Sunday, August 22, 2010

The Semantics of Lyme

Yesterday I read an article online that at first pissed me off. I try to keep an open mind so I kept reading. By the end it only half pissed me off. The article is entitled  Another Perspective on Lyme Disease it was written by David Itkin, an infectious diseases doctor in Portsmouth.

In the first paragraph he defends the IDSA and their Lyme guidelines. Generally I would have stopped reading right there, but he also said that the guidelines work for the majority of his patients. I wanted to know about the minority and his opinion there.

Seeing as I know of thousands of chronic Lyme sufferers I’m going to have to say, “Sorry David, we aren’t that rare.” While it is hard for me to get over my bias of anything or anyone who says the IDSA got it right, I don’t think that Dr. Itkin is actually discrediting us or our illness. He isn’t the first person to say calling it Lyme disease isn’t accurate. Even chronic Lyme isn’t really telling the whole story.

How many infections do you have? How many imbalances? How many active viruses and bacteria unrelated to Lyme? Parasites, amoebas??? Lyme is only one piece of the illness we chronic sufferers are dealing with. Perhaps it was the catalyst, or the straw that broke the camels back but it isn’t our only problem, for many of us it isn’t even the most pressing problem.

It seems like Lyme is the common denominator, the thing that we all share, but after that our illnesses are all unique and vary greatly. Some of us suffer physical pain, some have more neurological symptoms. I have digestive problems, others have heart problems. In my personal case when it comes to treatment, actual Lyme disease has never been a major player. For me it has been Bartonella, viruses and bacteria unrelated to Lyme. Oh and I had those worms and amoebas to deal with too.

Dr Itkin says in his article; “I do believe that there is a true medical condition (or conditions) that we are currently unable to characterize…”

I can live with that. What I think he fails to acknowledge is that we call that condition, Chronic Lyme Disease. An accurate description or not, it has been given a name. Arguing semantics isn’t helping me or anyone else. Stop fighting about what it isn’t, we all know that it isn’t just Borrelia Burgdorferi.

There is a whole lot of Dr Itkin’s opinion that I don’t agree with. I give the patients a lot more credit than I feel he does. I don’t think that calling Lyme the carrot to the desperate is fair at all. My doctor’s were very upfront about the illness, the complications, and never once lead me to believe that I simply had Lyme and nothing else. In there opinion it is also an inaccurate name for the chronic illness I have.

My LLMD often talked about my autoimmune disorder more than Lyme disease. My current doctor is treating me because I am ill and we are working to build my immune system back up while attacking any bacteria, viruses or imbalance that arise.

I’m not very good when it comes to politics, but I don’t see how creating legislation to allow doctors to treat patients without fear of losing their medical license is a disservice to patients.

Dr Itkin fears that such legislation would lead to “cookie cutter” diagnosis and treatment. He says, “A compassionate provider may decide on a case-by-case basis that a patient deserves treatment that diverges from standard conventions. A law is not needed for this.”

I think he got that last part backwards. It appears that we do need a law to allow our providers to decide on a case-by-case basis that we need treatment that diverges from standard conventions. Without it we are in danger of only being allowed the IDSA “cookie cutter” diagnosis and treatment.

Originally posted by Ashley on Lymenaide

Wednesday, August 11, 2010

The New Super Mom?

Here I am about a half hour before my son's fifth birthday party (and no my house never looks this clean on a daily basis). Jumpy house was up and we were expecting about 40 guests. I'm washing fruit while Gentimycin drips into my arm via my PICC. I had also just taken a Vicodin because the Gentimycin gave me debilitating headaches and I couldn't take NSAIDs while on it.

I had also taken Ginseng and my daily low dose steroid to give me energy to get through the day, not to mention all the other oral antibiotics, natural anti-inflammatories, homeopathic tinctures, and vitamins that are part of daily regimen that keep me functioning.

I'm reminded of Alix's Ginger Rogers post about how she did everything Fred Astaire did, but she did it backwards and in high heels. That's about how if I feel sometimes if I compare myself to others. It takes a lot of pharmaceuticals and a Coke (I'm off caffeine and sugar so this is a real treat and buzz) to get me through a party. And it took me nearly a week to recover. But I did it. Not sure if that makes me crazy or the new breed of super-mom.

