Why I’ve Become That Crazy Lady At The Mall

I’ve become that crazy lady at the mall. The one that overhears your conversation and chimes in. Yes her. She is me. But, why dear God why have I become her?

Today I went shopping for a dress at Anthropologie to wear at an upcoming wedding. I’m not my best after the IV treatment, so I did a lot of “leaning.” I leaned on the clothing racks, on chairs, the walls and the counter at the cash register. Needless to say, I was leaning on the counter when I overheard a discussion about Lyme disease. The woman buying clothes had just been bit by a tick. She was talking about whether or not to go to the doctor. She’d just had a baby and was concerned about antibiotics getting into her breast milk. So, naturally, upon hearing this predicament, I became “the lady.”

I’m not super outgoing so it was a bit painful to interrupt their conversation without knowing the least bit about either of them. I’m sure I turned a nice bright magenta to go perfectly with the pinky golden dress I was buying.

I told her my story. Gave her a bunch of ILADS facts on rates of infection, subpar testing etc. I urged her to go to the doctor. It just so happened the woman working the cash register had a lot to say as well. Her boyfriend had Lyme … So it made me feel less nusto-pants.

From the look on her face … We scared the bajesus out of her. Note to self: Work on your delivery.

Moral of the story (because there always is one) … I’m proud to be the crazy lady at the mall. I’m not going to tattoo a Lyme awareness ribbon on my cleavage or anything, but I will give people the information that no one gave me. I don’t want you to suffer. At all.

And I might buy a green hat … with sparkles … to get into character next time.

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Taking Back My Nervous System with IV Rocephin

IV Rocephin Treatment for Lyme

I feel that I can safely say stage 1 of my treatment has come to a close. I managed a major recovery. I spent money on a yoga pass a few weeks ago, and have even ventured out on a few hikes on level ground.

That being said, I know I’m not in remission due to the ongoing neurological symptoms I still struggle with, as well as the occasional lung flares.

I had my first IV Rocephin treatment today, followed by a Meyer’s cocktail. I felt fine and dandy until a couple of hours ago. When I herx, all my symptoms come flying back as if I was never rid of them, which can be quite frustrating. My blood pressure is up, nerve and joint pain are at an all time high, in addition to muscle twitching and shortness of breath. I’m staring at the clock with a bunch of ice packs on my chest and arms. To fight Lyme, you have to brace yourself. The bugs don’t go down without a fight!!

Anyone reading this who might be losing hope, please don’t. I’m soooo much better than I was and you will be too. Everyone heals at their own pace. Herxing stinks … It just does … Any way you slice it. But just remember that you have to go down a couple flights of stairs to climb higher than you were before.

My Personal Treatment Plan

I believe in holistic healing of our BODY, MIND and SPIRIT. A delicate balance exists between these three aspects of “self.” When one is compromised the other two follow suit. That’s why it is of utmost importance that we address our overall wellness. Swallowing some antibiotics may give us some relief in the short-term, but will not offer total and complete healing. Lyme forces us to our knees, but it also offers us the opportunity to grow and re-examine the way we were living before illness struck.

I, for one, was moving at about 90 miles an hour through life. I would push myself in my job, in my studies and in my personal life. I thought that taking time for myself meant zoning out in front of the television while eating unhealthy treats to numb the stress. Self-esteem played a part too. I would push myself with voices of self-doubt and self-deprication in order to achieve my goals. If I wasn’t perfect, my world turned a horrific shade of grey (not the good “50 Shades” kind ; )).This drained my energy, making me more vulnerable to negative energy. I lacked a strong connection to spirit because of the earthly drama that hit me consistently like storm surges wearing away my core.

Looking back on my life, I’m not surprised I’ve struggled with illness. I continually invited it into my existence. Once it was there, I let it have power over me by fearing it, by identifying with it and by feeling defeated.

I created this healing plan to break that cycle. I have laid it out for you below. It’s sectioned into treatments for each aspect of self. Together they address my health in its entirety. I encourage you to construct your own, tailored to your own personal belief system. You will need to find a Lyme Literate Medical Doctor (and perhaps a naturopathic doctor too) in order to construct a treatment plan for your body. I am not a physician, so please do not use these medications if you are not under the care of a doctor.

