Cookies

Hi All ~

Just a quick note today to say hi. Feeling mostly great, still on the protocol and healing right along. A little achey and painey sometimes, and really painful once in awhile. And life goes on.....

I made some awesome cookies today that are gluten-free, dairy-free, and refined-sugar-free, by adapting a recipe on a box of Quinoa flakes. I shared the cookies with a couple of adults as well as a handful of kids who all thought they were delicious. So decided you might like to try them as well. IMPORTANT: Once you take them out of the oven, let them cool completely before eating, as otherwise they tend to fall apart.

CRISPY QUINOA COOKIES

3/4 cup agave syrup
1 dropper of stevia
1/2 cup softened coconut oil
1/2 cup organic peanut butter
1/2 tsp vanilla
1 cup rice flour
3/4 cup quinoa flakes
1 tsp baking soda
1/4 tsp salt
walnuts (optional)

Bake in 350 degree oven for about 12 minutes, on an ungreased cookie sheet. Drop by spoonfuls about 2 inches apart. Enjoy!!!

Little of this & that....

Good morning....it's 7 am and the birds are singing on this beautiful Sunday. It's truly going to be a day of rest - and laundry. Still playing catch-up from the trip.

I'm sore and a little herxy, I think. Knees and hips are not so happy at the moment from 10 minutes yesterday on a recumbent bike. I need to learn to start smaller and work my way up, and also not to exercise on days I'm already sore....

But there's a great story about this bike - a wonderful tale of synchronicity that I want to share. Besides me having knees that nearly always hurt, my mom just had a knee replacement two months ago and her knees need to keep exercizing now that her physical therapy has ended. A few times I've gone to the gym and used the recumbent bike and it's made my knees feel better, so I've had in the back of my mind to think about getting one that mom and I could both use. In fact, she and I discussed this in some detail on Thursday.

Friday, I was driving home from Coupeville (about 25 miles from our house), when I noticed a recumbent bike sitting at the edge of the highway with a sign on it that said "FREE". At first I kept going with the thought, "It's probably falling apart; a fixer-upper if it even works at all." Then I immediately had the thought that "HEY - I'm looking for a recumbent bike, I should turn around and take a look...!"

U-turn! The bike appeared to be in good shape so I got on it and pedaled, and it worked just fine. How exciting!! However, when I attempted to load it into my car, it quickly became apparent that there was no way I was going to get that thing into the car by myself.

There was a long driveway leading down to a house so I trudged down there, and was told that the bike belonged to the people in the back house. So I continued down the hill to the next cottage, envisioning that the bike would still be on the highway when I got back. As I walked up a couple were getting into their car. They affirmed that it was their bike and they'd be happy to help load it into the car. So they met me at the top of the hill on the highway, and this nice man put it into the car for me. They refused to take any donation for the bike.

Really, you gotta love the power of manifestation.... thanks, Universe, for the cool gift!

Another thing I want to share with you is the Isabella Catalog. There are very few catalogues in this world that I actually WANT to receive.... Isabella is one of them. They carry a lot of interesting and useful things, as well as fun gift items. The writing is clever, the design is lovely. Anyway, I noticed yesterday for the first time that they offer a line of safe, natural insect repellants. Now I rarely use these, but would have really appreciated this stuff a couple of years ago on our trip to Roatan! There is one in particular called BioUD formulated especially to repel ticks. This caught my interest of course, being that ticks are on my "don't invite to the party" list right now. Fortunately, we don't have many ticks here on Whidbey Island, but I'm glad to know about this product in case I plan to be out in the woods hiking around in other forests. The Isabella website is www.isabellacatalog.com.

Speaking of useful products, this leads me to talking about tooth care. One of the natural products I've used for awhile is a toothpaste that is all natural, as well as fluoride-free (I shared with you awhile back the insidious health challenges related to fluoride). However, I noticed that I was having a problem with food sticking to my teeth while using the natural toothpaste. Enter Karen, my wise herbalist neighbor who formulates an entire line of bodycare and homecare products in her kitchen.... She always seems to have a solution for everything, and she told me about her Tooth Soap. I had never heard of soap for teeth, but this stuff is AWESOME. She explained that most natural toothpastes use glycerine, which not only can cause food to stick to teeth, but it coats the teeth and prevents mineral absorption. Turns out, our teeth need to be able to absorb minerals - who knew?? The tooth soap cleans the teeth and encourages mineral absorption. I don't think I've been as excited about a personal care product in a long time, but I am really tickled with the tooth soap!! It doesn't whiten, but Karen says using baking soda once or twice a week will whiten the teeth, so I'm going to experiment with that.

I realize this has nothing whatsoever to do with lyme disease, but thought I'd share since it's in keeping with my personal goal of living as cleanly and lightly as possible upon the planet. If you'd like to check out Karen's amazing bodycare and homecare products, go to her website: www.sweetsistersbodycare.com. We use quite a few of Karen's products at home (great hand soaps, laundry soap, etc.), and I use her grapefruit shampoo and conditioner, AND the best-moisturizer-ever, scented with rose and jojoba essential oils. Karen uses only pure, organic essential oils and other ingredients, some of which are grown herself. Her number one goal is to honor and protect the environment, so you can feel good about using her stuff. Her daughters, Rohanna and Terra also help with the business, hence the name: Sweet Sisters. Enjoy!!

I hope to get out a canvas and do some painting today... we'll see if that really happens. Have a peaceful Sunday!

Sukie

Back on track

Greetings ~

After lazily re-integrating into everyday life the past couple of days, I'm finally back on the ol' blog. Erick and I spent an amazing week in Arizona. Highlights were Sedona (of course!)and the Grand Canyon (both of which Erick had never seen before). I also visited my old childhood digs and the town where I grew up - wow, so much has changed. I guess that's the story for anyone going back in time...

I managed to feel pretty well most of the time on our travels, even though I wasn't fully on my best eating plan, nor was I taking all of my supplements. I did find the most incredible restaurant in Sedona called the Chocolate Tree, which served ONLY things that are gluten-free, dairy-free and processed sugar-free. It was so very COOL to be able to order anything I wanted off the menu and not have to think about whether I could eat it! I had a killer veggie sandwich, an awesome chocolate smoothie, a piece of pumpkin cream pie, and a few chocolates (to go...). And they were all delicious! I would be forever indebted to anyone who would open a restaurant like this on Whidbey Island!!! I wish I had the willpower to do it, but restauranteering is not my calling in life. But I'm extremely good at restaurant-visiting!

I must admit we also had Mexican food three times - so yummy! Of course for me that is something with vegetarian beans and corn tortillas, guacamole and some salsa. I even had a glass of sangria one night - woo hoo! Little of what I ate was organic; I was so happy to pick up our bag of groceries when we returned home from the Raven and Spade!

While in AZ we hiked, swam in the river, and logged quite a few miles. My favorite playing and healing spots are all still there, still heart-opening, still awesome. Favorite spot hands-down: Red Rock Crossing in Sedona, where one can swim and frolic in the river underneath the Cathedral Rock formation. Having grown up in the AZ sun I rather enjoyed the heat for a few days, but honestly, I was also supremely happy to return home to our sweet island life. Vacations are always so uplifting, and yet it is always good to return come back home. It was also so sweet to spend time with daughter Ari, who house-sat for us. She is the sweet, precious peach of my life.

