Thursday, October 14, 2010

A Dream Come True

5 1/2 months after meeting Mahendra Kumar Trivedi, my dream of a happy, fulfilling life is coming true.

I have received so much from the Divine energy that Mr. Trivedi makes available to all of us who long to be whole, healthy, and happy -- so much that I am reveling in gratitude and fun.  Each week I move closer to my vision of robust health and vibrant energy.  More details later.

This week marks the realization of another dream:  a research study on the Trivedi Effect with ME-CFS patients.  We started yesterday with a small group of 11 people  meeting with Mr. Trivedi in Santa Cruz.  He spoke for awhile, answered questions, and then gave everyone in the group a blessing.

Although our study protocol was set up to do a telephone conference and blessing today with the other 30 or so participants, Mr. Trivedi (whom I call Guruji, meaning 'respected  teacher') was so very enthusiastic about helping these sick people, that he invited all of them to join the call today.  Consequently, we had a very lively call with quite a bit of conversation.

Guruji asked people from this group to talk about what they experienced over the last 20 hours.  One woman said she felt more peaceful, calm, and energized.  Another said she felt exhilarated.  A third said she realized she had a lot more energy at dinnertime last night, even though she was tired today after traveling 6 hours yesterday for the meeting.  

Our host was Sheila Ulrich, the author of  Living from the Heart, Song of My Soul, and Be a Cancer SurvivorSheila continues to inspire people with her blog as she shares the wisdom she has gained from her healing journey.  Her calm presence and her articulate explanations enriched our call and were 'inspiring' to at least one participant who wrote to me privately after the call.

Guruji started out by speaking about medical theories of illness.  He said that whenever a new illness comes along, there is lots of research for many years on it. After a decade or so, someone will come up with a theory, and everyone will think that is the cause of the illness until, 10 years later, another researcher proposes a different theory.  To my mind, he was telling us Don't worry about what is causing your illness, this symptom or that symptom.  The theories will change again and again.  To get well, we do not need to know what the medical researchers think.  They don't really know.  Only the divine knows the truth.  And the Divine will guide our transformation back to health.

Then, he spoke at length about the energy that he has been sharing with people for the past 15 years and testing in scientific laboratories with living things (plants, animals, microorganisms) and solid matter. (To read more, go to  He explained that he works with a unified energy field, and compared this idea to Albert Einstein's theories of the unifying principles of all energy.  The details were above my comprehension, but I got the point that this energy is much more powerful than all the little, specific kinds of energy we often talk about, such as cell phone radiation, gamma rays, x rays, sound, heat, electro-magnetic energy, and so on. These small forms of energy do not block this powerful universal energy. 

Guruji also emphasized that this energy, which he refers to as the Divine energy, is intelligent.  It 'knows' exactly what must be done for each individual.  One person might need to find a mate to be happy, another might need to improve finances, a third might need to release pent-up grief and anger.  The energy starts working on each individual, producing whatever transformation that person seeks, in its own way.  Guruji has explained at other times that we can pray for what we want, but we cannot set a time line for transformation.  Nor can we determine the order in which things will happen.  We must try to release our limiting beliefs and trust in the wisdom of divine intelligence to give us exactly what we need.

As our ability to listen and trust expands, we begin to hear our inner voice guiding us.  This is when we must be vigilant to act on our inner guidance as we let go of inhibitions and restraints that previously caused us to compromise or to deny what our spirit needs.

We deny spirit to please others, to get approval from others, to conform to social mores and conventions, to fulfill parental and familial expectations.  When we deny spirit, we create an unhealthy situation inside.  We build up negative emotions leading ultimately to hopelessness and despair.  And we build up physical disease.  As we learn to listen to spirit, to act on our inner voice, and to release the limiting beliefs of our previous experience, spirit begins to do its work of kicking out diseases from our bodies.

Consequently, when one woman said that she started crying throughout the blessing, Guruji responded that crying was a very good response!  It showed that the energy was working to clear out all the past traumas from compromising spirit.

Near the end, we had a few questions. After having been sick for the last 2 days from going into a moldy building to eat dinner and listen to a lecture, I asked whether this energy could be used to rid buildings of mold for those of us who are very mold sensitive.  Guruji answered that mold sensitivity is common in spiritual people, because our bodies do not want to be contaminated by anything that is harmful!  He said that mold remediation (cleaning) of our living spaces and avoidance of mold in public buildings is the only way to deal with the mold issue, because we don't want our bodies and our spirit to become less sensitive to things that are bad for it.  He shared that he also cannot tolerate mold, and told us that he recently had to cancel a retreat scheduled for the end of October in Charleston SC because the retreat hotel had mold contamination.  Then he went on to say that those of us who were sensitive would ultimately help others avoid getting sick.

This is a very interesting way to think differently about a situation that many of us see as a problem with our bodies.  Because we react to so many places in the outside world as 'toxic', we begin to see the world around us an 'unsafe.'  The image of all of us getting well and saving others from the toxic effects of mold and chemicals brings a smile to my face.  May it become a reality within my lifetime! 

Those of you who've heard Guruji know that my words are a poor paraphrase of his words, but it is the best I can offer with my limited understanding of this energy.  It is much easier for me to talk about how I experience the blessings.  And I will do that at another time.

Wednesday, September 8, 2010

Internal doubts, external confirmation

Having been sick with ME-CFS for 23 years, I've had my share of ups and downs.  I've tried a gazillion treatments (well, maybe not quite that many!) and have benefited from many of them.   Most of the treatments with benefits have given their gift of improvements fairly early on, in the first month or two.  Then things seemed to plateau and, even though I'd press ahead hoping for more benefits, I'd eventually stop treatment and try something else.

A few have been devastating, such as raw juice fasting, and others have set me back 3-6 months, a mere blip in the life of a PWC with patience.  Some of those setbacks were not obvious at first:  I only realized them after several months of dogged persistence.

