March 2010

Sorry we haven’t been giving frequent reports on Molly’s condition, but we’ve been vigorously pursuing various avenues, some promising but none magic bullets. In the meantime, her condition on the whole gets worse. She has to stay in a darkened room at our house because of the rawness of her senses (hyperacusis)–she is still very sensitive to light, sound, scent, motion and commotion. She remains weak and subject to physical and mental torment every day, but at least she continues to eat well. Her doctors work hard. Cousin Catherine was a big boost for everyone while she was in Santa Fe, staying at Molly’s house. Thank you, Catherine!

Molly sends vast love and hugs to everyone. She asked me to convey that one of the most challenging aspects of her illness at the moment is her inability to be in more direct and individual contact with her loved ones she misses terribly. She is unable to write or converse or even dictate except for small amounts, which even then are very taxing. If you can believe it, even the presence of others in her room triggers a great many symptoms. She felt enormously supported by Catherine’s coming out, but heart-broken not to be able to enjoy her beloved cousin’s delightful company more often.

It’s especially difficult not to be able to express in a way she would like her gratitude for the e-mails, art work, inspiring messages and book excerpts, photographs, gifts, voice mail messages, prayers, Reiki, blog entries, letters, cards and loving thoughts, and those who sit with her in meditation or prayer. It is also hard not to be able to express support during loved ones’ own difficult times and to share in celebrations of joyful times. She says, Please know that even though I am silent at the moment, I am sending love and best wishes through the ether.

As you can see, Molly’s symptoms have made her very very isolated, and I know your contact and supportive thoughts are very meaningful to her. Blog comments are fun for her too. I know she is grateful for your concern, as are Frank and I.

Love,
Marilyn, Molly and Frank

P.S. Molly asks me to add our gratitude for research, expertise, practical support and other contributions she can't even begin to list!

Molly, Frank and I cherish your support for Molly. We’re sorry we haven’t been better at giving updates on her situation. As you know, she isn’t able to write or talk without exhausting herself and bringing on more symptoms. We haven’t had clear news to convey because her body has had such intolerance for many medications, antibiotics and supplements. That has also kept us hopping, looking for solutions.

Here is a piece of news, however, that we hope will turn out to be significant. It could make sense of the variety of frustrations we’ve met with. A Lyme doctor who has noted Molly’s low tolerance and sensitization to antibiotics and other medications, and her history of toxin exposures, points out that she may have a genetic predisposition against recovering from such exposures (especially to Lyme toxins and molds). She may be lacking an enzyme necessary to break down the toxins. She should receive the HLA test (Human Leukocyte Antigen test) to determine which pathway for detox is blocked, and also a test for methylation defect. Then measures could be taken to counteract any such problem. (The doctor has 5 patients who had the same trouble, were tested and are improving.) This sounds promising! Fingers crossed!

Note: Molly has been suffering with increasing neurological symptoms. Everything seems to move at a stately pace in the medical world, but on Monday, Dec. 14th, we are expecting to get the tests--10 of them!--done for missing enzymes etc. . Then we wait for the results, and see what to do about them...

A new adventure, from Molly

I have received some comments that have spurred me to indulge in what is perhaps the most dangerous use of a blog: the sharing of dubious artistic efforts. I will share some of the poems I’ve written recently. I have chosen haiku as a form, because it’s a length I can deal with, with my enfeebled mind and weak arms.

First, disclaimers. I’m no poet, and I’ve had no chance to study haiku form. Mom googled some of the barest guidelines for me–English haiku can be one to three lines totaling 17 syllables or less, with direct observation of nature, often two images with a meaningful implied contrast.

Maybe others will be inspired to add their own poems!

my cottonwood struck by lightning
no “why this?” or
“oh shit, what now?”

unable to go there myself
the mountains came to me
on the evening wind

glee at saving a spider from drowning
moments later, crushed to have rolled over a lace-winged insect.

pinons against moon-lit clouds
longing for the nights of
outdoor adventures

(From Marilyn on those trees:
stars peer through pinons
christmas in September.)

awakened by mouse on my bed
mournful hope for the springing
of Pop’s traps

four fresh
roadside crosses
wash of Milky Way shimmering

two tiny vases
of fresh cut wildflowers
mama loves me

This next and last pertains to Nature magazine’s cover story about a marmoset monkey that had successfully received a foreign gene. It was my first haiku effort and Pop sent it in for publication as a “letter to the editor”–but no luck!

biomedical supermodel
“hisui”
sad lost eyes

Papa, please post the ballad you have started for me upon my request at a particularly sad moment. Maybe others will be inspired to add verses.