So after some transition, I'm back on track with my clean/organic eating plan, and taking all my supplements. My blood pressure has gone up and down a bit between 114/70 to 138/84, and everything in between. Lately it's been pretty stable. While I was going absolute full-throttle on the Salt/C protocol there for a few weeks, I had to lighten up just a bit and drop from 12 doses of Salt and C each day, to 8 each day. My body is happier that way, and we seem to be settling back into a good equilibrium. I haven't had a severe herx in a few weeks now. I'm enjoying that while it lasts! Although it may be because I lowered my dose and am just not hitting the bacteria hard enough..... time will tell.

I recently started reading an excellent book called Cure Unknown: Inside the Lyme Epidemic, by Pamela Weintraub. Ms. Weintraub is an investigative scientific journalist, currently senior editor at Discover magazine, who has covered science and biomedicine for national media for more than 25 years in New York. She also has lyme disease, as does her husband and their two sons. She is uniquely qualified to investigate and report-out on all the controversy surrounding Lyme, and she does so professionally, and with remarkable determination. I'll share more about it as I go, and I also suggest that for anyone remotely interested in Lyme and what it's all about... please check it out of the library and read it yourself. She is able to make some sense of the controversy that is Lyme disease, including the power struggles that exist within mainstream medicine to "control" who has the final say regarding what lyme is and how to treat it (many leading scientists and physicians have ties to for-profit interests, such as potential lyme vaccines).

One thing's for sure, there is never a dull moment when Lyme disease is the topic! I feel very, very blessed to be having a healing response through my use of the Salt/C protocol. I feel like one of the "lucky ones" who received a diagnosis fairly early in the game (even though I'd had increasingly present lyme symptoms for several years already, but hadn't begun seeking medical attention until just over a year ago), who has been fortunate to find a fairly inexpensive protocol (after $10K in medical fees) that seems to be working. Color me GRATEFUL! I don't take my recovery for granted, and I know I am still far from the finish line (if there even is such a thing). Whether or not I achieve a full remission of my symptoms (and for how long) still remains to be seen, although I fully envision myself in vibrant energy and health. Stay tuned folks....

Sukie

blood pressurized.....

Hi Everyone....

I'm literally on my way out the door to AZ, but wanted to touch bases first. I am feeling great, even though my BP has been up and down a bit. I bought a blood pressure cuff. My normal BP is about 114/74, but it's gone as high as 144/80 lately, and I can feel it when it's like that. I've had to change the way I am dosing my salt and Vitamin C, and lower the amount a bit. But that's okay; I'm willing to work with it. I feel SOOOOO good lately. I walked down the hill and back up quite easily the other day - first time in over a year that I could do that!

I wish you all a fantastic week and will be back in touch soon. I am also pasting-in an article below that was on the internet this morning that I found interesting. It's pretty long, but worth the read, I think. It's about the levels of radiation that people are exposed to through excess medical testing.

As one of my T-shirts sez: Peace, Love & Whidbey Island!

Sue

Americans get most radiation from medical scans


We fret about airport scanners, power lines, cell phones and even microwaves. It's true that we get too much radiation. But it's not from those sources — it's from too many medical tests.

Americans get the most medical radiation in the world, even more than folks in other rich countries. The U.S. accounts for half of the most advanced procedures that use radiation, and the average American's dose has grown sixfold over the last couple of decades.

Too much radiation raises the risk of cancer. That risk is growing because people in everyday situations are getting imaging tests far too often. Like the New Hampshire teen who was about to get a CT scan to check for kidney stones until a radiologist, Dr. Steven Birnbaum, discovered he'd already had 14 of these powerful X-rays for previous episodes. Adding up the total dose, "I was horrified" at the cancer risk it posed, Birnbaum said.

After his own daughter, Molly, was given too many scans following a car accident, Birnbaum took action: He asked the two hospitals where he works to watch for any patients who had had 10 or more CT scans, or patients under 40 who had had five — clearly dangerous amounts. They found 50 people over a three-year period, including a young woman with 31 abdominal scans.

When other radiologists tell him they've never found such a case, Birnbaum replies: "That tells me you haven't looked."

Of the many ways Americans are overtested and overtreated, imaging is one of the most common and insidious. CT scans — "super X-rays" that give fast, extremely detailed images — have soared in use over the last decade, often replacing tests that don't require radiation, such as ultrasound and MRI, or magnetic resonance imaging.

Radiation is a hidden danger — you don't feel it when you get it, and any damage usually doesn't show up for years. Taken individually, tests that use radiation pose little risk. Over time, though, the dose accumulates.

Doctors don't keep track of radiation given their patients — they order a test, not a dose. Except for mammograms, there are no federal rules on radiation dose. Children and young women, who are most vulnerable to radiation harm, sometimes get too much at busy imaging centers that don't adjust doses for each patient's size.

That may soon change. In interviews with The Associated Press, U.S. Food and Drug Administration officials described steps in the works, including possibly requiring device makers to print the radiation dose on each X-ray or other image so patients and doctors can see how much was given.

The FDA also is pushing industry and doctors to set standard doses for common tests such as CT scans.

"We are considering requirements and guidelines for record-keeping of dose and other technical parameters of the imaging exam," said Sean Boyd, chief of the FDA's diagnostic devices branch.

A near-term goal: developing a "radiation medical record" to track dose from cradle to grave.

"One of the ways we could improve care is if we had a running sort of Geiger counter" that a doctor checked before ordering a test, said Dr. Prashant Kaul of Duke University.

He led an eye-opening study that found that U.S. heart attack patients get the radiation equivalent of 850 chest X-rays over the first few days they are in the hospital — much of it for repeat tests that may not have been needed.

How much radiation is risky?

It's hard to say. The best guess is based on the 1986 Chernobyl nuclear power plant accident and studies of Japanese atomic bomb survivors who had excess cancer risk after exposures of 50 to 150 millisieverts (a measure of dose) of radiation.

A chest or abdominal CT scan involves 10 to 20 millisieverts, versus 0.01 to 0.1 for an ordinary chest X-ray, less than 1 for a mammogram, and as little as 0.005 for a dental X-ray. Natural radiation from the sun and soil accounts for about 2 millisieverts a year.

A big study last year estimated that 4 million Americans get more than 20 millisieverts a year from medical imaging. Two percent of people in the study had high exposure — 20 to 50 millisieverts.

Another study by Columbia University researchers, published in 2007, estimated that in a few decades, as many as 2 percent of all cancers in the U.S. might be due to radiation from CT scans given now. Since previous studies suggest that a third of all tests are unnecessary, 20 million adults and more than 1 million children are needlessly being put at risk, they concluded.

Just because a scan didn't find anything wrong doesn't mean a test wasn't needed. Scans are useful for many diagnoses. But many studies suggest people are getting too much imaging now. For example, Mayo Clinic researchers reviewed the medical records of 251 people given heart scans in 2007 and found that only a quarter of them were clearly appropriate.

Reasons for overuse:

_Accuracy and ease of use. Scans have become a crutch for doctors afraid of using exams and judgment to make a diagnosis. Some think a picture tells more than it does. Imaging that shows arthritis in a knee or back problems doesn't reveal how to make it better, said Dr. Richard Baron, a primary care doctor in Philadelphia.

