Sunday, July 25, 2010

Taking stock before and after strep

"I'm not sure about a birthday party in September," I said to my sister this morning on a Skype call.  "I don't know if I'll have the energy."

"I thought you were getting better," she replied.

"I thought so too.   I'm doing things I haven't done for years, but I'm also not doing things like cooking.  I think my net energy expenditure is about the same."  I took a breath and sighed.  "Whenever I get tired, I start doubting everything."

I suppose that is how it should be.  After trying a gazillion therapies -- expensive supplements, i.v.'s, restrictive diets, electrical gadgets and more -- I am still not able to exercise and travel.  While my sister and mother are going to castles and Roman ruins in Germany, I sit in Ohio, looking out the windows.  At least the views from my house are wonderful, lush and green, like this view from the office window, where I am sitting at the computer.
Should I continue to be optimistic that Trivedi's blessings will continue to help me improve?

I ask this question after nearly three months.  I know my tendencies:  I am optimistic at the outset of each new thing I try.  I see benefits.  I believe it is helping me -- at first.  Then, after three or six or nine months, I look back and see that my progress has been infinitesimal.  And I have to admit that I engaged in quite a bit of wishful thinking projected onto reality.

"I think you're improving," David piped up.  "You're living with the ups and downs every day, but I see significant changes."

After the call, I pressed him to clarify.  "You have more energy... for just about everything.  You're more vibrant.  You're not lying around all the time."  Hmmm, can I trust him, or is he also a willing participant in POWTOR --the projection of wishful thoughts onto reality?

I look back over the days since my last blog: 11 days ago.  Yes, I did have quite a bit of activity.
Thursday and Friday we drove up to Detroit, met with Dr. Martin Lerner and picked up a Holter monitor, drove to Ann Arbor, stayed overnight with friends, drove back to Detroit, stopped in Toledo, and drove home.

In Ann Arbor, I did two things I would not have dared do earlier the month before:  walked around a farmer's market in the heat and then went into a museum, 25 minutes before closing time.  Afterwards, I did yoga for an hour, then talked with friends for 2 1/2 hours and even helped with the dishes.  I felt NORMAL all evening -- to the extent I can remember what normal is!  I paid the price at night by not being able to fall asleep, until, after 6 hours of tossing and turning, I got the bright idea to put the sofa-bed mattress on the floor and woke David.

The next day I felt more brazen:  after lunch in Toledo, we stopped at this amazing all-glass building across from the art museum, where we toured the exhibitions of old glassware and modern glass art.  We spent nearly an hour on our feet, and while I was tired afterwards, I didn't feel sick.  I put my seat back, raised my feet onto the dashboard, and let David drive the remaining 2 1/2 hours to our house.

Saturday we had company for dinner (I made salads and dip, David grilled the meat) and then drove an hour to Wooster to see the old musical, Gypsy.  Afterwards, we went out for ice cream. By the time we finished  after 11, I was not only tired but had a sore throat.

I thought it was the typical CFS sore throat that has been bugging me for the last few months, but I found out on the following Wednesday (after two days of a low fever and all over aches) that it was a strep infection.  I left the doctor's office with amoxicillin capsules and a promise to rest and drink plenty of fluids.

Reluctant to take antibiotics, I kept thinking this is the strep coming out of me after all these years.  I kept thinking of Reckeweg and German homeopathic caveats that antibiotics push the infections deeper into the body and set the stage for chronic illness.  Hadn't I taken tons of antibiotics, for strep throat, tonsilitis, you name it, in the years before I came down with CFS?  As chronic disease reverses, the suppressed infections and toxins have to come out, as as they do, they produce the very symptoms that were once suppressed.

I decided to hold off another day.  I added monolaurin to my regimen of salt water gargles (reduces swelling), xylitol (it kills strep!), and ProBoost thymic protein A (supports T-cell maturation). For the first time that night since the gluten episode, I didn't wake multiple times during the night and had normal urination.  My kidney-adrenal meridian had recovered from the setback.

Thursday, miraculously, I felt fine.  My throat didn't hurt at all, and I had no fever.  I read e-mail, rested, and drove to Columbus for satsang, a gathering of friends who chant and meditate together.  The antibiotics are still unopened.

I felt great until I got home that night and got very upset about one of those relationship issues which I know is not important but I just couldn't seem to surmount.  The emotional turmoil spilled into Friday, despite 11 hours of sleep, and we didn't have a chance to talk it through until late Friday night.  

Saturday.  Energetic after I awakened at a record late: 11:40 am, I did a load of laundry after showering, hung it out to dry, then started another load.  By 3 pm I felt tired.  Was I trying to do too much? After three days of fever followed by three days of emotional turmoil, I should take it easy, I told myself.   Yet I felt such a compulsion to get things done.  

