Sunday, January 24, 2010

My Best Week Yet

I had a few extraordinary days this week.  Can you see the big smile on my face?  It is exhilarating to realize that I am REALLY making progress!

Last Saturday I did more than I've done in many months.  Even after a night deprived of sleep (I got about 5 hours), I moved through a full day without stress.   The catalogue of my activities sounds almost like a normal person: shower and wash my hair, cook and eat breakfast, pack brown bag lunch, clean up the kitchen,  acupuncture, drive 55 miles, drive around Columbus, watch 3 hour opera (Carmen, the MET HD broadcast), walk around Easton mall visiting 4 shoe stores, drive home, make dinner, e-mail and computer forums for over an hour.   Around 8:30 pm  I felt REALLY tired, but aaah,  it was such a good feeling to be tired after having done so much.

If you have ME-CFS, you won't be surprised to hear that I was very very tired the next two days.  I could barely walk around the house.

But by Tuesday, I felt recovered.  In fact, my head was clear -- almost as clear as I remember it in the past -- which made it possible for me to concentrate for several hours on an editing and translating project!   The next day, my mental clarity was almost as good during a morning conference call with my collaborator.

This changed again on Thursday after my doctor's visit.  I showed Doc my low nutritional mineral levels and asked if I could get more minerals in my I.V.  He added all those he had available.

I told him that I'd developed restless leg syndrome since my last chelation, but had kept it under control by taking potassium and calcium at night.  He suggested eliminating EDTA this week, and maybe taking it every 3rd week in the future.  So I did only a half dose of DMPS, which I calculated as <1 mg.

Despite the low dose, I had trouble falling asleep on Thursday (my usual response to chelation), and I was brain-fogged and spacey again on Friday and Saturday, leaving the cashier at Staples with the two reams of paper I'd purchased but remembering to take my rebate receipt!  

Despite being a space cadet, my energy was great.  I went to the gym on Friday and was able to increase my weight by 5 # on each machine.  My yoga practice Saturday afternoon was strong.  Moreover, I went with a friend to Goodwill and stayed there for nearly two hours, on my feet the whole time!!!!  This, for me, is an extraordinary accomplishment... for orthostatic intolerance has been my nemesis.

Back in October 2007, when I relapsed for the 3rd time, orthostatic intolerance (e.g. difficulty standing due to a failure of the autonomic nervous system to regulate blood pressure and stress hormones) became severe that I had to go around the house in a wheelchair.  I relocated to the D.C. suburbs to live with my mother so I could have another person in charge of food shopping, preparation and cleanup.  After working with an acupuncturist, I improved enough after 7 months to return to my home, but I still found myself limited to 15 - 30 minutes of standing during the day.  To be able to stand for two hours at one time --even though I was exhausted afterwards and could barely function at night -- gives me a wonderful feeling of freedom.

Two hours on my feet at one time!!  I am beside myself with excitement.   Perhaps you shake your head or waggle your finger, for we ME-CFS patients are supposed to limit ourselves, do less, resist the urge to push the boundaries of our abilities to avoid problems.  But no, we always push the limits of what we can do -- often inadvertently --paying the price for our indulgences the next day.

I did ignore the first sign of fatigue.  My shopping cart was full of things to try on and I was not going to leave the store until I tried on those bargains!  It was, at most, 15 minutes from 1st sign to exit.  And how would I see that I was doing better if I didn't try to do more?

It is now nearly 24 hours since my standing orgy and, although I have spent most of the day in sedentary activities, I am still fairly functional.  But I must confess, I have no desire to go back to another clothing store!  It might be easier to diet and get back into my old jeans, than to buy new ones in a larger size :)  

Seriously, I am hoping that, as I get more active, my weight will return to its optimal level.  I will shed the rolls of abdominal fat that have hung around since I started taking Cortef  in late 2007 (hydrocortisone).  I am now, thankfully, for the past two weeks, off of cortisone and thyroid supplements.

What's in the week ahead?  A new gut protocol designed to clear out biofilms.  I will post about this soon.

