Introducing NIH Person-Centered Outcome Tools

Introducing NIH Person-Centered Outcome Tools

I’m very surprised that this is just now coming about. You would have thought that patient outcomes would have been included in research studies. This shows real promise to the chronic illness community that studies into Tick/Vector borne illnesses will show a different picture of patients after treatment. This is a 3 hour presentation but if you are even a little bit medically literate you will find it interesting. 

 

  In just about every article we read on preventing tick bites it’s either suggested we use DEET or Permethrin. I’ve read articles advising spraying Permethrin around your property, using it on deer feeding stations and in cattle lots. 

  We are facing a dilemma right now that I’m not sure everyone is aware of. We have Bees dying off colony by colony in the millions and the media focus has been on Monsanto et al. 

  So here’s the pickle, for sure Deet and Permethrin work to keep you from getting bit, but DEET can be toxic to humans at certain strengths. And Permethrin is one of many insecticides that are killing our bees but not so toxic to mammals except cats. (something tells me the verdict is still out on that one)

  Permethrin says ” In agriculture, permethrin is mainly used on cotton, wheat, maize, and alfalfa crops. Its use is controversial because, as a broad-spectrum chemical, it kills indiscriminately; as well as the intended pests, it can harm beneficial insects including honey bees, and aquatic life”

As more and more awareness of tick borne diseases spreads, so does the use of Permethrin.

Don’t Assume

~Dear Doctor, Nurse, Friend, Neighbor,

Don’t assume for one minute that my loss of words, ringing in ears that makes it hard to hear and focus, the twitching in my eye that make it hard to see, my aching knees hips back elbows shoulders and neck, that I am Stupid or have a Somatic disorder aka mental problem.

I’m well enough to see that eye rolling, smirk and can hear the condescending tone in your voice when speaking to me. Outwardly I look just peachy don’t I? Come on in to where I’m at and you’ll be praying for death most days.
other
Next time someone tells you they have Lyme Disease or some insect borne illness, stop your judgement and the urge to tell that person all the other thousands of reasons they might be sick. Just Listen and lend a supporting hand, hug or smile and if you have the resources, learn more about what they are going through.

Sincerely, Ten’s of Thousands of Lyme Patients across this planet.
Cheryl S. ~

Tis the Season to Check your Medication!!

Holy crazy Batman!!!!

Tis the season for all the “under medicated” and “over medicated” fruit loops to be at the store LOL! Gads! I was in the midst of insanity at Wegmans. 

I came out of an aisle a little too quickly and bumped into a woman’s cart. I said “oops, sorry” smiling at her and boy howdy did I get the biggest “eat poop and die b$%^h” look I ever got in my life.

Then I turn down aisle after aisle only to be blocked by someone staring blankly at the shelves while their cart is parked in the middle of the aisle. I honestly didn’t see a soul smile at anyone, just major grumpy people or people looking totally lost in it all.

Needless to say just the thought of it all made me smile more, there I was grinning at the eggnog, the meat section and the cheeses. Itching to whip around on the grumpiest person I see and loudly proclaim “Merry Christmas to you too!!!”

I instead, grabbed what I was after and ran for my life, fearing that the mood in there would rub off on me and I would be found staring blankly at a wall of crackers.

The moral of this is be sure before you head out to the store that your medication is not Over done or you didn’t take enough LOL!!

Un-noticed Moments of Change

This is something that just occurred to me at the store yesterday.

     We are so busy with living our lives that many changes around us and in our lives go un-noticed or we just take them for granted.  We, well many of us boomers at least, remember having reel to reel tape players and then came along the 8 track players, then cassette players and then on to the cds and yet again we now have digital players. i-pods and mp3 players.

     Oh, and not to be forgotten, our 45 collections we used to swap and trade with eachother.Remember the first transister radios with their painfull ear pieces?   I had one tucked under my pillow many nights just to listen to the music.

     Remember going to the grocery store and seeing near the door the Tube stands?  Bunches of different tubes for different TVs and Radios and there was usually a tube tester next to that.

      Film for our cameras went through lots of changes as well.  I had to close myself in a dark closet to load my Brownie camera and then we got the 110 cartridge cameras and Poloroid cameras and those really expensive 35mm cameras. (I have a package of flash bulbs in my collection)  I always thought it was fun to try to catch those bulbs as they popped out of the camera but then the cubes came along and ruined that fun.

     The way we keep our photos has gone through changes as well, from licking those little white corners to hold your pictures to a page, to those “magnetic” pages (that turned out to ruin your pics), to albums with Pockets you just slide your photos into. During Thanksgiving I was loading my Mothers digital picture frame with the pictures we took while visiting while listening to some of my favorite music on my i-pod.