Consequently, I am always analyzing and judging.  Is what I'm doing making a difference?  Am I getting better or am I getting worse?

It's a difficult question to answer because variable symptoms and changing symptoms characterize this illness. One morning I may have wonderful energy and a clear mind.  I will think, At last!  I am finally getting to a point where I can do x, y, or z.  Then in the afternoon I may start to feel sick -- with a cold, or a sore throat -- and I will start thinking, I overdid it again. When will I ever learn?

The assumptions behind my thinking are:   I can control my symptoms by rest; therefore I cause my symptoms by over-exertion.   This is a reassuring illusion I have created to deal with the unpredictable nature of this illness in a world that I grew up thinking was fairly predictable.  It is also lousy logic, although because of PEM (post-exertional malaise), we get lots of experiences to confirm this faulty belief.

I got through childhood and early adulthood thinking not only that the sun would rise in the morning, but that I'd be the same person tomorrow that I was today, that I'd do certain things I had planned to do, and even if my to do list was too long for tomorrow, I'd get to most of the things on it by the day after tomorrow.  That predictability could be illusory (and that some Eastern philosophies claimed it was) went way beyond my consideration, except for the most obvious situations involving risk taking that could lead to bodily harm or death.Even in such situations, however, there was a certain predictability, because I could predict that walking in a certain neighborhood alone at night was more likely to lead to bodily harm than walking in the daytime and in other neighborhoods.

One of the hardest things in ME-CFS is living with uncertainty.  Like the kinds of traumatic stress that lead to chronic PTSD, the uncertainty caused by this illness, combined with the tremendous losses it creates, leads to its own kind of stress disorder.  I, and most of my friends, have lost our intellect, our physical strength, our stamina, our clearheadedness and executive functions (decision-making, prioritizing), and those of us with more severe cases have lost our independence and financial security.  The losses further complicate the physical symptoms by creating a roller coaster of emotions.  

My emotional roller coaster generally looks like this:  disappointment -> anger -> fear -> more disappointment -> despair -> relief -> hope.  

The roller coaster of recovery has been much the same, but without despair.

Consequently, it was reassuring to get positive reinforcement from my mother and my sister, when I saw them at the end of August.

My mother tore the cartilage in her knee in early August and, when she set a surgery date on Aug 18 for the following Monday, I picked up my life and drove to help out.  Normally, my mother does a lot of taking care of me when I visit, since I'm usually tired from the 7 hour drive, and since she still likes to do mothering things like making dinner.  This time, however, I was not just on my own:  I was taking care of her.

I quickly became exhausted.  In fact, the first night I arrived, I became too exhausted to finish the dinner dishes, and could not restore myself to balance with lots of yoga and lying around.  But it was a great learning experience, for it made me aware of this important fact:  I have not had this kind of over-exertion/stress reaction for 3 whole months.  And I have been doing more and more and more.

The following days, while dealing with a recurrent cold, I continued to do what I had to do.  I was always tired, and probably lay down twice as often as I do at home.  But in doing so I discovered another amazing thing:  I am actually feeling rejuvenated after resting, which is quite a new experience for me (or rather a much-missed one from my pre-CFS days.)

My sister came in for 2 days, helped a little with dishes and errands, but also increased the energy required for conversation, and the overall level of busy activity in the house.  By day 4, just as I was complaining to my mother about how often I needed to rest, I got the most wonderful feedback.  She and my sister had been talking about how different my energy seemed to be, that I seemed more vibrant, that my walk was stronger, that I seemed capable of getting things done more efficiently.  Wow!

Mom's comment made my week, and now that I'm back in Ohio, I remember her assessment as I cope with yet another new phase of my healing journey, one I'll talk about in my next post..... whenever.

Saturday, August 14, 2010

Forty improvements

I still feel good. Hurray!

Even though there have been some days when I was really tired, and a few nights when I could not fall asleep until 6 am, I still feel better than I did before. My fatigue has a different quality to it -- less of a sick fatigue feeling, more like the fatigue I used to feel when I was overworked and under-rested.

Nevertheless, I find during low energy states that I start doubting everything.

Am I really improving?

Could this be my imagination?

I'm not doing nearly as well as I like to think.

Many variations of these thoughts flutter through the synapses of my brain. I grab onto them, letting them weight me down with self-pity, fear, and disappointment, collecting them until I am more tired, more sick, and more wired.

I know this pattern too well. It's one that developed as ME-CFS became chronic. As fluctuating symptoms sent me on an emotional roller coaster, leaving me frustrated and powerless, I gradually discovered ways to gain some control. If I become hyper-alert to slight fluctuations in my physical state, I could avoid the worst symptoms.

Thus, if I realized I needed to eat before I felt hungry, I could avoid the crushing symptoms of fluctuations in blood sugar. If I put on socks and a sweater the minute I felt cold, I'd be less likely to get a runny nose. If I sat down, or did yoga, as soon as sensations in my feet indicated I'd been standing long enough, I could avoid a full-blown attack of POTS. Thus, this hyper-vigilance served me well in becoming proficient at my own self care.

But it also limited me because I became conditioned to think that my limit today would be the same as my limit the day before. I wanted a certain modicum of stability and predictabilty. And so, without realizing what was happening, I slipped from caution into fear.

As I lay in bed the day the San Diego Trivedi retreat ended, I noticed the fearful "What if?s" arising in my consciousness. What if I feel sick again when I get home?  What if I get stressed again on the flight? Will I lose everything I've gained? I had an internal dialogue, trying the subdue those anxious thoughts. Yet I knew they would return more insistently when I returned to the environment in which I'd been sick for so many years.

