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!!

Sinus Surgery and Lyme battles

First four weeks of the new year down and I have done well so far!  I have shredded three kitchen trash bags full of paper, sorted out my whole room, and started donating more of our unused things.  Considering I was down for almost two weeks of that to recover from surgery, I'm pretty much on a good track!

My surgery went well.  The results came back unexpected but noting that would never resemble cancer so for that I'm grateful!  It did show Cholesterol Granulomas and they will more than likely come back.  They are usually in the spaces of the inner ear so for mine to be in the maxillary sinus I was a "rare case study" to look up.  I'm not looking forward to that again and hope it won't be for many years to come if at all.  That was NOT fun.  I was on pain pills for a solid 5 days.  I took myself off of them and only used them if I couldn't deal any more with the pain.  I have refilled my Rx but haven't used any more yet.  I almost did today, but I braved it out because I had places to be.

My calling at church is going well...  I don't feel I do enough and tomorrow plan to reorganize my next 6  months to prepare for the worst and hope for the best.  I need to restart myself...  Reading scripture s every day and studying them.  My prayers need to increase and so does my temple attendance.  I need all the help I can in my calling and I don't mean just spiritual.  If it weren't for my amazing presidency, I would be lost.  They are my rocks.  I can count on each one and they go above and beyond without asking.  I used to be upset at myself for not thinking of the things they do, but I have to remember my brain is not what it was since last October.  Neither are my cognitive skills, my reaction times and my ability to jump back and answer quickly to questions.  

I am anxious for summer and warmer weather.  My body aches consistently and my headaches are nonstop.  My fatigue levels are high and my sanity is low.   It is so difficult to explain the mindset of chronic pain.  It can be so "dark" when you are at a higher pain level but knowing that it will pass is really what gets me through.  I know for sure it's when I do my most praying.

I am going back to see my Infectious Disease doctor on Wednesday and then we will decide where to go with this round of treatments.  My guess is we won't go to a IV at first and will try oral antibiotics with blood work and a bit more testing to make sure I don't have any other secondary infections.  I really am hoping to go against the PICC line....  Having to go in EVERY day by myself for 20 minutes, (yes, it could be worse!,) is really annoying especially when the drive is 20-25 minutes one way.  I will deal with whatever comes and cannot wait until I am back on track.

This time I did not last long in between treatments because my immune system dropped.  We have had employment issues, a death in the family, a pending move based on our landlords status with the home, and my heart and health issues.  All of this plus the stress from the holidays and life in general with 4 children has allowed Lyme to take over again.

This time it's different.  I know what it is and how to work the "Spoon Theory" into my daily life.  I know how to rest and save energy for upcoming days and I know how to plan for recovery days.  I also have learned to delegate and always have a back up plan for everything in case I am "out" for the day unexpectedly.

I have lots to do for my fundraising, since I have not lifted a finger since before the holidays.  I am going to update my GoFundMe page and eliminate Envita.  It will never happen.  I believe they are too expensive anyway.  I just really liked what they had to offer.  So it made me think.  I can offer some of that in my own home with a few minor adjustments.  The plan for now is to purchase a RIFE machine and hopefully an ozone sauna.  Once we buy our own home I can look into an infrared sauna and a few other essentials.

I am excited for February and what I have planned in store.   It may not seem like a lot to you, but to me it is.  Here is to month 2!!!

A break from Rocephin & plans for at home therapy

Monday's appointment went very well...  We decided to maintain my PICC line this week and see how I do off of the meds.  We will then talk about my plan for the next week on Tuesday once my blood work is in.  I am hoping for the best.  All though there is no way to know how much Lyme is hiding, (inter-cellular, cystic form, or in a bio-film community,) We must go off of symptoms, my blood work and the condition of my immune system.  If I am taken off everything I would just be on the look out for a flare up and will have to do the PICC line and IV's all over again.  It's a tough call.

Bryan and I are looking at other options to maintain my Lyme at home. There are many ways to continually attack the bacteria.  One is through using various herbs and oils.  Another, (and can go along with the previous,) is using a Rife machine.  With either choice you will need a detoxifying set up through an Ozone Steam Sauna.  Which if I had at home during my IV Rocephin treatments I would have been better off.... (Which was was what Envita had!!!)

