Random Jabber & Blood Results

I am happy to report that my joint pain is giving me a much needed break.  The shooting muscle pains have even calmed down.  I still have several twitches, I'm sure that will not ease up for some time.  If beauty sleep were true I would have been crowned Miss Universe by now.  I cannot seem to shake the sleepys.  I'm sure my body has really needed it.  The doc wants me to have uninterrupted sleep at night and no crazy "Pink Floyd" dreams.  I'm still not there.  The lucid-colorful dreams I have are such a random hodge-podge of sorts.  Last night it was alligators under me as I swung from tree to tree till I made my way onto a cruise ship where my kids and their friends were.  I was told by the other parents to take them to get something to eat and next thing I knew I was in a HUGE HEB and I couldn't find a salad anywhere.  Then there was a man complaining in wine department (no pun) about the vintage of his "boxed" wine being poor and junk and he preferred they carried a certain type of boxed wine.
THOSE are what the doctor called pseudohallucinations.  These have to stop.  It's part of the bacteria and nerve damage. Wikipedia describes a pseudohallucination as the following:

A pseudohallucination is an involuntary sensory experience vivid enough to be regarded as a hallucination, but recognized by the patient not to be the result of external stimuli. In other words, it is a hallucination that is recognized as a hallucination, as opposed to a "normal" hallucination which would be perceived as real. 

In layman's terms I know it's not real.  I get these from time to time when my vertigo is really bad.  It is as if the whole room jumps upside down. People that have had frontal lobe injuries or frontal lobe epilepsy may experience these as well.  

And no, I do not hear voices.  Except the mom, mom, mom, mama, mama, mommy, MOM.  Those are the only little voices I hear. 

Now all of that I just wrote really has nothing to do with my blog.  I just needed an interesting intro because, "Good morning, here is a list of supplements I am taking and why." Just didn't seem as fun, but that's really what I'm going to share. Even though the majority of you that are reading and following my are friends and family, I may have a fellow-lymie reading as well. I want those of you without the disease to understand and to help those of you who may or do have the disease.  

DISCLAIMER: I am not a medical physician.  This is what my physician has me taking.  You should always consult with your physician before taking any suppliment or medication. 

Methylcobalamin B-12 injection 1cc-supports nervous system and healthy blood cell production. 

Trans-Resveratrol 1 500mg-antioxidant that supports free radical damage

Magnesium Malate 3 1250mg-energy, for pain and tenderness caused by fibromyalgia pain or chronic fatigue syndrome

N-Acetyl Cysteine 1 600mg-helps support lungs and cystic fibrosis

Alpha Lipoic Acid 1 300mg-antioxidant used to transport free radicals helps treat peripheral neuropathy, helps aide in brain function.

Fish Oil 2 2000mg-heart

CoQ10 1 100mg-heart, also can help with muscular dystrophy

L-Glutamine 1 tsp 4500mg-amino acid

In addition I am also on a daily vitamin and two different probiotics making my probiotic daily intake 45 billion.

I am also on a couple of prescriptions for the nerve pain as well and it has made such a big difference. I'm so grateful to finally have a break in pain.

My blood work came back.  The doctor informed me that I have a blood disorder called Thrombophilia.  It is also hyper-coagulation.  By blood is thick and has a potential of clotting.  What happens is as the blood flows through the veins it can clot and break off and travel and end up as a stroke, embolism, aneurysm, or in the lungs.  He wants me to start taking baby asprin and folic acid every day now.  I did do a small amount of research on this condition and there were two types he tested for.  One is common in Lyme patients with co infections. A doctor conducted a study in which he took Lyme patients with co infections and 90% of them came back positive for hyper-coagulation. I highly recommend if you do have Lyme to have this blood test performed.  The other out of the two was called Protein C test.  I have a protein C deficiency.  It is a genetic mutation and it also means my brother has it.  He and I have both had surgeries.  I know he has had at least 2 that I can remember.  I have had 3.  It's been grace that has kept us healthy.

