tag:blogger.com,1999:blog-52592602341392656012017-10-30T15:57:09.903-04:00Follow my experience as I explore new protocols for recovery from The Worst Illness Ever (also known as CFS, ME, CFIDS) which I contacted in 1987. I've been unable to work since 1994, but I never give up hope. My posts are filled with information (I studied naturopathy in 1999-2003 to heal myself). I hope you, your friends with ME-CFS, and your caretakers will learn something useful from my journey.Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.comBlogger114125tag:blogger.com,1999:blog-5259260234139265601.post-67615645964727082152014-06-22T01:03:00.001-04:002014-06-22T01:42:46.940-04:00

I wrote this a few weeks ago but held it up because I wanted to find pictures.  Well, I finally realized that I'd never get around to finding pictures, so here it is: JUST PLAIN TEXT. The good news is that I'm still sleeping well.  I can count on being able to fall asleep at night, as long as I don't try a new supplement or go into a new building.  And so I wanted to share with  you the second,

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com5tag:blogger.com,1999:blog-5259260234139265601.post-8120097948353986112014-05-21T21:32:00.001-04:002014-05-21T21:32:16.467-04:00

I’ve had sleep problems for a long, long time. They got so bad when I came down with ME-CFS in ‘87 that I thought I’d go crazy. Then I had the ups and downs or many, sleeping better whenever I improved, worse whenever I relapsed, but never getting hours of refreshing sleep where I didn’t wake to every barking dog and rustling leaf.Mold avoidance helped a lot, and my first year was a honeymoon of

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com14tag:blogger.com,1999:blog-5259260234139265601.post-49204636555016313362013-10-23T21:26:00.000-04:002013-10-23T21:26:46.068-04:00

One day I talked to a Facebook friend on the phone, the next day I was replying to an ad on Craigslist, and the day after that, I had signed a lease for a stunning apartment attached to a grandiose house. It sat on the top of a small hill overlooking an infinity pool and the Coachella Valley. It definitely didn’t have mold. It was built three years ago with high quality materials, all floors

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com12tag:blogger.com,1999:blog-5259260234139265601.post-71704334351453112992013-09-17T18:57:00.002-04:002013-09-17T19:00:07.517-04:00

I It pains me to watch “the mold wars” between various factions of the medical community treating mold illness. On one side is the valiant Dr. Ritchie Shoemaker, who wields a scythe to cut through prejudice and ignorance of the mainstream medical community and also holds a sword to defend against the threat of CAM-oriented physicians who have traditionally treated this patient population.

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com11tag:blogger.com,1999:blog-5259260234139265601.post-49596993487536670232013-05-15T00:36:00.000-04:002013-05-15T00:36:30.350-04:00

I started VIP a week ago on the recommendation of a doctor who studied the Shoemaker protocol.  He thought I'd be a good candidate for it as it has helped many with CIRS, including those with CFS, to downregulate their hypersensitivity. In order to start it, you need to be living in a mold-free environment, or one low enough in mold that you're not reacting.  You also have to pass the VCS to show

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com29tag:blogger.com,1999:blog-5259260234139265601.post-83321215243879259762013-03-15T19:08:00.004-04:002013-03-15T19:08:40.588-04:00

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

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com3tag:blogger.com,1999:blog-5259260234139265601.post-46777623697225570062013-03-08T11:38:00.001-05:002013-03-08T11:39:59.028-05:00

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

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com6tag:blogger.com,1999:blog-5259260234139265601.post-20771966384434026892013-03-06T21:49:00.001-05:002013-03-06T21:49:11.519-05:00

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

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com1tag:blogger.com,1999:blog-5259260234139265601.post-54968277726639663412013-03-01T23:40:00.000-05:002013-03-01T23:43:24.045-05:00

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.

