2 New Videos: Herxing & Detoxing ❘ Coinfections

The past few weeks have been insanely busy with the holidays. I’ve been busy in a way I didn’t know I could be. I didn’t know I had it in me to shop, and wrap, and ship gifts but I’ve done it! And I found the time (although YouTube definitely didn’t make it easy on me) to make two new videos for December. So, 3 days and 4 headaches later (thanks again YouTube) both videos uploaded. The subjects being two that were very popular on the Lyme Chick Facebook page & emails:

Herxing & Detoxing and Coinfections

Enjoy. And Happy Holidays! XXO ☃

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Burden of the Truth: Lyme Photography

It dawned on me yesterday that sometimes words aren’t enough to express what we go through. Words can easily fall short of the hell we endure. Words can fall on deaf ears. Images aren’t quite as easy to ignore. And that was the inspiration behind my new Lyme photography series. It seemed natural to combine two of my passions, photography and Lyme advocacy.

These are the first photographs in the new series.

 

©Lyme Chick 2o11. All Rights Reserved.

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Lyme Chick’s Guide to: Looking Less Zombie & More Human

Here’s a little something I hope all Lyme Chicks will appreciate! These products have helped me on the days I look truly scary & at death’s door. They’re super easy, quick, and make-up-free-fixes because most days, makeup and the effort it entails is totally out of the question for me!

1. Stay hydrated

Staying hydrated is absolutely crucial for Lyme patients anyway. It’s essential to detoxing, pushing toxins through, and overall balance as our bodies are, on average, 60% water. But its benefits can also immediately be seen in your skin, eliminating dullness and dryness. I drink about 64 oz of water daily. In my opinion, it’s absolutely vital for accompanying any Lyme treatment. And has the added benefit of skin-brightening… so drink up!

2. Fake an 8 Hours Rest

My eyes seemed to be prone to puffiness and dark circles before I even knew of Lyme, but over the past 2 years the zombie circles have been exacerbated beyond belief and I’m constantly on the hunt for products that might give the illusion that I’ve gotten a full 8 hours (or that I’m not chronically ill) I’ve tried everything under the sun, but Kiehl’s Midnight Recovery Eye which I apply before bed, in combination with their Facial Fuel Eye De-Puffer really has done an incredible job of helping the dark circles! *Please Note: I am not endorsing Kiehl’s nor am I affiliated with the company, just a recent fan. There are many similar, fabulous, less expensive drugstore products that work nicely as well!

3. Quench that inevitably dry skin!

My skin has become even more sensitive as well as dry since Lyme. It’s pretty ridiculous, it breaks out in a rash if you look at it the wrong way. My lips in particular are ALWAYS dry. I put lip balm on 10x in an hour, easily. Regularly moisturizing your skin and lips is an easy, effortless step to looking rosier and healthier.

4. Dry Shampoo

Dry shampoo is seriously my best friend. (right after Zofran!) It is an absolute lifesaver on days when a shower is out of the question. It’s intended to be a quick fix, so don’t expect the results to last for days. But for those emergencies when a doctors appointment or an outing is looming- spritz this on and go. It’s a match made in Lyme Chick heaven.

5. Toner

Toner is lovely, in that it’s a super quick method to cleansing your face. Especially when not near a sink or too sick to get out of bed. It comes in handy under many circumstances, particularly when I was in the hospital, a swipe of toner refreshed me and made me feel a little less guilty about being unable to wash my face. An added bonus is choosing one with a soothing scent, I like rose and lavender.

So consider giving these a try the next time the mirror scares you… but on the days you can’t, be sure to own your appearance, whatever it may be that day. This is (temporarily) a part of what makes you you. And Lyme Chicks are fearless fighters. The first priority always being, kicking this!

XOXO

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New Video & Lessons from the Hospital

This is a long post- filled with my latest Lyme adventure. Feel free to skip to the bottom and just watch the video but if you’re anything like me and frequent the ER often, this might prove useful knowledge to have in your arsenal. 