"Physical therapy for an orthopedic injury is always the first choice," yet doctors rush to order tests, he said. "The question you should be asking when you do sophisticated imaging is, 'Is there something I can fix with an operation?'"

_Malpractice fear. A missed heart attack or a burst appendix could be devastating for a patient — and mean a lawsuit.

"I have great sympathy for the ER physicians because of the responsibility placed in their hands with strangers that come in off the street," said Louis Wagner, chief physicist at the University of Texas in Houston. "They have to make a decision that could mean life or death for a patient, and the fastest way to find out is CT."

_Patient pressure. People urge doctors to "do something" to figure out what's wrong, and "often, doctors feel that the way to demonstrate that they're doing something is to order tests," said Dr. Christopher Cassady, a radiologist at Texas Childrens Hospital and the American Academy of Pediatrics' expert on this topic.

At his hospital, doctors first do an ultrasound on suspected appendicitis cases instead of rushing into a CT scan. Ultrasounds require no radiation.

_Health care chaos. One doctor may not know that another has ordered the same test. If a patient is referred to a specialist, "it's often easier for him to order another study than to figure out how to get the one that was done somewhere else," Baron said.

_Insurance issues. X-rays often are required by insurers to prove health, or for students to study abroad.

_Availability. Rural hospitals may not have an ultrasound technologist on duty in the wee hours, but imaging machines are always there.

_Treatment choice. A quick fix for chest pain — artery-opening angioplasty — requires far more imaging and radiation than bypass surgery does. The same is true of "virtual colonoscopy" instead of the standard version.

Which tests are overused? A scientific group, the International Commission on Radiological Protection, cites routine chest X-rays when people are admitted to a hospital or before surgery; imaging tests on car crash victims who don't show signs of head or abdominal injuries; and low-back X-rays in older people with degenerative, but stable, spine conditions.

Even when tests are justified, they often include more views than needed and too much radiation. Top offender: chest CT scans looking for clogged arteries and heart problems. Cardiologists are increasingly aware of this risk and are seeking solutions.

At Columbia University, a study on dummies by Dr. Andrew Jeffrey Einstein found two dose-modifying techniques could lower the needed radiation dose by 90 percent without harming image quality.

Another cardiologist and radiation safety expert, Dr. Gilbert Raff, showed the same in real life. A study he led of nearly 5,000 patients at 15 imaging centers in Michigan found that radiation dose could be cut by two-thirds with no loss of quality.

What should patients do?

"You should question everything — what's the dose, why am I getting it? You should be an informed consumer," said Dr. Fred Mettler, radiology chief in the New Mexico Veterans Administration health care system. He led a study of health effects after the Chernobyl accident and is a U.S. representative to the United Nations on radiation safety.

He advised challenging "big ticket" tests like CT scans that deliver a lot of radiation to the chest and abdomen — places where cancer is likely to develop. "You shouldn't get too excited about feet and knee X-rays," Mettler said.

Questions to ask about radiation scans:

_Is it truly needed? How will it change my care?

_Have you or another doctor done this test on me before?

_Are there alternatives like ultrasound or MRI?

_How many scans will be done? Could one or two be enough?

_Will the dose be adjusted for my gender, age and size? Will lead shields be used to keep radiation away from places it can do harm?

_Do you have a financial stake in the machines that will be used?

_Can I have a copy of the image and information on the dose?

Mettler suggests bringing a blank CD or thumb drive with you.

"You should have all of your stuff digitally on something," he said. "I keep mine on my laptop."

___

Online:

Consumer information: http://www.radiologyinfo.org

Lyme disease symptoms checklist

Hi again ~

I finally un-earthed this checklist and want to share it here, as I promised I would. Everyone will have at least a few of these symptoms, as they can be indicative of so many different conditions, some serious and some not. This list is simply a useful tool to use with a doctor, along with examination and testing, to ascertain whether lyme disease is a possibility. I checked off 41 things (!) on this list that I have, or have had in the past decade or so, although I'm not sure that each of them is actually a result of the lyme bacteria. This is an interesting and very thorough list of all the types of symptoms that can occur with lyme.In re-reading it, I must say that I am SO grateful that there are many of these symptoms that I haven't experienced!

If you decide to use the checklist (or share it with anyone else) and if you should feel concerned about your symptoms, the main message here is to see a doctor or naturopath (one experienced with diagnosing and treating lyme, as well as all immune-related illnesses). If you don't see someone who has experience with treating lyme, you may get the very common "It's all in your head" reaction, or.... many years and many tests and many doctors and many treatments and many dollars later, you may get a correct diagnosis and treatment from someone who does have the experience in working with lyme. If you have doubts about the medical community's lack of up-to-date info about lyme disease, watch the DVD "Under Our Skin" that I mentioned in one of my recent posts. It'll give you an understanding of some of the conflicts of interest in the medical community that keep lyme patients from getting accurate diagnoses and prompt, appropriate treatment.

Catch you later, Sukie (scroll down for the checklist)

LYME DISEASE CHECKLIST

Symptoms

Lyme disease is a clinical diagnosis. The results of commonly marketed antibody tests to detect Borrelia burgdorferi (the organism that causes Lyme disease) may be misinterpreted. Physicians are advised to base diagnosis on history (including symptoms and tick exposure), physical findings, and laboratory data.

The following is a list of symptoms resulting from Lyme and co-infections. An infected person may experience some or many of these symptoms, which is why diagnosis can be difficult. Check the boxes that apply to you and go over the results with your doctor.

Tick bites may go unnoticed, especially in the spring when ticks are small. There may be instances where transmission occurs other ways (including blood transfusion, placental transmission, sexual transmission, etc.). A bulls-eye rash may or may not appear (occurs on less than 50% of Lyme patients), and can occur on other body parts than where the bite occurred).

Tick Bite
o Tick bite
o Rash (basically circular, sometimes spreading)

Musculoskeletal System
o Joint pain or swelling
o Stiffness of joints, back, neck
o Muscle pain or cramps
o Creaking, cracking joints
o Heel pain
o Spinal sensitivity
o Movement of pain or swelling to different joints

Neurologic System
o Headache – persistent/severe
o Bell’s Palsy (facial paralysis)
o Burning or stabbing pains
o Tremors or unexplained shaking
o Numbness in body and/or extremities, tingling, pinpricks
o Weakness or partial paralysis
o Pressure in the head
o Lightheadedness, wooziness
o Poor balance, dizziness, difficulty walking
o Increased motion sickness
o Seizures, stroke symptoms
o Restless legs

Mental Capability
o Memory loss (short or long term)
o Confusion, difficulty in thinking
o Forgetting how to perform simple tasks
o Speech difficulty (slurred or slow)
o Stammering, stuttering speech
o Going to the wrong place

Psychological well-being
o Mood swings, irritability
o Unusual depression
o Panic-anxiety attacks
o Overemotional reactions, crying easily
o Aggression, rage
o Too much or too little sleep/insomnia
o Difficulty falling or staying asleep
o Obsessive-compulsive behavior
o Suicidal thoughts
o Paranoia
o Disorientation (getting or feeling lost)

Head, Face, Neck
o Stiff or painful neck
o Headache, persistent/mild or severe
o Twitching of facial or other muscles
o Jaw pain or stiffness
o Sore throat (may be chronic)
o Unexplained hair loss
o Scalp rash