Enter Linda White, a shaman/healer living in San Diego, who had given me a ride home the first night of the retreat, and who had offered to help me work with "those conditioned thought patterns and beliefs that have to change in order for us to get well." "The key to not falling back into old patterns," she said, "is to develop new patterns to heal and replace the unconscious conditioning."

I could see how powerful was the downward pull of my mind, how I kept identifying with my sick body and wounded spirit-mind even though I wanted to identify with the new radiant, expansive, energetic me! I made an appointment for the next day, where I learned two affirmations that allow me to return to that radiant, expansive state even when I am tired.

Next, while waiting for my flight to board at the airport, I wrote a list of every little way in which I have improved since meeting Mr. Trivedi on April 30. I knew I'd return to this list the next time doubt, fear, and fatigue clouded my awareness of my transformed self.

Nearly two weeks later, everything on the list is still 100% true. And while I returned to the list to type this blog post, I never had to look at it. I merely remembered it and felt my inner organs smile. Then I could do the centering technique and move back into a peaceful state.

Here is my list, weighted towards my physical symptoms.

  1. no more post dental surgery bad breath
  2. improved sleep
  3. no more palpitations
  4. less tachycardia (documented in blood pressure monitor log)
  5. less chest pain
  6. more stable blood pressure
  7. higher average blood pressure (closer to optimal)
  8. infrequent dry mouth
  9. less volume of urine
  10. increased desire to do things
  11. ability increased to deal with mental challenges
  12. tasks previously frustrating now seem moderately easy
  13. waking only once a night often
  14. waking usually only twice a night when stressed
  15. falling asleep more easily
  16. return of sexual desire (when not tired)
  17. more swollen glands (before San Diego retreat)
  18. more sore throats (before San Diego retreat)
  19. more pain & inflammation in damaged right eye
  20. recovered quickly from strep throat infection
  21. immune system mounting fevers
  22. able to eat cow dairy (mmmm ice cream)
  23. able to drink caffeinated tea
  24. able to drink decaf coffee in morning
  25. orthostatic intolerance less severe
  26. able to stand long enough for personal care like showering, meal preparation and clean-up
  27. recover from overexertion more rapidly
  28. can take short walks (20 minutes)
  29. less soreness after exercise
  30. shorter duration of soreness after exercise (weights, yoga)
  31. at retreat, danced freely one song and did not get sick
  32. can manage on less sleep when necessary
  33. reduced mind chatter
  34. able to do small projects around house
  35. rarely feel cold, except when tired
  36. rarely get wired, hyper state
  37. recover more quickly from wired state
  38. feel lighter, more expansive
  39. more optimistic most of the time
  40. experience waves of gratitude and love
In the last few days, the unfolding of energy is working hard to heal my emotions, especially those associated with my marital relationship of fifteen years duration.  My partner went to Northern California when I left for San Diego and stayed an extra 8 days.

The first night of his return, I felt a hollow in my heart center which led me to talk with him and realize, to my amazement, that the next phase of my healing journey is about our relationship. At the end of the retreat, I had thought, apparently mistakenly, that it would be about finding my path of service and work.

But the energy of the Trivedi blessings unfolds in ways we can’t anticipate.I remember Guruji Trivedi stating on one of the knowledge calls that he can’t know what will bring happiness to any individual, since for one person leaving an abusive relationship might be the path while for another finding a soul-mate will happen.
Two days later we argued about something that had been bothering me for quite a while. I wanted to ‘let it go’, but I felt my anger flare. It was apparently unimportant enough in the big scheme of things that I can no longer remember what we argued about a mere two days later! But argue we did.

In this unhappy state, we went our separate ways until, in late afternoon, when I was sitting in bed feeling sick, I initiated a conversation and found the heart-hollow feelings of the previous evening re-emerging with a new level of awareness.Had I journaled soon afterwards, I might have remembered what that was. But the memory is gone now…for more thoughts and feelings came to fill all my consciousness. (And I guess my memory still has a lot of room for improvement)

Shortly after our peaceful reconciliation, I became aware how quickly I improved, how my swollen gland diminished, my sinuses cleared, and my temperature regulation began to function better, giving me a chance to write an earlier version of this post, which disappeared when I went to save it.. GRRRR!  Anger flared strongly again that night about my continuing-to-malfunction computer despite my having spent two weeks restoring it with a new OS, reloaded drivers and programs.

Late that evening, while I lay in bed trying to relax, I saw a pattern in my life that I had never before noticed. The awareness started with admitting that the very things I was judging in my partner were issues I also had: e.g. being self-absorbed, starting and not finishing things, taking on too much, not acting according to the priorities I want to choose but out of old conditioning.

The most powerful of these was seeing how much I had been self-absorbed since coming down with ME-CFS in 1987. That trauma, on top of the traumas of a failed first marriage and a beautiful intelligent daughter lost to autism, left me in the vulnerable state of looking outside myself for a fix. I didn’t know what I wanted or what I needed to fix. Yet I believed that a loving, nurturing man would make me feel better. And so I fell victim to men who offered care-taking, who were willing to put up with my self-absorption and neediness, who seemed strong, able-bodied, and emotionally together, all the time being blind to who those men really were.

It seems now that everything I have been angry about is coming to the surface and that I no longer have the capacity to ignore it. I feel how these emotions disconnect me from spirit, making me contract into a hard tight dense being which doesn't allow the energy to flow freely through.

Guruji Trivedi reminds us that we are all capable of being perfect conductors of divine energy.  We just have a lot of resistance, unlike animals and plants, all of which respond to one blessing.  Most of us humans need one blessing after another as we struggle to release ourselves from physical, energetic, and mental-emotional patterns that create resistance to the currents of grace.

Monday, August 2, 2010

I'm feeling FABUILOUS!