November was quite the month for me. Some of it was fantastic and wonderful with beautiful weather and decent days where I was able to leave the house. And then smack dab in the middle of the month, literally, on the 15th, things turned dark.

There was more in store for me this month than sunshine and pain-free days. Although I’m still grateful and appreciative of those too!

Sunday the 13th at midnight I doubled over in excruciating pain. My lower right abdomen was searing with pain so intense that moving and even the inevitable car ride to the ER was out of the question. I tried to sleep unsuccessfully but by Monday I was back in what has become a very familiar setting, the ER.

I was tested and tested, poked and prodded, cold, scared, and in the most pain I had ever experienced. At the end of the night, there were still no answers. I had no telltale signs or symptoms of appendicitis, aside from the pain. My white blood count wasn’t high and as far as they could tell my appendix wasn’t inflamed. An ultrasound revealed two ovarian cysts on my left ovary but none on my right… still no explanation of the excruciating pain.

I was admitted Monday the 14th and told the surgeon would come sometime in the morning. I wasn’t allowed pain killers in case the pain were to become severe enough to indicate a ruptured appendix.  I wasn’t allowed food or water, which was bearable because I didn’t have an appetite, but it was adding to my overall weakness. It was misery waiting for the surgeon to show his face.

10 AM Tuesday morning, the surgeon finally appeared. It sounded promising at first, he assured me I would operated on that day but made it clear that I wasn’t anywhere near the top of the list. He had many surgeries lined up and I would be fit in somewhere.

Agony. The waiting had become too much. I was sleep deprived, in piercing unrelenting pain, not allowed painkillers, food, or water. And waiting 18 hours for what is supposed to be an emergency surgery? This is where my lesson to you comes in to play, listen up:

Should you ever find yourself in a similar situation, in the hospital too weak and broken down to speak up for what you need. PLEASE do these two things for yourself.

1) Never be afraid to voice what you need.

I learned this the hard way. I’m in the habit of keeping quiet and suffering in silence. Of smiling through pain and making things easy on others. This is stupid and can be very, very destructive. If you’re in the hospital, chances are the stakes are very high. You need to be thinking of yourself and only yourself. You need to be selfish under these circumstances. This is your life and your health and you know best what you need. It wasn’t until I started screaming and crying 18 hours into my stay that I was listened to. But even that wasn’t enough- and this is where my other lesson comes in, and this is absolutely crucial.

2) Have an advocate.

Even pleading and crying for the surgery to be moved up, in the fear that my appendix would rupture wasn’t enough. And this is why I’m so beyond thankful for my advocate, my mom. She did everything I couldn’t and probably wouldn’t. She got in the nurse’s faces and called everyone she knew with connections to the hospital. She spoke up for me in a way I never could of, and guess what? The surgery was moved up immediately. I was taken to the OR 4 hours before the scheduled time. If there’s one thing you ever hear me on, please let it be this. Always have an advocate with you in the hospital. Someone whom you love and trust to speak up for you when you are unable. It absolutely makes all the difference in the world. Thank you Mom!

And… with that here is the new What to Expect video. You guessed it, the topic being appendectomies. This is a little late for the month of November but this is meant to be November’s second WTE video. There will be two more for the month of December so please keep the ideas coming! Email videos@lymechick.com for video suggestions.

XOXO

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Author of ‘Nature’s Dirty Needle’ Shares Her Story

I am a Nurse Practitioner. Three years ago I was working for an integrative doc who discovered her daughter had Lyme disease. She decided to begin treating it and spent a few weeks with some LLMD’s. Anything that she did I needed to learn as well so I dove in to learning, listened to ILADS workshops and studied power points and read what I could find. Needless to say I was stunned by the politics and the horrific marginializing that our current system has done to CLD people. I eventually left this practice and moved to Gordon Medical and began what I call grad school for CLD and other biotoxin illnesses. Then about 1 1/2 years ago I discovered that Amanda, my daughter, had CLD and probably for over 20 years with activated disease. She fell full blast into being gravely ill and our journey began in earnest on Sept. 26, 2010 when we went to the ER for the first time for unrelenting vomiting and dehydration. Since that first visit to the ER we have been an additional 16 times, with 7 inpatient admissions as well. We tried different hospitals but they were all the same. It matters who the doctor is how you are received.

