tremors and numbness still need to be figured out.  But my brain has no abnormalities in the MRI so I'm happy...  And it's all intact and still in there!  Haha!  

This also leads us to address why I am not felling better.  The last two weeks have been rough.  I was off the Doxycycline for a while and I felt worse again.  I thought it was all in my head or maybe just stress from the upcoming move our family has to do, or the pending MRI and Multiple Sclerosis/ misc, possibilities.  

Either way, last week was not ok for me.  I talked to the student today at the doctors and tried not to cry, but when Stephanie, my PA, walked in....  I could feel the release.  I told her how frustrating it all is and that I just want to get better.  I thought we may do Doxycycline for another few weeks but knew before the MRI was ordered that we said the next step might be the IV's.  We tried to avoid it at all possible.  Thankfully we did.  I know it made a difference and now we just need to kick it in the butt!  Doxycycline is harder on my stomach so I ate a little with it each time.  You're not supposed to but I couldn't deal with the horrible stomach pains anymore.  So for now we are going back on Rocephin.  I had my PICC line put in and am ready to start treatments in the morning.  Hopefully not for too long this time, but we will see how it goes.  I know I'm in good hands.

So this is random... 

Twice now I have had comments about others getting a false positive on a Lyme test....  WHAT??!!??  Ok, so here is how I have been explained many times before.  If you have tested positive for Lyme....  YOU HAVE IT.  This is what I have learned:

The problem with the testing method isn't giving false positives it's that it misses the antibodies and can show false negatives.  Then there is the big debate between the CDC and "other" doctors that you must show a certain number of antibodies to be positive or not positive.

So, two things here.  

First, the test the CDC has, which in Nevada can be ordered through Quest or LabCorp, doesn't test for all the related antibodies.  So it misses some of the big red flags.  

Second, the most common one and usually the one to show up first is 42.  Translate:  These are spirochete antibodies...  No wait, let me add to that...  It's the TAILS of the spirochete.  Yes, there are different antibodies for different parts...  Cool, huh?  

So a spirochete can be one of three known things.  You either have 1, a dental infection, 2, Syphlysis, or 3 Borella Burgdefori...  In other words, Lyme Disease.  Only you and your doctors can figure out which spirochete "tail" you have flowing free in your blood stream.  

Ok, so you know that if you have a spirochete tail...  The body of it is there, too.  And lots of them...  They are SO tiny.

My first test showed 42.  My first Infectious Disease doctor wouldn't take my case.  Over the phone with out talking to me said I do not have Lyme Disease.  Further testing proved him wrong.  Very wrong.  Not only did I have the past antibodies of Lyme Disease, I had a current infection.  Which means my body was not able to keep it under control.  It also explains why some one can get past the initial flu symptoms and be fine for decades.  Then something changes, usually stress, passing of a loved one, moving, loss of a job, freezing temps...  Anyhow, your immune system cannot keep up and Lyme takes over with a vengeance.

Ok, so I've put this out there.  Will someone correct me if I'm wrong.  Please.  I would hate to misinform someone and only know from my experience, my research and from what multiple doctors from different fields have told me.  I would greatly appreciate it.  I will have to update the correct spellings and rest of the proper names tomorrow.  I'm just ready for bed now.  Sleeping next to a 5 year old cutie pants who i am on stomach flu watch for is tiring.  I think she is good for now and I can get to sleep. 

Thank you for all your continued prayers!  They truly do make a difference and our lives are blessed because of you!!  Until next time!!

Sleeping in...

I have great friends.  When I say I've just woken up and it's around 12:30pm...  I always get positive responses.  But just in case you were wondering why I sleep in, well, I can tell you two things.

1.  I have an amazing husband.  He gets all three kids up every morning and gets them off to school.  He also knows if I can't wake up easily there is probably a reason.  Usually he knows because he's been up himself from my inability to sleep well.  I only found this out a while ago.  Even though I don't remember, I apparently wake him up from my restless nights.

2.  I have lots of reasons but they will all fall under this...  My health is unpredictable mostly because of Lyme.  About 5 nights a week I either have insomnia, anxiety attacks, tremors while awake and asleep, painsomnia, (which is the inability to fall asleep or stay asleep from the amount of pain I'm in,) or some other symptom.  

Tonight it is intense chest pain, upper leg pain, anxiety attack, and the tremors are off and on right now.  

I finally had my brain MRI and will receive the results at my next appointment on Tuesday morning.  I don't know what the plan is if they find any abnormalities but if nothing then I should be able to get a referral to a neurologist and continue my Lyme treatment which will more than likely put me back on a PICC line.  Either way I want to feel better so I am ready for it.  

I haven't told many people this but I have been feeling worse.  My symptoms are back and I have only been on a two week break waiting for this test to occur.  I am so sick of hurting and not being able to function properly.  I'm so sick of sleeping in and only having a few good hours a day to do what I need to do.  It's very trying to deal with and to keep a positive attitude.  I have four children and I must be strong for them.  

What I really want to do is scream, cry and eat comfort foods all day if my body would let me.  It is so hard to be strong.  Especially when every day you hurt.  When a different symptom than the day or hour before reminds you that you are battling this disease.  It doesn't let you forget.  It never stops attacking and destroying your entire body and deep inside you know it, too.  It's slowly eating away at you and while you hear all about these cures you know there really isn't.  Just like cancer there is only remission...  If you can achieve that.  And then you will never reach 100% of your old self ever again.  Few actually achieve 80% or better.  

It is different for everyone.  For me, I'm in the middle of my battle.  I know I will achieve a remission status and will be capable of many great things again...  I just have to have patience, love my self, and keep supporting my body, mind and spirit.

Besides studying the Book of Mormon and reading the same book in a groups timeframe, I am reading the New Testament.  I have just begun, but learning of Christ's miracles and healings gives me hope that I can too be healed.  I truly believe in the power to heal.  Not just from medical or natural sources but from priesthood power held correctly by a true and worthy priesthood holder.

A year ago I received a blessing from someone who especially has the gift of healing and I know it helped.  I am faced with the same worry as then...  A possible MS diagnosis...  But know that I have been blessed to have my Lyme Disease diagnosis.  It causes MS and I know how to stop its progression.  I found an answer that some never receive.  

It brings me comfort to know that my Savior has felt my pains, has loved us enough to endure them all, and who was resurrected to show that death is not the end.  He has conquered all that we will ever go through and showed us the way to happiness and eternal life.  I know that someday I will be cured...  Wether it's in this life time or the next, I will be whole again.  For now I will continue to do all I can to achieve it here in this part of life.

I thank everyone who has ever supported me, prayed for me, helped me or has even thought about myself and my family.  You may never understand how truly grateful I am for you.  You are a blessing and a true instrument in the Lords hands.  You are another way that prayers are answered and every little thing is truly appreciated.  

As always, keep our family in your prayers.  Thanks for all the love!!