September 20, 2009 from Molly

Apologies. We have received a lot of email from loved ones saying they were unable to post their comments to the blog. We too had trouble (i.e. Mom!). We had to give precedence to numerous doctor consults, etc., but we've solved the blog problem now, and have posted some comments we have in hand. (They aren't in the order they were received.)

Please do try new posts with some confidence!

August update

Dear friends and family,

We've been so busy we haven't posted updates for quite a while. Plus, I was shy about figuring out how to do posts! Now there are three new ones all at once that we’d started over a period of time.

Much of what was in the last posting, for July, is still valid, sorry to say. But we were very fortunate to arrange an early August face-to-face meeting between Molly a  Lyme expert and consultant from out of state.

Consequently he and our local doctor who we have consulted in the past, have put together a new plan for treatment, which we are beginning to carry out in an orderly manner as befits Molly’s sensitive state--frustrating though it is, not to implement everything at once!

Love to all, and thank you so much for your support,
Marilyn

P.S. from Molly: As I say below, I haven’t been able to retrieve e-mails sent to my address since mid-June, and I miss those communications. Please do send future e-mails to the address you find on the e-mail notification about the new entries. I look forward to hearing from you, and to your comments on the blog (just say if you would like us to post your e-mails on the blog for you).

Update on Molly, July

Dear family and friends,

I wish I had better news to report. Molly is having a very difficult time, because of deterioration in her physical vigor and increase in her neurological symptoms, especially sensitivities of all kinds. It is very tricky treating Lyme disease, although she is able to take many supplements meant to counteract various aspects of her troubles, as well as attacking the spirochetes themselves.

A principal obstacle to improvement is her sensory sensitivities not only to sound, but to light and motion. Most recently she is suffering from vertigo. Sound sensitivity (hyperacusis) is said to be suffered by almost half of Lyme victims to greater or lesser degree, but information about treatment is very difficult to find. It makes the herxes (symptoms resulting from the toxins released by the dying spirochetes) terrible to deal with, even though they are “only” intensifications of her usual symptoms. A related symptom is panic attacks that awaken her out of the blue and make rest difficult. What an awful disease Lyme is– you have to decide how much torment you can stand at a given time in order to treat it.

The delightful early summer evening drives we were having near Santa Fe, as described in Molly’s and my entries above, have been curtailed because of a mistake one day in going out while the sun, though low, was still bright as only sun in New Mexico can be :-). This set Molly back in her tolerance for not only light but sound and motion as well. Now she is confined to a darkened room, except for evening sits on our portal watching the sky. We fantasize that we are the deck of an ocean liner.

We hope to report on new developments in her treatments before long.

One result of Molly’s being at our house is that she doesn’t have access to a computer, since ours are on the second floor. She is also having more trouble writing--even for me to transcribe into e-mails--so she asks me to give her regrets for not being able to communicate with family and friends as much as she would like to. But please keep the blog comments and e-mails coming! You can post comments to the blog following the instructions in the right column. Or just use my e-mail address (on my e-mail notification about the new posts) since Molly isn’t able to pick up her own e-mail, and say whether or not you want your message posted.

Love from Marilyn and Frank


Molly says:
I do wish to add that I have not been receiving e-mail since mid-June. So, I’m not ignoring you, if you wrote! I was in the middle of so many delicious email conversations that I miss terribly–some loving, supportive, disclosing and honest, some deep and existential, others deliciously newsy and light, some hilariously offbeat, some more intermittent but heartful and connected. Facebook was a wonderful discovery as a way to connect with people as well. I miss you all!

Written in June, posted in August (sorry!)

Dear Molly,

I really like the name of your blog, Maple Tree Warrior. It’s fierce and peaceful at the same time. How sad that the tree you loved is physically gone. But you are carrying it forward in your heart!

