Why I disappeared AGAIN the last 6 months

A wise friend of mine suggested I start this back up to document my journey, again, in trying to stay on top of my disease.  For the last few years I have not been fully well.  I just assumed that there is nothing more to do in recovering so I just quit trying to get better.  I didn't stop all at once.  A few things here...  a few things there.  It wasn't until a few days after my birthday this past October 4th, 2017, that I came crashing down again.  Everything started to come back.  Every haunting, agonizing, tortuous symptom of Lyme Disease that I had before was creeping back in.  It started with higher pain levels until eventually the neurological problems started returning.  I had to up my antidepressant and use the heating blanket on its highest setting to get some kind of relief.  I took supplements, did cleanses, and kept distracted so I didn't go mad thinking about it.  I had to give up on a lot of my normal activities just to save energy for things I had to prioritize.  I stopped talking to friends, skipped going places and stopped calling people because I just couldn't and didn't want to explain, again, what was happening to me.

When I tell someone I have Chronic Lyme, or Post Treatment Lyme Disease Symptoms, I usually get a few "try my product" friends who come out of no where.  I know most is all in good intention, but scientifically there is a bigger picture into treatments than cannot be explained in one conversation.  I also hear the "I heard that someone was "cured" from Lyme Disease" quote and it makes me sigh.  It's a Disease.  There is no cure.  The only proof that it has been eradicated is in an autopsy.  At least at this point.

There are SO many conflicting places to turn to for Lyme opinions and support.  Just like treating Cancer, there is no one sure fire way to choose.  Many patients are left getting a second and third opinion after doing hours of personal research just to find a method to attempt.  Mostly just to end up switching paths or tweaking the protocol a bit to help it become more effective or less damaging to the body.

Back to my story...  in January of this year, my nerve damage in my extremities was getting bad.  I knew it was not a good sign.  If I went back into my doctor they would surely put me back on IV medications.  But in March, I started to have heart palpitations again.  It was early signs of Heart Block that suggest that there was a lot of miss firing going on in the wiring of my heart.  I DO NOT want to have a pace maker.  So I just knew I had to see the doctor.

It was March 22, the day of my two beautiful daughters birthdays, (born 7 years apart,) that I was volunteering to work in our church's temple.  It was a happy and calm day!  I was caught off guard when my heart just stopped beating.  Then it spazed out for a bit only beating in partial areas. I became very light headed and felt like I was suffocating.  It started to beat regularly before I could collapse and I just sat there and stared at the computer and waited until I felt better.  I never told anyone there or they would have panicked and called an ambulance.  I knew what was going on and if it was a real problem I would have fainted completely.  I took my health seriously again after that day.

Since then, I've had that happen 3 more times.  This last week has been uneventful as far as my heart.  Thankfully I have time to take care of my surroundings before anything gets too bad, but so far I have been OK.  If I had not started treatments 3 weeks ago...  I would be worse for sure.

As for now, I am doing a round of oral antibiotics until a PICC line can be placed.  Once again I am having trouble with insurance in getting a company to place it.  Hopefully in the next week I can start that...  I will have it for a minimum of 12 weeks.  That's not bad compared to some who are on it for longer than a year so I can handle it!  I have been herxing pretty well and have learned better probiotic and detoxifying methods to help in treatments.  I eat gluten free, dairy free and sugar free...  (well, sugar and dairy is at a very minimal if any.)

The hardest part of this all is not being the sick one.  It is watching all your friends not know what to say or do.  It is watching yourself not get included in things because I can't last the whole time or go anywhere adventurous.  It is trying to not bombard your husband with all your details because there is not much he can do to help me get better.  It only makes him worry more.  It is watching your children have to give up more things and have events canceled like Easter. (Yes, I was physically not able to give them their own Easter baskets or egg hunt in the morning OR color eggs.)  I kept 3 of the 4 kids birthdays low key because I just couldn't do any more than that.  I see my children worry about my illness and they see when I am not well.  It is them not wanting to go to school because they want to stay and be with me.  It is your 15 year old daughter having a panic attack that I could die young from this.  Unfortunately, once I get the PICC line it will be a bigger physical reminder that I am seriously sick...  besides the enormous amount of pills I take daily or the amount of pain or physical limitations I have.

I have seen a bigger change, a change for the better.  We slow down and talk more about what really matters.  We hug, cuddle and spend time together.  We help each other more willingly and serve when another is in need.  We love more unconditionally and forgive more freely.  There grades may not be the best right now, but all there tests show that they are learning a ton!  We may not have the healthiest meals or even anything besides toast or cereal, but we mostly eat together.  Our testimony of the gospel of Jesus Christ is stronger.  We know that Christ can and will heal us.  He will never leave us alone.  He may not take the physical pains away but he can heal our heart and spirit.  We all know He lives and loves us all.  He knows our name.  He has given us everything we need as long as we use it.  I am so thankful to be born at this time when the True Gospel of Christ is here on this earth again.  I am SO thankful to live so close to a temple of God that I may do his works and serve Him weekly.  I am so grateful to be sealed to this amazing family for all time and eternity.  I am truly blessed and am a better person because they are in my lives.  They are my rock and keep me going.  If you are going through a difficult time, I ask you to pray and search the scriptures.  Answers may not come all at once or sometimes not at all.  Do your research and ask for guidance.  He will show you the way.

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!!