Let me explain some of the things I just mentioned.

Rife Machine - Rife machine therapy works by generating resonating or sound frequencies specific to each disease-causing microorganism, at an intensity that causes its cells to disintegrate. The resonating Rife frequencies enter the body through electrodes designed for the feet, hands or through electrodes placed on specific locations on the body.  Setting the frequency specific to Lyme bacteria will assist in die off.


(Steam Sauna And Ozone Set Up)

Hyperthermic Chamber Steam Sauna Cabinet - A hyperthermic chamber is an enclosed box that you sit inside. Your head, however, stays outside. This allows you to tolerate a higher temp longer because your head is outside, and you are breathing cool room air. Steam is produced inside to increase the temperature anywhere from 90 degrees all the way up to 130 degrees.

Ozone Generator - Turns O2 into O3 or Ozone.  What does it do?

*Ozone Increases Oxygenation of your Cells (it has been proven that cancer and disease grow in poorly oxygenated tissues in your body).
*Ozone Modulcates your Immune System (for those with a weakened immune system, Ozone will boost the immune system. For those with Auto-Immune Disorders, Ozone will modulate the immune system to help to stop it from attacking healthy human cells.)
*Ozone Increases Energy Production in your Cells (your cells need energy to be healthy; low energy levels mean that you and your cells will not be healthy and will age)
*Ozone Increases the Activity of your "Anti-Oxidant Enzyme Systems". This means ozone will reduce the oxidation levels of your body.
*Ozone Reduces the level of acidity of your body (never mind the Alkaline Water...use Ozone!)
*Ozone kills Bacteria, Viruses (and virtually all other disease causing organisms) on contact

Oxygen Concentrator - Oxygen concentrators filter out other gases in the air and store only oxygen. 


The Benefits of Steam Sauna and Ozone

The use of a sauna should be an important part of any detoxification program. The sauna increases the eliminative, detoxifying and cleansing capacity of the skin by stimulation of the sweat glands and also promotes healthy skin tone and texture due to increased blood circulation. Using the steam sauna with ozone allows the steam to surround the body and ozone can be introduced through the skin. Humid heat opens the pores, which allows the ozone through the skin to the bloodstream, where it can travel to the fat and lymph tissue. It is very important to cleanse the lymph tissue of toxins and the ozone/steam sauna is the easiest and best way to accomplish this.

Artificially induced hyperthermia (rising body temperature results in the destruction of bacteria and viruses) combined with heavy sweating and a cleansing effect initiated by ozone will result in elimination of toxins accumulated mainly in the lymphatic system relieving the liver from the difficult task of dealing with them. Through the centuries, men and women have used steam to purify the skin, soothe sore muscles, boost circulation and to simply relax. The combined action of moist heat and ozone cleanse the lymphatic system, which carries 90% of the body's fluids. Ozone brings oxygen to the tissues for enhanced health and vitality. The combination of steam and ozone is a natural, effective way to promote a refreshing sense of well-being. We believe that a an Ozone/Steam Sauna cabinet represents a pleasant and easy to follow form of body cleansing.

Benefits of ozone sauna: 

*Relaxes and loosens muscles by reducing the buildup of lactic acid and increasing muscle flexibility.
*Oxidizes toxins so they can be eliminated through the skin, lungs, kidneys and colon.
*Boosts blood circulation, helping injured muscles to repair quicker.
*Stimulates vasodilatation of peripheral blood vessels relieving pain and speeding the healing process.
*Eliminates bacterial and viral infections of all kinds.
*Speeds up the metabolic processes of the inner organs and endocrine glands resulting in a loss of 200-450 calories in a 20 minute session.

Newest research shows steam hyperthermia an effective treatment for: 

* Detoxification programs
* Immune system deficiencies
* Pain management
* Cancer
* Arthritis
* Stress and muscle tension
* Increasing body metabolism
* Elimination of toxins
* Blood circulation

WELL!!!  That was a lot of info...  But now you know why these things are on my "wish list" on my site:

http://www.gofundme.com/MelissaSeverance

I will use these to help my body's immune system stay on top of the Lyme bacteria and to help me live a fuller life with my family and friends. Either way having this in the home for daily therapy is very beneficial and easier than going to a clinic every day.  If my Lyme flare ups are too severe then I can go back and try the antibiotics again...  Only time will tell.  