Eyes, Vision
o Floaters
o Double or blurry vision
o Pain in eyes, or swelling around eyes
o Light sensitivity
o Flashing lights
o Tearing and/or dry eyes
o Vision loss/blindness

Ears/Hearing
o Decreased hearing in one or both ears
o Buzzing or ringing in ears (tinnitus)
o Pain in ears
o Sound sensitivity

Digestive and Excretory System
o Diarrhea
o Constipation
o Irritable bladder (trouble starting or stopping)
o Frequent urination
o Upset stomach, vomiting
o Bloating
o Acid reflux

Respiratory/Circulatory System
o Shortness of breath
o Chest pain or rib soreness
o Night sweats or unexplained chills
o Heart palpitations or extra beats
o Heart block, heart attack
o Valve prolapsed, murmurs

Reproduction
o Unexplained menstrual pain
o Unexplained breast pain, discharge
o Testicular or pelvic pain
o Loss of sex drive; erectile dysfunction

General Well-being
o Extreme fatigue
o Symptoms change; come and go
o Pain moves to different body parts
o Unexplained weight gain or loss
o Malaise (sense of not feeling well)
o Chills
o All types of rashes on the body and/or scalp
o Swollen glands
o Unexplained fevers (high or low grade)
o Itching
o Continual infections (sinus, kidney, yeast, bladder, etc.)
o Increased sensitivity to allergens (including foods)
o Exaggerated response to alcohol or sweets
o Nodules under the skin
o Flu-like symptoms (early-on, and possibly intermittent/on-going)

Remember to discuss this information with your doctor if you have concerns after going through this checklist. Many of these symptoms can be indicative of other conditions (such as menopause) or other immune system challenges. It is important to work with an allopathic or naturopathic doctor who has experience in diagnosing and treating lyme disease. Some doctors actually have the title of “lyme literate doctor.”

Week #10

Greetings ~

So today marks the beginning of week #10 on the Salt/C protocol. I am really amazed at the overall positive effects, and how much better I feel. I have more days of feeling really well, and better energy levels most of the time (I still get extremely fatigued sometimes). Some days I have my full, "normal" energy levels and feel like I'm "myself" again. The herx reactions even seem to be easing up a bit, but I hear that around week 12 the life cycle of the bacteria circles back around and it can be a pretty heavy-duty herx time. So we'll see what happens in a couple of weeks with that.

I've been dealing with a little nausea, and have determined it's probably from the Vitamin C, so I'm going to have to go back to using a buffered C that is time-released, I think. I switched a few weeks ago to taking C in capsules instead of tablets (easier to swallow). I'm going on-line today to see if I can find a buffered C in a capsule form, but have a feeling it'll be back to the "horse pills" (huge tablets).

You may remember a couple of weeks ago I was really herxing and having blurry vision and brain-fog along with it. My vision is back to "normal blurry" rather than "extreme blurry" and, for now anyway, the brain-fog is gone. The joint pain in my shoulders and elbows is down quite a bit, and I'm able to lift heavier things. The worst of the pain continues to be in my hip joints, but it's also better than it was. My knees are doing better, which gives me much hope, and I've had more days when I feel like I'm walking normally without pain.

I've come a LONG way from those initial months where I could literally hardly move and was in excruciating pain all over my body, and all I could do was sleep, read and eat. I have a very full life once again, although I definately have to pace myself, and I literally pencil-in rest/nap times on busy days.

I can really relate to much of what lyme patients talked about in the DVD "Under Our Skin." They spoke about how lyme is in many ways an "invisible" disease. To look at me, you probably wouldn't know how I truly feel. If you know me well you might notice that I don't walk as smoothly as I could, and you would see I've lost weight, and maybe notice circles under my eyes. That's if you're really looking closely and paying attention. But most people would have no clue that I am in pain, or where, that some days it's hard to think straight, etc. Of course that is true for many people with any variety of conditions, not just lyme disease. I have become much more attuned to other people's outer appearance, and I can tell when someone is walking gingerly or moving slower than they should. It is amazing, really, how many folks are in pain, and accept it as a "normal" part of aging, or as something they can't do anything about. Well maybe some of it IS normal, but I believe much of it is a result of our exposure to a toxic world of pesticides, smog, heavy metals and other types of chemicals and substances we've been exposed to. Clearly there are ways to deal with it and improve health, although it's a lot of hard work, and I am in HUGE favor of reducing/eliminating the toxins in our world so that we don't have to go through these kinds of chemically-induced diseases and illnesses, and so that our children and our grand-children don't have to, either....

The world is an amazing, awe-inspiring place. Humankind has trashed and thrashed it shamelessly, and we have finally started to wake up to that fact. We have a lot more to wake up to about respecting all of life and living with integrity, kindness and compassion - with true humanity toward others. Awareness and action are the two keys to turning things around. For me personally, what I can do right now is treat others as I prefer to be treated, live a clean lifestyle, choose organics, use chemical-free cleaning products, share my experiences, reach out and help others where I see a need that I can fill, and set the best example I can. I don't need to be perfect, but I do need to be conscientious. Once this crazy-busy summer is over I'd like to get involved with a group here on the island called Transition Whidbey, which is working to pull the community together to ensure that we all know how to best help one another and work together as a team during all phases of life and whatever experiences may come our way.

Ariana will be here tomorrow (YESSSS!) and I can't wait to see her. I'm teaching a Reiki class on Saturday, resting and playing on Sunday, and then Erick and I are off for a week in Sedona on Monday, while Ari and friends hold down the fort here. I have scouted ahead and know where all the veg-friendly restaurants and grocery stores are in AZ (they weren't there back in the day when I was growing up, but it's good to know they're there now!), and so we'll see how my body handles a week off its usual routine. I know my mind, heart, and spirit are gonna LOVE it, so I think my body will handle it, too, although I'll still have to pace myself a bit. Erick and I are both really excited about a week of adventure and play, after this year of him holding down three jobs plus acting in three plays, and me mostly in recovery mode, along with being an active board member at the children's theater, practicing and teaching Reiki, and having fun as a "big sister" to Morgan.

Hope you are happy and healthy wherever you are. More soon,

Sukie

"Under Our Skin" ... a must-see!

WOW. Powerful, powerful, POWERFUL…..!!

It’s midnight on June 7th/8th…. Erick and I just finished watching the documentary, Under Our Skin, which is about the medical travesty that is lyme disease. I feel that anyone and everyone could benefit from watching this documentary – not just because you or someone you know may have lyme, but because it has far-reaching implications for medical care and treatment in the US and beyond, and also because of the implications about the state of infectious diseases in this country. And anyone who has been told they may have not only lyme but fibromyalgia, MS, ALS (Lou Gehrig’s disease), dementia, Alzheimer’s, lupus, chronic fatigue, or Parkinson’s, would also be amongst the candidates who should watch the film, as sometimes these diagnoses may be erroneous, when the true diagnosis may actually be lyme disease.

This 2008 documentary has won numerous awards in filmmaking. Besides the movie itself, there is another hour + of interviews and follow-up with some of the subjects of the film (including a strong statement by author Amy Tan), most of whom are much better after three or more years of treatment for lyme (in spite of the medical system!), although one or two subjects have also succumbed to complications of the disease. A couple of very powerful young women, Mandy and Dana (amongst many others), share their stories and allow themselves to be filmed at their worst, while on their respective roads to recovery. The DVD also includes an excellent discussion guide. There is also a great interview with the filmmaker, Andy Abrahams Wilson. He states, “What has gotten under our skin is not just a microorganism, but medicine itself.” The film goes into well-researched detail to explain this.