It was on the 7th trip to the ER that I realized that Amanda was not going to get any support or treatment for her illness. All they would do is get the vomiting under control and give her IV meds for a few days until she could take oral food and fluid. No antibiotics, and no diagnostic work up after the initial CT scans and labs. As with most people with this disease, Amanda’s tests were all negative. One doctor wanted to diagnose Fibromyalgia, another Rheumatoid Arthritis, and most just saw Amanda as a psych case and me as a drug seeking and interfering Mom. One doctor asked me if we had followed up with a Psychiatrist yet as that would be the best route, and this while Amanda was vomiting and in so much pain she was delirious. Twice she was given only 2 liters of fluid when she needed at least 4-5, and we ended up back in the ER the next day. Some would refuse to give her narcotic even though she was on an around the clock dose of Morphine for her pain and had gotten no medicine for several hours because of the vomiting. This would make her symptoms worse!

I then knew that what was needed was a center where those with tick borne disease could go for treatment and support in a compassionate setting and get care as if they were in a hospital with 24/7 nursing care and other support. I began talking to friends about Inanna House and how I envisioned it. One friend told me I needed to write a book so that I would have some clout as I presented a business plan to those with the resources to fund the center. So I wrote ‘Nature’s Dirty Needle’ and got the idea of describing what it is like for those with Lyme , their families and friends, and how it impacted their lives on all levels. I wanted the book to be a resource for those still undiagnosed and family members who did not believe their loved one, thinking it is all in their head. To read story after story with so many similarities brings home the reality ofChronic Lyme Disease and how devastating it is for everyone concerned.

I have been asked many times to do another book with more stories so after Inanna House is complete I plan to do that and include all the success stories we will have to tell.

Inanna House will be a place of hope, healing, and peace. I envision a retreat like setting in the country, private rooms, safe pathways for walking, a pool and hot tubs, an infrared sauna, energy treatments, IV treatments, protocols for IV antibiotic treatment, a detox program, clean food, and emotional support. Part of healing from these infections is dealing with any traumas and hurts that are impeding recovery. The mental, psychological, emotional and spiritual aspects need addressing and this will be a part of the program. I plan to have an endowment so those who have depleted their resources can still come and experience healing. The best of all worlds of medicine will be incorporated into the program.

Inanna House will have MD supervision. There will be treatment rooms, a clinic, and room for conferences and classes. I hope to be able to offer residencies for health care professionals so we can increase the number of Lyme literate providers. I hope to use the clinical data we collect to further prove to the nonbelievers that we aren’t crazy and these infections do indeed exist in epidemic proportions. And to offer a place where we can create inpatient treatment guidelines that serve the Lyme population.

Currently, we are treating Amanda at home. We give her IV hydration everyday, and include amino acids and minerals, and Phosphytidal Choline which helps to bind the die-off and toxins and clean cellular debris, helping the liver to function better. I wanted to give her IV Vitamin C and B but it made her vomit so I had to stop for now. We are giving her meds around the clock every 4 hours. Her pain with the Herxing is incredible but after 14 doses of Gentamycin for Bartonella her eyes are more clear, her brain is more sharp, and her nausea is better. She is encouraged that we are moving forward. We are doing this at home as the hospital won’t do it because they don’t believe she has an infection and they fear the liability. Shameful!

This must change. It is my wish that this will shine more light on this issue and change how the current system views these infections.

Thank you, Mara

Mara Williams, ANP

Buy Nature’s Needle

Nature’s Dirty Needle on Facebook

Mara Williams’ Blog

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Introducing What to Expect: A New Series on Lyme Chick

I’m very excited to announce a new series here on Lyme Chick! I’m starting What to Expect videos, 2x monthly.

The videos will hopefully provide helpful, and informative insight into questions you, the readers would like to explore, and topics you’d like me to cover.

