Sunday, September 9, 2012

Happenings


Dearest everyone who contributed to the Inanna House fundraiser.  Thank you from the bottom of my heart.  This has been such an amazingly hope-filled experience for the Lyme community and we couldn't have done it without you! And that makes me smile (a lot) and think of this picture of family and friends.  I look forward to keeping you updated as to Inanna's progress.


As for my own progress....we'll just say it's happening.  Never mind the speed and/ or flexibility, it's happening.  That dang Babesia treatment (aka Mepron) put me into a no holds barred regression this past spring - summer and I am happy to say that I am finally back to where I was before starting Babs treatment.  Sweet.  We are seeing some forward movement, so I am ever so slowly starting back on Babs treatment, but this time- no Mepron.......at least not for now.  Giddy up! (For the thousandth time.)  Maybe I should have a horse instead of Lyme Disease?  Just saying...

Wednesday, August 8, 2012

Spotlight: Inanna House

I recently learned about my new favorite cause and would like to bring it to light here on the ole blog:

It is called Inanna House - an inpatient, residential, holistic recovery center for Chronic Lyme Disease sufferers.

The idea of it is something that I have dreamt (probably a million times) about being a part of someday when I regain my health.  This is something I feel so incredibly passionate about and the thought of being a part of something like this someday keeps me fighting the good fight of this horrible disease.  Inanna House is still in it's visionary and fundraising stages, so if anyone is looking for a cause to donate to...... I've found one for you. ;) Here is the fundraising page: Help Inanna House Spread it's Wings

To read more click on - Inanna House


Highlights of the Vision for Inanna House
*The intention of Inanna House is to create numerous centers around the world as millions are in need of help.  Here are some highlights of what each of these centers (the first to be built in Sonoma County, CA) will provide.


  • A retreat style center with 24 private rooms with baths for in-patient stay, built on 14-15 acres of viable land.
  • 24 hour care and monitoring as patients undergo individualized treatment plans, incorporating all worlds of medicine to achieve optimal re-integration and healing, which would address each aspect of the individual: Mind, Body, and Spirit.
  • The Center will incorporate green energy to make it as self -sustainable as possible. (Good for the Environment, and lowers overhead costs, and thus, in turn, patient fees.
  • An in-house organic garden big enough to feed all residents and provide patients with a necessary "Clean, Alkaline Diet" to aid them in their recovery.
  • A $20 million dollar endowment fund for individuals who can't pay for treatment but desperately need it. (Not kidding..)
  • Fees that are on a sliding scale basis, and a "Give Back" Program so that those who have received treatment and recovered have the opportunity to come back and help give patients who are currently being treated hope, guidance, and support.  (Trust me, only Lyme Patients would be thrilled to have this opportunity. Why? Because they desperately wish they had someone to guide them through their own battle to recovery.
  • A program specifically designed to help care-takers understand exactly what their loved ones are going through and how Lyme disease and it's co-infections are effecting them.  This program will also give specific instructions so that care-takers will also know how they can help their loved ones recover.
The founder and CEO of this amazing vision is a nurse practitioner and energetic healer who has worked as a health care provider for over 30 years.  She is also author of the book Nature's Dirty Needle.  For more information please visit Inanna House

Sunday, August 5, 2012

Olympiration


Wanna know what I do for sport these days?  Wheel chair rides through Target, and arm chair gardening....

Who's enjoying the Olympics?! I know I am.  These games are especially inspiring for me this year and lets just say I/we can use all the inspiration we can get.  It is so nice to see something uplifting on TV.  Watching the London games is also taking me back to my sport and athletic days and reminding me about how much I learned through sports (one in particular) and how it has helped me to fight this disease.

Back in the day I was a competitive swimmer and I took it pretty seriously.  At a very young age, I may have had some olympic dreams ... (like most young kids who are passionate about their sport.)  I spent 10 years training 6 days a week for 2-4 hours a day. I wouldn't exactly say that I was an "elite" athlete, but I was trying to be, and had the privilege of swimming on an elite team with multiple swimmers who were ranked nationally and one who became an Olympian at the Sydney games in 2000.  In fact she won gold in a relay race.  I had an up close and personal view of the making of an Olympian.  The sacrifices, the discipline and the indomitable spirit to keep working harder day after day, especially during the times when you would rather stick needles in your eyeballs than go through one more grueling practice at 5am..  You learn many useful lessons while training at that level, many of which I believe are helping me to get up every morning and keep fighting until I beat this disease. I guess you just never know what life might be preparing you for.

Here's to all the Olympic athletes and dreams being realized.  And a special shout out to the Paralympic Games starting Aug. 29-Sept 9. You are beyond inspiring.