The info featured in the DVD all concurs with my own research. The only issue of any concern for me is that alternative treatments are not given any discussion (except a passing mention in the treatment of Dana who chooses to work with Dr. Dietrich Klinghardt, a Seattle MD and Ph.D, noted as being the top physician working today with lyme disease). Emphasis is put upon long-term antibiotics use, presumably because it is this treatment that insurance companies are denying the majority of patients who choose to pursue conventional allopathic treatment. Realizing that there is only so much time and so many issues one can focus upon in a project, I can understand why alternative treatments were not given consideration here, although I must say I hope that in the future this same filmmaker, or others, will also go down that particular rabbit hole. Many people with lyme have been transformed and relieved of symptoms through the use of such alternative treatments as the Salt/C protocol (that I’m currently using), Rife Machines, homeopathics, LED light therapy, and others.

The film was striking – riveting, actually – for me, as I relived many of my experiences with lyme through the subjects who were interviewed. I witnessed people in too much pain to move, who were (initially anyway) feeling hopeless at times about their outcomes. A year ago, I experienced several months of absolutely debilitating pain, so horrific I could barely move, accompanied by sheer exhaustion and, of course, the sadness and anger that came along with what felt like such a huge loss of control over my own life. After quite a few months of that, and along with working closely with my naturopath, Dr. Jennifer Rabinovich, I broke through my denial and did the needed research to conceptualize what I was up against and what my options were for regaining health and achieving vibrant wellness.

I’m still on that journey and probably will be for a long time, maybe for life. I am so much better now I can hardly remember how ill I was just a year ago, although I still have the Herx reactions and lyme flares that kick up periodically to remind me for a few days at a time how bad it can be. I feel SO blessed and fortunate that I followed my instinct to work with a naturopath and alternative treatments, that I was diagnosed relatively quickly compared to most people who suffer for years before they find someone who will willingly test them for lyme bacteria (due to the politics in the world of big medical profits as is explained in the film), and I have spent much less money than many folks have, on my own particular healing journey. I am leaps and bounds better than I was, and despite the occasional setback and “herxy” week, I know that I am on a path of true wellness and transformation. Much of this is due to the Salt/C protocol and other supplements I take, much has to do with my diet and avoiding foods that I am allergic and/or sensitive to and eating “clean” food, and, I believe, my very positive outlook and spiritual perspectives. These have helped me stay the course and see the bigger picture, which shows me that we on this planet have thrown ourselves and all of life out of balance, and we can either be a part of the problem or a part of the solution. It’s bigger than our own particular dis-eases….

I also feel very, very blessed that for me, the bacteria chose to bury themselves mostly in my joints and muscles, as opposed to my brain. While I've had some definite neurological symptoms (numbness, pins and needles, crawling sensations)and brain fog, as well as blurry eyesight that comes and goes, it's been relatively mild for the most part, in comparison to what many folks go through.

Quote from the discussion guide…. “Under Our Skin follows the stories of several individuals with Lyme disease and the doctors who treat them.

“In seeking to understand why incidents of Lyme disease are underreported and why patients are so often misdiagnosed or simply dismissed, Under Our Skin exposes a complex story of politics and conflicts of interest among researchers, insurance companies, and ‘Big Pharma’.

“This film provides a penetrating view into the science and politics of one of the most prevalent, misunderstood, and controversial illnesses of our time. It invites viewers into the heroic lives of people struggling with the disease and into the complex web at the intersection of science, medicine, and money.”

For more info about the DVD, please go to: www.underourskin.com.

And for those interested in knowing more about conventional AND alternative therapies, please read Insights into Lyme Disease Treatment: 13 Lyme Literate Health Care Practitioners Share Their Healing Strategies by Connie Strasheim (2009).

Lyme-related books & DVDs: www.lymebook.com.

As always, thanks so much for taking the time to read this. I am especially hoping my friends with MS, ALS, and certain strange, un-named health presentations, will make sure to be tested for lyme. The tests that have the most validity – together – are the Western Blot and the ELISA. These may be administered by allopathic or naturopathic MDs who have experience with diagnosing and treating lyme. If you run into a doctor who says lyme is rare or it’s all in your head… move on! And besides the tests themselves, there are a number of symptoms that present themselves differently in different folks that may also be taken into consideration in formulating a diagnosis.

Despite what you may have heard, lyme disease is real, and it is a silent epidemic. I believe it is very important to educate ourselves about lyme and other bacterial infections, as they are on the increase. I am living proof that these things do exist, and that it’s possible to regain and embrace a healthy, vibrant life.
Much love and many blessings to all,

Sukie

Universal life journies....

Hi to all...

I really pushed it yesterday. Took my "little sister" on a ferry ride to Port Townsend and ended up sharing a quesadilla with her (wheat, gluten, cheese = not good for Sue!). I tossed and turned all night with a lot of pain in my extremities, and consumed aspirin early this morning. However, I must say that a few hours later I am feeling really good, and this has how it's been lately. It just seems that my immune system is recovering and bouncing back much more easily than it has in a looooooonnnng time.

I also noticed, while strolling around the city yesterday, that my knees were hurting less, and it felt like I was walking much more normally than I have in ages. These are encouraging, exciting little things to notice!

Though I am blessed to be feeling so much better lately, I need to add a couple of caveats. First, this deal is cyclical and I'd be really fooling myself if I thought I wouldn't get slammed again a few more times. I don't think anyone will ever know for sure if they are really "over" an infection like lyme, and I still have a long distance ahead of me, for sure.

Secondly, I don't want to give the impression that everyone is the same and that lyme is "easily" or "speedily" transcended by all. I know people who have had it for many more years than I have who remain devastated by the disease; people who have tried everything - allopathics, homeopathics, alternative treatments, heavy pharmaceuticals of various kinds - and are still feeling very unwell. It can be an extremely debilitating experience long-term, and often goes hand in hand with deep depression. I have experienced some of that for shorter periods of time and I have a sense of the hopelessness that some may feel having lyme, fibromyalgia, or other types of immune-related disorders that may tend to take mysterious twists and turns.

Why am I feeling so much better in such a relatively short time? (It's been just over a year since my life went CRASH). A big part of this is obviously the Salt/C protocol. My immune system seems to be strengthening quickly, although as soon as I say that I get thrown on the ground for a few days....

I also think that I just have an extremely strong constitution, in general. I have been fortunate to have not had much illness or disease in my lifetime, prior to contracting lyme bacteria. I did have serious asthma as a child that went away when I was 5, after we moved to Arizona from L.A., and after both my parents quit smoking. I've had a few bouts of respiratory/bronchial "stuff" over the years, but overall, haven't had as many colds and flus as the average person.

As a younger adult I had three ectopic pregnancies and three early miscarriages, which were the biggest health issue I faced before the little tick bite that changed my world. Amazingly, in the midst of all that medical confusion, I did give birth to my sweet daughter, Ariana, 23 years ago. I've always called her my miracle child. That's a whole other story that maybe I'll share in this blog one day...

