EVERYONE TAKING CARE OF EVERYONE

The Invalid, Wolfgang Heimbach

I am  home in DC visiting my parents over Christmas and New Year's, an extended visit of a few weeks. My father's recently had a major operation (the Whipple surgery) because he was high-risk for pancreatic cancer. The recovery is harrowing. He's in pain, it's hard for him to eat, he's lost wait to point of looking like an entirely different person.

Still, it was a good Christmas, with my young nieces and nephew cavorting through the house, and the grown-ups lingering in conversation at the dinner table, and my dad cheering up considerably as the days went by.

Now the rest of the family's departed, leaving me and my parents, and some extra germs. My mom and I have both come down with a nasty bug my niece and sister-in-law were just getting over when they arrived.

Also there are the two dogs: high energy Cleo and aging Kramer, who is quickly coming un-house-broken. Among this group of humans and animals, we all (except for perhaps Cleo) need some kind of special help.

So we're making each other cups of tea, cooking up chicken stock, encouraging each other to take naps, and discussing which nutritional supplements are the most palatable. My father bravely endures an episode of pain while I, still a little flu-ish, load the dogs into the car and take them to the dog park so my mom can get a break from taking Kramer out. None of us wants more pee on the carpet.

When my dad's not in pain, he tidies up the kitchen and takes Kramer on short walks. My mom does the laundry, because my mold allergy is too severe for me to go into the basement laundry room. I do as many dishes as possible, thinking always of the countless dishes my parents did when I lived here, during the endless years (in reality five) I lay in bed with undiagnosed Lyme disease. (I can never do enough dishes to repay them for all they did for me.)

My father seems to almost prefer getting through his periodic bouts of pain on his own, but afterwards he wants to talk about what's happening to him, how he's juggling tiny meals and antibiotics and oxycodone (which he hates taking), not to mention a drainage tube sticking out of his side to help clear a post-surgical infection. So I sit and listen, wishing there were more I could do.

We all help Kramer get up and down the stairs. She wants to go up and down the stairs, far more than we want her to, because she gets confused and stops halfway up or down, unable to take another step and squeaking in senile distress. Someone walking alongside her solves this. We trudge up and down the stairs with her, giving her words of encouragement. And when Kramer has an accident despite all the trips outside, my mom patiently cleans the carpet.

Life is suffering, I can't help thinking. Maybe not all the time, the way Buddha declared, but a large part of it. Samsara slapstick. And when another day of samsara is done we sit down to dinner, transported to another, more glamorous world of suffering, a film noir starring Bogart and Bacall.

WILLY BURGDORFER PASSES AWAY

Before Willy Burgdorfer identified the Lyme bacteria, the cause of the illness was unknown. He was a great scientist, an expert in spirochetes, and made treatment of Lyme disease possible for hundreds of thousands of sufferers. He passed away this week. Read more and see a video interview with him at lymedisease.org:

http://lymedisease.org/news/lyme_disease_views/news-remembering-willy-burgdorfer-1925-2014.html?utm_source=Willy+B+%26+other+news&utm_campaign=willy&utm_medium=email

ANOTHER LYME PATIENT ON THE MEND and MORE TREATMENT OPTIONS

For this post I'd like to share a recent email exchange. Mimi asked for a Lyme doctor referral years ago. I was delighted to get an message from her a few weeks ago, and to read she's now doing very well. She's taken a different route with her treatment than mine, so I thought this would be a good way to share some of her tips--straight from her own keyboard!

Beautiful vegetables! For both me and Mimi, diet has been a big part of our treatment plan.

(Painting: 'Plate of Asparagus with Carnations and Grasshopper' by Giovanna Garzoni, 1600-1670)

Hi Noelle,

Remember me? I feel like I've been meaning to email you for years to thank you and I am dreadfully sorry that it has taken me so long. You helped me so immensely during what was the worst time in my life and I just wanted you to know that I did and still do appreciate your support during my Lyme treatment.

I hope you are doing well and healthy. 

Thank you,

Mimi

***

Hi Mimi! 

Thank you for the thank-you! Yes, I remember you! It sounds from your email like you're doing a lot better. Don't think I deserve too much credit, just referred you to the right people, but I'm sooo happy if it helped.