Sunday, July 8, 2012

Ozone Therapy

It's officially official- I'm on the slow train back to health.  But at least I'm on a train right?  Slow and steady wins the race?  I wish I still had my "Life's a Marathon Not a Sprint," shirt.

I was really hoping by now (19 months into treatment) to be more of a success story.  More of a "hey look at me, I'm doing so much better.... I know treatment is so tough, but you can do it and you will get better...too."

When I talk to people who are just starting treatment I try to use other people's success story's that I have heard through the Lyme grapevine and not my own.  Not yet.  When asked about myself I divert to "treatment is different for everyone and I know some people that after about a year of treatment they had a good chunk of their lives back, but generally speaking treatment seems to last 3-5 years."  How I am not on the 1-2 year plan still baffles me?  I guess I was/am much more sick than any of us could have imagined, especially myself.

 I definitely thought I was going to be one of those "symptom free after a year of treatment" types, well maybe not symptom free but at least back to a remotely functional life.  Hell, the functionality that I had the years before treatment sounds great (except for a few isolated years in there.) Yeah, those years were bad.  However, treatment has been painfully slow going.

So if you couldn't tell from my last post, I've been feeling a tad down about my lack of progress lately.  Things have just been really stagnant.... I need to treat Babesia, but I can't seem to tolerate treatment for it.  It's extremely frustrating.  After being sick this long, it's the stagnation that will get you...... which is why I remain stagnant no longer!  I am trying a new therapy in addition to my regular treatment protocol.  I am doing ozone therapy treatment and it is giving me hope.

Loving the pink room
It is also a pretty cool process.  They take out 100cc's of blood and mix 100cc's of ozone in with it and then my ozone-ated blood runs through an ultra violet light machine before entering back into my body.  I am doing 10 treatments 2 times per week, and so far (dare I say)..... I am noticing some positive results.

The principle behind this therapy is that pathogens (such as viruses, bacteria, parasites, cancer cells etc) cannot live in an oxygen-rich environment.  They are anaerobic micro-organisms meaning they live in the absence of oxygen.  Ozone therapy helps to oxygenate the cells in the body making your body a less desirable host for pathogens.  At least that is how it was explained to me.....


Here is an article - 13 Major Effects of Ozone Therapy on The Human Body, by Dr. Shallenberger

To learn more about ozone therapy check out- Oxygen Healing Therapies 


"Most people think of ozone as a pollutant in the air we breath that is toxic and a byproduct of our internal combustion automobile engines. When inhaled, ozone is irritating to the airways due to its oxidizing effects. However, when injected into the body, ozone is remarkably effective at stimulating healing processes and relieving chronic pain. Ozone is found naturally in the body. White blood cells make it as part of the immune response.  Medical grade ozone when used for ozone therapy per established medical guidelines has a safety record second to none." - Randy Ice, P.T. and David Mitzner, D.O.


Thursday, June 21, 2012

Dig Deep

Here is a picture of one of the last times I didn't question my ability to do physical activity.  It was a time when I did not wonder how sick something would make me feel or how much it would set me back?  I guess this picture is literally one of the last times that I lived my so called 'old life'.... (not a bad way to go out right?)  It was a life where no one questioned my laziness or craziness.  Okay, actually I think my craziness has always been in question..... just not by people in white coats.  It was also a time when chronic illness wasn't even a figment of my imagination, neither was the ridiculous journey that this disease would take me/us on.  This picture was taken almost 8 years ago with 2 very special friends and I am 99.9% sure I had Lyme Disease and Babesia.  However, the symptoms were just beginning to rear their ugly head.

Their is a part of me that can't believe I ever felt well enough to do such things.  On the other hand, it is harder to believe that I can't go out there right now and hike in the mountains.  I miss those activities everyday or at least the freedom of knowing they're available to me.  And although I am happy for all who are able to partake, sometimes it is a harsh reality to be reminded that the world is continuing on, as usual... without you.  Even if that world is a magazine delivered to your door step filled with models selling athletic clothing.

So yes....I got a tad angry while browsing through an Athleta clothing magazine the other day.....  I think it was just too much in my face at once. People doing fun outdoorsy things.  Summertime.  People doing fun outdoorsy things that I used to love to do.... that I haven't done in 7.5 years.  Summertime.  It made me want to pretend, even just for a couple of minutes that visiting with a few friendly neighbors isn't the new triathlon.  I miss feeling my heart race from things other than anxiety attacks or palpitations. I miss how good it feels to kick your own ass at something......swimming, running, hiking..... hell, walking.  I get plenty of ass kicking.... just in a much different way.