Your Lyme disease has subtle ties to nature. A bad part is that it’s a symptom of changes in our world caused by global warming. As you know, with warmer winters bacteria are surviving in greater numbers than ever. Lyme disease has existed for a long time, but now it is causing real havoc to lives like never before.

Another negative tie to nature is that Lyme often causes extreme environmental sensitivities, as you know only too well. Some of your indications of trouble were, early on, severe reactions to paint, outgassing from gym mats, and more recently everything from pesticide and skin products to purportedly harmless building materials... An ongoing saga.

Some of that has brought you temporarily from your cozy house that you put so much thought, work and love into, to our house. We love having you here, but we know that it’s more difficult for you to negotiate with the tough Saltillo tile floors and highway noise in the distance. And it’s hard for you not being in close email contact with your friends and family. A good thing, though, is the hilarity we share at mealtimes on your good days, and the monk-like silent communion on your not-so-good days. Also, as I write this on the 4th of July, we seldom hear fireworks here, in contrast to your own kid-friendly neighborhood.

Another good thing about your being at our house is that it has started the three of us driving New Mexico backroads and helping you to reconnect with the countryside, using your camera as well as (as much as possible) your senses. Sadly, with the sound and light sensitivities you’ve developed, you need your ear plugs, noise-cancelling headphones and two pairs of reflective sunglasses. It’s hard to see you have to buffer yourself from the outdoors you have so long loved–bird songs, the sound of wind and rain, much less thunderstorms. And for you not to be able to enter the wilderness in the same way, except by digging your feet into the earth when we drive up the hill to watch the sunset.

But driving we’ve enjoyed geological formations and striations; the spectacular and unlikely flourishing of cactus flowers thanks to this unusually moist season; the farmer whose wife’s family has lived in the town of Stanley for 100 years showing us the mysterious old farm tools they lovingly preserved by arranging on weathered boards, and describing the lost sense of community since the old Stanley store closed. Then there is the little church whose touching cemetery holds timeless stone crosses, each a distinctive and compelling shape; the achingly fresh and lovingly tended descanso (roadside memorial) near our house for four teenagers killed by a drunk driver; and the hidden pond with the majestic, venerable oaks and cottonwoods drinking from it.

Trees-- I loved Deborah Post’s comment posted on your blog, with the Tagore poem about trees’ relationship to the earth and sky; and the “rowandell” email address your imaginative cousin Pym used to have, referring to those lacy trees and the Elves’ home in Tolkien’s Middle Earth. We had a rowan tree at our place in upstate New York, too, although we called it by its other name, mountain ash. The Ents from Tolkien have worked their way into our drawings and vocabulary as allies as well.

I’ve told you about the mimosa tree in my grandmother’s yard in Oklahoma City when I was growing up. It was my magical playhouse, shelter and throne, graced with delicate pink blossoms–my “powder puff” tree. {drawing?}

Pop and I want to wish you strength from all such trees,

Worlds of love, Mom


Thank you, Mom, for this lovely entry.

It has been a great comfort to be at your house, though hard to have my own sanctuary toxic. But we have had some fun and a lot of laughs! (Not that there haven’t been tense moments too, of course. How could there not? We have grown from those too.) I have enjoyed our evening sits outside, including my first sighting of the Milky Way in longer than I care to contemplate, complete with shooting star. There have also been some family firsts, for instance the breakdown of the decades-long taboo against the use of foul language in front of one another. My father was the last to fall. My first instinct was to immediately call my sister, “Can you believe it? Papa said, ‘#*!&xs!!’”??

Another new activity has arisen from my taking to the writing of haikus (brevity having a sudden new allure, since writing is more difficult). Sometimes we compose haikus together, one person thinking up the first phrase, and all of us coming up with the second and comparing our creations.

And then there’s sitting together in meditation. Who would have thunk. All in all, we have gotten to know each other a lot more.

Thank you for writing about trees, Mom. It’s so soothing just to talk about them. They have also been a major subject of my picture taking, thanks to you and Pop driving me around. Since I can’t leave the passenger seat, we call Pop the “dolly driver,” as I issue commands to go forward or back a few feet, and Mom the technical adviser, since she is a photographer in her own right and can read the camera manual, which I cannot.