I am doing much better, too. 

Best,

Noelle

*****

Hi Noelle,

I'm definitely doing better than I was back then. I hope to never feel that terrible again, but I'm glad I went through it now.  I ended up stopping antibiotic treatment at 16 months because, I couldn't digest food or absorb nutrients and I couldn't function in my daily life. The GAPS diet gave me back my life and helped heal my gut significantly. Somatic Experiencing therapy has also greatly decreased the emotional load on my system and improved my resiliency. Years ago, Dr. Nesreen Medina recommended me to an SE therapist who was also on of their Lyme patients and I still see her today.

I have never really stopped treating, I just switched to natural treatments (acupuncture, herbs, plant stem cells, essential oils) and found that I respond better when I'm not at war with my microbes. I was able to get pregnant again and found that I am one of those lucky people whose immune system actually does better while pregnant so I felt better than I had in years. Too bad I can't stay pregnant.

; )

My daughter is 1 1/2 now and healthy as a horse and so far my 6 year old son doesn't show any symptoms either. 

I'm still symptomatic, but certainly functional. A few months ago I added Doterra essential oils into my protocol after watching a cool webinar where a woman healed herself from Lyme using only the antimicrobial oils. Cool stuff!  I'm also working on re-programming myself and telling my 70 trillion cells that we don't have Lyme anymore. So the journey continues, but in the end it is all positive improvements so I keep working on it.  

Thank you again and I wish you good health!!

Mimi

****

Hi Mimi:

This is all wonderful to read! I am wondering you would mind if I put your email on my blog? (It's a blog about recovering from Lyme.)  

Recently I've received requests from Lyme patients for information about my medical plan (i.e. what works) and I have resolved to get more positive and practical info up on my blog. I had been neglecting it because I was feeling better and not thinking about Lyme so much! 

I've ended up doing something similar to you (minus the pregnancy). I stopped antibiotics and switched to herbs and recently the anti-inflammatory diet. My quality of life is much better, I have less brain fog and more stamina on Samento/Banderol/Teasel. But I also think having done a few years of antibiotics helped. I don't think I'd be as strong as I am now if I had done the herbs alone. I'm curious about the GAPS diet and some of the other things you mentioned. I'll look them up! 

Best,

Noelle

*****

Hi Noelle:

Of course you can include anything you would like to.  I love spreading the word about treatment options. You can slice and dice whatever I wrote and in case you want to include some links....

Here is a link to the Woman's webinar who used the Doterra Oils and another link I found just browsing:

http://aishaharley.me/tag/doterra-lyme/

http://www.faithfulwellness.org/lyme/

Here is an overview on the Somatic Experiencing therapy which helped me miles beyond what standard talk therapy was able to achieve. It has shown me that many of my symptoms are actually psychologicial and I have had sessions where I walked in feeling like I needed to crawl back in bed and walked out feeling energized with my symptoms alleviated (nausea, headaches, brain fog, pain  http://www.traumahealing.com/somatic-experiencing/

The Gaps Diet (Gut and Psychology Syndrome) is all about healing and sealing the gut with bone broths and fermented foods and within 6 weeks on the Intro Diet, I gained a much-needed 6 pounds, could digest food again, tolerate dairy, absorb nutrients, my spring allergy headaches were almost nonexistent and I wasn't starving all the time anymore. Plus my anxiety was gone. I felt stronger and was able to get pregnant 3 months later.  Since then I have done the GAPS Intro diet 3 times and my body goes into serious healing mode each time. I usually experience extreme fatigue and some die off in the first week and I sleep my best while on the Intro diet.  It is an amazingly balancing diet. You will either gain or lose weight depending on what your body needs. I have proof of that because I gained when I was gaunt and then I did the Intro again after pregnancy and lost a few extra pounds I didn't need.  I have never been able to stick to the full GAPS diet for the recommended 2 years for someone like me, but I still get great benefits from the Intro and have incorporated parts of it in my ongoing diet. 

