Friday, March 15, 2013

And the winner of the debate is....

Last week I started the Altwaters Technology drops with a mixture of doubt, skepticism, and optimism.  Doubt arose from my long journey with three relapses and many products and therapies, skepticism from my inability to comprehend structured water, and optimism from my phone conversation with Carol Keppler, the founder of Altwaters Technologies.

Now I’m a believer, but it took overdosing on the drops and feeling really crappy to believe that anything was happening from them.

Carol suggested I start slowly because I am sensitive to energies. I took one drop twice a day and felt better than usual upon waking. I was hungrier than usual during the day and more tired than usual after taking a hike. In fact, I felt like I had PEM all over again and got a little worried.  I took it easy the next two days as I was still pretty tired, and find myself feeling colder than usual. I figured this was either due to the drops, or to the normal, unpredictable ups and downs of living with ME-CFS.

By the fourth day, I was aching everywhere, which was an old, very familiar feeling. To my great pleasure, it reminded me of how far I’ve come over the years. I called the Lymie who recommended this stuff.  “What specific benefits did you get?” I asked.

She went on at length, with great enthusiasm, about how she had overcome her resistance towards exercise and how she was now standing up for herself and living her life the way she wanted to. She told me it was okay to stay on my supplements and decrease when I felt I no longer wanted them. 

I resumed everything the next day. Since I felt better, I increased to 3 drops with the intention of doing them twice a day, but the weather turned hot, and when I was thirsty, I drank the second bottle. Feeling nothing by evening from this increase, I took another 3 drops at night. 

Tuesday I felt terrific. I put 15 drops in my bottle, intending to divide it over the course of the day (having gone from 4 to 9 with no problem, it seemed safe enough. In fact, I really wasn’t worried about being safe, as by now I was convinced that the drops weren’t doing anything anyway. I was stronger than ever at my yoga Pilates course and my mood was wonderful. And so I took another 15 drops in the evening. That began my downfall.

 I barely slept but I thought it was due to one of the questionable supplements, Olenoate.  I took another 15 drops in the morning, and then BAM!  I was too exhausted to move.  I could barely sit up at a film.  I lay around all day, unable to sleep or deeply relax.  When I walked, my legs felt like lead. When I closed my eyes, a trillion electric sparks seemed to whirl inside me. It was like full blown ME-CFS, but something was different.

My Lymie friend said I’d probably overdosed and should take a 1-2 day break. I took her advice, slept better and felt terrific the next day – strong, alert, and happy.

This was the end of the first week, and I can now see the pattern.  When I detox electrical overload with the drops, I get a worsening of symptoms and a return of old symptoms.  My body feels strong for a day, and then starts to detox again.

This is the pattern of self-healing I learned about from Dr.Larry Wilson, consultant to ARL Labs, a company specializing in hair mineral analysis and mineral supplements.  Their founder, Paul Eck, discovered that supporting the adrenals and raising deficient minerals helps the body to heal itself. There is a rhythm to this process that can be visualized as a brick wall with a few bad bricks (let’s imagine lead bricks where there should be calcium.) Unless those bad bricks are on the top of the wall –eg. a very recent symptom – one has to disassemble the bricks above to replace the lead bricks with calcium, and then rebuild. During the demolition, a person feels as if they’ve reverted to the past. During the rebuilding, they start to feel better. Once the wall has been rebuilt, there’s a really good day until the inner construction Hair_Mineral_testing_graphicproject manager finds another place to demolish and repair.  This diagram was developed to indicate the relationships between essential and toxic minerals that Eck discovered over the course of his career through testing and supplementation.  It's a fascinating system.  Following ARL's guidelines, I brought my hair minerals into balance over a period of 7 years. You can read more about their approach at the two links above.

 Now I’m readying myself for the second week of drops and for new surprises.

Friday, March 8, 2013

Skeptic debates Believer

Believer:  I got benefits from frequency things in the past.  I tried Bach Flower Essences and other remedies but never felt a shift, yet when I studied color healing with Jacob Lieberman, I was able to sense changes in response to different colors. My roommate at that training told me about an Australian company that made color essences, which I ordered and used with success.  I even gave some to a Veterinarian, who reported that she had wonderful results with horses. 

