Sunday, September 27, 2009

PARTICIPATE IN A CFS study with questionnaire & GET PAID

I just participated in the following study.  It took about 10 minutes to fill out the questionnaire, a small pamphlet that came with a postage paid envelope. 

I have to admit I found the questionnaire annoying because it focused almost entirely on fatigue and emotions, nearly ignoring the neuro-endocrine aspects of ME-CFS.  Many of the questions seemed to be tricky.  One line would be something like "Fatigue interferes with my activities" and a few lines below something like "I have energy".  If I were reading fast, since I have difficulty paying attention to details, I'd often check "extreme" or "severe" before realizing the opposite was true.  



The study is supposed to be a pilot study, that is, an initial study to establish a baseline for future studies on alternative medical treatments for CFS.  I haven't yet ascertained whether the investigator is interested in exploring know the benefits with an open mind, or proving that alternative medicine is useless.  The study is run by the Huntsman Cancer Institute in Utah, Director Arthur Hartz.  Here's what Hartz's biography says:
Hartz received his PhD from the Johns Hopkins School of Hygiene in Baltimore, Maryland, in 1974. In 1982, he received a medical degree from the Medical College of Wisconsin in Milwaukee. Hartz has participated on numerous review panels, including most recently the Chronic Fatigue Committee Advisory to the Secretary of Health and Human Services and the Assistant Secretary for Health. He has also served as a reviewer for more than a dozen scientific and medical publications, including theJournal of the American Medical AssociationLancet, and Journal of Cancer Research.
So why do they have a cancer expert on the CFSAC?  


A little sleuthing -- e.g. a search on Pub Med under the Director's name -- came up with one previously published study on CFS in J Clin Psychiatry. 2005 May;66(5):625-32.  Primary investigator was Bentler SE.  


Here is the abstract: 
Department of Family Medicine, College of Medicine, University of Iowa, Iowa City, IA 52242-1097, USA.
BACKGROUND: Unexplained chronic fatigue is a frequent complaint in primary care. A prospective observational study design was used to evaluate whether certain commonly used therapies for unexplained chronic fatigue may be effective. METHOD: Subjects with unexplained chronic fatigue of unknown etiology for at least 6 months were recruited from the Wisconsin Chronic Fatigue Syndrome Association, primary care clinics, and community chronic fatigue syndrome presentations. The primary outcome measure was change in a 5-question fatigue score from 6 months to 2 years. Self-reported interventions tested included prescribed medications, non-prescribed supplements and herbs, lifestyle changes, alternative therapies, and psychological support. Linear regression analysis was used to test the association of each therapy with the outcome measure after adjusting for statistically significant prognostic factors. RESULTS: 155 subjects provided information on fatigue and treatments at baseline and follow-up. Of these subjects, 87% were female and 79% were middle-aged. The median duration of fatigue was 6.7 years. The percentage of users who found a treatment helpful was greatest for coenzyme Q10 (69% of 13 subjects), dehydroepiandrosterone (DHEA) (65% of 17 subjects), and ginseng (56% of 18 subjects). Treatments at 6 months that predicted subsequent fatigue improvement were vitamins (p = .08), vigorous exercise (p = .09), and yoga (p = .002). Magnesium (p = .002) and support groups (p = .06) were strongly associated with fatigue worsening from 6 months to 2 years. Yoga appeared to be most effective for subjects who did not have unclear thinking associated with the fatigue. CONCLUSION: Certain alternative therapies for unexplained chronic fatigue, especially yoga, deserve testing in randomized controlled trials.
PMID: 15889950 [PubMed - indexed for MEDLINE]


At least the study concluded that yoga was good for CFS :).  I've known that for years.  The problem is that people with severe cases can't do yoga classes and there are no yoga CD's that are appropriate.  I was quite fortunate that, when my condition became severe, I already had a strong yoga practice and was teaching yoga.  As a result, I knew how to work my body fully while lying on the floor.  Someday in the near future I hope to pull together some videos and CD's to guide others in doing yoga. 