For awhile in my 30's I dealt with candida and got onto that bladder infection, antibiotic, candida merry-go-round for a couple of years until I began to do some research and realized that antibiotics were doing more harm than good. I stopped eating sugar and refined carbs, while taking lots of cranberry tablets, until I was able to break that cycle, and I've never looked back on any of that.

The only other deal was the gall bladder attack I had in my early 40's (which I mentioned in an earlier post). I refused to let them remove it, and made a heavy lifestyle change which included becoming a vegetarian, and also cutting out cheese for a long while (then gradually added in a small amount here and there, until I became a vegan a couple of years ago). I still have my gallbladder and we have gotten along swimmingly ever since I made those decisions.

The only serious physical bodily injury I've sustained was when I slipped and fell on a huge granite boulder about five years ago, which caused a rotator cuff tear to my right shoulder. That was really awful for a couple of years, and still bothers me now, although not nearly as much.

So who is to say why we "get" the illnesses, dis-eases, and other life challenges that we do.... I personally feel it is a spiritual journey that we all must take in some form. I don't know anyone who hasn't had (or doesn't have) personal challenges to overcome in life. I believe it is a part of our awakening as beings that are equally human and spirit. No one is immune from "problems." It's just the way it is, and it basically boils down to how we choose to deal with it and conceptualize it that oftentimes determines how we ultimately feel mentally, emotionally and spiritually, as well as physically. And as I've mentioned before, I believe so strongly that all of life is interconnected, and I see that this amazing planet we call home is going through huge labor pains right now as she attempts to re-birth and transform herself. That means all humans, animals and other life-forms are along for the ride. And we are a part of the ride. We can rise above fear and engage with life from a place of love and compassion, or we can become part of the greed/control/fear mentality that, unfortunately, wreaks havoc all over the place. Yet that's what gets all the press. We don't hear nearly as much about all the beautiful, meaningful, selfless acts of love that abound all around us and within us. But they are there. And whether we are "sick" or "well", we can choose to use our time in this life for good. We all have our universal life journies to make, and our tales to tell.... Life isn't always easy or fun, but it's pretty amazing all the same, at least I think so.

I so appreciate all the loving support I've received from friends and family on this journey. There are some who don't really understand (especially my mother), but most do, or are trying to (hence, this blog....). My mom (who doesn't read the blog) would like me to see an allopathic MD and just "fix" this thing...! She can't relate to what I'm experiencing, but then she is also almost 89 years old and is basically striving to just enjoy what is left of her life. She doesn't want pain or illness in her world if at all possible, especially if it affects her daughter. And I understand. If she had any idea of how much pain I have truly been in at times it would wreck her with worry, and so I don't "go there" too often....

I am a big fan of author Alice Walker, and yesterday came across a bit of information about her journey with lyme disease. I've also ordered the book she wrote which discusses some of that, called The Same River Twice: Honoring the Difficult (1996) . I'll share more thoughts on it once I've read it.

I'm pasting in some info below about Alice Walker, and then I'm off to play in the sunshine. Have a lovely weekend!

Sukie

About Alice Walker and lyme:

While lying prostrate on the ground in pagan worship of the Gaia or the Mother Earth, as she said that her Native American and African ancestors before her did, Alice was bitten simultaneously by three ticks. Alice had sustained tick bites all of her life and thought nothing of them. She did not know however, that these small bites would mark the beginning of another difficult period in her life. The ticks carried the debilitating Lyme Disease bacterium. A few days after the bites, she developed the signature red bull's eye marks on her stomach where the ticks bit her. Since little to nothing was known about Lyme Disease in the early 1980s by the general physicians,she did not realize that she had contracted it.

During the making of the movie The Color Purple, the ravaging effects of Lyme Disease made Alice too tired to even move some days. She was forced to lean upon a walking stick. Because she was so worn out, Alice lay upon a couch in one of the trailors or under a tree performing tarot card readings for some of the cast and crew during the making of the movie. The cause of the disease itself was a mystery to herself. She also had to care for her mother who was still recovering from illness. She believed that she and her mother were dying.

ALICE WALKER states: "Well, I came down with Lyme disease in the middle of all of this, and I experienced it actually as a spiritual transformation, even though I didn’t know that was going to be the result. It was very frightening. But I came out the other end of the bashing that I had received, the physical debilitation from Lyme disease, the breakup of my relationship with a partner at the time. I came out of all of that with a renewed sense that life itself, no matter what people are slinging at you, no matter what is happening, life itself, basic life is incredibly precious and wonderful and that we are so lucky to have that, you know, that we wake up in the morning, that we hear a bird. If you think about little things, they seem little, but they are so magical, you know, like eating a peach. I came through that period understanding that I am an expression of the divine, just like a peach is, just like a fish is. I have a right to be this way. And being this way, The Color Purple is the kind of work that comes to me. I can’t apologize for that, nor can I change it, nor do I want to."

New discoveries...

Another rainy day on Whidbey - we've had more than our share this spring. But you know what? It's still beautiful, even when it rains. Woke up this morning to a strange hooting sound, and discovered a chubby quail sitting on the railing of our deck - first one we've seen on Whidbey. New discoveries every day....

Pain levels really low today - Hurray!!!!

Speaking of new discoveries, came across an interesting article from 2007 (see below). If you were to read many books and articles about lyme treatment you would notice that the push continues to be for antibiotics, even though long-term use is known to be counter-productive. The mainstream doesn't want to talk about alternative treatments. Meanwhile, numerous people are feeling better all the time from using alternative treatments like the Salt/C protocol and Rife machines. Could these treatments be risky? Perhaps. So far there seem to be few side effects. Are they FDA-approved? No. Is it risky to use antibiotics long-term? Absolutely!

Of course, another reason I appreciate the Salt/C protocol is that it costs very little, compared to allopathic pharmaceuticals (which make lots and lots of money for Big Pharm). I've seen so many horror stories of people spending their entire life savings trying to regain their health. I spent 10K before I decided to do my own research and take the lead on my recovery. What a blessing to have the support of a well-educated/trained doctor who respects me and treats me as a partner in healing. Much gratitude to Dr. Rabinovich!

Of course there is a lot of material out there to read and research about lyme, and each person has to form their own opinion. I try to read with an open mind, but I'm clearly biased toward what I intuitively assess to be the least harmful approaches, at least for me.... My body is pretty clear about what it does and doesn't want to do.

Besides the article below on President G.W. Bush, I also came across articles stating that Michael J. Fox was initially diagnosed with lyme disease before his later diagnosis of Parkinson's disease. The borrelia burgdorferi bacteria that characterizes lyme can also trigger other conditions like Parkinson's, meningitis, MS and more....

Be safe while hiking and in nature; wear long pants, and be sure to check yourself thoroughly (or have someone else check you) for ticks. Any tick bite should be checked out asap. Any bullseye rash should be checked out asap. I'll look for a good article that goes into more depth about prevention and early intervention. The main thing about lyme is to catch it early (like I DIDN'T). A round of antibiotics will likely clear it up if it's caught early. If not, then antibiotics become less and less useful, and alternatives may need to be considered. That's if you can find a lyme-literate doctor in your area who is trained and knows what to look for, as well as how to diagnose it.

Again, this is not about fear; it's about awareness. More soon,

Sukie


Bush Was Treated For Lyme Disease
(8/8/2007)
A Lyme Disease Warning From The CDC
(6/18/2007)
President Bush's recently revealed treatment for Lyme disease makes him part of an unfortunate trend: The tick-borne infection is on the rise, with cases more than doubling in the past 15 years. The good news is that most patients, like Bush, take antibiotics for a few weeks and are cured, especially if they were diagnosed early.