Links:

Author's site: http://www.gapsdiet.com/

http://primaldocs.com/opinion/lyme-disease/

http://www.lovingourguts.com/what-is-gaps-2/

Dr. Elizabeth Hesse Sheehan is my primary (currently on maternity leave) and although I have had infrequent visits, she is the one who recommended GAPS, Plant Stem Cells and Doterra Oils. http://www.experiencehealth.info/default.html

Cheers,

Mimi

Another painting by Giovanna Garzoni: Chinese Bowl with Figs, Cherries, and Bird

BE A STATISTIC! IMPORTANT SURVEY FOR LYMIES!

Lymedisease.org has a new survey, pertinent to possible changes in how Lyme testing in regulated. Here's the link:

SURVEY

It only takes ten minutes! Lymies, please take the survey so researchers, doctors, and lawmakers can take our real experiences into account, and we can make progress in diagnosing and treating this disease.

You will feel this good after you take the survey!

Dancers and Demigods

Here's a link to my most recently published story. Many thanks to Phoebe Journal, Alex Henderson, and Ah-reum Han, who did a wonderful job editing!

http://www.phoebejournal.com/the-dancer-and-the-demigods/

Muse of dance and music

UPDATE

It's been six months since my last blog post. A busy, happy six months that might possibly justify my neglect of this blog.

I've struggled so long with ups and downs of Lyme treatment, and it seems natural to keep the blog up when Lyme is more at the forefront of my life. When I'm feeling well I want to push Lyme to a corner of my brain so I can work on my short stories and find an agent for my memoir, not to mention dance, read, run, and bike up to the pool while I yak away with my buddy Emily (then swim for 45 minutes and take the long way home, yakking away again).

Dancing with my friend Estela in the Seattle Solstice Parade this June. (I'm on the right. Yes that is a band-aid on my leg from giving myself a heparin shot right before the parade!)

Then I got a gentle reminder that when I'm feeling strong and the universe is showering me with luck, I should remember my blog.

It came when I put a profile up on OkCupid. Yes it was time to start dating again! I'd been gearing up to date for a while, even taking some selfies when my hair was looking good because I knew I would need photos.... But I was mostly putting off online dating because the thought made me nervous. By early September, though, the time was ripe. I gathered my best photos and typed OkCupid into the search engine.

I've been sick for so long that I've racked up some experience dating while chronically ill. Not that I have any idea what I'm doing, or have a sure-fire strategy for explaining this confusing illness to potential boyfriends. But one thing I do know is to be upfront about it. There are plenty of guys out there who probably don't want to take on this added complication, and I'd rather not waste my time meeting them. So I mentioned Lyme disease once or twice in my online profile.

To my surprise, within 24 hours of putting myself "out there," I was fielding messages about Lyme disease. And I don't mean, "You're so beautiful and intelligent and I don't mind at all that you have an illness." I did in fact I did get that type of message, but these were not what flummoxed me. What threw me were messages asking me who my doctor was, what type of testing I'd had done, and specifically how I was treating Lyme.

Help! The separate worlds were colliding! I was just trying to maybe have coffee with someone single and attractive, and instead I was getting sucked back into the quicksand of the Western Blot and the Burnher Protocol? Would I ever escape Borrelia Burgdorferi, for even just a second?

And then I calmed down. It was only two guys. One was in the process of getting diagnosed and had randomly come across my profile, he said. The other seemed to have done a deliberate search for Lyme on OkCupid because, he figured people on dating websites were clearly doing better than so many people out there with Lyme. Pretty damn smart of bachelor # 2.

And then I remembered how starved people are for information about what works. And how few people who get better take the time to share their success strategies with others.

I remembered that on this blog, my posts on medicine get the most hits (no, the world at large is not so interested in my personal life or my humorous stories about friends, family, and pets). People are looking for information. I know that. I was there myself. Support groups can sometimes be great, and sometimes make you feel like someone just destroyed every map that was ever made. Certainly this is an illness with no good map.

So here's what I can share.

I am no longer trying to beat this illness into complete submission. At this point it doesn't seem realistic. I'm accepting with as much grace as possible that Borrelia Burgdorferi has a partial hold on my existence.