I want to urge everyone reading this (who has a fatigue illness, whether ME-CFS, Lyme or Fibromyalgia) to complete this survey.  We need to establish that we are not depressed, emotionally wacked out individuals.  This is a battle we will have to fight until we win!  



Here is the description and links to the survey:
Unexplained Chronic Fatigue Questionnaire Study - Volunteers Needed

Individuals who have had severe, unexplained fatigue for at least six months and who have no serious abnormalities on medical tests are wanted for a study of chronic fatigue. Patients who qualify for the study will be asked to complete three questionnaires over a six month period. Participating in the study will not alter the treatment that your physician gives you. The purpose of the study is to evaluate whether patients treated by certain types of physicians improve faster than patients treated by other types of physicians. If you may be interested in participating in this study, please contact the study coordinator, Kathleen O’Connor at (801) 587-4741. For more information email kathleen.oconnor@ hci.utah.edu or visit our website at https://hci- as2.hci.utah. edu/CFSurvey/ app.

We will send you $25 if you complete two questionnaires, one given to you at the time you enroll and a second given to you three months later. We will send another $25 to you for completing a questionnaire six months after you enroll. If you need to get results of your laboratory tests from physicians other than the physician who told you about this study, we will give you an additional $15 for giving us the results of all of these tests.

Monday, September 21, 2009

Eureka!

Eureka!  I finally have movement in the right direction on my Oxidata and Reams home urine tests.

Despite a week of fevers every afternoon, headaches every morning, sluggish bowels, and chest pains severe enough to send me to the E.R. one night (my heart checked out fine, by the way), I actually can state with absolute certainty that I AM HEALING.

In December 2008 I started testing my urine at home for four variables: sulfate, urea, ammonia, and malondialdehyde (MDA).  Following Dr. Yasko's guidance on sulfur and the CBS enzyme, I was able to get my urinary sulfate to a good level.  (See my March 13 post, Sulfate under control)  But I couldn't get anywhere with the other three measures.  A few weeks after I started Biopterin (late July), I was able to lower ammonia and raise urea.  But every time I tested MDA with the Oxidata test it was in the severe range. I would squirt a measured amount of urine into the little glass vial filled with testing solution and watch it turn instantly red.  I finally gave up testing regularly.

(Sorry for the crooked image, folks!)

Imagine my excitement when the urine in the glass vial remained a slightly yellowish pink.  I set the timer.  Five minutes later it was a dark pink.  HIGH, no 3.  That means I've only got one more notch to go to get into the optimal level, LOW no 2.   

So what's the big deal?  Who cares about MDA?  And what the hell is it?

Have you ever seen a nail rust?  A cut apple turn brown?  A cut avocado turn black?  Of course you have.  So you already know that certain things breakdown when exposed to oxygen.  So too with the human body.  This process is called oxidative stress.

Although we need oxygen to live, it damages our sensitive cell membranes as well as other parts in the interior of our cells.  So our body has lots of ways to keep it under control.

I like to think of it this way:  Picture a dog on a leash, its ears perked up, panting as it pulls and tugs to get to the next delectable sniff.  Someone comes up to pet it, and as it starts to jump up and lick your friend, you tug   on the leash and restrain your canine.  Oxygen is like that dog.  Enthusiastic, ready to run wild.  Antioxidants are the leash that enables you to keep the oxygen under control.  This way you get oxygen's benefits of energy for your cells and of zapping infectious microorganisms before they spread but you avoid damaging your body beyond its ability for self-repair.

I took a ton of anti-oxidants: grape seed extract, pycnogenol, blueberry, pomegranate, glutathione, Vitamin C, Vitamin A, tocotrienols, tocopherols, carotenoids, flavonoids, and more.  Nothing changed.  Something in the antioxidant process doesn't work in ME-CFS.  Dr. Majid Ali has argued for the importance of dysfunctional oxygen metabolism in CFS, Fibromyalgia, and other chronic illnesses.  Only recently have these ideas gotten wider credence, with Martin Pall (Explaining Unexplained Illnesses), Rich Van Konynenberg (see the link at the bottom) and Paul Cheney looking at dsyfunctions in different aspects of the antioxidant systems in the body to explain why those of use with ME-CFS have continually high oxidative stress.