But people who aren't treated promptly can develop painful arthritis, meningitis and other serious illnesses. If they don't experience, or notice, Lyme's hallmark round, red rash, they can struggle to be diagnosed, as other early symptoms are flu-like and vague.

And a small fraction of patients report pain and fatigue that linger for months or years after treatment. Do they still have Lyme, or something else? No one knows, although desperate patients often try repeated antibiotics despite little evidence that the drugs do more good than harm.

The central problem: No test can tell when someone has active Lyme disease — when Lyme-causing bacteria are alive in the body. Today's tests instead spot infection-fighting antibodies, which can take weeks to form but then linger long after Lyme is gone.

A push is on for better Lyme tests, with parallel hunts getting started by the National Institutes of Health and, separately, by patient advocacy groups angry that modern medicine hasn't found an answer.

"The time is right to take a closer look," says Dr. Dennis M. Dixon, chief of bacteria research at the NIH's National Institute for Allergy and Infectious Diseases, which plans to gather leading scientists later this year to determine the best approaches. "We would not rule out any avenue."

"We have a lot of new tools" to explore, adds Dr. Brian Fallon, who directs Columbia University's new Lyme and Tick-borne Diseases Research Center, funded by the advocacy groups Time for Lyme and the Lyme Disease Association. "Science is going to bridge the gap."

Among the research:

_A newer antibody test seems to indicate when antibiotics are working in early Lyme stages, offering the possibility of tracking treatment response.

_Hunting markers of active infection, including bits of Lyme-related protein in the blood or spinal fluid.

_Fallon is using brain imaging to try to distinguish when Lyme penetrates the nervous system.

About 20,000 new cases of Lyme disease are reported to the government every year, says a June analysis from the Centers for Disease Control and Prevention.

The CDC acknowledges that's a fraction of the true toll, as many cases go unreported. Experts say it may be five times higher.

Still, the figure is more than double the count in 1991, when official tracking began, and CDC says it's not due just to better awareness of Lyme. The rise is expected to continue as suburbia expands into the woodland home of black-legged tick species, commonly called deer ticks, that carry Lyme-causing "Borrelia burgdorferi" bacteria in the Northeast, mid-Atlantic, north-central states and Pacific Coast.

The only human vaccine was pulled off the market in 2002 for lack of consumer interest. It was partly protective; better, next-generation vaccines are years away.

Don't live in a high-Lyme area? Different tick species carry different threats, such as Rocky Mountain spotted fever. Most recently discovered is STARI, or Southern tick-associated rash illness — a rash very similar to Lyme's but not yet linked to other symptoms. It's caused by a still unknown organism carried by the lone star tick.

But Lyme is the most common tick-borne infection, and overshadowing the treatment success for most patients is debate over what patient groups call "chronic Lyme" and mainstream medicine, striving for neutrality, calls "post-Lyme syndrome."

The two camps became even more polarized as two major medical associations released guidelines in the past year that found no good evidence that long-term antibiotics help lingering symptoms — but warned they can cause serious side effects and spur formation of drug-resistant super-germs.

"If there were evidence that prolonged therapy was beneficial ... I'd be the first person to jump on the bandwagon," says Dr. Eugene Shapiro, a Yale University pediatrics professor and co-author of the guidelines from the Infectious Diseases Society of America and American Academy of Neurology.

That's not to say some people aren't sick, the guidelines stress, just that it's not clear why. Among other possibilities, Lyme may over-activate some people's immune systems so that antibodies attack their own joints.

Furious patient groups say the guidelines prompted some insurers to quit paying for some patients' only relief — and that the recommendation instead should have been there's not enough data to know what works. Diane Blanchard, co-president of Time for Lyme, points insurers to still other guidelines, from the International Lyme and Associated Diseases Society, doctors aligned with the patient groups who back more antibiotics.

"The last thing many of us want to do is ingest an antibiotic," says Blanchard. "We are basically sitting on our hands watching this disease expand its ill effect ... and doing very little except for taking sides, and essentially that's not helping anyone."

(© 2007 The Associated Press. All Rights Reserved. This material may not be published, broadcast, rewritten, or redistributed.)

More on "Under Our Skin" documentary

Here we go... two entries in one day. But I wanted to share this article I just ran across as I was trying to order a copy of "Under Our Skin" the documentary I mentioned in my earlier blog today. First of all, I could only "save" it on Netflix, which means they don't have it yet. So I thought I'd just purchase it from Amazon.com, but it's $99 bucks, so that's not happening! I'll keep trying to find it in a format that's affordable...

In the meantime, thought I would share the below article, which is an interview with actress Joanna Kerns, whose adult daughter has very severe lyme. It's very interesting and reinforces the medical challenges with getting diagnosis and proper treatment. As my own doctor says, lyme is a "very political disease." She says this because so many doctors say it doesn't really exist, and there is disagreement over how it is contracted and spread. And of course, there are always those groups who would like to control situations for profit....

Anyway, here is the article, and I'll see you soon, Sukie

For Lyme Disease Sufferers, 'Under Our Skin' Is EssentialBy Joanna Kerns (as told to Steve Pond)
Published: November 10, 2009

My daughter Ashley is 31. She’s an attorney. She went to law school. She passed the bar. She made the Law Review. She was published.

And now she has trouble reading a page in a book. She can’t drive, and three months ago she had to quit her job because she couldn’t stay awake, and was in so much pain she couldn’t function.

That is what Lyme disease does. It’s a silent killer, a real disease that can ruin your life. And until the medical community opens up and starts looking at it in a different way, it will continue to plague us.

I’ve been reluctant to talk about this until now, because my daughter is the one who’s sick, not me. But when I saw Andy (Abrahams Wilson)’s film “Under Our Skin,” I thought, oh my God, this film needs to get a lot of attention, because that’s the only way things are going to change.

Ashley’s story started when she was about 12 years old. From that age on, she suffered from intense joint pain that would migrate from joint to joint for no reason. She also had debilitating fatigue, and insomnia; when she did sleep, it wasn’t refreshing sleep. She was able to overcome it at times, but she would always have flare-ups.

From everything I read, I initially thought it was Lyme disease, and we had her tested many times. But she was being tested with the ELISA test, which we now know is a substandard test that only shows the Lyme spirochete in the early stages of exposure.

Also, the medical community in California didn’t want to even entertain the idea of Lyme. Ashley ran into every conceivable diagnosis. Doctors told us that she was overweight, that she had a little bit of hyper-mobility, that it was all in her head.

Right: it’s all in her head. You get sick, you give up a job you’d worked hard to get and where you earn a good living, you can’t think, and people are telling you it’s all in your head? On top of the pain and fatigue that she already felt, that caused her anguish and heartache and depression.

We didn’t get a proper diagnosis until recently, when I met a woman who had gone to India for treatment of chronic Lyme disease. Through her, I got to a doctor who gave Ashley a test that is looked down upon by the traditional medical community, and she tested strongly positive for Lyme.