Friday, January 15, 2010

Metals, Minerals, and Bowel Detox

Last Friday, I started a regimen of colonics and immediately started feeling better.  I have since done one almost every day, skipping only those days that I've travelled to the doctor in Columbus. I decided to do this to reduce the stress on my liver, since the unfriendly microorganisms living in my bowel are making acids that poison the body.  It was a GREAT decision, for I even started FEELING GOOD.  I have more energy. I sleep without benzodiazepines (although not soundly).  I even feel NORMAL in my head.  And what pleases me the most, my desires are returning -- for sex, for creative projects like writing, for cleaning and staightening up the house.  An unexpected effect is that the itchy psoriasis on my elbows -- the bane of my existent since 1999 -- is itching less and might even be healing.
 I have a home machine called a Sitolonic, which makes the process of daily bowel cleansing easy and inexpensive.  It sits over the toilet seat, as you can see in this picture, and the water from a 5 gallon camp bag slung over the closet door comes through tubing and squirts up through a soft, flexible tube inserted into the rectum.  Unlike a water enema, there is no distension of the bowel. Instead, peristalsis is stimulated by the slow drizzle of water on the inner wall of the rectum and descending colon.  It feels like a normal bowel movement, without cramping and without any feeling of being depleted.
While I'm doing my colonic, I read magazines and newsletters.  The whole process takes about 45 minutes.  I have an extra, unopened one in a box that I purchased years ago for a client/patient with colon cancer who declined to use it and is now in a local cemetery.  As Sherry Rogers said, "Detox or die."   Feel free to private email to me at drjanisbell@gmail.com if you want to know more.
Today I got the results of a Toxic Metals and Essential Elements test (posted at http://www.scribd.com/doc/25266916/DD-spot-UTM-UTE-jan-2010).   Compared to the last time I did this test in August 2009, I am dumping many more toxic metals.  Last time I had bars in the green (normal range) for six metals.  This time, I have bars in the green for 11 toxic metals.  Significantly, two of those bars are in the high normal range -- aluminum and tin.  All the things I dumped last time are still being dumped, except mercury.  But I have learned that mercury excretion tends to be cyclical, and perhaps since I get quite a bit of mercury detox with DMPS, and did and LED for mercury in Florida, my body has other, higher priorities.

The second part of the test shows levels of nutritional minerals.  While the report specifically says that spot urine tests are not accurate measures of nutritional mineral levels (better measures are whole blood, RBC elements, hair analysis), Dr. Amy Yasko uses these tests regularly to monitor the levels of nutritional minerals in the autistic children on her protocol.

To the extent the test is valid, it shows two things of significance.

[1] all my nutritional minerals are dismally low (except magnesium, which I supplement in high amounts and which had during the night before collecting the sample).  This confirms, to my mind, how the I.V. chelation has been creating difficulties for me.  My incredibly low calcium and copper levels must be having a negative effect on thyroid and adrenal function, energy metabolism, and nervous system function.

[2] cobalt is quite high, nearly a black line across the page.  Dr. Yasko likes to see it quite high, as she has found through years of experience that, after it maxes out, her patients actually start using Vitamin B-12 more effectively.

My doctor hasn't seen these results yet.  Still he, and Mike, are extremely convincing about the need for chelation and the fact that the benefits outweigh the risks and temporary discomfort.  I get pulled in by their confidence and their history of success.

Yesterday I did another I.V. chelation, this time with half the dose I'd taken previously:  75 mg EDTA, 0.675 mg DMPS.   How did it go?

Going in was easy. A small saline bag takes less than an hour to empty, compared with the interminable 7 hours of the half-liter Aminosyn I used to get.  I was in and out of the surprisingly empty I.V. room before I could finish a chapter of my book.

A few minutes afterwards, as I lay on the examination table waiting for my neural therapy treatment, I became aware of an odd sensation in my body, one that I associate with all of my CFS relapses.  It feels as if little fireworks are going off in every nerve synapse.  It's not painful, just very unrestful.  I associate it with oxidative stress, although I don't know that this is really what is happening. It could just be chelation messing with electrolytes.  I told the doctor, but as usual, he didn't seem concerned.  He was more focused on how much better I felt as he lay his hands over various organs and energy meridians.

I decided to take a few things to mop up the toxins: chitosan and charcoal.  Chitosan mops up fat soluble toxins.  Charcoal mops up water soluble toxins.  I took chitosan shortly after my i.v. and charcoal at bedtime and when I awakened during the night.  It's important to take both on an empty stomach.