Skeptic: I was getting better anyway.  Before I saw Lieberman I was able to take hour walks and sprint 5x across a soccer field.  Working with the Sota Instruments electromedicine pulser seemed to make a difference by forcing nutrients into the cells.  These subtle potions did nothing after I crashed from the fast, which proves they were useless.

Believer: I went to Sound Healing in Albany, OH where they tested my voice and gave me tones to listen to.  These definitely made a difference—and they picked up  my known cortisol and B12 issues.  I got such great results that I wrote a testimonial for them.

Skeptic: Don’t we usually get results when we want something to work?  I read on ProHealth and Phoenix Rising about all kinds of fabulous progress from people, and three months later they were back online looking for something else.  The tones didn’t bring me to wellness and I relapsed again.  After the relapse, I tried to use them but the technology was challenging. This CFS-ME is a relapsing illness.  You probably could’ve improved by eating potato chips!

Believer:  Well even if I don’t completely recover this time—but I might, because in the past I was trying things while living in a moldy house—I’ll welcome anything that improves my quality of life.

Skeptic: I never got anywhere with Willard’s Water, nor with the water imbedded with personalized frequencies from any of those Biotron and QXCI machines, nor the stuff from the Psychotronics Conference, nor any other drops added to water to make it alkaline, absorbent, structured, vibrating, happy….

Believer: Cut it out! I did get amazing results from Yuri Kronn’s Quantum waters, even before I knew anything about them. There was one that made me relax better than any pill; another that worked like magic against constipation.  I wish he’d stayed in business.   

Skeptic:  I opened my first bottle of drops from Altwater Technologies, and made myself a half quart of structured water designed to clear electrical energy.  I don’t expect anything much to happen right away.  Carol told me to dissolve one drop in a quart or more of water—the normal dose is to start with a half dropperful, e.g. 10 drops, but she said I’m too sensitive for that dose. Then I found the packet of salt I was supposed to mix up in the water, so I mixed up another half-quart.
Meanwhile, I’m grumping because she wants me to eat a vegetarian diet, forgo coffee, tea and alcohol, and I’m just not going to do it!  I went without caffeine and alcohol for 15 years and now I can tolerate them and …. What’s the point of getting well if you can’t enjoy these things?

5 pm
Believer:  Is there a connection between the water and this weird feeling in my body?  I lie on my yoga mat waiting for a Pilates fusion class and every cell in my body feels like it’s vibrating…Okay, the teacher’s a hunk, but too young.
  And then there’s this tightness in my neck and shoulders, like I used to feel from sitting at the computer for hours on end.  I’ll work it out in class.
  After class, the tightness is still here.  Ugh! All the lymph spots on my clavicles are tender.  So are the spots on the mastoid and the temples and the knees.

7 pm
   Soaking in the hot mineral pools isn’t enough to relieve my discomfort.  This feels like congested lymph.  Is the water causing this? It could be mobilizing toxins faster than my body can eliminate them?  
Skeptic: Maybe I'm just stiff because I did two backbends Tuesday and took a hike Wednesday and I'm not taking all my supplements.

Wednesday, March 6, 2013

Hope v OMG did I get swindled?

Most of you know what it’s like when a friend has great results with something and insists you try it. I usually balk. I’ve tried a gazillion supplements and herbs and therapies. I try to be open-minded, because I know that when one door closes another opens. But I’m too jaded after 25 years to run through every open door.  I look through it, to extend the metaphor, and if what I see looks inviting one day after another, I walk through.

Done with metaphors. A friend who has chronic Lyme but not CFS tells me she’s getting fantastic results with this water that’s impeded with frequencies.

“Uh huh,” I say, trying to be polite.

“You have to try it.” 

Come on, I think. “I’ll take a look at it,” I say. “What’s the website?”

The next day she calls, and e-mails that she let them know I was going to call and that they’d be able to do a scan for me on Monday.  I don’t listen to the voicemail and don’t call back. But I do decide to look at the website.

I read what I can, click on one of the interviews, turn it off after a few minutes. I am full of skepticism, but my friend is pretty damned insistent.  She’s so excited about this technology that she wants to study it and master it and use it in her healing practice.  I won’t agree to a scan but I do agree to a free 15 minute consultation.  It’s the least I can do, right? 