     I embrace and love most of the changes in technology and look forward to other changes to come.  Somehow though, it seems that no matter how I try I can’t remember the change over. The point where you no longer saw the tube testers, or the reel to reel tapes, the ‘cube’ flash bulbs or the 45 records in the stores.

     What got me to thinking about this stuff was I kept noticing that something was missing near all the registers this year (at least at the stores I was in).  Film for Cameras!  During the holidays we’d see those portable racks on every other aisle or register loaded with film in multi packs.  I had totally forgotten about digital cameras replacing film.

     Maybe this is a leason to us all to keep our selves alert to the changes around us and not take so much for granted, after all nothing lasts forever and who knows what else we are missing while we are so distracted by all the progress of our time?

Wishing everyone a warm and watchful Holiday Season.

Related articles

• Analogue audio memories (part 2): Reel-to-reel and 8-track (slouchingtowardsthatcham.com)
• Brownie Box Camera (hwilliam.wordpress.com)

I can’t describe just how much I love food.  I think I can safely say that we all have our “feel good” meals or what some refer to as comfort foods.   Meatloaf with scalloped potatoes?  Clam Chowder? Chicken and dumplings?  Ham hocks and Greens?

I love all food. I suppose you could call me a foody.  There’s only a couple of things that just aren’t on my love it list. Cactus, I tried it once and the taste wouldn’t leave for days.  Anchovies straight up,  way toooooo salty and fishy for me, and I love seafood.   I do confess, my number one favorite is Italian food.  Not the stuff you find here in the States, though I’ve had some that came close to actual Italian.

I love the simple way of cooking in Italy and the fresh ingredients that are used.  Nothing had me so ecstatic as walking through the open air markets.   The smells, sure wish we had smell o vision just to relive it, were wonderful.  Cheeses, smoked and hanging on racks. Olives, I never thought I’d fall more in love with olives until I tasted them in Italy, I haven’t found the same here yet and believe me I’ve hunted every olive bar in every store I’ve shopped in.  Then you come to the fish, oh my, fish heaven,  Salted in bins, fresh on ice.  Clams, muscles and squids waiting to hit your pot.  The vendors would take insult if you didn’t try their wares before buying it.  A side note here, if you really want to learn about the country you are visiting, go where the locals go, shop where they shop and eat where they eat.

The reason I’m discussing “feel good foods” is because we really don’t put much thought into what we eat or even why we are eating it.  I have inflammation problems in my joints and sometimes the pain of it can be unbearable.  I began to notice that I had certain cravings depending on how I was feeling that day.  Some days when I’m feeling tired and run down I will want nothing but fruit.

Bad headache days I crave carbs like breads and pastas.  Days that I feel like I’m coming down with something, you know, that achey icky all over feeling, I want chicken soup (has to be homemade).   When my joints and muscles are flaring in pain, I crave fish and cheeses.  There have been some unexplained cravings too. Mustard, can’t seem to lather enough on a sandwich some days.  Then it could be cinnamon one day, I add it to my oatmeal, on my toast and even in my coffee through out the day.  Oh, and what’s up with my salad days, breakfast lunch and dinner.

This brings me back to my love of Italian food. I was looking into what foods are good for inflammation and the number one was Mediterranean foods.  I found a really great site for recipes at ‘Mediterranean Food’   lots to find and try.  I must be having inflammatory issues on a pretty regular basis if I listen to my cravings.

Maybe it’s time we all re-think the how and what we eat?  Are we ignoring our ancient instincts that play a role in our survival?  Apparently someone has already asked that question and in a 2003 article in the New York times by Bruce Grierson.  In the article it’s discussed that in the future we will be going to the doctor get a blood test and have our nutritional panel determined based on our DNA.  Full Article Here

Ignoring natural inclinations of what to eat in some cultures has caused major health damage. One example is on the Navajo reservation and possibly other native american cultures, diabetes is a number one health issue and in higher percentages then the surrounding cultures.  In Japan, obesity is becoming more and more common as they are introduced to the addictive western foods.  Many other cultures have developed major health issues when they are no longer eating their native foods.

So, next time you pick up that bagel with cream cheese on it, think about what is it that

your body is asking for.

Happy and healthy eating my friends,  Cheryl

What says ‘Comfort Food’ to you?
(polls)

Related articles

• Navajo Book on Food Terminology Promotes Healthy Eating, Bridges Native and Western Worlds (indiancountrytodaymedianetwork.com)
• What to Eat in Italy: 7 Personal Favorites (italylogue.com)

Getting Your Body Ready to Heal

    First of all, I must remind everyone reading this that I am not a doctor and I don’t promote any particular protocol or treatment. All I’m relaying to you here is what has worked for me and what I trust for my body. Always, always discuss your treatments and the decisions you make with your doctor or health care professional.

