I'M ALIVE!

This will be a long post.  I have felt impressed for a while now to give an update and assure all of you readers that my absence has been because I AM ALIVE.  That means I am BACK! I love being back.
I can finally be a complete mom, wife, friend and functioning part of society.

Since that day 2 1/2 years ago when I did the "happy-dance" in my kitchen, shouting, "I feel good-na na na na na na naa", I have only had 2 minor setbacks requiring treatment.

I've been in "remission" from Late Stage Disseminated Lyme Disease now and various co-infections and disorders for about a year and a half.  What that means is symptom free for 1 1/2 years...

Don't be fooled by the face of Lyme Disease!  If you'll recall, the picture I first posted of me when I had full-on Lyme symptoms is for all intense purposes the picture of health (from the outside).  Lyme disease victims often look well, but are dying on the inside.

The last symptom to leave me was eye pain. You might be thinking- okay.. I could deal with that.  Eye pain with Lyme is the feeling of having your thumbs pushed firmly on your eye balls.  Try it for 10 seconds and then live it 24/7.  Not fun.

Symptoms I still get now and again:
Fleeting numbness on my face and pelvic floor, occasional numbness in my legs, arms and hands and  headaches.  My diagnosis of  Lyme was Neurological- so even though I know the bugs are still around, I expect them to show up where they left off.

Consider that since the end of 2006 I was chasing daily infections like a wildfire throughout my body- UTI's, ear infections, headaches, severe exhaustion (after a full nights sleep and 3 hour nap), stuttering, unable to sustain my weight, unable to walk without holding on, confusion, dizziness, no appetite, numbness. With no diagnosis, I was left to continuing chasing and chasing bugs.

How do I know I have turned a corner?
While there are no guarantees with a disease like Lyme, last weekend, I was on my feet for 8 hours making and serving 20 batches of homemade soup for a large function of 200!  No nap. No rest time. No symptoms.  I did this two weeks in a row for 2 separate functions!  Although I had wonderful helpers at the functions, two years ago, I couldn't have made even a small meal for my family of 6.  I couldn't walk to the edge of my driveway to get the mail.  I was just too tired and weak to do it.  I have also been walking again. I am up to about 15 miles a week or 3-4 miles every other day.

What have I done now that works? 
My regimen now consists of a "small" pile of supplements in the morning including:
Thyroid-prescription
2000mg Vitamin C
5000mg Vitamin D
probiotic
Max Gxl-product I distribute:  www.max.com/255092
Cellgevity-product I distribute
ADR- Pure Encapsulations
Eating healthier
Sleeping better
Taking a personal inventory daily

At bedtime I take an even smaller "pile" of supplements:
Calcium
1000mg Vitamin C
HRT
primrose oil

What I wish I had done and sooner:  
I have an amazing doctor!  Dr. Dee is patient and listens to her patients.  So much so that stubborn me got away with "doing it my way" until symptoms I had spun almost out of control. The number one thing I wish I would have done: start Lyme treatment sooner. I could have been better sooner and avoided a lot of cost and time.

What has contributed to my wellness:

• Sleep:  I finally allowed myself adequate rest- daily.  I slept in as long as my body needed it and took an afternoon nap for as long as my body needed it.  Sleep is key to wellness from Chronic Fatigue, EBV, Adrenal issues and of course Lyme.
• Daily Hydro-therapy: Hot showers followed by cold compresses, hydrogen peroxide baths, Epsom salt baths, saunas. CAUTION: DO NOT USE THIS THERAPY unless you have consulted with your physician.  Hydrotherapy is a fantastic detoxification method- so much so that you may not be prepared for the "die-off".
• Supplements: take what your body needs, but be reminded that Lyme is a tricky and will suddenly and without warning disregard what "has always worked".  Be flexible.  the 2 supplements that I continue to take that WORK are Max Gxl and ADR.
• IV Therapy:  Had I not started IV therapy at the aggressive rate, when I did, I can't say that I would be alive today.  My body was just not responding to the supplements that I was taking.  I wasn't getting better.  IV therapy- 4 days a week worked.  I did this for 6 months.  I was also taking 6 oral antibiotics at the same time.You really have to flood those bugs!   AGAIN-  YOU MUST CONSULT WITH YOUR DOCTOR before trying any of these therapy methods.  

While in IV therapy, 2 of my dear IV- friends passed away.  Lyme disease is destructive.  It kills a person from the inside out.  Cells have no power because Lyme takes them over in populations that flood the body.

I am alive!  I love my Life!  I love my family for believing in my ability to recover when I had lost all faith.  