I thought of a couple of things to add about trees. I thought of a healer who once advised me during a time of stress to go into nature, commenting, “I’ve never met a tree that agreed with my neurosis.” How true!

I also thought of how many “pests” are the result of ecosystems out of balance. They have their place in a functioning ecosystem but something tips the balance and they take over. Another example of this, and devastating to all of us here in Northern New Mexico, is the decimation of the pinon trees a few years ago. Our dear tree man, Rich (who was heart-breakingly downcast during that period, despite all the business it gave him cutting down dead trees), was at my house a few weeks ago looking at my own struggling pinons, and discussing how to rid them of needle scale. He commented that he made peace with all his “pest”-killing by thinking of it as helping them end their bad karma, so they might come back as higher life forms, or, in his words, as “progressives.”

I have thought of that often with regard to all the spirocide I have been doing. That is perhaps a good segue to a little medical update, which I will mostly let you (Mom) take over. I will say this though: The cure is worse than the disease! Those spiros release nasty neurotoxins during their death throes–whoa! It has been nothing short of hellish. Maybe one day I’ll get really honest about the experience. So far I’m sorry to say the results have been subtle if any.

Since Mom and I started this entry, a lot of uncertain things have happened medically. My neurological symptoms have worsened considerably, and my treatment team is in disagreement about what to do. It’s scary to have one practitioner tell you you’re in danger if you don’t take a particular substance today and another tell you you’re endangering yourself if you do, and to really feel like you don’t have the where-with-all to decide.

Now I am truly thankful to be at Mom and Pop’s house, as I really require a monopoly of their time and attention and support right now. I struggle a lot with guilt about this, as they will testify.

I’ll let Mom take over from here and say more, but first I want to express my regret at not being able to go on and on with tributes to those who have devoted enormous heart and effort to helping me in extraordinary ways. I hope to get to this as soon as possible. I’ll just say for now it’s a wondrous display to watch the various ways that creation (human beings) express(es) love, each a different flavor of gift. I am grateful for it all, and look forward to observing that beautiful display from another standpoint and even more so as a fuller participant.

Love to you all,
Molly

i am wildly grateful 4 e/o's support. contributions here & on email have created powerful mosaic & web, working a kind of alchemy on me. look fwd 2 saying more when i can!  also so grateful 4 sittings & chantings, prayers, well-wishes & practical support!

having extra tough patch. hope there will be report soon.

please help me hold the vision of health. here are some photos: http://www.facebook.com/album.php?aid=2011888&id=1116224617&l=d15052daf6

Hi All,

I've had lots of ideas for my first post to this blog, and have consequently written nothing! I will be starting my first quasi-Rife treatment tomorrow (hopefully) and will probably be out of commission for awhile, so I figured I better get something started.

I'll start with something simple; an explanation of the title of the blog. Both a Maple tree and the image of a warrior have become strong healing images for me of late.

When I was a child we had a house in the foothills of the Catskills with a beautiful Maple tree in front. I loved it, and I felt it loved me--unconditionally! I also remember a feeling associated with it of strength through the trunk reaching into the earth and upward to the sky. While this tree is no longer physically in my life, I feel it still, its strength now something inside my body, rather than beside it.

The second image, that of a warrior, depicted here by my mother, is a startling one to me. I confess that almost without knowing it I had infused the challenge of dealing with my health issues with New Age notions such as "make love not war" with the microbial intruders. They must have a lesson for me, for my benefit. Or perhaps God does. Or, if only I could dwell in divine love more perfectly, I would be healed without even the need for medical treatment. I imagine I'm doing some misrepresenting, but these kinds of ideas are common here in Santa Fe, where beliefs about illness and healing crowd every street corner. (And this is only a tiny sampling.) But as something in me has grown stronger, for reasons I may grope at describing in another entry, an energy has grown in my solar plexus that can only be described as that of a warrior. I am "battle-ready".

I have felt conflicted about this! And yet it is so undeniable as to defy argument.

Here's what my dear friend Kathleen, who typed this out for me, had to say re my dilemma: "I think warrior mode is great and we should be out to absolutely get every damn little spirochete we can get our hands on. This is a very spiritual stance."