I knew sleep would be a challenge, so I read an hilarious book which had me laughing out loud.  It's called Undress me in the Temple of Heaven, by Susan Gilman.  The story is actually tragic, but the author has a terrific sense of humor and is able to find humor even in the most stressful situations she encountered while traveling through mainland China in 1986 with a friend who became schizophrenic.  When I finally closed my eyes at 1 am, I did fall asleep, although I tossed and turned for two hours.  Finally, I moved into the guest bedroom with the blackout shades pulled, and slept until a persistent telephoner roused me from slumber a mer 5 1/2 hours later.

Yet here I am, writing away, and feeling GREAT today.  Onward soldier.



Saturday, January 9, 2010

A Radical Decision

In the wee hours of the morningI lay in bed unable to fall back asleep.  This is crazy, I thought.  Something must be disturbing my sleep -- something I'm taking.


I'm going to stop taking EVERYTHING!  I resolved.

I popped 1/2 of a clonazepam tablet into my mouth and swallowed it down with a gulp of water.   This might be the last tablet I pop into my mouth for awhile, I thought.  It ought to give me another four or five hours of sleep.  Without 9 hours, I'd be unable to cope with the tasks of the day ahead.

I knew it was supposed to snow in early afternoon, and I knew I'd be driving to Columbus during that snowstorm.  Having missed my doctor's appointment on Monday due to snow,  I was determined not to miss another one.  I wanted to hear what he had to say about my recent test results -- high liver enzymes, high cholesterol, rapidly rising TSH. I was convinced that chelation was the source of all my problems.  I will tell him I'm going to stop that too, I resolved once again.

I tucked the down quilt around my neck, closed my eyes and fell into a drug-induced stupor.  When I awakened, the morning was nearly over.  It was past 10:30 am.

*   *   *
"So what do you think is going on with these lousy test results?" I asked.

Doc replied that he wasn't worried about my high liver enzymes -- high enough that my regular MD had called it 'severe' and 'alarming.'  "I see this often as lots of toxins are pushed through the liver.  I don't worry until the enzymes are up to three or four hundred.  But, you have to be careful..."  He was interrupted mid-sentence by the receptionist.

When they had finished discussing the availability of thyroid meds for another patient, I brought him back on topic.  "Careful of what?" I asked, assuming he'd tell me to lay off chelation until everything was normal.

"Careful not to stop," he said.

With my eyes as round as saucers and my jaw agape, he knew I needed more.  He made a drawing that resembled a camel's hump.  He drew an X and a circle around the X on the rising side of the hump.  "This is where you started, feeling comfortable but at a low energy state.  This is where you are now," he said.  "If you stop, you'll start sliding backwards; then you'll get sick, and as soon as you take antibiotics, you'll slide all the way back to where you started."

Ohmygosh!  Fear rushes in.  Am I ready to forget that resolve to announce that I'm quitting chelation?  My first visit after New Year's and I'm breaking my resolutions...

I got in a few more questions before he said, "So are we just talking today or are we going to do a treatment?"  Then he got out his infrared laser and placed it against my liver.  He got out his sine-wave pulser and sent currents in through my liver, which I soon felt in the abdomen, groins and thighs.  After this, I got the standard needle pricks in my gums, feet, abdomen, scalp, neck and upper back.  And I went on my way, cruising down the empty snow-laden streets of Columbus.

Doc's explanation for my high cholesterol was interesting.  He said he's seen this happen often and that HDL, the so-called 'good cholesterol' carries toxins.  This is particularly true when it rises above 70 or 80.  As the body releases toxins, the LDL increases for awhile.  I personally also think it has something to do with the liver, which makes most of our total cholesterol.

Regarding the elevated TSH, he suggested that the treatments were unmasking an underlying thyroid disorder.  I don't agree.  I'm going to do an iodine challenge test to see if low iodine is the reason.  We can have a difference of opinion on this.  He's an incredibly talented healer, but he's not God.