Kidney stones

Two stones in two days and two more to go.  Yesterday I passed a kidney stone.  I haven't had one that painful since I was pregnant with Grace.  Pain pills took the edge off.  I slept all last night in between pain peaks. 

Today I woke up sore and while driving to my infusion clinic I felt the pain come back.  I was passing another one.  Since the Drs were not in I skipped my infusion and went to an urgent care. 

I was told there was blood in my urine but no infection...  Thanks to the IV Rocephin.  It confirmed that I did pass a stone yesterday and the x-rays showed I have others to pass, too.  I was advised to go to the hospital.

I went home, and Bryan took me to Centennial Hills Hospital.  I was given heavy pain meds...  It was great to have a break from herxing and pain!  The CAT scan showed I was in the process of passing one on my left and one more on each side are ready to pass as well.  I was given 5 different meds and sent home to call my specialist in the morning to be seen right away.

If you have ever passed a stone you know that once you do it tears you up inside.  Passing a second one was only that much worse because of the already damaged path it has to follow to exit.  On top of that I was herxing.  Not cool.

My urgent care Dr. on Craig...  Tony Garcia, is great.  I saw him last year when I first became sick.  It was nice to talk to him about my progress.  He asked me how soon I would be doing my back surgery now that I am almost off of the IV Rocephin. Of, course once I'm done I will have my polyp surgery and then my back surgery.  Yea me!

2014 will be the year to get me better...  And this too shall pass.

Now for some sleep.

6 weeks in...

Today makes it 6 weeks.  I should be happy.  But I feel horrible...  again.  The last two weeks were so much better!  Then BAM!  Back to how I felt before treatments...  NO, it's even worse.  I'm not even on the Tindamax right now.  This is ridiculous.

Monday I met with the Doctor's PA, Stephanie.  She is great.  I really love her.  We went over test results.  Only one thing changed from the previous week...  My white blood cells are dropping.  I can only be on the Rocephin another week and will have to give my body a break.  I will infuse next Monday and will just maintain my PICC line at home for a week.  Then we can see if I have any flare ups and can decide what path to take next.

I have been trying to put together something for my fundraiser but my brain is not cooperating.  I cannot function and the pain is unreal.  I am trying to focus on breathing while listening to soothing music.  I am not sleeping well again.  My appetite is shot.  I really want to give up or crawl in a hole and give in.  I know I won't...  Just having a moment of weakness.

My kids have been home from school sick.  All of them.  We are having problems in this house and for some reason our family has never been sicker than the 2 years we have lived here.  I think it is either in the air ducts or we have another rodent issue.  It's embarrassing to me to think maybe some of this could have been prevented if I was just well enough to do something about it... or maybe not.  My house is a disaster, the children run wild, (when they're not sick,) and nothing is in order.  It's too much for me right now.

Anyhow, It's taking me too long to type this.  I need to go lay down if I'm going to keep this broth down.  I feel like I'm about to pass a kidney stone again...  Lovely.

Herxing

I hurt.  I hurt, hurt, hurt.  My body is finally herxing to the max and I am taking it one breath at a time.

Sounds are hard to bare.  Lights are too bright.  Air conditioner hurts my ears but I'm overheated and need the cool air.

I ache...  Everywhere.  My knees, ankles elbows, shoulders, hips....  Hurt SO much.

My fingers ache.  My back and neck are stiff and my muscles are knotted everywhere. 

My head is pounding and I cannot type this fast enough to document so I can sleep. 

I will do a video but wanted to journal my experience.

Oops...

Learning that multi-vitamins can make Rocephin less effective...  after almost 3 weeks of treatments...  I'm a little set back by this knowledge.  Today I started agin the right way.  And this is how I feel now.  Let's kick some Lyme butt!

2 week appointment with my Physician's Assistant

I have the best P.A. EVER!  I have to share my doctor appointment with you because it really makes a difference in a Lyme patient's treatment to have support, understanding and love.