I love them for supporting me when I didn't "look" sick, but couldn't get dressed for the day or brush my hair because it took too much energy.  ( I used to sit on the edge of the bathtub to dry my hair because standing took the breath out of me!)

When your body and mind are sick, my advice to you:

1. Get a doctor: One you can trust.  One that will listen to you.  Do what they say. Don't be stubborn.  Be patient and get on the path to wellness.
2. Patient means: willing to drop everything from your plate of "to-do" to get well.  I mean everything!  YOU are your first priority. (Ya- try telling that to a type A person!) That's why I didn't get better sooner!
3. Find a support group- if you have the strength to attend.  
4. Keep up with friends and  family. You will be well again, my friend.  You will need them again, and they will need you.
5. Accept help- housecleaning, meals, running errands, taking care of kids.  This is no time to be a martyr.
6. Be True to yourself and recognize your limitations.  That's all I need to say about that.
7. Pray- Keep up your faith.  God will help you .  Trust in Him.

I have my life back.  Not sure how long it will last, but I am back.  I am full of gratitude.  I can honestly say, I did not anticipate ever recovering to the extent that I have.  It is a miracle to me.

Lyme Disease is mysterious.  It affects people differently and there is no 100% guarantee that any methods will cure you.  I know that I still have residual Lyme Disease, but I am so on it.  

Bye bye Lyme.  I hope I never see you again.

Lyme Bites and other Sad Tales and Farewells

• I walked into my doctor's clinic today only to receive the bad news. Johnny died. No Not Johnny, I thought.  So unfair.  I recently wrote about him in my blog- We were IV roommates.  Lyme really bites. When I left the clinic the words that came to my mind were- "Johnny goes marching home."  I know that without a shadow of a doubt that Johnny will be welcomed home and will talk and walk again.  Bless you Johnny.  You will be missed.   

• Other sad news- my sweet friend Sarah passed away on Friday.  A more amazing woman would be hard to find.  She suffered for the last 2 years with Multiple Myeloma. Her wonderful husband and 6 beautiful children will be most at a loss not seeing her smiling face and feeling her daily courage.  I will miss my dear friend and I have a lump in my throat and tears in my eyes just thinking about her. Good bye sweet Sarah.  The Heaven's welcome you and you are now in our Father's arms.

• Even though I am in treatment again, I know it will only be a short time.  I have been blessed.  I thank my Father in Heaven daily for my life, for my family and friends. 

• One of the things I am most thankful for is Max.  It has given me a chance to live again.  Please have the courage to try it for yourself. www.max.com/255092 

  

Blessings to you for a marvelous day.  It's a great day to be alive!
To Wellness,
Maryalice
 

 

Lyme Protocols and Other Daring Adventures.....

     I recently returned from the "happiest place on earth" where smiles are plentiful and high adventure reigns, especially for those of the roller-coaster variety. My own children thrill in multiple turns on a ride entitled "California Screamin". The name says it all, and this ride is definitely not made for the weak in stomach. My high adventure in Disneyland usually begins somewhere between the Carmel apple shop and the ice cream parlor- often twice in the same hour. Whoohoo. 

     My experience as a Lyme patient over the last 4 years might well qualify me as a high adventure type. Those of you in Lyme treatment know what I am talking about. And for those that experience considerable die-off, that might be a weekly, daily event or hourly event. Outlined below are some treatment protocols for Lyme disease. I have starred the ones that have worked for me. I would love to hear what works for you.  Please comment on my post.

 Lyme Protocols- some I have used, currently use, tried or discarded.