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com3tag:blogger.com,1999:blog-5259260234139265601.post-62543998607633148262013-02-17T23:54:00.000-05:002013-02-17T23:54:21.300-05:00

What can you sleep on after you’ve exhausted conventional beds, air mattresses, and self-inflating camping pads?  This is the question I had to answer  after a difficult January plagued by insomnia.and the triggering of symptoms. We moved from the cold house in the Santa Rosa mountains down into the Coachella Valley to live in our newly purchased, used LivinLite VRV toyhauler at the RV park

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com8tag:blogger.com,1999:blog-5259260234139265601.post-24274296052523639562012-11-20T14:28:00.000-05:002012-11-20T15:07:28.425-05:00

One of the most challenging features of an NEID Ineuro endocrine immune disease) is the ups and downs.  The ups excite us:  I'm finally getting results! we think as we explore a new protocol.  We tell all our friends:  You have to try X. It's really helping me but inevitably, a down comes along.  There's a change of weather, an environmental exposure, a used up supplement, an emotional stress and

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com6tag:blogger.com,1999:blog-5259260234139265601.post-73046348481421758702012-10-04T01:39:00.004-04:002012-10-04T01:39:40.973-04:00

   I haven’t been motivated to write. Part of the reason is because I committed to doing a paper (that 's academic jargon for an essay) for an anthology of essays from a conference that I was invited to attend last year, but  had to decline because the mold illness made travel overseas impossible. I sketched out my ideas before I admitted to myself that I wouldn’t be able to take advantage

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com6tag:blogger.com,1999:blog-5259260234139265601.post-37837374581427000002012-07-30T01:16:00.000-04:002012-07-30T01:16:18.995-04:00

It's been a long time since I've posted, and since several people have written to me asking where I am and how I am doing, I decided it was time for a post. In many ways, the past two months have been most difficult.  I headed from Desert Hot Springs to Santa Fe, where I stayed in the yard of another woman with similar sensitivity to mold and CFS-like symptoms from exposure.  I enjoyed using

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com3tag:blogger.com,1999:blog-5259260234139265601.post-32583127447060091282012-06-05T14:00:00.000-04:002012-07-29T23:50:53.396-04:00

Background: Unable to live in my beautiful house in Ohio after getting clear (of mold and other toxins) camping for 2 weeks out West, I piled my Avalon full of camping equipment and left to find a new home in a dry climate.  The cold and the wind sent me south and west until I found Desert Hot Springs, CA, where I felt good enough to stay around for several months.  I searched for housing, but

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com18tag:blogger.com,1999:blog-5259260234139265601.post-82603385179760737812012-04-11T17:01:00.001-04:002012-04-11T17:38:33.915-04:00

Are you wondering whether you should try methylation support, and if so, whose protocol to follow?  If so, this blog might help you get a handle on what to avoid and how to go about it systematically. My historyI started this blog when I decided to try the simplified methylation program designed by Rich Van Konynenberg for people with CFS to let others know if this program ‘worked’.  Before that

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com12tag:blogger.com,1999:blog-5259260234139265601.post-52315052997361081152012-04-01T21:13:00.000-04:002012-04-01T21:13:04.313-04:00

What could be better than a view of the ocean? I love views.  Ocean views, mountain views, panoramic views over hillsides and farms.  I grew up with a mother who willingly paid more for a room with a great view, and who got my father to buy property in West Virginia because it had an amazing 360 degree view of mountains and valleys. So when I found a rental on VRBO with an ocean view from the

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com9tag:blogger.com,1999:blog-5259260234139265601.post-41161471271186355672012-03-21T12:18:00.000-04:002012-03-21T12:18:51.884-04:00

I should have trusted my first response.  Go to Hawaii?  I’d reply incredulously. There’s so much mold there! There are dry areas.  They even have cactus growing, I’d hear in reply.  When the winds hit 30 mph and the temperature plummeted to 40, I was willing to put up with anyplace warm.  So off I went. My first challenge, storing my car and gear, was easily solved by using the RV storage

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com18tag:blogger.com,1999:blog-5259260234139265601.post-92075969589890786702012-03-09T21:40:00.000-05:002012-03-09T21:40:43.770-05:00

A couple of French researchers discovered exactly what I’ve been thinking about viruses and CFS.  When I clicked on the link http://www.intechopen.com/books/an-international-perspective-on-the-future-of-research-in-chronic-fatigue-syndrome/chronic-fatigue-syndrome-and-viral-infections and read the masthead, my heart sank.  The researchers were in the Psychiatry Department at a French University.