Self-testing for iodine need with a quarter-sized spot of tincture of iodine painted on my inner forearm --- It's supposed to last a full 24 hours if the body's iodine stores are adequate.  Mine disappears in a few hours, as quickly as my quarters, dollars, and hundreds.  At the website, iodine4health.com , I learn researchers don't believe in the accuracy of this test.  Here is Dr. Derry's opinion.
The "test" of putting iodine on the skin to watch how fast it disappears is not an indicator of anything. The iodine disappearance rate is unrelated to thyroid disease or even iodine content of the body.(1-2) Meticulous research by Nyiri and Jannitti in 1932 showed clearly when iodine is applied to the skin in almost any form, 50% evaporates into the air within 2 hours and between 75 and 80 percent evaporates into the air within 24 hours. (1) A total of 88 percent evaporates within 3 days and it is at this point that the evaporation stops. The remaining 12 percent that is absorbed into the skin has several fates. Only 1-4% of the total iodine applied to the skin is absorbed into the blood stream within the first few hours. The rest of the iodine within the skin (8-11%) is slowly released from the skin into the blood stream. 
 He then goes on to say that this absorbed amount has a number of beneficial uses, among them healing of skin from the inside out.  Now I'm painting my psoriasis lesions with iodine tincture twice a day!

I did keep one resolution.  I stopped all my supplements, except my thyroid.  It was SO WONDERFULLY FREEING to forget about carting all those pills to Columbus, and most freeing not to have to pop them in after meals.  I even slept sounding for six and a half  hours after my neural therapy treatment in a strange bed in a cold room at my brother-in-law's.

However, I got constipated right away.  So now I'm adding the pills in one by one, and keeping track of my symptoms in four areas:  Bowels, Nervous System, Sleep, and Other (cardiac, headache, etc.)  So far with reduced supplements, I have constipation, a jittery feeling, and a little more cardiac symptoms than before.   Proof the supplements are doing something positive!  

I barely slept last night and therefore decided this morning to forgo taking thyroid entirely.  [I know this is not what doctor's usually advise, but since my values were in the normal range when I started taking it, and since I'm taking a tiny dose (1/4 of a 1/2 grain tablet), I think my system will adjust.  If it doesn't, I've lots of extra sweaters until I get the iodine challenge test done to see just how bad, or good, my iodine levels really are.]

I see the Doctor again on Monday, when yet another snowstorm is forecast!!! and later in the week on Thursday.  I'm going to hold off doing another chelation until Thursday and then, Doc agreed to let me do half the amount I've been doing (1/4 cc of EDTA and either 0.05 cc DMPS or 0.025cc)   I just learned from Joey that the strength is 25 mg/ml, so that makes my standard dose 1.25 mg, and if I get a half dose, it will be 0.625 mg).  I pray those tiny amounts will not disrupt my sleep and my emotional well-being.

Currently taking:
1/4 Folapro
1 drop Vit D3 (2000 i.u.)
Vit C
Magnesium citrate
1 Hepacaps (liver product with milk thistle, dandelion, artichoke, etc.)

Tomorrow I add a liver glandular (Ora-Liv) and the next day the kidney glandular (Ora-Kidney).

Addendum:  slept 8 hours Saturday night without any sleeping aids and without waking at all!  Hurray!

Tuesday, January 5, 2010

The scale tips further, but it still wobbles

Yesterday the roads were white with black patches, and today it is still snowing.  Twenty minutes away from home, I turned around -- missing my doctors appointment and my NT treatment, but getting instead a much-needed 2 hour nap under a cozy down sleeping bag.

The results of my blood tests drawn at the end of December are in, and they point to body organs having a damned hard time with chelation.

Thyroid:  
I learned from Dr. Rind (drrind.com) how to graph thyroid test results to get a nice picture of what is going on.  The zero mark in the center represents the optimal level where everything is in balance.  Departures from the center are marked in increments within the reference range from -1 to -5 and from +1 to +5.  This allows you to look at patterns before you get out of the reference range.  

My TSH (the hormone secreted by the pituitary that tells the thyroid gland to make more hormone) is moving to the plus side (right).  It went from +1.5 (Aug 08) to +3.5 (Aug 09-- 8 months on methylation protocol) to +4 (beginning Dec  09 -- 2.5 months NT and chelation) to +5 (end Dec 09). I am now just at the edge of the reference range.  

