Tuesday, November 24, 2009

Emotional roller coaster of chelation

I used to love roller coasters.  The slow chug up the hill, packed with anticipation, the teetering pause at the top, the rapid plunge down.  I loved them until my daughter was 3 years old, when we rode a little roller coaster that had been set up in the parking lot in front of the local supermarket.  I'd gotten in the habit of riding with a seat belt and shoulder strap and buckling my toddler into a car seat; these precautions made me feel safe.  But in the open roller coaster, with only a steel restraining bar, I struggled to keep myself from falling sideways while keeping her from slipping under the bar.  Still, with legs too short to touch the floor, she slid forward.  With mental flashes of my darling lying comatose and bleeding on the ground, I screamed in utter terror for the operator to stop the ride.  I scooped her in my arms and, with wobbly legs, descended from the rickety platform onto solid ground.

My daughter grew up to love roller coasters.  But only once did I oblige her request to join the fun.  That was at Cedar Point's new Magnum, a 70 mph ride with, you guessed it, a seat belt and a shoulder strap.  By that time I'd read too many newspaper accounts of amusement park accidents to believe that anyone was completely safe.  But I survived with the help of vigorous screams which, blessedly, released many other tensions of caring for a tween with PDD (on the autism spectrum.)

My journey through neural therapy and chelation feels like a roller coaster ride.

I have heightened anticipation  whenever I notice that I've done some little thing that I hadn't done for awhile.  For example, Oct 30 in NYC I talked with a friend for four hours while we sipped tea in Central Park, road the bus, wandered around and ate dinner.  Two months ago I didn't have enough energy to talk to a friend for an hour without getting a sore throat.   Last week I had the energy to bake two quiches and a few hours later, make an apple cobbler.  A few nights ago, I spent over 50 minutes cleaning up in the kitchen before I felt the first tiny sign of orthostatic intolerance (I usually get a sensation of fullness and ache in my feet).  In my vague memory, even 15 minutes on my feet was previously too much.

But after teetering at my edge, using up whatever energy I have to use, I begin to feel symptomatic.  That's when I fall into the pit of doubt.  During these periods I am just as tired and just as symptomatic as ever before.  I feel like I'm a stationery bike going nowhere.  That's when I begin to think that all the time and money I'm spending to heal myself is pointless, because waah waah waah, I'll never get well, I'm a hopeless case, the doctor doesn't understand what's happening in my body, yaddah yaddah.

Not a pleasant place to be.  But is it any less real than the pleasant optimism of recovery?

I've been asking myself recently if my improvements are just a placebo effect to justify the complete transformation of my life.  I miss the time I used to spend writing, but with so much time spent in the car or at home hooked to i.v.'s, and with the unpredictable symptoms and side effects of treatments, I haven't been able to motivate myself.  It seems as if the time spent at home is just filler until I have to go back to the doctor's office and wait to see what new surprises will unfold.

My reaction to the chelating agents had been most unpredictable.  The EDTA which I was taking 2x a week was giving me severe reactions.  I wrote, on Amy Yasko's forum: (http://www.ch3nutrigenomics.com/phpBB2/viewtopic.php?t=20037&highlight=edta)
I need guidance on controlling the symptoms I'm getting from EDTA chelation which are: iinability to sleep, and now (this time only) headache, constipation, anxiety, sore throat.) I'm frightened that, in the process of pulling out the undesirable things, it's messing up my healthy nutritional mineral balance. 
I got lots of good answers, ranging from adrenal stress to supporting gaba/glutamate balance.  I realized that the panic I was experiencing was typical of kidney meridian stress, for the emotion associated with the kidneys is fear.  My doctor said my reactions were fairly typical -- that people tend to do alright with the actual chelation, but then 6 to 12 hours afterwards, the body is rearranging everything to replace the missing metals with healthy minerals and to clean up oxidative damage.  That rearranging is what causes such terrible stress.

I felt calm and reassured in his office, but the next chelation still pushed me into panic, so he's allowed me to take a break from the calcium EDTA.  In the meantime, I've continued on DMPS, and had nothing but a bit of brainfog for the next day, until my treatment last Friday.

I'd been feeling like I had a mild cold, and probably should have put off the treatment, but we had weekend plans I didn't want to change.  During the i.v. drip, I had more problems than usual and had to slow down the pace.  Instead of finishing at 9:30 pm, I was still sitting in bed with fluid in the I.V. bag at 1 am.  I rushed to end because I was incredibly tired, made up for the late start by sleeping until 10 am.  But I was dizzy and brain-fogged the next morning.  To clear up my symptoms, I did a coffee enema and took a triple dose of ALA (as Andrew Cutler suggests, one pill every three hours).  These interventions made me feel terrific all day.  But they turned out to be a lousy solution because....

I was too charged up at night to sleep soundly.  The next day we had concert tickets and dinner plans.  Somehow I barreled through without collapsing.  I even managed to sleep without pills for a solid 11 1/2 hours!-- another sure sign I am getting better.  Still, I was dragging and exhausted nearly all day yesterday and slept poorly again last night (only 4 hours).

I'm ready for the boring predictability of the stationery bike!  I'm ready to sit home and write, read, and do yoga.  I'm ready to get my life back.

Mike, my cheerleader, says to hang in.  That the error he made, that most of us make, is stopping in the middle of detox, instead of persisting until our cells are clean enough to function normally.  I hope he's right!

I have promised myself that next time, even if I am miserable the day after an i.v., I will not do anything or take anything like ALA or coffee.  I will try to see how long the brain fog and spaciness lasts, and indulge myself reading novels and watching films if I can't do anything else.

Doc feels certain I am making good progress and doesn't know an easier way.    He says he's explored all kinds of oral chelation, but when he 'tests' someone with i.v. EDTA or DMPS, they always expel a bunch of metals.

Dr. Amy Yasko's methylation protocol has produced amazing detox in autistic kids, as their parents have documented with weekly or biweekly urine tests. (Read the reports on her forum, ch3nutrigenomics.com)  But even this detox isn't painless.  From reading what parents report, detox always leads to an exacerbation of symptoms.

I was never willing to spend $50 every week for spot urinary toxic metal tests to see if I was getting anywhere.  And I reason now, that if I were to continue with Yasko's program alone, it could easily take me 20 or 30 years to detox fully, considering that it takes 5- 8 year old kids 2-3 years.

It feels good to realize that I'm not being impatient, just realistic.  I've lost two decades and hope to restore my health to a point where I can become active enough to travel and exercise.  At my age, I don't have unlimited time.  I hope I can remember this next time a post-chelation panic sets in.

Happy Thanksgiving to all!  


  1. I don't know how you could find a doctor that does a detox procedure for metals and all other toxins called LED. It stands for
    Laser Energetic Detox.
    Here is a link that explains it in detail:


    I have been where you are but the ED Treatments are nothing like what we all know as the dreaded detox. After a treatment, I'm very seepy for 24 hours and then it's over. I've only has two 30 minute treatments and all the heavy metals are gone and other toxins as well. I'll check back with you to see how you are doing.


Please add your comments here. If you have a question specific to your own condition, please e-mail me directly at drjanisbell@gmail.com I cannot give medical advice. If you want to suggest a product or therapy you think I should try, please let me know if you have used it, what you used it for, and how it helped you.