That compulsion is the most significant difference.  In the past I have recovered the ability to exercise, the ability to concentrate, read, and work, and the ability to sleep through the night.  But I have never before recovered the motivation (or ability) to get little things done around the house.  While I peer into the pantry closet and wish I could tackle a big project, I am mostly content to be tackling little projects. They will all add up, bit by bit.  

I know in my heart that someday I will surmount the disorder that accompanied my fall into ME-CFS.  I look at the stacks and boxes on the bookshelves at my future projects.  They no longer seem impossible.  

Next blog: my experiences at the San Diego Trivedi retreat.  I leave in 3 days and return on August 2.

Wednesday, July 14, 2010

Down on gluten

Last blog ended with a big error:  I ate lots and lots of gluten!

It was about 1/3 of a bowl of whole wheat penne that, in my CFS brain-fog and end-of-the-day fatigue looked more like brown rice pasta than they really do. Oops!  I swallowed 4 Glutenzyme capsules (DPP IV, an enzyme that breaks down gluten), 2 pancreatic enzymes, 1 Interfase (carbohydrate-digesting enzymes) and said lots of prayers.  I knew the best I could hope for was a temporary setback, as I hadn't had anything more than a few milligrams of gluten for 8 years, usually from cross-contamination, and that had been enough to cause next day diarrhea.  I did a colonic to limit the amount of stuff in my colon, just in case.

Well here's what happened:  I had chest pains that evening. I had chest pains all the next day.  I had normal stool the next day and on subsequent days but, I started getting frequent urination and waking several times during the night with volumes of pee 3-4 times the normal amount.

In my training in natural endocrinology I learned about the adrenal alarm clock -- waking at 3 or 4 am with the urge to urinate.  Clearly the gluten set off my adrenals as a major stressor, and they still have not returned to their pre-gluten state. I don't know if this happens because the immune system is still activated by the increased T cell production or if there is some other explanation.  The bottom line, though, is that it is still happening a week and a half later.

Also, I am more tired, and I am getting swollen glands again.  What a sore surprise!

For those of you following my reactions to the Trivedi blessings, I must be confess to a relapse in confidence as well.  With my energy low, my mood is lower and darker too.  I haven't given up on the Trivedi Effect, but I certainly am finding that it wears off over time.  Consequently, it doesn't seem to have the power to move new obstacles out of the way, although I have found it to move out obstacles which seem to be present at the time of the blessing.

As I am planning to attend another retreat at the end of July, I am hanging onto the lovely possibility that I will leap forward on my healing journey in a mere two weeks.  In the meantime, I am hoping that my system will settle down.

If anyone knows what might help, please let me know.  Acupuncture perhaps?  Sometime to soothe the gut like l-glutamine?  I'm at a loss here and welcome your help.

Monday, July 5, 2010

Temporary Setback

Shortly after my June 26 post, I felt like moving around and decided to try taking a bike ride.  David put the bikes on the back of the car and we drove a mile to a lovely, wooded bike trail running along the scenic Kokosing river.

Cautious Me said "Let's turn around at the 1/2 mile marker."  And so we did.

But when we got back to our starting point near the parking lot, I was still feeling good and Incautious Me gave into the longing to ride over to the old railroad bridge overlooking the river.  So off we went.

I counted each pedal push.  One two three four....keeping a steady pace and reaching about 120 (I no longer remember--but it was the next 1/2 mile marker), and, after imbibing the view with delicious delight, turned around to head back.   

Filled with excitement, Incautious Me remembered having read recently about the benefits of alternatingn 30 sections of intense activity with restful activity, and forgot all about Cautious Me's intention to take it easy my first time out.  I pedaled as hard as I could and coasted.  It felt wonderful!  I pedaled fast again, and again, covering the last 1/2 mile to the car in a state of absolute joy. 

Still energized at home that evening, I congratulated myself.  I told a few friends about my stupendous accomplishment:  "I didn't feel sick at all," I bragged.  "I haven't been able to do anything fast since the summer of 2007! This Trivedi has truly worked a miracle!"  I even fell asleep that night with ease.

End of miracle.  I woke early with huge swollen glands.  I had PEM (post exertional malaise).  I ached all day,  rested as much as I could, and by the end of the day I had a teeny tiny bit of energy.  But it was still downhill from there.  Sleep was nearly impossible for the next two nights.  My glands remained continually swollen for the next 3-4 days until I graduated to intermittent swollen.