It's not so bad, compared to where I started. For years I spent all day in bed, often crawled on hands a knees to get to the bathroom, or on 'good days' walked one full block for exercise. Yes, my current relationship with Lyme is far better.

Currently, Lyme is still woven throughout my day. Scarcely an hour goes by that I don't think about it in some way or other. I count on dedicating ten hours each night to sleeping--although I'm not asleep the whole time, I need that much time getting ready for bed and in bed in order to sleep the eight or nine hours I need. I also take a couple short naps/meditation sessions during the day.

I have the luxury of pursuing my career from home and my house is a carefully controlled place, with no toxic chemicals, no mold, vacuumed to the hilt. (And somehow there's still dog hair flying around!)

As for Lyme-killing meds. YES. I am currently on a combination of anti-microbial herbs:

Teasel
Pau D'Arco
Samento
Cumanda
Banderol
Neem

My hero of a scientist, Dr. Eva Sapi, has done research on Samento and Banderol in combination and found them to be more effective than certain antibiotics, in certain Lyme scenarios. (I am paraphrasing one of my doctors here. Please don't take this as bona fide medical information--just trying to explain how I got to this combination of medicine.) My naturopath, Nesreen Medina, suggested including the Teasel, which made a huge difference for me in my allergy/congestion symptoms. We added the Pau D'Arco because I have a history of parasites from my time in Mexico. Neem, ditto. Also it seems to help with sleep.

Before I started these herbs, I was on very high doses of antibiotics, for years. I don't think the herbs alone would have been significantly effective to kill off Lyme. Not for me. But they are good at keeping it in check and helping me make slow, noticeable progress. (Less brain fatigue, longer runs and swims, etc.)

At any one time I'm on 5 out of the 6 of the herbs. This allows me to rotate, which is important because we know this bacteria is really good at resisting whatever you throw at it. So the rotation keeps beating it back from different angles.

I take these things before I go to bed. They are liquid drops and I have to count them out, which is annoying at the end of the day, but so be it! When I first switched to herbs, Dr. Marty Ross prescribed them to me twice a day. I tried taking the second dose before getting out of bed in the morning, or at lunch--meaning right before my afternoon nap. Either way, that second dose had me essentially unable to function for a large part of the day. So I cut it down to just one big dose at night. This has me sleeping through the night (mostly) and (mostly) alert during the day.

I also take lots of other pills: vitamins, anti-inflammatories (quercetin and bromelain), and herbs such as burdock to support my liver. I'll explain these in another post. That's it for now. It's time to go running.

Recent photo while organizing my medicine. Yes, it's still complicated! And it's worth it.

FOOD FOR THOUGHT from A FAMOUS PERSON with A CHRONIC ILLNESS

"It was during these years of my lowest vitality that I ceased to be a pessimist. The instinct of self-restoration forbad me a philosophy of poverty and discouragement. This in fact is how the long period of sickness appears to be me now. As it were, I discovered life anew, including myself. I turned my will to health, to life, into a philosophy."  -Friedrich Nietzsche

I have been researching Nietzsche for a character in a short story who is a big reader of the philosopher. Yes, I vaguely knew he went mad at the end of his life from what was supposed to be syphilis (like Lyme a spirochete bacteria), but I didn't realize he lived most of his adult life with chronic illness.

I came across this quote in a BBC documentary. https://www.youtube.com/watch?v=3EGOwduWVKA

Plus there's that crazy moustache.

THE SADDEST NEWS

Ophelia, Odilon Redon

I have been putting off writing this post. I don’t know how to write it. I’m still figuring out how to believe it. Carolyn Humphreys—Dr. Carolyn Humphreys, ND, the best doctor I ever had—passed away in February.

Carolyn was the essence of health and laughter and grace. She was slender with ash-blond hair, bright eyes, a brighter smile. She was my friend as well as my doctor. While she did body work on me, which was always part of my appointments with her, we talked and laughed—oh how we laughed, until we were wiping tears from our eyes. She saw the humor in everything, and she wasn’t afraid to laugh about the stinky supplements, weird pills, and bizarre forms of treatment she sometimes gave me.

I could arrive at Carolyn's office in tears and come out laughing. I could go to Carolyn half out of my mind from insomnia or some other effect of my Lyme treatment and leave feeling calm, knowing I would sleep that night—and I would be right. She always solved my problems.

