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.

Local Pizza Place Helps a Family in Need

What a surprise this was to our family when we learned that Peter Soltesz at Joe's New Your Pizza had offered our family dinner and a chance to get out and forget about Lyme for just a bit.  I have to say that it is tough for me to go anywhere.  I must reserve my energy before and most of the times after I am still out for the next day or two.  This evening was perfect!!!  Well, almost.   I want so badly to forget about Lyme.  It is hard to when I am not always feeling up to it...  Watch the video and see what I mean.  I really had no idea they were filming me when this happened and to see it from outside looks scary.  Going through it is not easy and to think I used to be like this a lot.  I have been on treatments here in town but it is not enough.  Getting more extensive treatments won't cure my Lyme disease but it should give me many more years in between.  Knowing I may have to do the extensive treatments at all is tough to think of, but I have to.  I won't give up and let this slowly take my life from me.

Anyhow, enjoy the video and please share it!!

Doxycycline

Finally brave enough to start my second part of treatments.  Doxycycline twice a day.  Let's kill us some Lyme!

PICC Line is OUT!!!!!

My PICC line came out Tuesday!  WOO HOO!!! The only thing that hurt was taking off the butterfly clips...  I swear it's made from superglue.  It was a great moment..  It meant I was done with the daily infusions and this part of my treatment. From here I will be on Doxycycline twice a day for a test trial of about a month.  Today is Friday and I have not started it yet.  I am half afraid to and half cannot purchase it yet.  I will tomorrow.  A 15 day supply is $80.10.  How exciting.  Who knows how long I will be on this antibiotic.  Only time will tell.  

Pulling the line out!

Here is a link if you want to see the second half of the line being removed.  There was very little blood.  It looked more like it was dirty than anything!!

CLICK Here for My PICC Line Removal VIDEO

My girl, Megan, holding what used to be in my body...  Crazy!

I still cannot believe that this catheter when from the large vein in my upper arm, through the Subclavian Vein and stopped just above the Superior Vena Cava.

Taaa Daaaahhh!!!  All gone!

Once they pulled the line out of me I was given my certificate of completion and a Mickey Mouse dance...  I "graduated" in the infusion room and everyone cheered for me!  WOO HOO!!!  I think they were a bit jealous, though. 

I was so glad to have it out and to know that I would be able to take a normal shower again.  No more dangling tails.  No more rashes.  No more blisters under band-aid covers getting ripped off and alcohol rubbed on them.  No more alcohol scrubbing sticks being rubbed at the site trying to remove dried blood out.  No more saran wrapped arms and no more medical tape being ripped off the skin of ends of said saran wrapped arm.  No more flushing lines.  No more careful cuddles with kids so they don't hurt the site.  No more laying a certain way so my line does not tickle my heart and make it flutter.  No more limitations on things like vacuuming, laundry, and lifting anything over 10 lbs.  I'M FREE!!!!!!!

I will be back in two weeks for a check up and will need to do another C. Diff test again since I am still having problems with that.  C. Diff. explained  (It's pretty much the bad bacteria taking over in your intestines.  After the course of antibiotics taken has destroyed the good bacteria it allows the bad bacteria like C. Diff take over.  It's deadly if not treated.  Thankfully they have test for it and we are on top of things.

This week has been weird.  I was so excited and overdoing it with bounds of energy.  Then yesterday hit me.  I was in so much pain and completely fatigue.  I managed to drag myself around the kids school for open house visiting 8 teachers.  Then I came home and crashed.  This morning isn't any better.  I have slept most of the day away.  

Tomorrw morning I will be starting my new antibiotics and will start herxing again.  I'm not really looking forward to it but know that I need to continue this in order to get better for longer.  It still stinks knowing I will have to do this every few years...  For the rest of my life...  Until there is a cure.  

I think I should change my middle name to Per.

Melissa Per Severance

GET IT??!!

Ha ha, I crack myself up!  I will HAVE to take this name on and have perseverance. I will need to attack this nasty bacteria and never let it get the best of me.  One year at our church's girls camp I was nick named Sister Severe.  I think that applies here as well.  I cannot tell you how hard it is to keep going.  For months I kept up this front about being strong and fighting this.  

Now after learning of another patient of Dr. Shah, who was in remission of Lyme, had her Lyme come back...  I felt the weight of knowing this won't be the only time I will have to do this has set in.  The thought of having another PICC line someday or even a Central Catheter...  Of going on another round of antibiotic treatments.  Of Herxing all over again...  I was upset thinking all about it.  Every day taking pills upon pills to keep my body going in between.  Of having to manage in between treatments.  I really shut down thinking about it.