Meanwhile, my thryoid hormones T3 and T4 have shifted only slightly to the minus side (left).  They dropped from -1 (T4) and -2.5 (T3) in Aug 2008 to -3.5 (T4) and -3 (T3) in Aug 2009 but have pretty much stayed around this level perhaps because I started taking a tiny bit of natural thyroid (like armour), cutting the tiny pills into quarters.  

Liver enzymes
They have moved from mildly elevated to severely elevated.  AST was 45 and is now 137.  ALT was 75 and is now 173.  It is no surprise that I am feeling tired, that I get headaches on the liver gallbladder meridian, and that I now feel terrible after eating a meal with fat.    My liver enzymes have been normal most of the time, but there were a few times in the past when they were mildly elevated. 

Lipids
I now how high total cholesterol, normal HDL (the high density or 'good' kind), and high LDL (the low density or 'bad' kind.)  I have never had high cholesterol in the past.  In fact, I always had the best possible ratio of HDL to LDL.

Vitamin D
Despite supplementing with 2000 i.u. transdermally, my D3 levels have dropped way down below the normal range.  Vitamin D deficiency is associated with many chronic illnesses, including depression and cancer.

Why?  
While I'm waiting for my doctor to return the calls I made last night and this morning, I've been researching the relationship between some of these changes and the things I've been doing.  Here's what I learned.

Dr. Yasko wrote:
Iodine levels also affect thyroid function and there is a relationship between the methylation cycle, sulfur groups and iodine levels. ... Lithium is concentrated in the thyroid and can inhibit iodine uptake. This is why it is important to monitor both the levels of iodine as well as lithium on essential mineral tests and supplement lithium only as needed for low values that may occur as a result of detoxification and excretion of mercury. 
When I saw lithium go way down on my hair analysis, and started having mood swings, I began to take a small amount of lithium (Li-zyme from Biotics Research).  Today I sent in a urine test to monitor the levels, and will stop taking lithium until I get the test results.   Iodine levels can be lowered by chelation.

Dr. Yasko wrote:
The thyroid hormone iodination cycle is tied to glucose 6 phosphate dehydrogenase levels. The use of supplements or chelating agents that deplete G6PDH levels can also affect thyroid hormone levels. 
Sulfur based detox, like TD DMPS can have effects on G6PDH. Decreases in G6PDH can make the RBCs more fragile so they lyse more easily. Since RBCs "turnover" every 120 days, it is possible that the effects of sulfur based detox may not show up for several months. 
DMPS, DMSA, and all sulfur chelating agents can deplete G6PDH levels.  I have been on DMPS, 0.5 mg I.V., and in Florida, took 3 DMSA capsules.  Dr. Yasko explains the potentially harmful effects

Dr. Yasko wrote:
Liver support indications:   
  • Elevated AST (SGOT), ALT (SGPT), alkaline phosphatase (ALP), billirubin, cholesterol, triglycerides in bloodwork.
  • Long term chelation with sulfur based chelating agents 
  • High level excretion of toxic metals on fecal tests
 So it looks as if the increased cholesterol could also be due to the chelation with DMPS and/or the increased excretion of toxic metals (although I haven't tested fecal excretion).

As for low Vit D levels, I don't know a direct relationship, but there is an indirect relationship through the drop in G6PDH, the increase in blood sugar levels (yes, mine are higher than before), stress on the pancreas, and the need for Vit D.

According to Dr. Yasko I should increase liver and pancreas support.  More supplements OMG!

Is there anything good?  YES
Since I had a urine sample this morning, I decided to run a few home tests.  I was very pleased to see that the MDA levels are improved.  MDA is a measure of how much oxygen is damaging the fragile lipid membranes of cells.  This is a process known as oxidative stress.  It is a process that ages the body and which tends to be out-of-control high in CFS-ME.  Mine previously tested in the severe range.  Then I went down to very high.  Now I am just at the borderline between low (which is the place to be!) and high.  The normal levels of MDA correspond to the good results of other measures of oxidative stress in my recent Genova organic (metabolic) acids panel.

I discovered that taking a tiny bit of melatonin (1/3 of a 300 mg sublingual tablet) helps me fall asleep.  In the past I could not tolerate it, which is why I didn't try it earlier.    I am now waking only once during the night.