     I want everybody to make educated and informed decisions regarding their health. Mainstream medical will always dispute the use of supplements, herbs or holistic types of medical care. Western medicine is pretty much always in conflict with other practices. I’m striving to find a balance between both and the decisions I make regarding my care is a very personal one. At the end of the day, I decide what’s working for me based on how I’m feeling.

     I found out that I needed long term antibiotic treatment for a chronic bacterial infection. This infection went undiagnosed for so long that it had invaded my central nervous system, my brain, my joints and possibly other areas of my body. I had contracted 3 different diseases from the bite of fleas and ticks, Lyme disease, Ehrlichiosis and Epstein Barr Virus. Found out later that I also had Babesiosis.

     Debate rages on about treatments, causes and durations of vector borne illnesses which I will not dwell on here. This is about healing and caring for your body while fighting infection.

     Your doctor has just told you that you may need to take antibiotics for a minimum of a month to maybe several months. It’s very important to know that antibiotics will kill all bacteria, good and bad. Your intestines and skin are your first line of defense in keeping infections away and it’s a jungle out there with all the products that make claims to protect you. It can be very expensive during your learning curve. I made it a rule of thumb long ago to shop for the quality of the product, not the name brand.

First line of defense would be to find a good quality “probiotic”.

     I’m the type that even with a baby dose of antibiotics I get a yeast infection within just a few days. Yeast can not only be a genital infection or and oral infection (Thrush) but also a systemic infection, meaning in your blood. Read more Here about yeast infections and treatments.

     After trial and error I look for the highest number of ‘Live’ cells in capsule form or powder form (don’t worry about taste, it’s rather pleasant really and easily hid in food if you want to take it that way). The better ones can be found in the refrigerated section of you area health food store. You can’t over dose on it, though when I took too much it resulted in loose stools.

Foods to avoid while taking antibiotics (this applies to any dose, not just high dose antibiotics) .

Grains that contain Gluten, most particularly wheat.
Sugar.
Dairy products, except Keefer, yogurt, hard aged cheeses.

     Most diets I’ve found listed are for recovering from a yeast infection and say to avoid milk and cheese due to the sugars in it. fruit is also a no no. All of the ones I’ve read so far say to avoid Wheat at all cost. I’ve met people that have eaten the aged cheeses and yogurts and they have had no problems.

     What I would say would be to use your best judgement and follow the candida diet if needed. Hey, I did stumble onto a piece of info. I didn’t know about. There is also a connection to intestinal yeast over growth from eating fermented foods. I love pickles and sauerkraut darn!

     I have found that following the recommended diet for sufferers of celiac disease worked really well for me. Check out this site for some excellent information on diet and recipeshttp:/www.celiac.com/ .

Now that we’ve covered protecting ourselves from that nasty yeast infection we need to arm our selves with the right supplements for liver support. Your liver and kidneys filter the toxins produced from the die off of the bacteria you are killing with the antibiotics. See moreHere for how your liver works.  And click Here to read more about your kidneys     The only supplements I use for detoxing and liver support are Milk Thistle, Burbur extract and parsleyextract and drink plenty of pure filtered water. I also do “detoxing baths”, the basic one is 1-2 cups of Epsom saltsand 1-2 cups baking soda in a tub of very warm water. I soak for about 30min. This has helped quite a bit with deep muscle ache and nerve pain.  I have heard of peroxide being added too but haven’t tried it yet.During the time you take antibiotics you may experience the ‘Herxheimer’ Reaction and these soakings do help ease those symptoms.  Read more about the Herxheimer Reaction Here.

There is also a popular belief that you have to “Herx” to recover and that it’s normal to have repeated Herxheimer reactions during the course of treatment.  I personally have serious doubts about that and my doctor has me reduce the amount of antibiotics and increase my detox when it seems that I am “Herxing” more than I can tolerate.

A necessary reminder here that I can’t overstate, when using supplements start with the minimum dosage and increase if necessary BUT never exceed what the manufacturer recommends. Too much of a good thing can be dangerous and toxic to your system so listen to your body carefully and if in doubt talk with your doctor.

Also remember that everybody out there with advice has a different body than you do. You are unique and what others may swear by may not work for you. There is a certain amount of trial and error during your journey to better health so don’t get discouraged or overwhelmed by all the information out there. It’s best to start your new diet and get into the habit of drinking more fluids before you start taking your antibiotics.

     

This will help prepare you for the work of healing that is ahead. Read and learn everyday and share with others what’s working for you, keeping in mind our differences.

Wishing everyone out there a rapid journey to healing and a happy life.