BUT...  Let's not dwell on that!  I am alive and if one day I woke up with no pain I would think I was dead!  So every day I find one goal to accomplish and if I do then it is a success.  One goal out of the norm.  Like today I'm doing the dishes, or cleaning one bathroom, or making dinner, or writing in my blog.  Yesterday I actually accomplished a lot!  I am paying for it today but that's ok.  I have no where to go!

I know I that I still have a lot to endure and I will learn great things from it.  I am thankful I am not alone in my journey.  I am thankful I have a great support system, for it would be very difficult to want to go on some days.  Thank you...  You know who you are!

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.  

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.

Problem solved... Sort of.

After infusing today I stopped by the front office to ask about my prescription refill for Tindamax or if I was going to need something else.  The lady's response was...  Dr. Shah said you don't need it anymore.  

I didn't know what to say. 

All I could think of was that I am still herxing....  Which means it is still killing the Lyme.  Taking me off slows the treatment.  So I guess I'm on a break until Monday when I can meet with Stephanie.

Tomorrow morning is my last day to take the remaining pills I have and then I wait...

Week 5 done.  Starting week 6 tomorrow...  I bet anything they stop my treatments Monday and say that is all he can provide for me...  Because of the CDC.

I wish I had the $7,000 per week to go to Envita...  Or some place like there. 

My immune system is still shot, I'm still herxing, and still have a lot of Lyme symptoms.

Grrrrr...  I'm going to take a nap.  My head and joints are not liking my today.

Never ending herxing

I really am horrible at detoxing.  All these little buggers we are trying to kill are dying off and releasing all of their toxins at once.  It's too much for my body to handle. 

If I had been at Envita I would have been on a great detox regimen.  I need to figure this out before I go crazy from the herxing.

I hold it together for my kids and my family.  At this point I'm so tired of missing out.  All my responsibilities are still in need of my attention.  It takes 10 times longer to do anything but I try.

Just wish I could think straight...

Spiritual promptings

Three entries in one day! 

As I am lying here at almost 11pm, I can't help but feel a bit down from how hard today was to bare.  I had to skip my presidency meeting.  It really was an emotional time for me.  I am so excited to get back to something normal again.  Even when I discontinue the IV meds I will still have to take it one day at a time to bring my activity back to what it used to be. 

I still have to have my sinus polyps removed and that's another week to two weeks rest.  I cannot have the surgery until my immune system is stable and I am a lot stronger.  I may wait until after my birthday in October so I can have a break.  My ENT said to me back in January to keep looking into why I'm sick but to not wait longer than 3 months before I have them removed...  Well, that wasn't possible.  So hopefully they haven't grown.  We are about 90% sure they will be benign.  Either way, a biopsy will be performed before the surgery... Both requiring me to go under anesthesia in the hospital.  My immune system must be be strong enough for the recovery.  Also, all areas of the head, especially the nose/sinus region are major bleeders.  That's why I must be better, especially with a low white, red and platelet count. 

So, back to me having an emotionally hard time today.  It was the hardest missing our meeting.  It is SO frustrating not being able to go.  I want to be there very badly.  I know I have an amazing group of sisters in the primary with me and are running the show while I am gone.  They are amazing.  I am truly thankful to each one...  I am inspired, blessed, and feel the love each one has for their calling.  I am nothing as a president without them. 

As I lay in my bed, wishing I was there at the chapel instead of here in pain...  I said a little sobby heart-felt prayer.  Nothing big or formal, just a plead to Heavenly Father.  I really needed cheering up.  All I asked for was that my great friend stop by after the meeting to say hi.

After I pleaded this I was swept up in mommy duties, (which was basically me telling my younger two to stop being loud and playing on my bed since it was making things worse for me,) and never thought to call her to ask to come see me.

My husband was picking up the older two from their church activities and they always beat daddy to the door, knocking on the window.  I hear a knock and tell my younger two to let in their brother and sister.  My daughter yells out, "Mom!  It's your meeting!"  I'm thinking she is crazy and I ask her who is it.  She repeats her original response and I then say it must  e someone from the meeting or from church.  Thankfully it was because one of my two opened the door.  (Yikes!)

It was a prayer answered!  There from my bed I could hear my friends voice!  I couldn't believe it!  I yelled out for her to come into the bedroom.  During our conversation she told me that she had drove toward here but didn't have anything to bring me so she kept going past.  She aslo expanded that something made her turn around and stop by anyway....  (can you see the tears in my eyes right now!)

I am thankful for so many blessings in our lives.  More importantly I am blessed that I have so many friends who act upon the small promptings of the spirit.  We all are truly instrumental is Gods work and are one way God answers our prayers.  This prayer was small but big to me.  Very big. 
I pray that I may always live my life that I may be in tune to the promptings of the spirit so I may help answer the prayers of His children.  He truly does hear us!

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.