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com7tag:blogger.com,1999:blog-5259260234139265601.post-28489483969319555942012-03-04T12:57:00.001-05:002012-03-04T13:06:00.343-05:00

I think I could live in this Cahuilla Indian house made of palm fronds, set alongside the shore of a clear stream of water bubbling up from the San Andreas fault where the water comes up from deep in the earth for a few hundred yards, and then goes underground again.  I am in Palm Canyon, on Indian land about 10 minutes from downtown Palm Springs.  The place is not much of an improvement on my

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com8tag:blogger.com,1999:blog-5259260234139265601.post-56064156532775082992012-01-17T22:52:00.000-05:002012-01-17T22:52:30.668-05:00

A friend loaned me Rea and Patel’s Reversibility of Chronic Degenerative Disease and Hypersensitivity, a thick, technical, soporific medical book which, when all the technical language is peeled away, has an interesting core of great personal relevance to me. Over the past two weeks, since January 2, I have experienced a dramatic and traumatic transformation.  I started waking around 4 in the

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com5tag:blogger.com,1999:blog-5259260234139265601.post-68626430841624200892011-12-18T23:01:00.000-05:002011-12-18T23:01:30.602-05:00

I’m writing live from the new Trivedi center in Scottsdale Arizona.  The energy here is tremendous, infused with joy and truth.  It’s an amazing experience to feel so good and so consistently over the course of the day.  I hope someday to feel this way 24/7 without Mr. Trivedi’s assistance, for the energy he transmits from the Divine is present for all of us all of the time. I found a beautiful

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com3tag:blogger.com,1999:blog-5259260234139265601.post-63365602683589179312011-12-08T00:59:00.002-05:002011-12-08T01:03:24.209-05:00

It took about two weeks to recover from the debacle with the house I tried to rent in Tucson.  In retrospect, I should not have stayed and slept on the porch.  I should have picked myself up and left the next morning.  If I had, I would have recovered in a day or two. The first few days back in Desert Hot Springs were difficult.  We arrived on Thanksgiving Day, noted the cool and brisk wind as we

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com0tag:blogger.com,1999:blog-5259260234139265601.post-14492589101065265772011-11-25T01:38:00.000-05:002011-11-25T01:38:09.420-05:00

40 days and 40 nights in the deserts of New Mexico, Arizona, and California.   But take off the zeros and you have the number of nights I suffered in Kristi’s house in the country SW of Tucson before I wised up and got myself to a safe place.  That place was the beautiful Gilbert Ray campground in Tucson Mountain Park, populated by tall saguaro cacti, squat barrel cacti, teddy bear cacti (not

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com5tag:blogger.com,1999:blog-5259260234139265601.post-57847381178222188892011-11-15T21:40:00.000-05:002011-11-15T21:40:01.373-05:00

Imagine feeling great when it’s cold outside.  To warm up you get in the baths or the sauna.  You sweat, you drink lots of water, you detox.  You come out feeling warm and less toxic, and the effect lasts for several hours.  If you’re lucky, the desert sun warms the chaise lounges by pool enough to lie outside in your bathing suit until 3 or 4 pm.  You make dinner with a floodlight if the weather

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com3tag:blogger.com,1999:blog-5259260234139265601.post-11110452997831278482011-11-10T11:10:00.000-05:002011-11-10T11:10:55.387-05:00

I thought I’d take up the challenge of answering Karen J.  She wrote, in comments to my most recent blog, You "felt the lethargy and fatigue of" your "WORST CFS", so you took a swim, did some yoga, and were still tired?  Can you see what's wrong with the picture Janis? Seriously. Talk about stressing or overstressing your overstressed, overtaxed adrenals. I still don't know what you're running

Janishttp://www.blogger.com/profile/16006277875518001830noreply@blogger.com3