Before the interview with Carol, I ask her assistant to send me a sample scan so I can see what I (might) be getting into. My suspicions are confirmed.  I look at the numbers in every category and then at the scale on the bottom. I’m probably a -90 in every category.  Maybe just a -30 (=disease) in inflammation now that I’ve improved over the past year. I tell myself I’ll try one bottle of whatever Carol recommends for me and see how I do. If there’s a possibility it could make me less sensitive to things that make a bed soft, I’ll go for it. Sleeping on a hard aluminum surface is getting old.  The organic futons and the chem.-free 100% cotton blankets, even after washing, are going back. Carol is a medical intuitive. I’m mentally ready to hear something about my throat chakra –which I already know is giving me challenges and seems to be the current locale for holding stress.

I’m browsing the product list when Carol calls.  Her voice is nice. She starts relating information about herself which I’ve already read on the website.  I interrupt.  “I’m wondering which product would be best for me to start,” I say.

“Stress reduction,” she says right away, and my heart sinks.  I know I’ve been stressed out.  Isn’t everyone with this illness, especially when I get a reaction to something or other. The night before last was particularly bad because I tried the blankets again. It’s the same old thing.

But Carol goes on, and on, and before I know it, I’m interested in what she has to say.  She’s picking up that I’m extremely sensitive, and that I must have grown up with mold and either financial or emotional stresses (both), and she’s explaining how this affects the energy and electrical systems in the body.  It’s not hard science, but it’s making sense.  Before long, I’m ready to start the entire program of four products that get dropped into water, one each week.  She isn’t persuasive at all, which makes it all the more odd that I’ve had this 180 degree shift.

I ask for clarification about the stress reduction product.

“I don’t think you need that,” she says, now that I’m picking up more about you.  “You’re very intuitive,” she tells me, “currently at 90%. When you finish our program, you have the capacity to be up to 100%.”

How wonderful!  The main benefit I’ve experienced from the energy transmissions of Dahryn and Mahendra Trivedi is a huge shift in my intuition, in being able to listen, and in having the courage to follow through with what I need to do.  I need that extra 10% so I won’t order something else to sleep on that isn’t going to work out, I think.  I tell Carol I’ll go ahead with the full program, but I don’t think I need a scan. 

“You don’t,” she says.  “I’ve already picked up that your ability to repair is at minus 90.”

OMG, I think, that’s exactly what I guessed. I’ve been feeling her words penetrate into my heart chakra.  I’m feeling full of love, a wonderful amazing feeling, reluctant to get off the phone.  If I could feel this way all the time. “I don’t know why I feel compelled to say this, but ‘I love you’,” I say.

When we hang, I’m smiling from ear to ear, my love and joy are so great I want to hug the world. The sky looks bluer, the mountains more majestic. Airborn like a helium balloon, I put on my swimsuit and skip off to the pools thinking, finally,I’m going to recover with this product.

It only takes a split second for that feeling to shift from a dark thought.  I can’t believe I just spent all that money on frequencies when I’ve done that stuff before.  I must be crazy.

And so it is, that sadness overwhelms me.  Even though I lie out in the sun in air close to 80 degrees. Even though the young woman next to me tells me she thought I was a teenage when I was lying next to her with my face and gray hair covered. Even though I still have the memory of feeling overcome by love. Even though I’ve told myself to think positively….

I’m deeply aware that my belief system keeps me from healing.  I am doing better, but after 25 years, my identity has shifted to that of PWC with neurocognitive issues at constant risk of relapse, now turned mold survivor.  I wasn’t to think differently, but I don’t know how. 

Maybe one of the products can help with that.  Didn’t she say there was one to clear emotional memories and beliefs?

(PS, the products arrived today and I’ll start them tomorrow and write updates.)

Friday, March 1, 2013

Dan Neuffer's CFS Unravelled

I highly recommend Dan Neuffer’s CFS Unravelled for anyone with ME-CFS, FMS, Gulf War Syndrome, Lyme, CIRS, and other NEIDs (neuro-endocrine-immune diseases). I also think it will help family members to understand more about the variable symptoms we have and to support us in our efforts to heal.

Dan has a knack for simplifying complex science and presenting it quite clearly to a lay person. He wrote the book after healing himself from CFS, which disabled him for 5-6 years. After recovering sufficiently to exercise and return to a full life, he began meeting other people with ME-CFS, some of whom had recovered and some who just wanted to know what he had done. Dan’s generosity and desire to help others was made further evident in offering his book FREE as a Kindle book through Amazon. If he hadn’t done this, I never would have found the book due to the fact that I’ve stopped reading books, blogs, and forums on ME-CFS unless I’m searching for information on a specific issue.