Eight days later, I still have enlarged glands. And they hurt whenever I tire.  So much for starting a regimen of regular bike rides! 

What I think is going on is that exercise causes the virus to multiple.

For example, look at this study in Psychosomatic Medicine 63:891-895 (2001).

OBJECTIVE: The objective of this study was to determine the effects of stress and spaceflight on levels of neuroendocrinehormones and Epstein-Barr virus (EBV)–specific antibodies in astronauts.

METHODS: Antiviral antibody titers and stress hormones were measured in plasma samples collected from 28 astronauts at theirannual medical exam (baseline), 10 days before launch (L-10), landing day (R+0), and 3 days after landing (R+3). Urinary stresshormones were also measured at L-10 and R+0.

RESULTS: Significant increases (p < .01) in EBV virus capsid antigen antibodies were found at all three time points (L-10, R+0, and R+3) as compared with baseline samples. Anti-EBV nuclear antigen antibodies were significantly decreased at L-10 (p < .05) and continued to decrease after spaceflight (R+0 and R+3, p < .01). No changes were found in antibodies to the nonlatent measles virus. The 11 astronauts who showed evidence of EBV reactivation had significant increases in urinary epinephrine and norepinephrine as compared with astronauts without EBV reactivation.

CONCLUSION: These findings indicate that physical and psychological stresses associated with spaceflight resulted in decreased virus-specific T-cell immunity and reactivation of EBV.

Of course, a little bike ride is nothing like the stress of a journey into space, but all exercise raises norepinephrine and epinephrine (noradrenaline and adrenaline).  And lots of studies now show that any kind of stress raises EBV levels, reactiving the virus.

I suppose it is the same thing with Coxsackie B3, the virus for which I had the highest antibodies when checked in early May.  Of course, scientists don't make these suppositions without testing them...

Although I'm not a scientist, I googled Coxsackie B3 and stress and got a lot of hits, including a few showing the mechanism (protein kinases) which is activated by stress and which causes Coxsackie virus to multiple and spread to new cells.  I'm guessing my swollen glands are evidence of my immune system's attempt to fight the new viruses.

Let's hope the immune system wins the fight!  I am trying to be cautious about rest and food.  I am taking a product called ProBoost, thymic protein A, which helps T cells mature quickly so they can diffuse through the blood stream and do a great job of hunting down free viruses.

I also picked up Chinese herbs from my acupuncturist in Maryland.  Shuang Huang Lian (a combination of honeysuckle, skullcap, and forsythia) has been shown in many Chinese medical studies to be quite effective against the Coxsackie virus.  My acupuncturist added another 10 things to "protect the heart, support the immune system, support elimination" and several more things I didn't get through her broken, accented English.  I did get the names in transliteration and will check them out.

But I should have called this blog Temporary SetbackS, because I managed to create a major challenge for my immune system tonight:  I accidently made David's whole wheat pasta for my dinner instead of my brown rice pasta (same shape, penne) and I ate about 1/3 of a bowl before I realized my terrible mistake.  I grabbed four Glutenzyme enzymes (they supply the enzyme that helps digest gluten).  Then I swallowed two Wobenzyme tablets (general pancreatic enzymes) and then an Interfase (enzymes that help digest various forms of carbohydrates.)  By taking all these enzymes, I figured I'd take the strain off the digestion in order to maximize the ability to digest gluten peptides.

For those who don't understand gluten sensitivity, what happens is that the gluten peptides are presented to the immune system as if they were "bad guys" like viruses or bacteria.  The immune system then goes about making antibodies to the gluten peptides (called gliadins).  So it's a waste of my immune system resources to fight the harmless gliadins.

Also, any kind of immune system activation increases the stress response.  I can already feel it in my body as chest tightness.

Three years ago I got a smaller amount of gluten at a restaurant in Aruba where the owner assured us there was no 'wheat' in the cornbread.  There was!  I spent the next morning in closest proximity to a toilet.

I'm trying to take a yogic approach and see this mishap as "for the best."  So far I'm not hugely successful.

Yet despite the bike ride and its aftermath, I did have a very good day today.  I found myself spontaneously cleaning out a cabinet, actually two cabinets, this morning when I went to put something away.  I was active for nearly an hour, although seated a good portion of the time.  And I marveled afterwards that I'd had the energy and motivation to do this somewhat abhorrent task!  I also washed the breakfast dishes and went to two stores.  Then I was ready to rest and stay off my feet for the remainder of the day.

I have a good feeling that, even if tomorrow is awful, I'll bounce back in a few days and continue to improve.

In the meantime, it could be a few days before I get the chance to respond to comments and e-mails.  I need to take it easy for a while longer.