The Trivedi retreat ended yesterday after 5 pm, and boy did it transform my state!  My excitement is as palpable as champagne bubbles!  And indeed, I even drank champagne yesterday, for Trivedi (known to those of us who love him as Guruji) brought out champagne for all of us to have several tiny sampler glasses.  This was surely one of the highlights of the retreat for an alcohol-intolerant PWC like me, who can't even remember the last time I indulged in a few delicious tastes of that bubbling wine.

Here's what happened.  Twenty bottles of cheap champagne were poured into a large glass vat.  Volunteers filled 200 tiny cups and gave us each one as Guruji guided us to observe the size of the bubbles, the way the bubbles felt on tongue and palate, and the overall enjoyment of flavor and smells.  Then he took 10 minutes to work with his mind to send 'instructions' to the champagne to transform.  Samples were distributed again where we could all compare the blessed and the unblessed champagne.  The blessed champagne had bubbles that were much smaller, abundant, and better distributed.  The taste was also improved.  He did the blessing a second time and we got a third cup.   I even had a fourth cup when they had some extra.

He did this demonstration to help our minds overcome resistance.  We are all so skeptical.  Since we don't understand what he is doing and why it works, we tend to think that it can't really make a difference.  After all, how powerful are thoughts?

Well I have experience with the power of negative thinking.  I know how I can make myself depressed.  I how can make myself tremble with fear.  How I can make myself sleepless and restless, angry or self-pitying.  All such emotional states have a toxic impact on my physical state.  They make it worse, each in their own creative way.

Although I believe in the power of positive thinking, I've had less noticeable success in this area.  If I'm feeling down, I'm not so good at changing my thought patterns and seeing immediate results in my physical state.  It is easier to fall than to climb a mountain, easier to relapse than repair, easier to fall from grace than to regain it, easier to lose money than to recover my losses.  That has been my life experience, and therefore it has become deeply ingrained in my thinking.

Yet I have 'talked myself' out of pain during dental procedures (without anesthesia/lildocaine) by diverting my thinking onto pleasant, happy memories.  I have shifted my conscious awareness away from my surgery site so I never needed painkillers after my eye surgeries. 

Trivedi makes me aware of my connection to the Divine.  Since I believe God has unlimited power, and certainly the power to create miracles, all I really need to do is remain aware of that amazing, expansive connection.

Energy flows naturally.  We see that with heat, with light, with electricity.  It's in its nature.  It is its nature.  As the physicists tell us,  both particle and wave co-exist in all matter.  The Divine healing energy is always flowing but I often block its flow through me with my thoughts.

I won't bore you with all the details of the retreat (at least not today.)  The important thing is that, by Sunday afternoon, when I closed my eyes to pray for what I wanted at the beginning of each blessing, I suddenly realized that I have already received EVERYTHING.  My body and mind could take a little time to catch up -- the way Dr. Cheney described his body taking eight months to realize that it had the heart of an 18 year old and no longer needed to tamp things down.  So I ended the retreat asking not for physical healing, but for things like more loving relationships, abundance, creativity, and peace of mind.

When my friend came home at lunch time, he said I now seemed just like he remembered me when we met some 28 years ago.  That was the most awesome testimony I could ask for.

For those interested in being part of a Trivedi ME-CFS study, you'll hear from me soon. 

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.


Saturday, June 26, 2010

Unfolding Blessings leading to recovery

Three weeks since the Trivedi retreat, I'm still bubbling with enthusiasm.  Every day I move closer to recovery, millimeter by millimeter.  Twenty two millimeters make an inch -- a real, visible difference!

I have moved up a notch on the Bell Scale from a 30 (during April relapse) to a definite 40 going on 50.  Dr. David Bell defines a 40 and a 50 thus:
40 Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 50%-70% of expected. Not confined to house. Unable to perform strenuous duties; able to perform light duty or desk work 3-4 hours a day, but requires rest periods.
 50 Moderate symptoms at rest; moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or desk work 4-5 hours a day, but requires rest periods.
The categories seem limited to me because I'm so much more focused on what I can do and, perhaps, because I've been sick so long I've forgotten what it is like to be completely asymptomatic.  Here are some of things I now can do, compared with 3-10 weeks prior.

  • now 4 loads of laundry in 4 days  v.  used to do 1 load in 3 days
  • prepare easy meals and clean up afterwards   v.  left cleanup for someone else
  • go the stores and do other things afterwards  v.  used to go to store and rest
  • skip nap if I get 8 hours of sleep  v.  couldn't function without nap
  • wake refreshed after 7-8 hours sleep  v.  exhausted and groggy in morning
  • 15 min anaerobic exercise (weights) without PEM  v. always tired after exercise and sick next day
  • shower, straighten up, do something else  v.  showering always left me tired
  • walk 4-6 blocks in divided doses   v.  used to walk only around the house

Since the Trivedi blessing energy worked on my heart, I've only had very slight palpitations, like a soft flutter, about 3 times -- none of that out-of-control forceful palpitations like a wild animal trapped in a cage. Recording blood pressure and pulse 2-4 times a day, I see a pattern of decreased tachycardia.  I recover my quickly from overexertion.

Standing is still my biggest issue.  If I have stress, if I don't sleep well, my blood pressure drops and I get symptoms of orthostatic intolerance after a few minutes on my feet.  If I am rested and relaxed, if my blood pressure is over 100 systolic and 75 diastolic, I am able to stand for a longer time without symptoms.  Because of the standing problem, I'm not quite back to where I was in March 2010, before relapsing.

I haven't pushed the envelope to see how far I can go.  I just find myself doing a little bit more every day.

To be fair, I ought to point out that I've had some symptoms re-appear.  I barely worked on the computer and didn't have time to blog for over a week because every night, by 8 pm, my right eye would ache, my right tonsil would swell, and my right shoulder and hip would hurt.  I'd have to lie down with an ice pack, or soak in epson salts for a hour to get a little relief.  It hasn't bothered me the last two nights.