Dan reminded me of the strategies I used to recover from CFS three times! (Okay, so maybe that's not a TRUE recovery, but each time I recovered to 90% and was able to live a productive, joyful life.) I did these things partly intuitively, and partly because I had no idea what was really making me sick and figured the best I could do was heal the things I knew were wrong, such as my gut, my endocrine system, my emotions, and my chattering mind. Each time I (almost) recovered, as I thought about getting back to work and even took some steps in that direction, some very stressful thing happened in my life, and this stress plunged me back into ME-CFS even though, when I first came down with it, I was having a much less stressful year than my normal life as a college professor.

The first time I relapsed I was still working hard. It had been six years since I had come down with a virus that affected my brain, but I thought I was cured and just having a few problems of aging or stress.  However, the man I fell in love with during a year in Florence on a research grant, and stupidly married, turned out to be extremely abusive. When I escaped from him, in abject terror, my adrenals were in overdrive, my body was depleted of nutrients, my cell membranes were damaged from oxidative stress—all things that Neuffer points out contribute to the pathophysiology and chronicity of ME-CFS.  Worse, I had PTSD and could neither sleep nor relas. I found yoga, meditation (using the Centerpointe technology) and energy work to bring calm into my life. I also made an effort to improve my diet thanks to the advice of a local, holistic doc. In sum, I followed Dan’s recommendations because they came to me as the right thing to do.

The second time I relapsed was six years later. When a former renter set fire to the rental house I owned I went into shock. Arson had been attempted the week before and I’d called out the arson squad to investigate. I felt vulnerable, considering that the fire was started shortly after I finished cleaning the house and drove home. My adrenaline rush was a normal response, but I couldn’t shut it off.  For weeks I was so charged up that I had to go out running every morning to burn off energy (and I’m definitely not a runner) but this gave me a great sense of pleasure after many years of being unable to walk around the block or around a supermarket.  However, because I could only sleep every other night, I surely was burning out all the reserves I’d accumulated over the past few years of careful rest.  

I went to the Tree of Life Rejuvenation center in Patagonia for a vacation, decided to see Dr. Cousens, and followed his recommendation to stay an extra week to do on an (un)supervised raw juice fast. While the fast calmed down my system, it did so by depleting amino acids needed for detox, burning up muscle as well as fat, and within two days of returning home, I developed severe orthostatic intolerance.  Within six weeks, my peace of mind was gone, my blood sugar regulation shot, my sleep disturbed, and my brain unable to concentrate. The work and diet that had helped me heal no longer seemed to make any difference.  And so I started taking classes in natural healing.  I soon became a certified naturopathic endocrinologist and built myself up by supporting my adrenals and other endocrine glands. I healed my gut by going gluten and dairy free (not cheating was really important here) and, with the help of a pharmaceutical drug, rid myself of an intestinal parasite that had weakened me since 1974.  I studied hair mineral analysis and balanced my body’s minerals while doing gentle metal chelation with OTC supplements.  All this greatly improved my functionality and had me teaching yoga daily, writing my memoirs, and starting to take care of things I’d let slide for the past four years. When I got to the point where I could hike for an hour and ride my bike at a decent pace, I thought I’d never crash again.

Yet I did. This time it was the stress of ending a long term relationship in 2007. I crashed, worse again this time than ever before, with a new set of debilitating symptoms that didn’t respond to any of the previous supplements, meditation, exercise, and non-toxic lifestyle regimes I’d explored.  I’m still building myself back up after five and a half years.

The one thing that has helped me the most this time was understanding the role of environmental toxins, such as indoor mold, in creating physiological stress.

What do I mean by physiological stress?  I mean the kind of stress happening in the body as it attempts to eliminate and contain toxins and pathogens, or as it attempts to adjust body temperature, blood sugar, and electrolytes to cope with changing conditions. This stress is a challenge to the body, just like strong emotions, over-exercising, or having too much to do and not enough energy to do it. A healthy body deals with it easily. A body living with a chronic NEID does not.

Dr. Alan Vinitsky worked with me to get to the bottom of my failure to recover, by doing tests that no doctor had ever done before. He’s a brilliant physician, and because he studied with Bill Rea and Ritchie Shoemaker, among others, he has a very broad knowledge base.  He found that, in addition to Lyme which had never been diagnosed before (he used Neuroscience’s new test, My Lyme I.D.), that I was a classic mold illness patient.  Just before I got the test results back, I read Shoemaker’s Surviving Mold, in a moldy hotel resort where I experienced an exacerbation of all my symptoms.