1. Salt and C- flooding the body with high doses of vitamin C and sea salt has proven to be one of the most natural and least expensive protocols around, with perhaps the greatest amount of die-off. I have a friend that swears by this method and claims it cured him.  He says the die-off was considerable.
2. Rife machine (device)- many lymies use this device as more of a gage at how they are doing than an actual treatment, although it can both detect supplements which are effective or not for your body as well as send off high frequencies that apparently kill off Lyme spirochete. I have many Lyme friends that use this device religiously. Hey, we do what works.
3. IV and oral antibiotics- Proven to be effective in killing large populations of Lyme over time. Best to be aggressive with treatment but not allowing die-off too rapidly. I have had great success with this form of treatment. It is expensive and destructive on the body. but hey what is worse- having Lyme, or treating for it? I guess that is a trick question.**
4. Bicillin shots- generally speaking, these work quite well for some. Personally speaking and by experience, I would rather hook up to IV daily than be stuck in the butt daily. Just saying. IV tends to be quicker in getting higher doses of antibiotic in and working. I have several friends that use shots eeffectively. Again $$$.**
5. Naet method muscle testing and elimination of Lyme by stimulating the body with a vibration while holding a vial containing spirochetes. Seems a little hokey, but we all have to start somewhere. Have tried this method, similar concept to Rife machine.**
6. Acupuncture- needles and pins. Dare I say more? Tried but wouldn't bet my life savings on it.
7. Hydrotherapy- super effective for toxin release. We all have toxins, but in Lyme treatment this process can be extremely helpful in elimination of large spirochetal toxins during die-off.**
8. Sauna- see above.**
9. Supplements- yeah, we all take them, and some are better than others, but as stand alone treatment. no way. You've got to kill the bugs.**
10. Hydrogen peroxide- super effective detoxifier. Pour in bath, or take in IV. Inexpensive with great results added to any protocol- but not a stand alone.**
11. Epsom salts- pour a couple cups in a hot bath. Follow with hydrotherapy. Effective, inexpensive detoxifier. Not a stand alone.**
12. Essential oils- Much to consider here.  Oregano and Frankincense- must look into this.*
13. Max Gxl- Glutathione Accelerator-This has perhaps been the best product overall for helping in a natural way by enhancing my wellbeing, energy, brain fog, focusing, pain, and deliverance from the evils of LYME.  Please check it out here and order it wholesale from my site:  www.max.com/255092  (and a special nod to Annie for telling me all about it.)

Do you have other ideas?? Let me know!

The Tick Wins

So, I am going back into treatment. I had a feeling it was coming, after the last episode of swallowing,tongue and speech issues. Part of me wants to treat it like taking out the trash, or giving someone a ride to school, you know, no biggee, but deep inside, I know it means so much more, and that's what I am grappling with.
 
Why do I have to analyze every aspect of my life? 
You know, it is what it is. 

Treatment to me means:

• My life is not my own- I will have to go along with the whimsies of the meds
• My children and husband will have a new mommy for a while- which incidentally means a messier house, with less home-cooked meals
• Some people won't GET it- I mean I will hear.. "I thought your were over that thingy- what did you call it...Lyme?"
• Die-off
• Probiotics and stomach aches
• Bloating
• Lots of PJ days- hmm...that might be kinda nice for a change....
• $$$
• Defeat- hmph... defeated by a minuscule little tick
• Can you think of anything else? The list goes on....

That's it for now.  I will fill you in when the fun times begin.
To wellness,
Maryalice

MY LYME FRIENDS

Four years ago I didn't know what Lyme disease was, let alone that I would have Lyme friends, or lymies.  In the world of Lyme disease, I suppose it is much the same as the world of any disease.  Those that you meet within your circle of recovery become your friends. 

On any typical treatment day, I might sit in the IV room with C, S or J one day, or K and E the next. We all had a story.  We all had been bit at one time in our lives and some of us didn't even know it. Most of us had nothing really in common except being bit.  Some of us had IV's with 2 grams of rocephin, some were just getting started with 1 gram.  Some had DMSO mixed in  and smelled of tomato juice or garlic.   Others came for a bit of energy and got a Myers Cocktail. We all knew what we needed and we all wanted out of there and done with Lyme as soon as humanly possible.  None of us had anywhere to go. All of us had been robbed of our lives. 

Some had IV's wrapped in foil to preserve the ingredient.  Others had chelation drips, Vit B or C drips, or Hydrogen Peroxide drips.  Some got stuck 2 or 3 times, if they couldn't find an unused vein, or if they just needed 2 different drips.  Some brought home-movies for the 2-3 hour wait- others music. Many came and hooked up for a much needed nap.  There were lavender and flax seed hot packs, camouflage band aids, rubber tourniquets and plastic surgical tape.  Some lymies had babies at home that in turn were infected with borrelia. Others were business owners, husbands, wives or parents that used to have a life. Some couldn't be understood because their speech was affected.  Others had rashes or couldn't walk.  Some were 16, others 50 but looked 80. 

One of my favorites was J.  He shuffled in, slumped down in a rocker-ankles the size of tree trunks. His knees and hands rattled away. He chatted to me in garbled phonemes. Turns out that he was diagnosed with Parkinson's originally, but his treatment for Parkinson's by another doctor only exaccerbated the Parkinson's. Five years ago he was a regular guy working in a mill.  A simple lab test discovered Lyme Disease, and now it may be too late to turn the ship around.  Progress is slow.  One IV at a time. ((update... Johnny passed away from Lyme...)) 

One day I met the mirror of my new life.  I sat there, hooked up, staring at my Lyme friend that had Lyme induced ALS.  His speech was limited, due to dysphasia- impairment of speech due to neurological brain damage. His gait was slow and shuffled.  He looked at me with his tender eyes, unable to speak and I just wept. ((update... Ernie passed away from Lyme...))

