Update from Molly
I know this is long overdue....
Here is my update and will try to answer questions along the way
As always feel free to ask away...
I keep a daily journal still but have neglected it horribly...
This happened when I had my BIG remission in 2005. I stopped journaling too.
dhearns90 and Patrick aka Hubcap_halo
I will try my best to answer your questions!
1) Aside from attending Cheney's lecture, were there any other resources you found particularly helpful in learning about the Stem Cell infusion process?
Cheney's lecture was the stepping stone for me to begin research.
I always knew that stem cells were a very viable cure since 2001.
I come from a family of with alot of Dr.s knowledge. One of my dads best friend is a ID specialist and begged me to try the stem cell process. Do your homework. There are alot of shady establishments out there. Stem cells were NOT something I took lightly. I researched for a long time
Learning about the CD34+ (plus) and mesenchymal stem cells..or MSC as I refer to them. They have many properties that are different from your OWN stem cells. I researched how Cord Blood Stem Cells can help Chronic EBV and many other viruses. They also build many NEW things in the body...new blood vessels and clean out the gunk in your brain, like a mini roto rooter. ( at least definitely did so in my case.) That was the first place I felt them.
I did not have the mini lipo with my own cells as the docs in Costa Rica did not find them to be the right fit for me. The mini lipo and intrathecal MSC's work WONDERFULLY with the MS patients there.
You can also talk to the doctors there in Costa Rica...they are VERY blunt about the process. They discussed reinfection of the new cells, which was my big concern..."highly unlikely if you get a better immune system going" and that's what the Cord Blood is for, to help kick start your immune system.
I probably talked the ear off of 2 doctors down there. BUT it is YOUR body and YOU make the ultimate desicion.
Read and scour the internet. Look up any concern you have and write it all down and discuss it with your primary doctor in the states (if he/she is understanding or agrees to help you) if not then discuss it with the Dr.s in Costa Rica or Panama whichever place you go.
Don't stop researching until you are ready.
2) 90 days on my gut....there were many things I did for my gut, colon and bowels. I use products from Dr. Schulze's Intestinal Formula #1 and #2 and Protect and a few other products. This is NOT meant to be a promotion for his products I just have done so well with them, so I am sharing
and the ingredients I put out there so you can see what you're getting yourself into!
Formula #1 PROMOTES regular, healthy and complete bowel movements STIMULATES and STRENGTHENS the muscular movement of the colon.
Herbal Ingredients: Curacao & Cape Aloe Leaf, Senna Leaf & Pods, Cascara Sagrada Aged Bark, Oregon Grape Root, Hawaiian Yellow Ginger Root, Garlic Bulb, Habanero Peppers
Formula #2 is a POWERFUL intestinal vacuum that draws out old fecal matter, toxins, poisons, bacteria, drug residues, mercury and lead A STRONG anti-inflammatory and SOOTHING agent.
Herbal Ingredients: Flax Seed, Pharmaceutical Grade Bentonite Clay, Apple Pectin, Activated Willow Charcoal, Marshmallow Root, Psyllium Seed, Slippery Elm Bark, Peppermint Leaf , Cayenne Pepper Blend
THIS IS WHAT I USED WE ARE ALL DIFFERENT...
And a "PROTECT" pill a day that has herbs used to "protect" the heart, liver and brain Contains the three most POWERFUL herbal antioxidants Herbal Ingredients: Hawthorne Berry, Leaf & Flower, Milk Thistle Seed, Ginkgo Biloba Leaf, Antioxidant Complex: Palm Fruit & Acerola Cherry, Botanical Circulatory Complex: Habanero Pepper, Ginger Root & Garlic Bulb.
Another thing I found to be great was a product soon to be released in March April 2010 in the US... MUTAFLOR....Its expensive but great. Hard to get it to the states but that should be changing soon.
Do research on Mutaflor AND Escherichia coli Nissle 1917
try to also review what probiotics/Mutaflor do with NF-kB...AMAZING.
I also took 2 other probiotics. And used a swish solution Dr. Shulze's Tooth and Gum...which to me is the first line of defense for your mouth.
So....I worked alot with my gut. I think I said in a previous post that one of my docs in CR ( Costa Rica) cured himself of Chrohns. He gave himself a IV of Cord Blood Stem Cells and ....viola!
Also if you do any gut testing (GI(2 ask your dr. everyone is different) you will inevitably find CB stem cells CLEAN UP THE GUT.
3) Finally - one of the worst problems I (and probably most others) have with this disease is the inability to do any intense exercise without crashing for weeks. Are you currently able to do hard exercise without fearing a long crash?
Aaaah...yes. I could do some hard or intense exercise. BUT I DON'T.
I went down that path a long time ago. I encourage everyone to do what THEY want to do for exercise. I myself, find that now walking the dog for 45 minutes and throwing balls and sticks and hiking slowly next to her on high inclines makes ME happy. I am not interested in running the 5 miles a day that I used to too. I broke my body once. Never again. I enjoy the feeling of not being "sick" too much to change that. I did do 2-5 mile hikes and camping before during my remission and probably could work up to that, but it is a fine balance. Only your body knows. I do some sit ups and arm
movements with push ups and my lower body I let the terrain and my dog predict. I don't really like the idea of HARD exercise for me. Younger people ie. under 30 I think could deal better with HARD exercise. Notice how I preface it by "deal better with hard exercise". The only question I ask those persons that have asked me is WHY do you want to do HARD exercise?
Why not gentle stretching and walking? Believe me I played tennis, big swimmer and ran and worked out like a maniac. I understand wanting the body to "perform" but I'm not ever going to compete in the Olympics...so I just live life and move at a pace that suits me. AND I do not suffer.
I get my heart rate up, and little by little I can do more.
Also remember I am not 100%. BUT I am doing even better than my last update.
I am also (as always with this whack illness) doing differently. I can get up in the morning without any problems. No dizzy no fog etc. I start my chores LOL! and keep moving and going, I take my dog out for longer walks now, and then I start business for the day. I am lucky I work from home.
I usually can last now until about 6-7pm depending on how hard I am working with numbers and spread sheets etc. I am also very good on my conf calls now too! BRAIN IS AWESOME! Better than the last time I posted. I do however notice that instead of the trajectory Cheneys patients took (I am not one of his patients) I was VERY up when I returned from CR.
Then I got a full blown flu and 2 eye infections. But sailed along very well. I now find myself at the
end of a work day taking fast naps...30-45 minutes of power out!? I did this right before I went into a remission too. So this is backwards....usually Cheneys patients were hypersomnolence from the get go...I am just continuing to feel better and fast napping. Social life is much better, BBQs for the past 2 weekends and hitting golf balls at the range.
It is still up and down somedays but not the SICK SICK feeling.
One day I did way too much and the next day I felt it. So I rested and was fine the next day. So up and down BUT different up and down. Better in a weird way.
It is like someone said earlier like re learning to live after being so sick so sometimes I have the sick glasses on and can't see as clearly but I usually take them off and TRY to see healthy! I had a 12 hour business day recently so I am happy about the stamina that I CAN SEE....I wish I could "rate" myself but it is so different in all areas.
I am GETTING BETTER...I can work longer hours from home, I can spend more time socializing, I am multi tasking alot with 2 LARGE projects, and just feeling better all around.
Will try to answer some of the other questions I just read in the STEM CELL POST.
Feel free to post or PM and I will answer whatever I can?!!!
PS. Yes I am going back for another round of Stem Cells haven't scheduled it yet.
Will keep you posted for Round 2!