I am still educating myself a bit on this and I'm sure my doc will go over it with me in more detail when I revisit in two weeks. He did tell me that I have a greater chance of developing problems with my heart that originally thought due to this. Still bringing that praise I talked about in the previous blog posting.  It's getting a little hard to, but I am thankful that I have never had anything happen as a result and that I now know.  

Bring The Praise

This week has been full of obstacles.  It's been two weeks since the docs visit.  Since then I have been on so many supplements that I'm not even hungry by the time I'm done taking them.  I have meds for the night, meds when I wake up, and then meds a few hours after I wake.   I sleep more than I'm awake. B-12 shots 5 days a week and not the energy I expected either. As mentioned before the doc wants my nerve and stress levels at an all time low.
With that said, our sermon at church last Sunday was bringing the praise with you.  No matter what the situation, there is always thanks to be given.  Example and I know a lot of you women have seen the little poem where Thank you Lord for the dirty dishes, it means I have been provided with food......and so on.
Well, it seems that I have been tried and tested to "bring the praise" with me for the past two weeks.
Teenage child decides he is upset with you and it breaks your heart? Thank you Jesus that you know where he is and that he is safe and happy.  Husband runs out of gas?  Thank you Jesus that he has friends ready to come to his side and that we even have a vehicle to run the gas out of.  You go for your blood work after a horrific day just to be told you have to come back?  Thank you Jesus for the bench that you provided for me to sit down on and have a break down.  Yes, that last part was meant to make you chuckle, but it was indeed true.  We weren't even past Monday and already God was giving us every opportunity to apply his message to our lives.  I had been putting off going and doing my labs for no reason.  I just dislike dealing with the lab.  It's full of someone complaining on their cell phone as loud as possible what all they are having done and how terrible it is going to be.  Then the lab workers.  Bless them.  I only have to deal with it for a short time.  They deal with it all day long 5 days a week.  I made it there at about 4PM.  They closed at 4:30.  When she saw what all I had to have done she told me I would have to come back in the morning.  I was certain she was pushing me off.  I walked into the lobby and sat down on the bench.  I proceeded to boo who while people passed me to swiftly grab the down elevator.  I dried my eyes after a quick prayer and went home and got straight on the Internet to look up my blood work code by code.  She was right, it had to be done in the morning.  Humbled much?  Not only that, but there really wouldn't have been a way for me to give that much in labs and then safely drive home.  My husband was my escort that next morning and after 18 vials of blood and $6,500 worth of it at that we were done.
The lab tech even looked at me at one point and asked, "You have Lyme?" I shook my head and she said, "You're really sick." Yes, yes I'm really sick.  A reality that is sinking in more and more.

The teenager woes are a whole nother story.  in my Forrest Gump voice Everyone keeps telling me it's the age.  We do have a blended family, so he is with his father right now.  Except for the once a week text I haven't heard from him.  This parenting thing was so much easier when my hardest decision was which diaper to buy.  Doctor's orders were to not let myself stress under any circumstance.  Somehow I am keeping it at bay.  I remember being his age and I wasn't exactly a bundle of joy.  It was at his age I started testing waters with my parents.  I just didn't have another parent to run to because mine were under the same roof.  Bringing the praise hard on this situation.

Gluten free for two weeks now. I've learned that the brain tricks you into thinking that just because the gluten is gone that the whole pan of gluten free brownies you just polished off by yourself are carb free.  As a matter of fact, the carbs look to be higher in the gluten free products, so due to the tightness in my britches here lately, I will be just eating clean and paleo-like.  We did try the pasta the other night.  It was nast-tay.  My husband said that maybe it's just an acquired taste.  No wine is a an acquired taste.  This was just gross.  I'll stick to spaghetti squash for my noodle substitute.  Which if you've never had is actually very good.

Last night my daughter's soccer team all went to the Dynamo game (Houston's professional soccer team.)
I think I had a bit of a panic attack.  My sound sensitivity has been off the charts.  I can hear things like I'm wearing a miracle ear.  It's all amplified too.  At one point my legs and hands started shaking quite bad.  I was fine once I got to my seat and sat for a bit.  I came home and slept for 12 hours.  Hard. It is crazy the things that I do now that just completely leaves me spent.