Carolyn knew me from when I could barely walk. Through naturopathy, homeopathy, cranial sacral therapy, and the blood thinner heparin (this last she managed with more attention to detail and understanding than any other doctor I’ve had), she got me up and able to walk a few blocks again.

And then she said I needed to go further, and she insisted I go to Dr. Martin Ross to be fully tested for Lyme disease. Thus she rescued my life.

When I was well enough to write again, she told me over and over to write and keep writing. She insisted I would help other people with serious illnesses by writing about my own experience. Dr. Carolyn Humphreys is the reason this blog exists.

***

It was through this blog I got the news Carolyn passed away. I hadn’t seen her in five years, since she moved to California. I was afraid when she left. She had been the ground under my feet the first four years I lived in Seattle. I couldn't really imagine I'd be OK without her, but it turned out I was strong enough by then to turn to other doctors to get me through my ongoing treatment.

Still, she was always there for me. From California, she read my blog, and sent me emails of encouragement. One post in particular, she found really funny. Here it is: Taste Buds

But most of all she was always there for me because I was always going to see her again. She was my safety net, only a phone call and a plane ride away. Plane rides are not easy for me, but they are in the realm of the possible. There were many moments when I was frightened by my reaction to antibiotics and other Lyme treatments, and I thought that if all else failed, if no one could help me in Seattle, I could fly to San Diego to see Carolyn.

That is who Carolyn Humphreys was. She was the doctor of when-all-else-fails. She was the person who would set things right.

On March 6th 2014, someone messaged me through facebook about my blog. This happens from time to time. I clicked on the link and read Carolyn had died. I wasn’t able to understand at first. I was not able to understand.

I spent the afternoon in tears, befriending Carolyn’s friends on facebook until I got a forwarded email stream that explained what happened. There were 15 posts her mother had made to a prayer circle. Here is what I understand.

Early February 2014 Carolyn was in pain. She went to the hospital. She had high blood pressure that was impairing her vision. Doctors put her on medication and she improved somewhat. She then needed an operation to remove part of her colon that did not have enough blood flow. She made it through the operation, and the initial stages of recovery. She could sip a little bit of protein powder mixed with organic apple juice through a straw. By then, however, the doctors had diagnosed Carolyn’s illness. In her mother’s words:

“Carolyn had a vasculitis disease called PAN, polyarteritis nodosa.  Poly means many.  Arteritis means arteries.  Nodosa means knots.  It is a very rare autoimmune disease that attacks the artery system causing knots in them all over the body and shutting down the arteries causing dead spots.”

The doctors could do nothing more to help Carolyn. Her family brought her to hospice care, and the next day she passed away. It was February 18^th, a Tuesday.

I cannot remember what I did that Tuesday. I look back at my email inbox to see if there is anything that will jar my memory but it is all routine emails. It was a routine day.

On Thursday March 6^th when I learned Carolyn was gone, I cried and cried. I was staying with my parents’ in DC, and I pieced through the emails and waited for my mother to come home, because I had to tell someone to make it real. Sobs shook my body in waves. My mother arrived and hugged me and that hug seemed so precious and so ephemeral. A daughter hugging her mother, a mother hugging her daughter. A moment that disappears in a blink, a finger snap. I told my mom what I could. I put Cleopatra on her leash, put on my coat and my headphones. I needed to walk and walk through the bitter cold evening to let it all sink in. I’d walk for miles and miles, I’d walk for hours. It was not lost on me that I could this because of Carolyn. I listened to Joni Mitchel, Blue, and her sweet sorrowful voice sang for Carolyn. I walked and I cried.

 

WORTH REPEATING

http://www.newyorker.com/reporting/2013/07/01/130701fa_fact_specter

I just got a comment on an earlier post, about doctors in the UK refusing to believe in Chronic Lyme.

This New Yorker article is an excellent overview of the issue in the US. Many friends forwarded it to me when it first came out, and I think I linked to it here. One of my friends said that after she read it, she understood my situation a way she never had before.