I went into my clinic to infuse my Rocephin as I do every morning at 8am.  After I waited to see my P.A. for the weekly Monday appointment.  Normally she is accompanied by two other interns taking notes on how she reviews and advises patients in their care.  Today she settled in front of me on her rolling stool and paused for a moment just staring at me.  She has the most sincere and loving eyes.  She turned around to the other two ladies and asked them to check on the other patients so they weren't hovering around.  It was an awkward conversation and the ladies looked shocked a bit.  Mind you the infusion room is open to every patient and I meet with the doctors there.  

She asked how I was feeling and I replied that I was doing well.  She just kept concernedly staring at me and said that we should start with test results.  Liver good.  Kidneys good.  (She said more but I am summarizing.) White blood count at 2.8, still low.  Red blood count just above the lower end of the scale.  Platelets low... We will monitor these.  Hemoglobin good...  all else good.  My CD 57, (immune system/ killer T cell count) was not taken for some reason so we will have to do it again on Friday.  It was low last week so we will assume that it has remained the same.  My B12 and folate are low and we need to bring it up to help with my body's natural detoxifying process.  

Since I am still having Lyme symptoms my P.A. suggests that we start Tindamax.  I will be using this medication to attack the cystic formations that the Lyme spirochete forms when there is antibiotics trying to attack it.  My initial 2 weeks have past and now we must start to get the bulk of it.  I have yet to address a chelation treatment that will help rid my body of heavy metals...  Since I will not be treated at Envita I will have to address this myself.  I also will have to address detoxifying myself from all the toxins that will be released when killing the spirochetes.

Stephanie, my P.A. (I will have to look up her last name, she goes by Stephanie!) asked if I have researched about herxheimer reactions.  I explained that I had researched it because I wanted to be prepared.  She then asked if I am ready to start or if I needed another week to get things in order.  I told her of my amazing support group...  Family and friends ready with meals, house cleaning, rides for kids and babysitting.  She asked again of I was ready for it or if I wanted to wait another week.  Me, personally, was I ready.  I told her yes.  Yes, that I wanted to attack this head on.  She stared at me and I just felt that whole-hearted concern...  I started to tear up.

As she was sending the prescription for Tindamax to my pharmacy she asked me if I had any questions.  I wanted to know how long before I started to herx.  She said that it would take a few days.  I was having a harder time keeping back the tears.  She looked up, sunk her shoulders down and stared at me again...  She was so concerned for me.  She arose and went across the room to the tissue box.  I thanked her and started to talk again...  I just stared at her and said I want to get better but I  am not ready emotionally for the path I have to take to get better.  She sat and listened to me.  

As little dialect that was exchanged...  It was more of a sweet moment that occurred the whole visit.  She told me that even though I had a huge support system to help me through the next few weeks, she would be there for me if I needed her.  If I had any questions...  Anything.  Her face, I cannot explain her countenance...  It was as of she crossed the medical professional barrier between Dr and patient and was there for me.  She has seen others go through this and all though she has never been through it, she has talked to and treated those that have.

Before I left she told me to go do something fun today.

That's advice I will be taking seriously...  Doctors orders!

2 week update into Lyme treatments

2 weeks down.  The easy part is over.  Today my nurses drew blood for another Lyme Disease panel.  I hope to get the results on Monday to see how everything is coming along.  My test results from last week showed my C diff is normal and my electrolytes are good, but my white blood count keeps dropping.  I just started another medicine that will help my intestines to hopefully digest better.  I have been on it for a day and a half and hope it improves soon.  I will find out Monday what direction my treatment will go.

As I am sitting here doing my infusion...  I received the comment that I look like I am hiding from someone with my hat on.  I responded with "From the world, I guess."  I feel so run down and have little care about how I look right now.  There are always other women in here with amazing hair, clothes, and lots of perky energy...  I'm over here looking like death, (in my opinion!)  This place treats a variety of infections so Lyme patients are less common.  Which means a lot of people at 8am on their way to work afterwards.