There are lots of Kleenex's in the treatment room. 

I love my Lyme friends.  I know they will always be there if I ever need them again.

Shutting the Door to Lyme--- Forever?

I stand behind a heavy door that reaches to the top of the universe, ready and more than willing to slam shut the illness that has racked my body for the past several years.
Questions come to mind:

• What do the little twitches and random numbness in my cheek mean? 
• What about the bouts of fatigue?
• Is there really such thing as remission with Lyme?
• What if I get bit again?
• Will I ever be 100%?

Knowing most of the answers,  I resolve to do what I have been taught to do:

• Keep my chin up and continue to pray.
• Count my many blessings.
• Keep my covenants and remain faithful.

What else can one do?  As I reflect, I seek for answers in my journal and realize that I am much further along than I expected, and for that alone, I rejoice. 

Journal dated December 5, 2009:
It has been almost 1 1/2 years since my last entry.  It has pained me to write, as I really do not want to actualize the words that I must write.  As the days and years have gone on and I see the purple edged spine of my lonely journal, my insides groan and I resist.  Why do I resist?  I am a coward, I suppose.  Perhaps by writing, I will reveal things I don't want to believe myself, however, time is of the essence, so to speak and I must write now, before the time may come that I won't be able to anymore. I am scared.  For the 1st time in my life, I face the fact that the keys of mortality are jangling in front of me and I am simply not ready emotionally to face that.  But, come what may, it is a fact of life, that God gives it, and at some point is taken from us.  But thank the Lord for eternal life, and eternal families.  How grateful I am for that.  My health has taken so many twists and turns but continues to decline, as I see it.  In 2005, I was vibrant, active, and healthy and walking 15 miles minimum a week, organizing conferences, writing a book and homeschooling successfully, I was primary president, I had life wrapped around my finger. Today, I am sedentary, my speech is slurred, my tongue is numb, my throat won't swallow, I can't remember things and I say things backward, use the wrong words for simple things, have labored breathing and am unable to participate in activities, exercise or organizations.  I can't lead or take charge of most things.  My gait is unsteady, I have no appetite, my eyes hurt and sting and I can't see when I get up.  I am taking about 25 products to keep my brain healthier and being treated for late stage disseminated Lyme disease, Epstein Barr Virus, chronic fatigue syndrome, a bacterial infection in my lungs and now my symptoms are manifesting ALS.  More than anything I want to be well again.  I want to raise my family, be a wife to my husband and live. I will try to be positive and happy and keep a good perspective. It is scary.  The things I read aren't good and the prognosis is awful.  There is no cure.

I am turning the knob now............

My Lyme Rollercoaster

This past year has been quite the rollercoaster ride, and I hate rollercoasters.   I have been in treatment for lyme disease for the past 2 years and  many days I felt like I simply wasn't going to make it.  I thought people thought I was just faking it.  My body was not my own and somedays, if it weren't for my children and husband, I wanted to die. I can remember one night, really late, laying in bed and thinking about my life, and the quality of my life and trying to swallow, and it was so hard to swallow!  I started to cry and it was one of those uncontrollable cries. I couldn't stop crying.  I wondered if I might not be able to breathe through the night- what if my tongue got stuck in my throat because it was so numb?  My sweet husband just held me and stroked my hair.  We both had a good cry together in the middle of the night. These are the memories I have from this dreaded disease.  The following are some lyme notes that I kept when my symptoms were at their worst and manifesting ALS- Lou Gehrigs Disease.


11/18/09 through 12/10/09  Dysphasia, tongue numb, balance
12/12- dysphasia, tongue numb, balance, foot falling asleep, fatigue 
12/14- 1000mg IV - after IV felt good for a few hours
12/15- Tired, slow, tongue swallowing issues
12/16- good day, IV in afternoon, Tired but energetic; balance improving
12/17-12/23 IV's daily
12/22- swallowing issues coming back, balance poor, fatigue
12/25- nap 2 hours, balance, tongue tingling, swelling, thick, swallowing issues back
12/27-balance, eyes sore, fatigue, nap, yeasty, swallowing issues
12/28-severe headache,right shoulder pain, fatigue
12/29- arm hand stiffness, balance poor, fatigue
12/30-swallowing slow and numbness bottom/back of tongue , balance, fatigue
12/31- tongue tingling bottom and back, balance poor, legs sore and stiff


This continued until Feb 1 when my balance was restored!  No more walking around holding on to things.  The following 5 months consisted of IV's 4 days a week along with 5 other oral antibiotics.  My last IV was May 19th.


I Hate Lyme Disease, but dare I utter that I am getting better?