So what's different now?
1.  I've followed a protocol to raise glutathione:

  • I've been on the modified Yasko program for eight months which is enough time to raise glutathione, the most potent anti-oxidant in the cells.
  • I started injecting reduced glutathione subcutaneously a month ago.
  • I've been using the Lifewave glutathione patches for 4 months

2.  I started Naltrexone about a month ago and Biopterin about six weeks ago

  • low dose naltrexone improves immune function and lowers inflammation
  • biopterin is used to produce BH4, which helps the body breakdown ammonia.  When there isn't enough BH4, you make peroxynitrite, the potent oxidant Martin Pall has proposed as the main culprit in the ME-CFS vicious cycle.  Conversely, when there is adequate BH4, oxidative stress is reduced
Perhaps my amino acid infusion also had a role to play, by supplying the body with critical amino acids needed to make antioxidant enzymes.  

I don't know.  I'm just glad to be climbing slowly uphill again.  Uphill is slow, downhill rapid (especially when in freefall), but the view at the top is splendid and well worth the long journey.

Wednesday, September 16, 2009

After the first treatment

At 5 am, I lie in bed doing viloma pranayama listening to the crickets and a lone bird. Viloma pranayama is a yoga breathing practice that deepens and steadies the breath. I've been practicing it intermittently for over a decade, less frequently in recent years. I take in a full breath, let out some of the air and pause for a couple of seconds. Then I let out more air and pause again. Finally I let out the rest of the air and relax as much as I can with empty lungs.

The new breath comes in easily and deeply on its own.  I'm aware of a strange tightness this morning, as if I can't get enough air.  My collar bones feel glued to my ribs.

After a few more breaths with the pauses on the exhale, I switch to the practice of viloma pranayama on the inhale.  I breathe in for four counts, hold for two and feel the belly rising.  I take in more air, pause and feel rib cage expand even more.  I almost have to force air into the upper chest -- it feels so tight -- and when I breathe in, I begin to feel something.  The collar bones lift and pull on the connective tissue below.  It hurts a little, but it's a good hurt, the sweet pain of releasing congestion.  I hold for more than 2 counts waiting for the pain to dissipate, but it doesn't, so I let the breath out slowly and steadily.

Ten, fifteen minutes later, I am still tight.  This is very unusual for me.  My mind is calm, so I can't blame my tension on worrying.  And despite the early hour, I feel well rested.

I check the time on the alarm clock --  5:25 am, and do some calculations.  I went to bed at 8:30 and fell asleep immediately, so that makes nearly 9 hours.   I decide to get up and meditate while the sky has a faint hint of light and the world outside is silent, except for the crickets and a chorus of birds.

In meditation many thoughts come to me, but the ones that hook my attention are about this new tightness in my chest.  What could be causing it?

I had a picc line installed at the hospital Monday afternoon, but I don't think it is the source of my problems.  Picc stands for peripherally inserted central catheter; it makes it easier to receive intravenous medications. The surgery (a sterile outpatient procedure) was painless but for the prick of a Lidocaine-filled syringe piercing my skin. I lay on a hospital bed covered in sterile blue paper sheets.  The nurse wore one of those cotton shower caps, a mask, and a sterile paper gown over her scrubs.  With an ultrasound monitor showing her exactly where to poke and push, she fed a long, slender, flexible tube through a hole in my upper arm, and advanced it until the catheter tip terminated in a large vein beside the heart.  Even though I was curious, I turned my head and didn't watch.  I was afraid the visual image of something going into my body would haunt my dreams.

The procedure finished late, causing me to miss my first scheduled I.V.  Hospital registration had taken 40 minutes thanks to three ambling old codgers ahead of me whose walk from waiting room chair to intake office took 5 minutes apiece.  (How long did it take them to find their Medicare cards?)  By the time I got into a bed, the nurse had gone to take care of other patients and I had to wait 1 1/2 hours before she came back.  Then, a chest Xray showed my line was 1/2 centimeter too far inside so I had to have it shortened.  Nevertheless, I felt elated when I walked out into the golden sunshine and felt the warmth of solar radiation on my cold hands and feet. I felt so good I went shopping!  And that evening I slept easily and well.