When I got home, I did what nearly everyone does: I got a remediator to clean up my house and tried to save everything I could. Within a few months, I had to leave the house and the town where  I lived for most of my adult life. Because of the dampness in that area, I was inhaling mold spores and mycotoxins daily.  Shoemaker has shown that people who don’t detoxify mycotoxins on their own develop a chronic inflammatory condition in which the immune system is always activated and damages cell membranes until vision, brain hormones, and other functions cease to work effectively. Thus, the body’s own response to toxins and pathogens creates a continuing physiological stress which leaves us vulnerable to any major increase in stress.

Amazingly when, thanks to Lisa Petrison and Erik Johson sharing their recovery stories, I left my house and belongings and moved into a tent in the desert (which was actually quite stressful on a physical level), about 18 of my 25 ME-CFS symptoms disappeared. It still amazes me that oftentimes I find myself standing at the table reading my e-mail when there are empty chairs nearby.  I never did this in the past, not since before the onset of ME-CFS in 1987.  Orthostatic intolerance was the one symptom I could never get rid of until I took this radical journey. 

Things aren't perfect, however.  I still have pretty severe cognitive deficits, a rigid ANS, a poorly regulating hypothalamus, and now a new, amazing sensitivity to infinitesimally small amounts of mold which keeps me from going into many buildings, sleeping on a real bed, and living in a normal house.

Many well educated professionals consider CFS to be an illness of toxicity. Because of this theory, people with CFS explore various detox protocols. But they rarely work! In reality, most everything that pushes detox makes us worse. Dan Neuffer understand this and doesn’t recommend detox, since he doesn’t give much credence to the toxicity theory. But just because detox rarely works does not mean the toxicity theory is wrong.

Cellular toxicity CAN and does cause all the symptoms of ME/CFS.  Dr. Bill Rea of the Environmental Health Center has documented this in great detail in his books. For many of us, it is the missing link, as it was for Lisa Nagy, MD, who is now recovered sufficiently to travel the US lobbying and teaching about environmental illness. Her recent lecture at the University of Pennsylvania Medical school is worth the hour spent listening here:

Toxins damage the ANS, CNS, and ENS (e.g the nervous system), affect all cellular processes and the functionality of the extracellular matrix. One class of toxins made by mold (the mycotoxin tricothecenes) was found to create adrenal failure in a research study Nagy discusses. Those same tricothecenes were used by the Soviets in biological warfare, as explained by Dr. Dennis at

One of the things I learned in my naturopathic study is that the body won’t be able to detox when it has weak adrenals.  Nor can it put the energy into eliminating toxins when it is caught in the stress of surviving.  Neuffer makes this point and therefore recommends that CFS patients work to heal gut and adrenal issues first.  I would add that, even before addressing these areas, a patient has to find out whether mold, pesticides, or other environmental toxins are triggering their system from outside or inside.  There are tests of body fluids from Genova/Metametrix and Real Time Laboratory as well as ERMI and HERTSMI-2 tests of home or workplace interiors, The Shoemaker panel of tests can also help your  physician determine whether you have CIRS, chronic inflammatory response syndrome.

Neuffer’s recommendations can make a huge difference for individuals who are not extremely toxic, or for those whose detox pathways have not been badly damaged by toxins. Shifting to an organic, non-toxic lifestyle, reducing stress, and cultivating hope and positive mental states aids recovery from every illness. However, those with damaged detox pathways, genetic SNP’s that slow their detox, and who live in the presence of environmental toxins may not make significant progress with such changes – not because they fail to follow one of the steps, but because their bodies cannot eliminate stored toxins as fast as they take them in.

Until one eliminates the provoking agents, the immune system, the endocrine system, the nervous system, and every connected organ in the body will continue to act and react in the natural effort to bring homeostasis.

Thanks for your work Dan.  May your book and website help many people recover their health and their lives. You are doing a great service to the ME-CFS community.  I hope you reach out to the greater community of NEID (neuro-endocrine-immune disease), which includes GWS, Lyme, PTSD, and EI.  What you have to say will make a big difference in the lives of all these individuals.