As I go into this next week, I up my doses.  So, just about the time I'm used to it all I will be starting over. My big goal for this week is to get my weeds pulled in the backyard and grocery shop.  I'll be bringing my praises.

Bring A Praise Podcast

Sleeping Beauty?

So I've been pretty much comatose the past few days.  I don't even remember much from yesterday.  I had to ask hubs several questions in order to jog my memory. I've been sleeping through dinner quite a bit.  RX and injection in the morning, then another RX at 10AM then another at  6PM then 2 more at bed time.  Plus supplements and probiotics.  Next month I will be adding 3 antibiotics to be administered all at different times.




I need a musical pill box.  You know something that will chime every time I have to take something?  I know they have apps for all of this.  If I can manage to keep my head up long enough I may plug in what I need.  I feel narcoleptic.  I need a helmet so when I crash land into my bowl of soup I don't get it in my hair.

Time for random thoughts:
I really do hope to at least get out and pull weeds from my back flower bed.  They could use a mother's loving.  Oh and pajamas with feet.  I think I saw some Hello Kitty ones at the Wal Mart.

Everyday is a new challenge and a new change.  Sometimes a new ache or pain and others relief and a break in the pain.  Blue October has a song called Graceful Dancing.  In the song it talks about sadness and depression, but how you must keep moving forward to the next new day.  Just because it's a bad time right now doesn't mean it always will be.  I am quite frustrated that just a few short years ago I was able to keep a spotless house, all the errands ran, serve on a few boards, make classroom treats, attend every function any of the children had going on even if it was at the same time and in two different town and still have dinner ready on the stove when we all made it home for the evening. I was Wonder Woman. At least in my mind.  Now I'm Wonder Woman in chains.

Lyme or no Lyme I know all of you other women have felt like this at one time or another.  Well, I feel a nap coming on.  After all I have been up for 2 hours straight now.

Shots Shots Shots

Now that I am in real time and I have caught you up on what all I have been going through I should be able to blog a little more regularly. I had my first methylcobalamin B-12 shot this morning.  Yes, I have traded glass shots for needle shots.  *insert sarcasm here*Ahhh to be me. It's not easy.   It was two hours ago.  I do think the anti-seizure meds are starting to do their thing.  I am pretty sure I slept through the night for the first time in forever.  If I did wake up I do not remember it.  I am thrilled to report no face pain today.  Amazing.  I have a case of bells palsy where the whole entire side of my left face will hurt.  There's been mornings where the husband says it looks like I've had a stroke.  It will draw up or completely droop and I can't feel a thing when it does that, but when I do have pain it is excruciating.

My equilibrium is still way off.  A mixture of that and my body regulating the meds I'm sure.  I wanted to go right this morning.  My senses were delayed and I just wanted to walk right.  I was walking like I was in a fun house and even ended up on the floor at one point. My head feels like it's under water.  I think I'll just sit for now and blog. I've been very tired.  I have slept more the past week than I've been awake.  My husband and kids have been wonderful in helping out around the house.  It's so hard as a homemaker to not be able to do the homemaking.  I really need to go grocery shopping and energy just hasn't permitted it.  I am on day 6 eating gluten-free and I haven't had any heartburn or reflux.  It's crazy how omitting one thing from your diet can change the body so much.  Doc said it should help with my inflammation as well. I fear that the way my knees have been I'll end up seeing an orthopedic doc next.

Side note to all my hunting friends.  Please make sure you use a deet repellent.  This is supposed to be one of the worst years for ticks due to the fact we didn't have a cold enough winter last year.  They love deer.  LOVE!  I'm sure you know this already.  Do not for one minute think that because you are in Texas you are immune to a tick carrying Lyme.  Cases are on the rise in Texas.

Lyme, Co-Infection, Meds oh my!

So, finally a doctors visit with more answers being spat at me faster than I can ask the questions.  It was supposed to be a two hour appointment that turned into about a three.  I'm not complaining.  Not one bit.  He started off by asking me questions about my medical history.  Most of which I've already disclosed in my earlier blog postings.  He wanted to see how my snap was.  How fast I could answer his question and how articulate I was.  That in itself was frustrating and I teared up a couple of times.  I felt so intimidated till I had stopped to realize exactly what it was he was doing.  He wanted to know the last time I could remember feeling 100% spring in my step and mind was cleared good.  I couldn't.  As hard as I try I cannot remember feeling that good.  I've learned to live day in and day out with this disease and I do not know any other way.