Here's what Jeannie, another friend and a spiritual teacher said: Warrior is great. Warrior FOR life, for living, for yes!!! Yay! Fierceness of warrior for life is great. If someone was in my house to harm S, it would be love with teeth not love with tea and cookies. It would be, f**k no, a firm, clear refusal to allow harm, but it would not be hey, you're a f***ker. It would be, very clear, there's the door, get out, and bless you on your way. So how does fierceness enter without making anything wrong or bad? Can you say to the spirochetes, thank God for me, and I'm saying, enough, I want to live, I fiercely show you the door.

Roarrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!

Some of you know mountain lions have a special significance for me, since I encountered one and had a ferocious face-off in the wilderness. That’s a story for another day, but it’s a happy coincidence that Jeannie sent me this image.

So perhaps it’s not such a rigid dichotomy as “make love or make war,” but “make love via war,” or “make war with love,” or something more subtle.

Finally, my father has copiously and charmingly indulged another related image, that of a dragon. Here is an example; this one he drew while I was on my first harrowing trial of antibiotics a couple of weeks ago:












It’s been rare and outrageous -- though head-splitting -- fun doing this small creative project of getting this blog going. Perhaps the big new monitor Pop is getting me will help in the future! Please see Mom's post below for more up-to-date medical info. Much love, Molly

From Marilyn--



Dear family and friends,



Molly has been gaining strength physically, thanks to extensive supplements, in part making up the deficits in vitamins, minerals, etc. caused by the Lyme disease itself. She has been greatly helped in this by applied kinesiologist Dr. Tom Rogowskey, who pays weekly housecalls. His muscle-tests with her help determine the correct supplementation.



At the same time, neurological aspects of the disease have worsened: stinging of the skin all over, some dysregulation of thinking and mood, but most especially extreme hyperacusis (severe sensitivity to stimulation, especially sound). Dr. Susser, our Lyme expert with 40 years experience, located in Scottsdale, says that Molly's is is the worst case of hyperacusis he and his expert colleagues who specialize in hyperacusis have ever heard of. It has increased her isolation from friends; now even a few minutes of interaction can cause severe head pain for hours or even days. This (not to mention limitations on occupying herself) has affected her morale. Dr. Susser believes that the neurological symptoms now constitute an organic brain syndrome, probably the result of demylinization–-the loss of nerve insulation. He firmly believes the symptoms can be reversed, however, with the help of new, experimental, unconventional treatments.


Addressing the disease itself–destroying the dastardly and wily spirochetes (bacteria) in all their four guises/disguises–has become a pressing need and is a key part of addressing the neurological problems. Now that she is somewhat physically prepared, we have begun to try a variety of approaches in order to keep the bacteria off-balance, including antibiotics, herbs and a current version of the Rife machine.

 Besides herbs, she just recently she undertook her first antibiotics, two in tandem, to address all 4 forms of spiros at once. As expected, it was something of a drama, as the expiring spiros released new toxins causing a worsening of her usual symptoms and significant emotional upheaval. The body had to bind and get rid of the new toxins. There’s no way around this die-off reaction–called the Jarisch-Herxheimer reaction or herx for short--though it can be softened with certain supplements.

Another part of the treatment equation involves breaking down the "biofilm," which is a kind of plaque-like material in which the spirochetes shield themselves and attack the nervous system. At the same time the nerve sheaths need help to reconstitute (re-myelinize) themselves. This is all new research territory.

At this crucial stage on the long road of healing–when Molly has now been house-bound for a whole year!-- I know she would be deeply appreciative of your renewed prayers, chanting, meditation or "sits" with her, as well as e-mails and photos. 



Marilyn

From Molly (from initial newsletter)--

I am enormously grateful for all the love and support I have received in a great variety of forms. I have neighbors who have organized themselves on several occasions to do my yard work, a contractor friend who has devoted himself to solving issues in my home and even convincing friends to donate labor! Another friend organizes my meditation schedule. One friend has come from a great distance on two occasions to do all kinds of work on my house. Laura has devoted herself to researching my illness and keeping up a stream of compassion, and my nieces have kept up a flow of songs, anecdotes and artistic creations. I'm blessed in that my visiting nurse is a dear friend, as is my formal helper. My cook puts enormous love into her job, and all bring beautiful energy into my home! One friend made herself available by phone at night when monsoon thunderstorms were unraveling me.