Sunday, August 8, 2010

Susanne's tips for feeding your gluten free family

It seems that one of the hallmarks of Lyme sufferers is having to struggle with multiple food sensitivities and chief among them is gluten. I've eaten a gluten free diet for well over ten years. But in the past several years I've discovered that my sons are gluten intolerant as well. While feeding myself had been challenging enough, feeding my kids gluten free was even more challenging. With school lunches, birthday parties, and social events, somehow I've had to figure out how to provide options for them that free them up to choose what their body needs while still engaging in everyday social activities. It's been hard! Here I share a few tips that have made this endeavor a little easier.

Breakfast on the go:
This Multi-grain waffle recipe from Ali of Whole Life Nutrition has made on the fly breakfasts possible. On Sunday mornings my husband and I make this recipe for our family. Today I made them while my husband went out and picked our blackberries. So we had waffles with fresh organic blackberries. Yum! And then there's always plenty left over to pop in the freezer for on the fly breakfasts throughout the week.

A sweet treat:
My gluten-free brownie recipe has way too much sugar but it's decadent and way too good for those glutenous eaters to turn their noses up. I make these and wrap them individually and put them in the freezer at school. Next time the birthday treats roll through the classroom there's a super yummy scrumptious treat in the freezer for the teacher to pull out for my son. He doesn't feel quite as deprived, after all their his favorite!

Pizza Pizza:
I think the hardest food for my boys to give up is pizza. Thankfully I found this super easy pizza crust mix from Namaste Foods that tastes soooooo good. For tips and pizza sauce recipe see my pizza blog post. I haven't taken the boys off dairy ... yet. So for now they get Mozarella cheese and I get goat cheese which tastes delightful by the way. But maybe we can get Kim to share her "cheese" recipe made from cashews, another great alternative to make this a dairy free treat as well. I make this usually once per week so I can tuck a pizza in my son's lunch for a little change from the usual.

Super packed on the fly nutrition for mom:
Green smoothies are the best invention ever. I feel so good when I drink these! I use it as a meal replacement or midday snack. It's a super fabulous way to load up on greens without having to eat a salad loaded with dressing.

My favorite green smoothie:
2 cups water
3 large handfuls spinach
1 apple or pear
dash of cinnamon
blend to smooth consistency with blender

Blender tip: after breaking two blenders in the first four months of smoothy making I broke down and purchased a Vitamix. Smoothies made with the Vitimix taste so much better than the ones made with others. It's now a necessity in my kitchen.

Another staple I can't live without:
I shared the recipe for Maple Granola in this blog post about Progurt. But it's worth mentioning again as it's a staple in my home. I make Maple granola usually once per week. It's fabulous to add on top of yogurt or eat for breakfast. I buy the gluten free oatmeal from Bob's Red Mill and get organic coconut shred in large pieces. Super crunchy and good for you too.

I highly recommend this cookbook from Whole Life Nutrition. It is packed with useful information and tried and true recipes. Also Ali's recipe blog is an invaluable resource.

I know we'd all love to hear what other tips you all have for living a gluten free life. So please share.

Friday, August 6, 2010

Tender loving care for Lymies

Thanks Ashley for your post on beauty care options for Lyme Beauties! One of the things I love about this blog is the ability to collaborate and share ideas and solutions. I thought I'd share a couple things as well. Since giving up personal hygiene products laden with chemicals over a year ago, I've been on a journey of non-stop experimenting. Here's my list of recently discovered chemical free favorites:

I use Pomegranate Seed Oil as a facial moisturizer. This stuff really is the bomb! I absolutely love it. I smooth it on my cheeks and over my eye lids. Yes it feels greasy but after five minutes it soaks in and my skin looks soft, vibrant, and full of moisture. The organic version from Mountain Rose Herbs is my favorite. Yes it's expensive but really does the job. Recently I've been experimenting with a concoction of Pomegranate Seed Oil, Rose Hip Seed Oil, Lavender essential oil, and Carrot Seed Extract. It's really kind of cool. I encourage everyone to experiment with the things they love! When you put something on your face it is so close and personal; you need to love the way it feels and smells. The pomegranate seed oil has an interesting nutty smell, that's why I started adding a few essential oils.

Also for my face, I created my own face soap and I've been enjoying using naturally good soap with no chemicals on my face. It's a real treat. This is just one example of my personal needs driving my product development. Pomegranate and Rain handmade facial cleansing soaps are available on my online store. Check out spirochick co-founder, Kim's review of my face soap.

For deoderant I found this Crystal Ally spray deodorant from Simply Divine Botanicals. I am so enthusiastic about this product, it's the first chemical free deodorant I've found that actually works! They also have one designed to encourage lymphatic drainage. Very cool products! Thank you Simply Divine Botanicals!