She’s probably had it for 18 years, and she’s very, very ill right now. The only thing that’s been proven to cure Lyme is long-term antibiotics, but Ashley is so weak that they haven’t even started her on the antibiotics. She’s been doing a very strong homeopathic regimen to boost her immune system first, and then she’ll probably be on an IV and have to shoot antibiotics on a daily basis. And the thing is, we don’t know what will happen with insurance. So far, so much of this is outside of what insurance will pay for.

Unfortunately, I don’t think it’s changing on the health-care front. My doctor in Santa Barbara says he’s diagnosed three patients in the last six months with Lyme disease, but there’s a whole group of doctors out there who say the same thing: it doesn’t exist, there’s no such thing as late-stage Lyme. It’s a very political disease, and the only way it’s going to change is if a film like ‘”Under Our Skin” gets out there.

In my profession, I also see that this is an issue actors don’t want to talk about. If you’re a working actor and you have Lyme disease, you’re scared that the insurers who work on movies and TV shows won’t insure you. I think Parker Posey recently had to pull out of an Off Broadway show because she’d been diagnosed with Lyme, but she’s one of the few people who’s been open about it. And that needs to change.

So many people have stories like this, and I hear more of them every time we screen the movie. We’re in such trouble with health care in this country, because the profit margins that all these medical institutions demand are just getting in the way of people getting better. And until the medical community opens up and looks at things in a different way, and provides money for research, things won’t change.

Why is there such resistance to going down this road? I don’t know. All I know is that we’re going to do everything I can to get Ashley better. And that means supporting important works like Andy’s film, going wherever we have to go, and seeing whoever we have to see.

A movie about Lyme, and some celebrities who have it...

Hello....

Having a great week so far... Last week I was in some pain, but this week, feeling lots better. When I first started dealing with lyme, it was many painful days with the occasional "good" one. Now it is more like many good days, with the occasional "bad" one, or the occasional difficult week. In other words, I feel I am continuing to get better all the time, with the occasional setback - much like the two steps forward and one step back concept.... except I think I'm closing-in on three steps forward and one step back. Although you have to remember that for me, a "good" day right now means one where I'm at a "3" or less on the pain scale. I still can't do yoga or kayak - my true measures of getting back to well-being - but I am ever so much better and a "3" or less pain day makes me so happy! Apparently, I am easily amused, but that's okay....

I will say that in women's group yesterday I was able to sit on the floor on my zafu, which I haven't sat on comfortably for a couple of years. This required me to bend my knees behind me to sit on the cushion, which is a type of round meditation pillow. I was able to be comfy that way for about 20 minutes, which felt like quite a big success. After going through this healing experience, there are so many things I'll never take for granted again, like simply being able to get down and sit on the floor....

One thing that's helped me feel better in general is that I have started taking 2 each C and salt tablets at a time, rather than three. I was trying to get away with taking these supplements fewer times in a day, but I have found I feel better when I take smaller doses, more times in the day. Live and learn...

Today a friend sent me some info about Samantha Stosur, a young Australian tennis player who was sidelined by lyme in 2007, and who is back in the game in a big way, knocking one of the Williams sisters out of the running at the French Open a couple of days ago (you can tell we don't watch TV; I don't know which Williams sister is playing; and I really do enjoy tennis). Fortunately for Ms. Stosur, it seems she was diagnosed early and received prompt treatment which has enabled her to be back at top form fairly quickly. High fives for her!

I've also noticed that there are other well-known people who have dealt or are dealing with lyme disease, including authors Amy Tan and Alice Walker, actors Richard Gere and Parker Posey, singers Daryll Hall and Pete Seeger, and I even saw in the article mentioned below that President Bush was somehow associated with lyme, but couldn't find a follow up link to it (and it didn't say which Bush - daddy or dubbya), so not too sure about that one, and it's really just too hard to resist the urge to say "that explains a lot".... but then maybe I can say that and get away with it since I have lyme, too! (one thing's for sure, you gotta have a sense of humor). I do pray that all of these folks, as well as all others who are dealing with lyme, will soon be transformed and well if they are not already.

I have also learned about a movie that was released a couple of years ago, and am about to order it from Netflix. Anyone out there seen it? It's called "Under Our Skin" - some type of expose' on lyme disease, including some of the conspiracy theories (I love a good conspiracy theory!). Here is a little article about it....

See you in a couple of days,

Sukie (see article below)


What’s wrong with them?
Lyme documentary gets Under Our Skin
By DEIRDRE FULTON | September 17, 2008
FIGHTING BACK: The battle against Lyme disease.


"Once bitten: The fight over what is — and what is not — Lyme disease," by Deirdre Fulton

President Bush had it. Irene from The Real World: Seattle had it. Novelist Amy Tan, musician Daryl Hall (of Hall & Oates), and actor Richard Gere have all had it. Here in the Northeast, you can't go around the block without running into someone who's fallen prey to Lyme disease, or who at least knows someone who has. Yet for all this ubiquity, there's an aspect of the disease that's remained largely hidden — until now.

Released earlier this year, Under Our Skin labors to bring "the Lyme controversy" into mainstream conversation. That controversy, discussed at length in the piece that accompanies this one, is nowhere close to being resolved. Nor is it easily understood, though director Andy Abrahams Wilson does a good job of boiling down the salient facts, albeit from a biased point of view.

Wilson became interested in Lyme disease after a friend struggled with neurological problems and was ultimately diagnosed with Lyme. He quickly recognized that beyond the basic facts, there exists a severe lack of credible information about the disease.

“I was shocked about what I thought I knew about Lyme disease,” he writes in his director’s statement. “How I hadn’t taken it seriously, and how I knew few others did either. I was shocked that something with such far-reaching, life-and-death implications went so unnoticed.

“As with most mysteries,” he continues, “I soon found that conspiracy theorists filled the void.”

Under Our Skin goes into some of those theories, primarily to investigate the persecution of “Lyme-literate” doctors who believe that long-term (sometimes intravenous) antibiotic therapy is called for in certain cases. The documentary delves into whether or not the Infectious Diseases Society of America Lyme disease panel harbored conflicts of interest or plain-old narrow-mindedness when it issued guidelines for diagnosing and treating the disease — guidelines that suggest chronic Lyme infections don’t occur, and that it is dangerous to treat Lyme disease with long-term antibiotic regimens (as many people in the film did).

But most importantly, Wilson’s film focuses on several sick people who say they suffer from chronic Lyme disease — and who have found doctors who agree with them. Their stories are dramatic, scary, and heartbreaking. When he flashes quickly from one to the next, letting them share what they’ve been told is wrong with them, or how they feel about their sickness, it’s extremely effective.

Most arresting is Mandy Hughes, a beautiful young woman who was “diagnosed” with chronic fatigue syndrome, multiple sclerosis, and dystonia before she tested positive for Lyme. In uncomfortably long, lingering shots, Wilson shows us Mandy’s good days — when she smiles and laughs about the absurdity of her condition — and her bad ones — having a seizure on the couch, attaching a tube of antibiotics to a port in her chest, or fretting that her husband will get sick of her sickness.

The only problem with Under Our Skin is an absence of climax; Wilson moves from the mystery of the illness, to the involvement of the doctors and insurance companies, to the question of whether or not Lyme can be transmitted through sex or from a mother to her fetus, but never moves through a complete story arc. But perhaps that’s the point — the true tale of this multifaceted illness is far from its resolution.




Read more: http://thephoenix.com/boston/news/68413-whats-wrong-with-them/#ixzz0ppxxquV9