The parking lot was empty the next morning when I pulled up at the doctor's office, eager for my first treatment.  The I.V. nurse who came out to greet me was an old friend -- a terrific energy healer who had taught me much at the beginning of my journey in 1995.  The woman at the desk was an acquaintance from former yoga workshops.    All in all, I felt welcome and comfortable.

I was glad to have the picc line, for my treatment was utterly painless -- no burning, no sensations of cold or heat as I'd had in the past with other doctors.  I just lay back in a soft faux-leather chair reading the NY Times while medication dripped quietly into my veins.  By the time I left, every chair was full.

I felt no different afterwards, just hungry for lunch.  And here I'd been naive enough to think that getting intravenous amino acids would diminish my hunger!  I had awakened with a tremendous headache around the eyes and temples  I still had that awful headache which I knew was toxicity from the lack of a bowel movement.

I drove home, ate, and in the comfort of my own home, cleaned out my bowels.  My headache soon disappeared, but I was unusually tired.  I did some restorative yoga before dinner.

On my meditation cushion this morning, I realize that I haven't felt this much physical tension in my muscles and connective tissue for a long time.  I used to feel this stiffness come over my body every day and had to stretch two or three times a day to release it. I try to remember.  When was the shift?  I seem to think it has something to do with starting the methylation protocol, but I am not certain.  Perhaps it has been longer.

My medication contained amino acids, B12 as cyanocobalamin, B1, and a tiny bit of B complex.  I find myself wondering whether it has folic acid.  I've been avoiding the stuff on Rich's advice since I started the Simplified Five.  Rich thinks folic acid interferes with the active forms of 5 MTHF and folinic acid. Could this be making me tense?

I know I'm not using folic acid properly, or at least I wasn't when I started this protocol.  After three months, I brought seven of my nine abnormals numbers into the normal range on the Methylation Panel from Vitamin Diagnostics.  Folic acid surprised me by moving 5.5 points higher on the retest than it was on the first test even though I was studiously avoiding it in vitamins and processed foods.  It made me wonder whether some of us accumulate folic acid in our tissues and have to detoxify it as we get our methylation cycles working properly.

Whatever I got yesterday, it seems to be giving me lots of cardiac symptoms.  I felt a strong, irregular heart beat last night when I got in bed, and all morning I've had mild chest pains. Time to call the doctor's office and see what they recommend.

 

Wednesday, September 9, 2009

Intake Appointment

"You look healthy on the outside, but you're a mess on the inside," said my new doctor.  He had just examined me and looked at my test results.

His words reverberate in my head like the resonance of bells long after they've been struck.  This is the first time I've met a doctor who understands the significance of my abnormal test results, who understands what I'm dealing with and how hard I have worked to get myself to my current level of functioning.

I was anxious this morning.  Will he be able to help me? I wondered. Will he say he has nothing to offer over what I've already tried?  

After taking my history, he was quiet.  "I need to figure out if I can help you," he said.

Part of me wanted to say, "You have to help me.  You're my last hope."  But I kept silent and waited.  Tears had welled in my eyes when I related how I recovered three times after years of therapies only to crash and sink from a few weeks of emotional stress. I held them back.

He put his hands on my shins and felt the flow of energy through my legs.  He did the same over my thighs.  He poked my belly and felt the bones of my pelvis.  My heart beat too loudly.  What if he were to conclude I am just a stressed out neurotic, a malingerer...?   I calmed myself with long, slow breaths, urging my heart beat to slow to normal.

When he finished examining me, I sat up and pulled out a stack of 8 green file folders stuffed with lab test results.  He looked at my abysmally low amino acids.  He looked carefully through tests of metals and minerals, both hair and urine, dating back to 1994.  He glanced briefly at the results of organic acid testing with many acids below measurable levels and others indicating serious imbalances.  Then he set out his initial treatment plan.