The first week I felt the exhaustion from the meds, (mind you on top of all my Lyme symptoms,) and my intestines stopped digesting everything.  I have had constant diarrhea since day 3.  Some days I can't even leave my house because of it.  Fun, huh? 

The second week I felt even more exhaustion.  It would start around 11am and my brain would just shut off.  Every day there was a new excruciating pain somewhere in my body.  The diarrhea was causing the nausea and my sense of taste is shot from the antibiotics, and still is.)  I spent most of my afternoons asleep in bed, on the couch, or going to the bathroom.  It would lessen around 4pm to 8pm at night.    Later in the second week I gradually started feeling the effects by 10am and lasting just as long.  ONE day was pain free and I was SO excited!  I spent much needed time with my oldest and watched movies with the kids.  It was a great day!  I yawned a lot and kept the bathroom occupied but it was great!

Today is day two of my third week.  Yesterday I came home and only made it to the couch.  When I was in the middle of my IV drip with Rocephin I instantly felt the effects.  I finished up, hogged the ladies room and made it home in time to crash on the couch.  I stayed there...  For a while, hat on, and everything.

Today is a little better as far as exhaustion but not for my poor bum!  (Sorry!  That's my life right now...  My relationships consist of being friends with the couch, bed and toilet!)

I have been able to keep up with very little compared to what this busy body is used to.  I have been very blessed to receive help from family and friends with meals, babysitting, and house cleaning.  My husband has filled in where he can but our children come first.   During the last year I have spent more time cuddling kids and talking to them then keeping them on task of chores, service and school work.  Their eating habbits have worsened and whining has increased.  I know they have gotten away with a lot this last year.  I also know that I will get better and slowly get our family back on track as well.

When a family member is sick it weighs on the rest of the household, too.  Especially when the sickness lasts for months.  Spouses feel strained and exhausted taking on extra responsibilities.  Watching their loved one go through the course of the illness is emotionally hard as well.  The children are not able to fully understand why this is happening.  For Lyme Disease patients you have to get worse before you get better...  It makes it even harder for children to witness it.  My kids now approach others with conversation starters like, "my mom is sick" or "my mommy is not here because she is sick."  They are walking stress balls and we try to bring some laughter into it all with positive outlooks and attitude. 

My kids keep me fighting this head on.  I cannot let them think I am helpless or a victim...  Mostly because I'm not.  I'm a fighter, a warrior in their eyes and this too shall pass.  We look ahead and in the now enjoy catching up on movies and TV series we have missed.  I have had a lot of time to ponder... Spiritually it has been humbling for me.  I have goals to redirect my life.  Continuing to help others, teach my children the gospel and to serve as an instrument in the Lord's kingdom.  I feel the HUGE need to purge my home and live with less.  (This was my goal last year when school started and after getting sick since October it has stopped.)  I want to be out doors every day...  My backyard was my sanctuary and now it is trashed, unloved and dead.  I will have a lot of work getting it up again but I can't wait to start.  I am one for being outdoors so its ironic that I contracted Lyme!  I plan to build a playset/ club house outside for my kids and I to "hangout" and to plant grass again.  I wish I could make the WHOLE yard grass...  We will see!  I hope to paint walls to liven up the place and to establish our school corner again.  I plan to help others as we have been helped...  Before I did it out of love.  Now I know I will serve with more empathy...  More understanding.  Accepting help is hard when you are so self-reliant and always serving others.  Being in the accepting position is humbling.  I have learned so much.  (I am in tears now thinking of having my life back...  Being functional again!)  I am impatient but know that I will have to gradually work my way back.  I miss Zumba and fun date nights...  I miss playing with my kids and jumping for hours on the trampoline without being tired.  I miss camping and road trips with family and friends.  Most importantly I miss being able to remember what I read and to function mentally enough to take care of things.  I'm the primary president in my ward and I am VERY excited to get back.  We have amazing kids and they have such sweet spirits.  My counselors, secretary, teachers, music leaders, scout and activity days leaders are awesome and I couldn't do this without them.  I am surrounded by love and am truly am thankful. 

My son is wanting to spend time with me and has been patiently waiting... Well, sort of.  But he needs me, so I better stop now!  Thanks for being patient with me!  Love you all!