Also new has been a few days of muscle tension.  In the past I had muscle all the time; this (as well as depression) got me into yoga.  I found that doing hatha yoga postures relieved my body tension; it also helped me deal with insomnia.  As unpleasant as it is, I'm celebrating that I now have the energy to get tense!  Hopefully I'll soon develop the energy for a vigorous-enough yoga practice to release the tension.

My attitude towards new symptoms has been positive:  I see them as the body's attempt to heal.  For the eye pain, I imagine my retina trying to repair the damage from the retinal detachment.  For the tension, I celebrate the capacity of my adrenals to make more stress hormone.  This attitude in itself is worth all the trouble I went to in Chicago!

May you all find a path to recovery!  I'm still working on developing a Trivedi effect (tm) study for ME-CFS in hope of helping those who can't afford to pay his fees for blessings.

Sunday, June 13, 2010

Blessed Healing

The Trivedi retreat last weekend in Chicago was an amazing experience.  I am still bubbling with joy and excitement about it.  It is transforming my life in a wonderful way!

The retreat itself was difficult.  I was lucky because I didn’t even consider the difficulties when I made plans to go.  If I had, I surely would have reconsidered my plans, fretted, made myself anxious, maybe even come down with a cold. 

Surely the blessings from the month of May were having a positive effect on my brain!  I hadn’t received everything I wanted, but I had received a great gift – a huge diminishment of fear.  Fear had propelled my relapse since the dreadful experience on March 26.  It had been the main focus of my work with energy healers during the month of April.  Now it was 99% gone.  A true miracle!

The hard part
The first night of the retreat, I was a mess.  I had walked too much: from the parking lot to the hotel entrance, from the hotel entrance to my room, from my room to the registration/meeting room, back to my room, back  to registration.  I lay on the floor, my calves resting on my front row chair, popping Folirinse B12 pills and praying that my heart would calm down.  I also indulged in a heavy dose of self-pity, punctuated with occasional anger at self, hotel, and conference organizers.  Trivedi’s discourse went well beyond the scheduled end time of 10 pm Central Time (11 pm on my internal clock).  I grew more and more tired, and more stressed – for overriding fatigue to stay awake always triggers my stress response.

Finally, it was time for the first blessing.  Since there was no free wheelchair to take me to my room, so I had to leave the retreat early and miss the blessing.  Once in my bedroom, I crashed onto the bed and burst into tears.  My prayers for healing of my cardiac symptoms were intense, fueled by urgency, desperation and self-pity.  Then I lay still, feeling an amazing calm pervade my cells.  I could feel the energy working powerfully on my heart.  It moved into my left eye and temple, and after a while, down into my legs and finally into my stomach and head -- all the areas where my illness has been most deeply lodged.  I fell into a deep sleep shortly after midnight.

I woke some 6 hours later, hungover with PEM – post-exertional-malaise.  Then I experienced another miracle.   I took a shower and actually felt refreshed!  (For readers without ME-CFS, taking a shower is usually a stress due to orthostatic intolerance, which gets worse in the warm water and leaves us feeling exhausted.)   I went down to the meeting room 90 minutes before the morning session started, lay out my yoga mat, and started doing a hatha yoga practice.  Again, I was amazed.  My practice was strong, and even more incredible was my greatly increased flexibility.  Grinning from ear to ear when the workshop started, I took my seat on the floor without collecting my sandals.  Hours later, when I discovered them ‘missing’, I hunted for them in a hall filled with 300 people without feeling the slightest amount of stress.

The high didn’t last.  By late morning I was exhausted.  Exhaustion intensified during the afternoon session, as feelings and traumatic memories emerged from their tombs.  I even dozed off and started to snore while Trivedi was talking!  I stayed in the room for the afternoon blessing and nearly collapsed trudging back to the room through a sea of people!  At dinner I was wired and intensely hungry.

That evening I was too tired to participate.  I lay in the back of the room, resting in corpse pose or doing a few gentle stresses to ease the pain in every vertebra and rib of my back.  Before the evening session ended, I was back in my room, too exhausted to sob.  I prayed for sleep.

The hardest part
PEM was worse the second morning, although I got 7 hours of sleep.  During the retreat, Mr. Trivedi talked a good bit about sleep.  He said that he only sleeps 1 to 2 hours a night, but he awakens refreshed and energetic.  He urged us not to attach to any theory or past experience about the optimal number of hours of sleep.  Instead, we should judge whether we were sleeping adequately by how rested and energetic we felt.  I was, in my mind, a dismal failure in this regard. 

I wondered how some of the other sick people were doing.  Mr. Trivedi has specifically urged individuals with neurological illnesses like MS and Parkinson’s to attend.  He had introduced us to a young man with autism that was responding to his blessings.  ME-CFS ought to fit into that category, I thought.  But were we beyond help?  Were we just too weak to detox?  Too toxic to experience an elevation in our energy state?

I wasn’t prepared for the onrush of emotions that flowed through me on the way to the meeting room.  By the time I had spilled my heart to a man in a wheelchair and his wife, tears were pressing against my closed lids.  I asked to speak to someone, and when a kind-hearted member of the support team sat down beside me, the tears streamed down my cheeks.  Little did I realize I was about to receive another blessing.

Mr. Trivedi appeared in the anteroom to the meeting hall.  “You are releasing traumatic memories?” he asked.  I shrugged.  All I could think at that moment was, I am way too sick to participate.  You should have shorter sessions if you want sick people to attend! Self-righteousness.  Self-pity.  Such frequent, unwelcome visitors to my consciousness.

“Come, sit down,” he said, pointing to the floor in front of his chair.  I kicked off my flip flops and dropped a wad of wet tissues on the floor.  “Hurry up!” he said.  “Don’t make me wait.”