My hope is that I can offer comfort and shed light on any seemingly daunting experiences I’ve gone through and also address whatever is on your mind!

For video suggestions please email: lymechick@lymechick.com

OR

You can suggest video ideas on the Lyme Chick Facebook Page

So, here is the first What to Expect video! Focusing on what to expect before, during, and after PICC Line Insertion.

WHAT TO EXPECT: PICC Line Insertion

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No, really. Please believe me.

This week I’d been having a particularly bad spell. My joints were more painful than usual and very swollen which never used to accompany the joint paint. My migraine, now on day three, had gotten to that phase where sitting up or even thinking about standing made my skull throb and feel like it was going to explode.

My neck felt like it could no longer hold the weight of my head. I was struggling.

I wanted to have some blood-work done to see what, if anything, was causing this new flare in symptoms. I was writing my doctor to ask what tests to run. I wanted my SED rate checked to see if the level of inflammation in my body was as high as it felt. Because if it resembled anything close to the misery I was feeling, I was thinking (hoping) the blood-work would reflect that.

It didn’t take long to realize what a crazy thought that was… Was I really just hoping, no, wishing my blood-work would come back with poor results!? Yes. And I’m not afraid to admit that. As a Lyme patient I am so hypersensitive to blood tests not reflecting my illness, my real, chronic, debilitating illness. Because I’ve been told over and over by so many, that my tests were indeterminate, or my blood results were ‘fine’ or heard, “We just can’t find anything wrong with you!” or, “You’re a medical mystery, sweetheart.”

As patients of Lyme it’s become a reflex for most of us to be on the defense 24/7. “No, really I’m sick.” “Yes I know what that person told you but this is real” or sheepishly repeating “Lyme Disease” to the ER doctor standing over your stretcher, indignantly standing his ground that such a diagnosis doesn’t exist, and therefor you must be crazy. An unspoken shame I’ve become accustomed to.

My symptoms are as real as the chronic disease that has caused them. My pain is as legitimate as anyone else’s… So why do I still feel like I need justification? Why do I still want tangible results to validate the way I feel?

Because, Lyme Warriors, this is as much a symptom of this disease as the joint pain and the brain fog; the relentless need we feel to prove we are sick.

Please always remember how strong you are. And that fighting this fight, is something to be proud of.

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Migraines/Tension headaches?

I wish I had an incredible cure for migraines… but in the meantime, lets take a poll.

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Poll Mondays!

I’m starting a tradition here at LymeChick! Mondays are now Poll day’s. Poll’s are helpful in gathering info and I also think it’s a fantastic way for all of us to see how common our symptoms are within this Lyme world.

And that on the days you feel most alone (which we all have plenty of) and you think you’re the only one who could possibly be too weak to crawl to the bathroom, or that the extreme pain in your right knee that stops when you stand up but throbs when you lie down is bizarre and uncommon… Well, lovely Lyme Chicks and (non-chicks) you’re not alone.

With that, here is the first poll. You might have seen me whining on facebook and twitter that my insomnia is relentless lately. I often ask myself and by often I mean at 4AM when I’m staring at the clock and everyone else in the house is asleep… Am I the only one up right now?! Is this Insomnia going to ever leave me alone? And when the sun comes up and I finally feel justified in leaving my bed, I can see those deep dark bags have made themselves at home under my eyes. (You can imagine this is one of the most distressing parts!) 😛

I know I’m not alone in this, but lets take a poll!

XOXO

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Wellsphere ‘This is Me’ Video Contest

The lovely wellsphere site had a fabulous idea of the ‘This is Me’ video contest for the month of September, asking patients affected with any health issues to post videos explaining their health journey and what it’s like living with their illness.

The videos posted so far (the deadline is September 30th) are fabulous with diseases ranging from OCD to cancer.

I decided Lyme needed to be represented so I put together a short video of my story this far.

Hope you enjoy it! And be sure to check out the other fantastic videos at Health Central’s YouTube page.

 

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