Basically, what I think I am trying to say here is- I want to kick my own ass.  Does that make sense? All I know is I am sick of Lyme and Babesia beating me up.  I would like my turn..... at life, or whatever that may be.  But I am once again having to dig deep and find more patience, more hope and more strength to keep fighting this fight.  Funny, I thought I had dug as deep as I could go about  5 years ago.... boy was I wrong.  It is amazing, the things you can do when you don't have a choice.

Monday, June 4, 2012

Mutant

The first time I met my doctor, I was so sick and uncomfortable that about 10 minutes into the meeting I burst into tears and laid down in a ball on the rug in his office mumbling something along the lines that I was too sick to do this...."this" would be sitting upright in a chair having a conversation.

It was also the first time that I "lost it" in front of a medical practitioner.  Usually the adrenaline that it took just for me to be "out n about" masked such episodes until I relaxed at home.... and then at home, the wheels would come off. But I had reached the end of my rope and unraveled right there on his oriental rug.

It was a really good thing, because he saw how sick I was and reacted with compassion and respect for how I was feeling.... something I wasn't used to.  When I was ready to resume the meeting, I stayed on the floor and the 3 of us discussed the possibility of me having Lyme disease.  I thought he was crazy for thinking I had Lyme.........I didn't know any better 

At my doctor appointment last week, I was pretty close to having a sequel.... and apparently doc could tell.  He immediately gave me a giant IV bag of saline to help hydrate and flush toxins and also a double dose of Glutathione, it helped a lot.

We came up with a new plan of attack.  The short of it is-  No more Mepron, (at least for a little while.....).   Instead, we are going to try Artemisinin, an active constituent of the herb artemsia, or sweet wormwood.  The hope is that this will ease me into being able to handle Mepron...because that is the ultimate goal.  Apparently my Babesia infection is just too abundant to handle Mepron right now.

Speaking of bountiful Babesia infections, apparently I have the highest count he has seen. 

We also learned that I have an inability to rid my body of toxins efficiently.  This is due to a genetic mutation called MTHFR.  This is a big deal when it comes to Lyme treatment and it's effectiveness.  As the antibiotics kill the bacteria they release toxins into the body and apparently, I keep reabsorbing them.  The good news is that technically it is an easy fix by taking folic acid and B-12.  The bad news is that I have been on folic acid and B-12 from the beginning.   We are trying a new non-synthetic folic acid that will hopefully work better.

I am just beginning to learn about MTHFR but it sounds like a pretty easy test to run and a really good thing to know with Lyme treatment or in general....

Here is one article that I found on MTHFR.  All I know is that I have a 1-800 number to call a genetic counselor.  Thank goodness, J's cousin happens to be one....


Tuesday, May 29, 2012

Tour de Doctor Visit

Well, I made it.... but just barely and I definitely left a trail of green boa feathers in my wake.
I have a tendency to try to do more things than my body can physically handle (human nature?), when I am feeling halfway "decent," or when dreaming up near future plans of what I think I can do.  I blame adrenaline, disillusion and genes.  Shoot, IF you muster up enough adrenaline you can mask all sorts of symptoms and rest warning signs, but it is VERY temporary and their is a little thing called- aftermath and it's a bum deal.

Don't get me wrong, their are also days where no amount of adrenaline could get me out of bed and I am pretty sure that if the house was on fire, I wouldn't be able to make it out.

Then their are times like last week where I mustered the adrenaline to do a little Tour de Doctor Visit to VA and Company.  Which included flights in Ms Ella- (loaner from a generous co worker.)  Here was the plan.... I'd lower my doses drastically and we will do this:

*note- plan is a very loose word these days

Stop 1- Cincinnati for gas and most importantly to see my sister and her family at their new home including our 3 year old nephew on his birthday and almost 1 year old Matthew!  We'd stay a few hours and eat lunch and visit.

Stop 2- Syracuse where J will drop myself and Zoe off while he leaves for a few days. J's sister and family will meet us there for a night, other time in Syracuse will be spent resting and being spoiled by my mother- I was definitely not feeling so good. 

Stop 3-  Leesburg Airport in VA to stay with friends and see doctor.

Stop 4- Cape Hatteras for a few nights to hang with friends at a beach house.

Stop 5- Knoxville, TN to visit dear friends and meet their latest addition to the family.

Stop 6- Home

Really? What was I thinking?  Disillusion. Sometimes I just want things to be better than they are.  Problem was I used up most of my adrenaline before even making it to Stop 1, because I was so stinkin excited to see everyone and any type of travel is very hard on my body- I don't leave the house much, let alone the state.  I spent most of the 1.5hr visit in Cincinnati in vegetable-like state on the couch.  Same thing when I got to Syracuse and Leesburg.  Stop 4 and Stop 5 were cancelled and I am home now recovering.


However their were a few moments of functionality....
 







And the doc appointment was great.  Perhaps I will write more about that on the next post.