What a trigger that was!  I do not like to be hurried.  I wanted to defend myself.  I wanted to argue.  But he was already telling me to close my eyes and pray to the God of my understanding.  I felt his hand on the crown of my head, as if he were pushing a switch.  The inner arguments stopped.  He brushed my forehead and few times and then told me to rest.

My eyes continued to shed tears for a few minutes at the back of the meeting room.  Then he began a group blessing which he introduced as a mild, 10 minute blessing.  I forced myself to stop crying and receive the energy.  In a few minutes, the urge to cry completely dissipated. 

As Mr. Trivedi talked, and as he invited participants to share their experiences, I sank into a deep state of relaxation.  Soon I was as soft and porous as a wet sponge.

In this state, it was a joyful experience to receive the fourth master blessing.  The energy vibrated through the pores of my being as a gentle, luminous vibration.  I felt as if every electron in my body were dancing in joy and delight.  I rested in the meeting room long after everyone else had gone to lunch, reveling in the magical transformation from dense unhappiness to expansive joy and peace.

More difficulties
I got up and danced over to the lunch room ---ha! in my dreams!  The real afternoon started with a mild headache and ended with an intense headache, achiness all over, chills, and possibly a low grade fever.  I was in a major detox!

When the retreat ended at the civilized hour of 4 pm, I went to my room, lay in bed, did an enema to release toxins, took activated charcoal, and lay in bed some more.  Despite my crappy physical state, I was exhilarated and enthused.  This helped me to recognize my symptoms as a powerful detox.  I rested all evening, taking time only to write in my journal until my headache and chills diminished enough to sleep.

The next morning, I awakened feeling slightly energized.  I took my yoga mat outside in the morning sunshine and again, enjoyed a strong practice.  My muscles seemed stronger than they had in the past 3 years, allowing me to do a few vigorous poses that I had abandoned since my relapse.  I tired quickly, celebrating my wonderful transformation.

I had scheduled a personal blessing for the first slot in the morning so that my friend and I could being our 7 hour drive to Ohio.  When I arrived at registration, there were 30 people ahead of me.  What a shock! 

I struggled with the urge to run.  I should leave now.  I’ll never make it on the drive home.  It’s already 9:30.  I won’t get out of here until 11:30, and if we get started that late, we won’t get home until 8:30 at night.  I’ll be exhausted.  I finally feel better.  I shouldn’t blow it.

I struggled with the urge to stay.  When am I going to get another opportunity to see Trivedi in person?  He told me to come see him Monday morning to talk about my autistic daughter.  I really should stay.  It would be crazy to leave now that I’m so close.

In the end, I sat in the cue.  When the sobs started, I was moved to a private room.  By the end of my 2 hour wait, I had come to realize that my alternating anger and sobbing were related to the pain of losing my daughter to autism. 

When I told Mr. Trivedi about my morning ride of emotions, he burst out laughing.    “That’s wonderful!” he exclaimed, and I caught his infectious laughter.

After the blessing, I was filled with a most wonderful peace.  I felt as if something huge inside me had shifted.  Lying in the back of my friend’s van as we drove East on I-355, I felt waves of humility and gratitude.  I wanted to lie at Trivedi’s feet.  I was now willing to call him “Guruji.”

Reaping the benefits
Yes, we got home at 8:30 pm, but no, I was not tired.  Nor was I wired.  Instead, I was abuzz with energy.  Even after midnight, lying in bed beside David, I felt the electrons dancing in every cell of my body.

It was vaguely similar to the charged up, high glutamate, high oxidative stress state of CFS when it feels as if each nerve ending is exploding in a show of miniature fireworks.  But it was pleasant, amazing pleasant.  And instead of being anxious about not sleeping, or anxious about anything whatsoever, I was filled with bubbles and bubbles of joy.

Each day this week my energy has improved.  I’ve had periods of detox, and periods of fatigue. I’ve slept 7 hours one night and 10 hours another.  But regardless of whichever symptoms appear from time to time, I’ve been able to steadily increase my activity. 

Here are some of my wonderful successes:
*      I stood long enough to prepare food and wash the dinner dishes
*      I walked around Whole Foods yesterday without feeling tired or afraid of standing too long
*      My body temperature has gone up to 98.4 degrees (it is usually below 98.0)
*      My pulse has come down to between 66 and 76
*      My blood pressure is less erratic, albeit still very low
*      I haven’t had chest pains or palpitations for 8 days
*      I have done midday relaxation sessions (yoga nidra) without falling asleep
*      Yesterday I awakened feeling refreshed from my 7 – 8 hours of sleep
*      Bowels working with less than ½ the amount of Mg and Vit C

In sum, everything I asked for at my first blessings on April 30 and May 1 has been granted.  Now, of course, I am asking for me.  I’d like to be able to take long walks, go dancing, drink wine, travel, and do something productive with my time.  I’d like to stop taking a boatload of supplements.

How far can this wonderful energy take me?

What’s next?
I’m hoping to interest the Trivedi Foundation in doing a study on ME-CFS patients, especially those who are bed bound or house bound.  If you would be interested in participating, leave a comment below with the following information:

Where you live (Country, State)
How long you’ve been sick
What level of functioning you currently are on the Bell Scale or the Energy Scale (approximate) and how much you have fluctuated over the course of your illness. 

USA, Ohio
23 years
currently 40%, (range: 30-85%)

Monday, June 7, 2010

Coxsackie B: My Nemesis

I sat at the computer gaping with amazement.  Dr. Martin Lerner, who I’ve heard about at my Columbus Doc’s office as “the guy who focuses on viruses and antivirals”, has been researching cardiac issues in CFS since 1993.  He has done Holter tests and echocardiography and biopsies.  He has found that viral reactivation is the cause of relapses.  He has published his research in peer-reviewed scientific journals, working together with academic researchers at Wayne State University.   His work is thorough, detailed, and firmly rooted in science.  No muscle testing ‘proving’ to me that gliadin-rich wheat germ oil will help me.  I clicked on one link after another, voraciously reading until my eyes glazed over and my brain melted into a puddle. 