Many others help in practical ways, perform research, or sometimes come over at a moment's notice for a needed hug. And I cherish all the messages of love and support I receive and am thankful to all those who meditate with me. I want also to say that Mom and Pop have been heroically devoted to looking after my complicated and substantial needs. They also provide amazing compassion and wisdom at just the right moments.

It's a strange life I have fallen into, so unexpectedly. Its challenges have certainly pushed me to grow in various ways. Often I am calm and peaceful, other times scared, sad, tired of it all and shamelessly sorry for myself!

My present life is not without its pleasures. Presently those include sitting on my deck and watching the fall insects, including a three-legged grasshopper with whom I feel a great affinity! Lying in the sun during my morning meditations, gazing out the window as night falls, reviewing wonderful memories, and looking at photos of loved ones. Thank you all again so much for your love and concern.

You can be in touch with me directly via large-print faxes, notes or email. My ability to respond is variable.

Please note that I love to receive photos!

I have a list of people who sit/meditate with me at times of their choosing wherever they are. This is profoundly helpful, both in terms of reducing the feelings of isolation and in terms of soothing body and mind. If you would like to join in, I'd be grateful! You can leave me an email about what time works for you.

Molly

From Marilyn (from initial newsletter)--

Dear friends and family,

It's been difficult to respond properly to all the lovely expressions of concern for Molly. Here at least is an e-mail newsletter that I hope will help.

As most of you know, Molly began 4 years ago having increasingly debilitating symptoms. She particularly began worsening in February. It was only in September that the tests definitely confirmed Lyme disease. (It's very tricky that way.) She had probably contracted it 20 or more years ago living in the northeast, and it had gone underground for a long time. Lyme is especially difficult to treat in chronic cases like this.

We are fortunate to have excellent doctors on board, Dr. Russ Canfield here in Santa Fe, and Dr. Murray Susser in Scottsdale (succeeding Dr. Dan Kinderlehrer, who has moved away from this area and is curtailing his practice because of his own continuing Lyme symptoms). Dr. Susser has had 40 years (!) experience with Lyme, starting in California well before the disease was named.

Molly's Lyme has recently especially attacked her central nervous system, causing sensitivities to sound and talking (hyperacusis), light and touch, resulting in headaches and stress throughout the body. Additionally, she has developed chemical and environmental sensitivities. She cannot exert herself much, especially to use her arms for more than very light tasks, without triggering weakness and stress response. She doesn't use her computer very often, but she can operate the keyboard--she does a little bit with her feet!!

Other symptoms include pain and swelling in the knees and other joints ("classic" symptoms of Lyme), so she scoots around the house on a wheeled stool. She is quite house-bound, and as a consequence of these symptoms, she has few activities to engage her and little or no means of distraction! Especially because of the sound sensitivity, she needs to minimize her interactions, so she gets to feeling a little isolated, despite all the incredible support she feels and receives from loved ones!

Molly's sister Laura was here with us in September to see Molly, confer and do (ongoing) research with Frank and me. The contact with Dr. Susser came out of this research, and Laura has taken part in our two long phone conferences with him.

Frank and I and friends are helping Molly get ready for winter, since she feels the cold so much these days. She has someone with her for a period everyday. We are very fortunate to have many wonderful friends, neighbors and helpers, some of them contributing from afar.

Molly has ups and downs. Some days she feels pretty bad. She has had setbacks because of her sensitivities. Recently, for instance, we thought the nutritional IVs were working, but then after a few of those, she began having extreme reactions.

Now she is about to start on a different kind of IV, this one for hydrogen peroxide, which Dr. Susser has had a lot of success with. The idea is to start small and increase it, and then add other supplements, in order to work on the sensitivities and gently begin to chip away at the spirochetes (the Lyme bacteria, wily little bastards).

Although Molly has an excellent appetite most of the time, and she is eating a very healthy diet (tending toward alkalinity to combat the acid environment of the Lyme spirochetes), her body weight is low due to malabsorption.

She isn't ready to make the trip to see Dr. Susser in Scottsdale yet, because the trip itself will be very hard for her. But Dr. Susser (as well as Dr. Canfield) recognizes that problem and is being very helpful by phone.

Fondest wishes to you,
Marilyn