Also, I'm with Ashley on the salt scrubs. These are so easy and somewhat inexpensive to make, totally chemical free and super luxurious on your skin. Here's the link to my blog post on DIY Salt Scrubs.

Last but not the least important, everyday, multiple times per day I use my handmade soaps in the shower, at the bathroom sink, at the kitchen sink. I use it on my body, my face, my hands, and sometimes even my hair. And though I don't test my products on animals, our loyal family member, Chip, our chocolate Labrador, deserves the good stuff too! He most recently bathed in Lemongrass Poppy Seed Handcrafted Soap. I strive to make each of my soap recipes as organic as possible. I do not use any synthetic fragrances. I've found that the synthetic component of fragrance is what I'm allergic too. And I don't use dye. I regularly create over 20 varieties of all natural handmade soaps because everybody's a little different and needs something different and of course I just love creating something different all the time. Lymies you might consider the TLC Bar, tender loving care for skin and spirit. It's lightly scented with lavender essential oil and the olive oil in this soap is infused with calendula, known for it's gentle healing properties. $1 from the sale of each bar of soap is being donated to Turn the Corner Foundation. It's now on sale through August 10th.

Wednesday, August 4, 2010

Lyme Beauty

burt's bees carrot day creme 

My skin can be quite sensitive. Last year I was having a hard time finding body soap and lotion that didn't bother my skin.

I started using coconut oil instead of lotion. I even used it on my face. It worked really well but it left me super oily.

One day I splurged on a tub of chocolate scented body scrub. The stuff was heavenly! It smelled so good and it didn't bother my skin at all. The only problem was the price. It cost $15 per tub. A tub was only enough to last me three weeks.

One day I decided I was going to learn to make my own. It is so easy and it does work out cheaper. There are 100's of "recipes" online.

My favorite part about these scrubs is that they moisturize as well as exfoliate. I have really dry skin but using a scrub like this, I don't ever need to use body lotion. That is another cost saving point for the scrubs.

Homemade scrubs are a great option for sensitive skin or people with MCS, multiple chemical sensitivities. You can pick your own ingredients based on your sensitivities. Your scrub won't have any of the harsh ingredients found in most soaps and lotions.

I posted a tutorial for my body scrub on my blog Upcycled by Ash-

I love the scrubs, obviously, but there are a lot of other products I have discovered that have made a big difference to my Lyme Beauty Regime.

My other favorite "beauty" products-

Doc Bronner's Magic Soaps I have actually used these since I was a kid. I love the peppermint all in one soap best. I use it as body soap in the shower and as hand soap in the bathroom and kitchen. I fill a spray or pump bottle half full with water and half with the soap. It is still plenty sudsy and the bottle lasts 2-3 times longer, good value!

Dr Hauschka Shampoo and Conditioner My favorite shampoo and conditioner ever. It isn't cheap but it is good stuff!  100% solved my dry brittle hair problems.

Burt's Bees Carrot Day Creme Most face lotions contain too much aloe. My face turns bright red if I use an aloe based lotion. If it isn't the aloe, it's the perfume. The Carrot Day Creme is a nice think lotion, it does have a noticeable scent but it isn't perfumey. As an added bonus the carrot adds some color to my face! The lotion does contain aloe but it is one of the last ingredients.

Tom's of Maine Calendula Deodorant We had a friend who died of Breast Cancer when she was 26. One thing she asked all of us was to stop using deodorants that contained aluminum. After trying, I don't even know how many that didn't do anything, I finally found this one. It works and it doesn't bother my pits.

BugBand Insect Repellent Bug spray in general makes me gag. It isn't easy to find a "natural" Deet free option that specifically says it repels ticks,this one does. It still smells strong, but it is essential oils instead of chemicals and synthetic fragrance. You do have to apply it on a regular basis though, it's magic effects won't last all evening with just one application.

The next two are very personal products, but someone has to share them- 

Weleda Calendula Diaper Care My sister has a baby and this is her favorite diaper creme. I don't have any kids, but I discovered in a moment of desperation that this stuff works great for feminine dryness/vaginitis. Don't ask.

Sensuous Beauty Love Balm Forget irritating petroleum based KY Jelly. Love Balm is sooooo much better!

OK, now I'm a little embarrassed but I'll survive.

None of these products or brands have paid me, sent me samples or asked me to do a review. I just wanted to share with you some of the products that have made my sensitive life a little better. That said, just because these products work for me does not mean they will necessarily work for everyone. Make sure to read the labels to check for allergens and take it slow when introducing new beauty products to sensitive bodies.

What are some of the best products you have found
that work for your sensitive selves?