Another friend with a degree in public health has commented that when any new health condition crops up, it is generally met with denial by the medical establishment. Yes, ladies and gentlemen, we are still in that situation with Lyme disease, especially Chronic Lyme.

I DON'T USUALLY DO THIS

Here's a link worth reading, little to do with chronic illness, except that those Jim Dale recordings of the Harry Potter series kept me happy through many years lying in bed. (I don't have to scratch deep to realize I'm cosmic twin of Hermione Granger.) And this post is funny:

http://the-toast.net/2014/01/02/let-the-man-speak/

SEATTLE PRIDE

MEDITATION WORKS

Meditation by Odilon Redon

 

I just went through one of the most physically stressful weeks of my life. I didn’t run a marathon or climb Everest. I flew back to my house in Seattle, which should have been ready for me to live in, but in fact was still full of fumes from my recent renovations.

 On December 21^st I wrapped up my indoor renovations, and made colossal efforts to get a new ventilation system installed before I left for DC. That way, I could leave it running for a month until I returned, making my house healthy for me again. It turned out the ventilation system had not been turned on, although BelRed Heating, who installed it, assured me it was set to be working 24 hours a day. It also turned out BelRed had installed the system incorrectly, so that once I turned it on (on January 21^st instead of December 19^th) the system was ineffective.

So it was that I was exposed to the construction chemicals in my house every day last week. (I slept on my friend Ghusun's couch, but for various reasons needed to back to my house for short intervals during the day. I also kept trying to convince myself the air in the house was better, until I felt sick enough to know it wasn't.) In addition, I spent far too much time driving or simply riding in cars; I spent the day in noisy places desperately trying to find a temporary place to live by typing on the maddening keys of my iPhone; I had a hard time sticking to my diet and taking my round the clock pills on time. Finally desperate to get out of my circumstances in Seattle, I gave up and flew back to my parents’ in DC, thus making two cross-country flights in eight days.

 

During the week in Seattle, all my Lyme symptoms returned—fatigue, insomnia, anxiety, panic attacks (these when I was breathing the air in my house), and lastly a general sense of despair (yes, I chalk this up to a chemcial exposure/Lyme symptom!).

It has been years since I’ve had a regular practice of meditation, but I boarded the plane back to DC so worn out I no longer cared about anything but being able to rest, and do exactly what my body needed every hour of the day. My daily habit is to start writing as soon I can, usually while I'm still eating breakfast. Yesterday morning, I was far too tired to write anything. Instead I sat at the comfortable chair in my sunny room in my parents' house, and I meditated.

During that hour, I felt tension slipping away from my body, again and again, as I let my thoughts go in order to follow my breath. After an hour, time felt entirely different. It was rich and full, no longer hurried or agonizing. My body and brain knew how to rest again. Last night I slept deeply, and woke with a sense of peace.

MYTHICAL FOODS DEPT/ NEW YEAR'S RESOLUTION

After much rumination on how I can improve--gratitude? pulchritude? fortitude?--I've decided my New Year's resolution for 2014 is to eat a pickle and peanut butter sandwich.

2013 was a trying year, but it also brought with it many wonderful things:

A new friend in my neighbor Emily
Much time spent with old friends (thanks Gwynn and Ghida!)
A joyous return to Lindy Hop
A joyous return to Janelle Campoverde's dance class
The Ballard Goodwill
The ever-wonderful support and companionship of my mother
Stalwart Plumbing (If you found this page when you googled "Stalwart Plumbing," don't hesitate. Hire them.)
Figuring out how to bike my spastic dog, Cleo
The Kinsey Millhone murder mysteries of Sue Grafton

I've been going through Sue Grafton's books out of order, when the library audiobook copies are available. I started with D is for Deadbeat in February, and I was hooked. I'm listening to Q right now, and that will leave only on V and W for me to listen to.

These books revel in all kinds of food I could never eat--fresh baked bread, cinnamon rolls, weird Hungarian dishes, fast food hamburgers, cereal for dinner, and all order of junk food. And each book also feature's the detective heroine's favorite dish: peanut butter and pickle sandwiches.

So this is my resolution: try one. It might be difficult since I don't usually eat bread, but I'll figure it out.