Some homocyst(e)ine showed up on my blood test.  It was actually at a really good level (6.1), right near the middle of the reference range from 0- 15.  This means that my methylation pathway is working again, for homocystine was 0 (ZERO) on the plasma amino acid test I took in late November.  This is a good sign that things are turning around.

If I stop doing chelation, I will save money.  And I won't have to drive as often on these snowy roads.  The landscape is beautiful in the snow, quiet and still.  I watch the finches landing on the feeder, their throats tinged with yellow, and remember that the days are already getting shorter.  In less than three months, it will be Spring.








Friday, January 1, 2010

Weighing In as 2010 begins



The Roman God Janus, for whom January is named, is shown with two faces.  One looks back, the other forward.   I don’t know if my name ‘Janis’ has an etymological connection to this God, but I find myself similarly looking back at where I’ve come and thinking how the lessons of 2009 might direct me in making choices in 2010.

Yesterday morning I was down.  I went on the Phoenix Rising Forum and began reading about ozone and biofilms. Before I knew it, I found myself writing on several threads about my own bad experiences. Even on the upbeat group about peoples’ experiences with neural therapy, I whined and bitched about how much money I've spend for disappointing results.

Many wonderful individuals responded with encouragement and help.  Perhaps my symptoms were signs of detox, some suggested.  They say it is normal to experience bad days and even bad weeks on this protocol.  It’s normal to feel down in the dumps as emotions are detoxed along with metals and minerals.

Their words left me feeling better.  I resolved to continue working with my doctor on the chelation and neural therapy for another month, doing chelation i.v.’s once a week and NT treatments once or twice a week.   Then I ate dinner and felt terribly sick with liver, gallbladder, and gastrointestinal symptoms which, alas, kept me up until 3 or 4 a.m, and not in a New Year’s Eve partying mood.  Perhaps I would have suffered longer if I hadn’t turned to my toolbox of natural healing protocols – a water enema, acupuncture needles, activated charcoal, and herbs.

This morning is time for a balanced assessment.  What have I accomplished in 3 ½ months?  Is my continued optimism justified because of one former patient’s experience?

I get out the imaginary balance scale, which looks an awful lot like the one Ambrogio Lorenzetti painted on the walls of the town hall in Siena.
You can see a better picture here.  Like the allegorical figure of Justice, who balances a scale on the crown of her head to show that she thoughtfully weighs the actions of people before deciding whether they are to be rewarded or punished, I balance the scale on my head as I imagine dropping things into each pan to see how they weigh out.  Will the pan for ‘improvements’ be heavier or lighter than the other pan? 

Here’s what I came up with:


Worse

Better

Thyroid
TSH up, T3 down
Average body temperature
About .2 degrees higher
Adrenals
Progesterone way down, estradiol stable 
Adrenal meds
Cortef (supplemental hydrocortisone) reduced to ¼ dose
Liver
Enzymes AST and ALT elevated
Neurotransmitters
Balanced per urinary amino acids, HMA, VMA,
Bile production
Symptoms of headaches & bad taste in mouth after eating fat
B-12 tolerance
Able to tolerate up to 0.2 cc (2 mg) of OH B-12 through sub-cu injections
Methylation
Blocked, as indicated by high methionine on plasma amino acids and non-existent homocysteine and cystathionine
Plasma amino acids
Most in normal range after about 30 Aminosyn i.v.’s
Sleep
Insomnia, difficulty staying asleep, need for high doses of benzodiazepines to fall asleep and stay asleep
Caffeine tolerance
Able to tolerate small amounts, perhaps due to all those residual sedatives in my system
Exercise tolerance
Decreased
Cardiac symptoms including orthostatic intolerance (POTS)
Decreased
Energy, enthusiasm

Decreased
Urinary organic acids testing
Fewer problems indicating cofactor need and slightly higher citric acid in Krebs cycle
Mental/emotional
Less stable moods, more forgetful, more distracted, more paraphasia
Heavy metal elimination
Hair analysis showed large mercury and aluminum release
LDL Cholesterol high                                                  Reduced salt craving
  (I added these in on Jan 2)

HELP!  It’s really tough to figure out which side of the balance tips down!