  • Keep a temperature log, taking oral temperature twice a day.
  • Do a saliva test for E2 (one of the forms of estrogen) and progesterone
  • Start intravenous amino acid drips next week, 3 times a week, putting in a picc line if necessary
  • Order serum tests for testosterone and DHEA-s (both adrenal hormones) as well as infectious viruses EBV, Coxsackie, CMV, and mycoplasma (not a virus, but just as pesky a moocher living inside our cells)
  • After a week of building up with amino acids, I'll do a DMPS challenge test for heavy metals, using a dose low enough that it won't make me sick for days or months.
  • Neural therapy, with focus on scar where dental surgery was done early this summer.
What a relief!  He feels he can help.  He has a treatment plan.  He says it will take anywhere from several months to several years, depending upon how often I get treatments and how my body responds.

I am healing already.  My body has a fever for the first time in years:  99.2   It is not pleasant, but I take it as a good sign that my immune system is strong enough to mount a response to kill off some of the little critters who've been mooching off me for years.

 

Tuesday, September 8, 2009

Change: Welcome and Unwelcome

Change.  Yes, I resist it sometimes (even though I want things to change, and BTW, I voted for 'change.')  Lots of things are a-changing these days and I find myself judging them.


One of the biggest changes is my new hypersensitivity to computer EMR (electro-magnetic radiation).  It started with the purchase of a Toshiba netbook, which I loved because I could sit outside on the swing holding it on my lap while I typed and.or read.  But my hands reacted badly to the frequencies of its wireless technology.  And now, even though I've returned the netbook and dismantled the wireless router, I still get tingling everywhere when I sit at the computer and aches in the bones of my hands.  This is why I haven't posted a blog in some time.


The sensations are much worse if wireless is hooked up, as I discovered at my Mom's house this weekend.  She has a Logitech wireless mouse, which made my right hand hurt when I first tried it a year ago.  Now I can't work on her computer for even a few minutes, while my own desktop (denuded of wireless hardware, but perhaps harboring some software inside) gives me about an hour before the aching and tingling becomes unbearable.  


I have been told by a friend that Q link technology helps her.  Their website explains:

In 1994, the National Institutes of Health in the United States adopted a new term, the "Biofield", to describe a growing body of research showing a subtle field that permeates and extends beyond the physical body. The biofield is something you've probably already noticed: a vital force that animates our bodies and powers our daily lives. When our biofield is out of balance, we're out of balance. Disease, fatigue, and apathy all reflect a compromised biofield. When something improves our biofield, such as the Q-Link, it can increase our mental and physical performance, reinforce our natural immunity to stress and enhance our sense of well-being.
Every day, our biofields are negatively impacted by flickering computer monitors, irate bosses, cell phones, emotional stress, tabloid television, and traffic jams. We are literally bombarded with frequencies that wear us down. That's why it is essential to care for and maintain our energy system. 
 Q-Link products tune up your biofield through a resonant effect that harmonizes your energy and helps you to navigate more smoothly through a stressful world. Think of Q-Link products like tuning forks that remind your biofield of its optimal functioning state. Worldly stress and performance demands cause the biofield to become more chaotic and incoherent. Q-Link SRT products enable you to handle these challenges more dynamically - enabling greater efficiency, harmony, output and balance in everything you do.     
I'm willing to try it but I'm not too keen on spending $170 for a gadget that plugs into a USB port, or nearly the same for a necklace to wear around my neck.  I'd like to learn more, and find out from others with EMR sensitivity what they've done that has been effective.  Dr Mercola started a site with information about EMR that I haven't yet explored.

Another big change: my breasts.  They are growing, and growing, and growing.  I keep telling my body "You are 30 years too late!" as I recall hours at summer camp of aimless elbow slinging combined with the chant I must, I must, develop a bust.   Now, in my fifties, I no longer care to conform to the modern Western ideal of the ideal female body with oversized breasts but prefer the comfort and convenience of the classical Greek ideal.