Thank you Peggy Munson for linking to his work in your blog!  It is wonderful how we all learn from one another.  Sharing information and our personal journeys not only lessens the bite of isolation, but brings us closer to solutions on our own healing journeys.

I made an appointment with a local cardiologist and, two days later, showed up with a bibliography of Lerner’s publications and an article describing his theories.  They glanced over it, copied it to put in my file, and explained to me the tests they would order:  a stress test (with exercise or a drug to dilate the arteries), an EKG, a 24 hour Holter or a week-long incident Holter, a sonogram of the heart.  “I’ve had all those tests before,” I said, “except the stress test, which I can’t do because the exercise will make my relapse worse.”

“We’ll do it with the drug then,” she said.  And I knew then that I would not waste another day in a doctor’s office.  At least not this doctor.  Lerner had found abnormalities in the T waves of CFS patients while they exercised, something that wouldn’t be found with a dilating drug.   Nor would I consider taking a beta-blocker to ease my chest pain when my blood pressure often dropped to 85/57.  I called Lerner’s office and made an appointment.

Although I had cancelled nearly all of my appointments with my Columbus NT doc, I hadn’t burned all of my bridges.  I went in at the end of the week and asked him to draw blood to retest my viral titers.  In the beginning of treatment, he had done the standard screening and found me to have evidence of past infection of EBV and HHV6, confirming what Dr. Sue Levine and others had found.  He also found me to have a slightly elevated titer for Coxsackie virus B 6, again indicating prior infection.  As in the past, I had concluded that viruses were not a big issue in my personal variation of ME-CFS.  But now I had the idea that, since I had never been tested during a relapse, I might show a very different picture.  I knew from personal experience that stress reactivates viruses in the herpes family.  I’d seen Dr. Ronald Glaser’s bibliography on the role of stress as a factor in reactivating the Epstein Barr Virus.  The reactivation of this virus would explain my symptoms.

Lo and behold, I did show viral reactivation of EBV and HHV6.  But the most significant elevation of viral titers was for Coxsackie B3, an enterovirus known for causing myocarditis.  I had found the cause of my relapses.

I've been researching the Coxsackie viruses.  They have been connected with ME-CFS by Dr. John Chia, who has found that 80% of his ME-CFS patients have either Coxsackie or Echo Virus upon biopsy of the stomach.  Coxsackie B Virus 3 (henceforth CBV3) is known to enter the body through the gut and then infect the heart and brain.  Like most other viruses, it only remains in the blood stream, detectable by PCR, for a few weeks.  Then it hides inside the cells of various body tissues.

The more I read about CBV3, the more it seemed to explain every single relapse I've had since my first recovery from ME-CFS in 1990.  Viruses are reactivated by stress, and all my relapses have been brought on by stress.  While the first one (1994) was characterized by digestive complaints and emotional turmoil from PTSD, the next two (2000 and 2007) started with cardiac hyperarousal which, after a few weeks, led to an aggravation of brain issues, orthostatic intolerance, digestive issues, endocrine issues, and fatigue.  Even when I felt great for a few weeks in the summer of 2007, before relapsing, I was getting frequent tachycardia, palpitations, and chest pain.  And my urinary amino acid testings showed evidence of malabsorption, while my stool testing showed a perfectly healthy mix of commensal bacteria and no pathogenic bowel organisms.

Viruses stay in the body forever, although they can be contained by a healthy immune system.  Normally, I would have seen this as cause for distress.  I would have cried and whined and begun to feel hopeless. But since getting several blessings from Mahendra Kumar Trivedi, I have believed that my body is capable of healing.  And Mr. Trivedi is a powerful ally on this path.

Trivedi is an Indian holy man who seems to have direct access to the Divine.  He shares his gifts by blessing the earth and blessing people.  His passion over the last few years has been to document scientifically the benefits of his blessings.  You can read more on the website of the 
TrivediFoundation, where you'll find data from research studies in agriculture, microbiology, physics, and genetics, as well as human wellness.  Of particular interest to me is Trivedi's work with viruses:  laboratories tested how he was able to reduce the levels of HIV, Hepatitis B and C, and Cytomegaloviruses in tubes of plasma.  At his introductory lecture, he presented a simple graph that made this research accessible to lay people.

Do you now understand why I felt optimistic?  If viral reactivation is causing my relapses, and if Mr. Trivedi can reduce my viral load, I can move to a state of increased wellness.  Even though I'll always have the virus in my system and therefore always have to be careful, if I get the virus into remission, I can rebuild my strength.  I can get stem cells to speed the rebuilding of damaged heart and brain cells.  And if I have a big stress and feel any cardiac symptoms, I can flood my bloodstream with herbal and pharmaceutical antivirals.  What a wonderful plan!

I didn't have long to wait to get started on the first step.  I signed up online for an individual remote blessing with Trivedi, and for a series of  two group blessings.  I also signed up to attend the retreat in Chicago because he was urging people with serious illnesses like MS and Parkinson's to attend.  I knew it would be a stretch for me to travel that far (7+ hours), stay in a hotel, and be present during the retreat, but I felt compelled to do it by a great inner force.  Fortunately, I had fantastic results, which is why I'm writing this evening after a full day of travel.  But, as it is now 10:30, I am going to retire for the night, and tell you all about my fantastic results in a few days.  I can barely wait to see how great I feel tomorrow!!

PS Sorry for the changing typefaces.  I can't seem to sort them out now.  :)

Tuesday, June 1, 2010

A revolving door - part 2 - and more blessings

It’s getting a bit old, this current relapse.  I documented its start with a fear/stress trigger on March 26, its development through April with cardiac symptoms like chest pain and palpitations, and some of the ins and outs I experienced in the month of May.