Looking at the left column, it seems that the glands and organs involved in detoxification and energy production are showing signs of breakdown from being overly stressed.  This makes me think that detox, whether from chelation or from NT, is taking too hard a toll on my body.  I worry, due to my dismal experiences in the past, whether I’ll be able to recover from this.

Yet when I look at all the things in the “better” column on the right, I question my pessimism.  The one thing that stands out for me is the diminished cardiac symptoms. I don't get palpitations or racing heart. I find myself standing up for longer periods of time without thinking about it. Sometimes I even rise from my chair and stand in the kitchen while I'm talking on the phone.  In the past, when I've recovered my energy and have been able to exercise, orthostatic intolerance always remained as my most persistent and disabling symptom. Doc has really been focusing on ‘pericardium’ issues, which he felt was the place to start.  It seems he did bring this part into balance.


Still, my feeling self is cautious and leaning to the left (worse).  Yesterday I wrote:

The losses seem more [sic] greater than the gains.  I have tried to be optimistic. I am always, always looking at the glass as half-full rather than half-empty. But I am truly discouraged as the year ends and I look back.


I used to be weight lifting 15 minutes 3x a week and doing about an hour of yoga every day. Now I can only lift 1x a week and I am tired all day. I find myself tired doing yoga as well. I have tried a little aerobic exercise on Doc's suggestion, but I got sick the next day, as usual ---and I only did 3.5 minutes total! 2 minutes treadmill, 1.5 min elliptical.
I used to have energy to write and lots of enthusiasm for my projects. Now I have none.
I used to sleep through the night, except on the first 3 nights I raised my does of naltrexone, where I took a mild benzo to get to sleep. Now I wake 2-3 times a night, sometimes more, and I have to keep increasing the strength of the benzos to get to sleep and to stay asleep, often taking a second pill when I awaken.
My ability to recall words has gotten worse. My husband has noticed that I am more clumsy in the kitchen, spilling things and being less fastidious about keeping things clean. 
I used to care about preparing healthy food for myself, and now I feel lazy most of the time and eat whatever is convenient.


Is this the difficult path of natural healing, the path where you have to get worse (or at least feel worse) before you get better? 

How do I know that I won’t get harmed by these procedures, as I got harmed in the past by protocols that were “very gentle”  “never hurt any of my patients”.  The most traumatic of these -- the one that still has a big charge in my brain -- was the one week raw juice fast I did in January 2000 at Tree of Life under the direction of Dr. Gabriel Cousens.  He was not even apologetic when I developed POTS a few days after the fast.  


I never recovered to the point where I was in 1999, although I did improve quite a bit before crashing again in 2007.  At the beginning of a new decade, I don’t want to repeat the same mistake – blinding going along with the optimism of a medical professional when my body symptoms are telling me that I’m getting too much stress.

I’m trying to keep my head steady as the pans on the balance tilt from one side to another.  I wish I knew how much weight to give to each item.  Are some more significant than others?

I tend to blame many of the worsenings on the effects of chelation.  Even though Doc uses a low dose (0.5 mg DMPS, 150 mg EDTA),maybe it is too provocative for my body.  I blame EDTA for pulling out sodium and potassium and lithium, which have had negative effects on adrenals and mood.  Has it also lowered iodine, reducing the available material for making thyroid hormone? Dr. Amy Yasko wrote:
The thyroid hormone iodination cycle is tied to glucose 6 phosphate dehydrogenase levels. The use of supplements or chelating agents that deplete G6PDH levels can also affect thyroid hormone levels.
Something else to research .... What are those supplements and chelating agents?


Lowering cortisone medication may have been the cause for my lowered progesterone, for progesterone converts to cortisol as more stress hormone is needed in the body. The post-EDTA chelation days are stressful -- poor sleep, depression and anxiety.  I'm also doubting whether Aminosyn (amino acids) that I took with the chelation was totally beneficial or whether it too put a stress on various liver pathways where enzymes and other cofactors were not able to keep up with the increased supply of amino acids.

Should I take a chance on continuing to stress my thyroid, adrenals, liver and gallbladder?  Or should I stop chelation?  What do you think?  HELP