Upon examination he explained that I am carrying a co infection called Bartonella.  It's not uncommon for a tick to carry more than just Lyme, but you HAVE to kill the co infection before you can attack the Lyme. Soooooo.  Guess what?  That's right.  All the treatment has done the past year is made my Lyme stronger.  It didn't even begin to attack the Lyme, it just made it rear it's head and say you can't catch me.

The symptoms of Bartonella are very similar to Lyme.  In addition there are these nodules that will appear over the limbs.  When he had me run my finger down my shin I felt hundreds of them.  I thought that was just my shin.  I had no idea.  I even told him I've had that forever.  He examined my balance and coordination.  My family and friends are probably laughing right now because they can all recall a time where I was standing or sitting one moment and the next I'm on the ground as it it were magnetic.
I failed terribly at the test.  He looked over my memory function testing that I had done a few months back.  I have full blown neuro-Lyme.  I'm literally loosing my mind,  There is swelling, cell degeneration and plaque build up.  The nerves in my whole body are frazzled and because of the damage the Lyme has done to my brain my nerve endings are sending out signals of pain.  Imagine a power line that is live and had been cut.  That is what is going on through out my whole body.  My digestive system is shot.  The arthritis and muscle pain......in his words. "It's time to take off your halo and start getting better."  "I know  you want to meet Jesus, but at this rate you'll meet him sooner than everyone is ready for you to."  He explained the fact that I could have a heart attack at any moment because of the strain the disease puts on the heart.  Oh there's so much more, but this is the important stuff I'm sharing with you.

So there wasn't much of a diagnosis for him to give.  I already had that.  The treatment is why I was there.
I am now on a strict gluten-free diet.  This is day five and no it's not easy.  I've already cried over the fact that gluten is in everything it seems.  I also have to watch my sugar and bread intake as well.  Anything yeast can feed on.  Lyme loves sugar. It's been frustrating, but I have to heal some of the damage that has been done to my espohagus and stomach before I pump it full of antibiotics.

Next is the nerve meds.  I have to be able to sleep throughout the whole night.  Right now I wake at least 3 times and half the time I wake from a crazy dream and I am not sure if I'm still in the dream or if it's real.  I have to stop and think what day it is and where is everyone and so on.  I have vertigo and shaking constantly and I've talked about the seizures before, but when I blank out or can't get the right words out are a type of seizure as well.  All this I have to get under control.  My nerves needs to be at a calm and at rest and the seizures under control.

In addition to all of the supplements I am taking I also today....waiting for the FedEx man....will begin 30 days of Methylcobalamin B12 shots in the tummy to help make my heart stronger.

I basically am spending the next month priming my whole body from my brain to my heart to my stomach to the nerve endings in my feet for the aggressive treatment.  He said in my state if I do not do these things there is no way even I who has been in the pain I have would be able to tolerate the treatment.  I would end up in the ER.

I go back to him in November and I also will visit a Neuro-Lyme specialist per his request to make sure I do not have the beginnings of MS (multiple sclerosis) starting and to go over my cognitive memory function. When I go back, in addition to what I am doing I will begin a round of three different antibiotics at the same time.  Ahhhhh real fun at last.  The good news is he is hoping for no pic line and I'll be able to take the meds orally.  I pray it stays that way.

So, meanwhile, I have been sleeping ALOT and I will be making lots of casseroles to put in the freezer for the hubs to be able to cook next month. Man and kids cannot live on Hamburger Helper alone. Not without whining about it anyways.

Finally

In order to really I mean really attack this Lyme we had to find not just a doctor familiar and willing to treat the disease, but a doctor who speaks Lyme fluently.  These are know as Lyme Literate Medical Doctors aka LLMD.

We were put into contact with the only one for the whole state of Texas.  We called made our appointment with the doc and the day that I finally got to meet the man who now holds my life in his hands was here.

