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.

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.  

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.

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.

PICC line problems

AUGH!!!!!!  My skin irritation is spreading towards the wings of my PICC line.  I have used up a tube of Neosporin in two weeks and a box and a half of gauze pads.  I used so much ointment that it is slowly releasing the clear bandaid and the smaller clipped wing.  WHICH is causing the tube in my arm to pull in and out. 

OUCH!!!!!!!!!!!!!!!!

Good thing I am seeing the Dr in the morning.

Low immune system problems

Low immune systems come with many complications.  Fighting off a virus that your body naturally can handle, healing wounds and total body health are just not being taken care of efficiently. 

Earlier in the year I had an infection in my belly button.  It wouldn't go away no matter what I did.  Finally I was on a bit of antibiotics and it eventually went away.

I had mentioned earlier in another post that I had contracted two other secondary infections and because of a low immune system my body could not fight them off.  Many people have various infections and they never know they have them because your immune system keeps them at bay.

Last week I developed blisters under my clear bandaid cover.  We placed another cover a week later and kept it off the site.  Another week past and it has only grown.  Nothing covering it.  My nurse clipped a wing to place another covering over my PICC line, this time with sensitive tape.  I am not getting blisters under the cover, thank goodness, but the original site is growing. 

I keep cleaning it, using ointment, changing gauze...  The infection is spreading and it hurts so bad.

Thankfully I meet with my doctor on Monday.  This is annoying!

I'm thankful it has not spread to my PICC line.  I'm thankful that I have means to maintain it until my immune system is back up.  Lyme will always attack it.  I will be alright as long as I stay out of the hospital, keep fighting, and have high spirits about this battle... As well as many priesthood blessings!

They clipped my wing...

It was done...  Blisters were getting worse and we had to do it.  My wing has been clipped.   :)  Now, my skin can heal at last!  Woohoo!

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!