I hoped neural therapy would prevent it from getting really bad, from sending me down another notch or two on the energy/fatigue scale as every previous relapse had done.  And I believe it did help.  But neural therapy didn’t prevent me from relapsing, and was only able to control my symptoms for a few hours after each treatment.  I suffered during the intervening days with the unpredictability of old symptoms emerging at the slightest stress – standing for a few minutes too long, sitting at the computer when I was tired, getting up from my seat at intermission during a concert.

At the end of March, I heard Mr. Trivedi speak in Columbus, and received a blessing from him.  Whether it was placebo or a holy miracle, I had a few days of detox and a long spate free of cardiac symptoms.  Then, I went in for another neural therapy appointment.  As soon as the needle pierced my skin, I knew I’d made the wrong decision.  I knew I should have cancelled and continued to let the Trivedi blessing work its magic.  But there I was, lying on the examination table, Doc’s syringe filled with German homeopathics called pleos.  I winced at one injection after another, cursing and complaining loudly about the pain, pleading with him to do the absolute minimum.  When he finished, I felt wound up like a spring.  The effervescence joy I had when I’d entered the office was gone, gone, gone.  “I feel much worse,” I said, and he put his hands on me again, feeling my pulses and the flow of energy.  He got out his lights (infrared, laser) and his pulsation device and began ‘unwinding’ me until I felt almost as good as I had when I first arrived. 

While NT had seemed to help in the past, now it brought me back to my pre-Trivedi blessing state.  I had episode of palpitations two hours later.  Using EFT (emotional freedom technique), I tapped on acupressure points silently mouthing affirmations, and kept myself from going into a full blown stress reaction.  

With Folirinse/B12 as a tool to lower norepinephrine, and EFT to reduce the mental fear response of relapsing, I hoped I’d quickly return to the calm of my post-blessing state.  But I didn’t leave well enough alone.  I went to the acupuncturist who had helped me two weeks earlier, and got so terribly unbalanced again that I suffered for over a week with a new symptom:  waking in the middle of the night feeling exceedingly hot, with chest pain, and palpitations.

I signed up for a remote group blessing with Trivedi – a two hour conference call on May 11 with Trivedi and other blessees – with the hope of getting from it the same benefits I’d gotten the first time.  Surprise!  I had the same reaction I’d had from the acupuncture but worse: gastric burning and a huge swollen gland added some new flavors to the CFS stew.  I was keyed up all morning.  The Folirinse B12 combination didn’t help.  I finally got some pot from a friend, took two drags and got rid of my chest pain. 

This middle of the night waking with palpitations and burning went on and on and on.   I did the normal juggling of supplements, stopping this, starting that, without seeming to have much impact.  Other nights, my stress arousal started early, and I wouldn’t fall asleep until 5 am.  By the end of the week, I was an emotional wreck and extremely wired.  Still I didn’t lose faith in the benevolence of the Trivedi blessings.  The holy man Trivedi has prayed for my happiness and my well-being.  I had been blessed, and I felt blessed.

I reminded myself of a few things he’d said during one of his discourses:  his intention is transformation.   When he prays for happiness for everyone in the group on the call, he doesn’t know if one person’s happiness depends upon beginning a romantic relationship while another person’s happiness depends upon ending a stressful relationship, but God knows.  We don’t take the audacious stance of telling God what we think we need, for we could be wrong; we let God direct our transformation.  I had asked for vibrant health, to be able to serve others, to be active in the world and share my gifts.  I had to accept that a worsening of symptoms was a possible reaction – a step in the healing process.  It helped that, despite my physical misery, I maintained a great state of mind.  I kept thought of my body trying to find its way back to its original blueprint for vibrant health.  And I considered the possibility that the core issue of my illness was getting more and more focused.

Fast forward a few days.  Brian, the Most Fantastic Acupuncturist Ever, was coming into town for a week.  I was looking forward to getting his input on my condition; I knew he would not keep the needles in for too long.  I knew he would monitor my pulses and my energy flow as he worked.  Each time he moved the needles, I felt the blockages release and the energy begin to flow.  I left his office mellow and relaxed.  But when I got in bed at night, I was too wired to sleep.  I had a headache the next day and felt terrible unbalanced all over again.  I put all my hopes in another Trivedi blessing, which I had scheduled two nights ahead.

This time I had an individual remote blessing.  I got ready early and sat quietly in my room in the dark, my spine straight, my eyes closed, envisioning myself in my mind’s eye as active and healthy.  All of a sudden I felt a jolt of energy course through me.  It was a pleasant energy, not quite blissful, but a feeling I could readily enjoy for hours on end – or as a continual state.  I glanced at the clock:  it was exactly 10:03, the time scheduled for my blessing.  I rested for awhile and enjoyed a very pleasant state.

Since the first blessing had once cleared up my sleep problems, I expected the second one to do the same thing.  Instead, I was up half the night, and up half the following night, grateful that I could sleep until 11 am.  After that, I’d have a normal night every few days interspersed with one or more sleepless nights. If the Trivedi blessings were ‘working’, it was not on the physical plane of symptom relief!  

By the end of the week, the benefits of the blessings came clear. Trivedi emphasized that blessings help us to listen to our inner voice. Each time I lay down to do yoga nidra, I would set my intention:  As the blessing unfolds, may I make all the right choices for my healing. Invariably, I’d realize that I didn’t want to go into my next NT appointment, and when I finished relaxing, I’d call the office and cancel.  Soon I was able to accept that I would not be going in for treatment at the end of May, nor in early June right before and right after the Trivedi retreat.  Apparently, I was going to need a long break.  Perhaps, I would never go back.  Perhaps I would recover on my own from the blessings.  Perhaps everything would work out, just as it should. 

And lo and behold it did, but not the way I expected it to work.  Next time I write, I'll tell you more.