We left our house at 4:30AM to catch a 6:15 flight to Dallas.  Didn't sleep much the night before.  I was so anxious that I think I only got 3 hours of sleep the night before.  If you have flown to Dallas from Houston or vice verse then you know it takes longer to go through the process of getting there and getting checked in than it does actual flying time.  I don't fly well, so for close to 40 mins Kenneth was feeling the wrath of my nails in his arms.  Once landed we had exactly an hour and a half to get to our destination on time.  We paid cash for this visit (the doctor will only take cash due to insurance controversy) and we paid ahead. Add in the plane tickets (the time of the appointment was the only one we could get several months back and it was cheaper for us to fly than drive) and we were already in a good amount of money.  Now all we needed to do was pick up our rental car which was also paid for in advance.  As we approached the counters where we were to get our rentals they all had signs on them with instructions to go to the shuttle buses.  As we made our way there and sat we watched at least 10 buses go by and none with the name of our rental company on them.  After a while Kenneth asked someone and they informed us we were to get on this bus and it will take us there.  You mean the bus we've already watched 3 of go by?  Seriously, I felt like Forrest Gump sitting there waiting for my bus.  We loaded the correct bus and the driver asked us on the way there if we had our papers.  We informed him there were no papers so get.  In return he informed us that we wouldn't be able to rent our car unless we have the papers.  (Contract)  We arrived to the rental hub and they immediately informed us that we couldn't have a car and had to go back to the airport and get our contract from the lady at the counter.  That we shouldn't have passed her by.  We didn't pass her by.  There was no one there we argued.
I felt my melt down coming on.  It was like both walls were closing in or the ground behind me was falling off into deep space or hell.  I started getting really hot, I covered my face and fought tears as I explained the importance of our visit to Dallas in the first place.  Then it happened.  Remember the Christmas Story and the tire changing scene?  That's what happened next.  Only I didn't say fudge. I shut down after that.  Decided it would be best to keep my mouth shut.  A worker there took us back to the airport were we found ourselves right back at the desk again.  Where she wanted to argue that she was there at 7:20AM and we had to tell her she wasn't because we were there before that.  Never the less we got BACK on the bus back to the rental where the manager met us this time and comped our rental fees.  So, through the frustration was a blessing.
We got to our destination at exactly 8:30AM.  The time we were told to be there.  The 3 hours would be forever life changing.

Sleep Shmeep Sheep

I can't sleep.  It is 10:30PM.  I have to be up at 3:30 to be at the airport on time for a 9AM appointment in Denton, TX.  When I last left you I had just told you about my seizure experience.  Ahhh so many thoughts and emotions running through my mind right now at this very moment.  To make a long story longer like I like to say, I had quit my treatment shortly after my episode.  I visited the doctor only once more before trying to convince myself that I didn't need treatment.  Summer was coming up and I wanted my friends and family.  I spent spring break in Missouri with new friends (childhood to my husband) only to end up in bed one night barely able to walk.  I enjoyed the friendship of my girlfriends in May and even as timing would have it was able to have my childhood best friend stay the same weekend with me.  Summer was filled with good times and our annual river trip.  (Which resulted with me in bed early every night due to a repeat of seizures.)

I was regressing and fast.  The disease had surfaced after years of suppression and not only was I now where I started, but so much more.

Alone, until my husband had enough.  He has been my rock I must say.  He contacted many people within the Texas Lyme community.  I even have made a friend who was living right here in the same town as myself and didn't even know.

My husband and I have been driven to make a difference now and that is what started me wanting to share my story.  I'm fading.  I'm falling short of what I should be as a mother, wife, daughter, friend, sister, etc etc etc.....

I'm not at all what I used to be physically wise.  Heart wise, stronger than ever.  We embark on an amazing journey tomorrow.  We do not know at all what is awaiting.  We do know it will not be easy.  It will get ugly.  We're not even guaranteed a positive outcome.

You've been reading my blog.  You've kept up with me thus far and I thank you.  It means the world to me that you have even taken the time, but all of it....that's was just the introduction.  This is where the story begins.