Aesthetics aside, the problem is an indication that my hormones are out of balance, as they are for nearly everyone with ME-CFS.  Since I can't blame my inactive post-menopausal ovaries, I have to look for another culprit.  The most likely one is an enzyme in the body called "aromatase" which manages to convert steroids, through the fatty tissue, into estrogens.

I wonder if the methylation protocol could have an impact on this process.  With that question in mind, I go to the entry on aromatase in Wikipedia at http://en.wikipedia.org/wiki/Aromatase.  Here's what it says:

Steroids are composed of four fused rings (labeled A, B, C, and D in the figure below). Aromatase transforms the left-hand ring (the A-ring) of steroids to an aromatic state (hence the name) through oxidation and subsequent elimination of a methyl group.
Aha!  a possible connection.  Later in the same article, I read:

The enzyme is located in the endoplasmic reticulum of the cell and its activity is regulated by tissue specific promoters that are in turn controlled by hormonescytokines, and other factors. The principal action of the enzyme transforms androstenedione to estrone andtestosterone to estradiol. The aromatase enzyme can be found in many tissues including gonadsbrainadipose tissueplacentablood vesselsskinboneendometrium as well as in tissue of endometriosisuterine fibroidsbreast cancer, and endometrial cancer.  
Yet another change: My thyroid tests came back showing that my thyroid has become more sluggish.  For nearly 18 months, I've been off thyroid hormone thanks to a talented acupuncturist.  My last screening test, as compared to one taken a year ago, now shows increased TSH (the hormone that the pituitary secretes to tell the thyroid to work harder) and decreased T4 and T3 (the hormones made by the thyroid gland and converted to a form active in the cells).  Estrogen binds thyroid hormone, and this could be complicating the imbalance.  It is just one more example of how many factors depend upon the balance of other factors to function optimally.

I am still not outside the 'normal' range, but to take the stress off my body, I started taking 1/8 of the amount of supplemental thyroid that I used to take.  

And then there is sleep.  Two weeks ago I was sleeping away the mornings.  Now I am waking with the birds.  I think this change could be a response to taking Naltrexone, as it is the most common problem from this drug.  I started at a dose of 1.5 mg, increased to 2.25 mg., and am now taking 3.0 mg, and at the two higher doses, my need for sleep seems to have reduced.  

I also attribute the the Naltrexone an increased energy level.  I've found myself in the kitchen at night making marinara sauce (with tomatoes from our garden).  Two weeks ago we didn't think we'd have any tomatoes because we got hit by the blight.  David pulled off all the leaves, and in the picture below you can see the plants (once vigorous and 6 feet high) all dried up with a few tomatoes starting to turn red.   



We saved lots of tomatoes by ozonating them to kill as many fungal spores as possible and then ripening them in the house (putting the greenest ones in a sealed bag with a ripe banana).  


But perhaps it's not the Naltrexone.  Perhaps it's the adenosyl B12.  Who knows?  I'm just happy to have a little more energy.  I knew that increasing the variables would end my status as a lab rat....

And with that increase in energy, it's off to the gym for my dynamic 10 minute workout with weights -- a discipline I started last week and have now done 4 times.  Perhaps I'll turn some of this fat to muscle, which will, in turn, increase metabolic rate (including thyroid activity) and lower adipose-induced aromatase activity.  


As I sum up the benefits of eight months on the methylation protocol, I can say that I have definitely made progress.  My ability to stand has increased, and that has made me more functional.  Taking showers, preparing food and doing a small amount of clean-up no longer ruin the rest of the day. I rarely feel jittery, while the pounding heart only comes back when I try doing a little aerobic exercise.  I no longer suffer with that internal feeling of millions of little fireworks exploding simultaneously (unless I try aerobic exercise).  I am by no means well, but my ability to function in the relative quiet and seclusion of my own house has increased significantly.

In the meantime, the COUNTDOWN STARTS.  13 hours until I see the D.O. in Columbus who does neural therapy and acupuncture and who just might be the same person who helped Mike recover from a deadly case of ME-CFS.    There's a 50% chance, with only 2 DO's in the city who offer neural therapy.  In my next blog I'll let you know whether I, too, can be saved. :-)