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Source: Wikipedia
Source: Wikipedia

BODY

  • Acupuncture
    • This was the first therapy that brought me to a better level of functioning without any medication.
  • Antibiotics
    • To address all three forms of Lyme disease
      • Cell Wall Forms: Amoxicillin, IV Rocephin
      • Cystic Forms: Tindamax
      • Intracellular Location: Azithromycin
    • To address co-infection
      • Plaquenil
  • Herbs
    • Antimicrobial Herbs
      • Nutramedix – Samento
      • Beyond Balance – MC-BB-2 (moved up from MC-BB-1)
      • Beyond Balance – MC-PZ
    • Detox Support
      • Beyond Balance – CLA-K DETOX
      • Beyond Balance – IMN-R
      • Beyond Balance – TOX-EASE
    • Nervous System Support
      • Beyond Balance – CYFLACALM II
      • Stephania Root 
    • Reduce inflammation
      • Gaia – Olive Leaf Extract (huge life-saver!!!)
  • Homeopathic Medicine – BioResource Inc.
    • Nervous System Support
      • PSY-stabil (I swear by this stuff … if you are feeling anxious or nervous, this is great!)
    • Detox Support of Kidneys, Bladder and Urological Tract
      • RENELIX
    • Antitussive and expectorant for chest congestion
      • BRONCHI-PERTU
    • Lymphatic Drainage and Swollen Lymph
      • ITIRES
    • Stomach Support
      •  apo-STOM
    •  Kill Yeast
      • Candida Capsules 
    • Support of Excretion Processes
      • MUNDIPUR
  • Supplements
    • To break biofilms
      • Nutramedix – Serra Peptase
      •  Klaire Labs – Interfase Plus (also good for killing yeast)
    • To Aid Immune Functioning
      • Kind Organics – Prenatal Multivitamin 
      • Ester-C – Vitamin C 
      • Prescription – Vitamin D3
      • Researched Nutritionals – ATP FUEL
      • Researched Nutritionals – Transfer Factor Sensitive
      • Nordic Naturals – EPA EXTRA 
      • Klaire Labs – Endozin
      • Researched Nutritionals – Liposomal Glutathione 
    • To reduce inflammation
      • Pure Encapsulations – Curcumin
    • To reduce yeast
      • NutriBiotic – Grapefruit Seed Extract
    • Probiotics
      • Raw Probiotics – 200 Billion per day
  • Detoxification Methods
    • Far Infrared Sauna
      • 30 – 40 minutes a day (start slow)
      • I use a Finnleo sauna
    • Hyperbaric Oxygen Chamber  
      • 20 – 90 sessions total
      • Click FAQ for more information
    • Yoga or any form of exercise (if you can handle this … I know it’s hard)
    • Bemer Mat
      • 8 minutes two times per day
      • Click on their website for more information
    • Prescription medication – Cholestyramine
      • binds biotoxins
      • also great for mold issues
  • Diet 
    • Identify food allergies!!! Then stay far away from that food, even if your allergy is minor!
    • No sugar
      • I started with no fruit – then moved to one sweet fruit per day when I wasn’t flaring – my inflammation was greatly reduced after I did this
      • Lemons and limes are always allowed
      • I use stevia as sweetener – but start slow as it is a cyst buster so it can irritate you
      • No alcohol (I know … booooo!)
    • Reduced gluten and dairy products
      • I started with zero gluten and dairy, then I worked my way up so I knew what I could handle.
    • Juicing
      • I own a Breville
      • I juice kale, spinach, parsley, cilantro, carrots and lemons daily
    • Apple Cider Vinegar
      • Great for detox
      • 1 teaspoon to 1 tablespoon in water (work up slowly to see what you can handle)
      • Can add Stevia for flavor
      • Check out these drinks … they are allowed!
    • Coconut Oil and Milk
      • Good anti-microbials and anti-fungals
      • Cook with them
    • When I cheat and eat crap … because I do (and you will too) … I keep olive leaf extract on hand, which helps to reduce the inflammation when my infection inevitably flares up. Just a little trick.

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Source: society6
Source: society6

MIND

  • Mindfulness Based Stress Reduction 
    • There are courses all over the United States thanks to Jon Kabat-Zinn and his work at U Mass. I enrolled in a course at Duke University.
    • If you don’t have the money to enroll in the 8 week course, click here to take it for free online.
    • It helps to connect with others who also meditate. A great way to do this is through meetup.com.
  • Guided Meditations
  • Yoga
    • Calms my mind
    • I do it at home when I can’t make it to class
  • Interrupt Your Negative Thought Patterns
    • Meditation has helped me a lot with this
    • I try to do it in a nonjudgmental way – with self-acceptance and self-love
  • Sit Outside
    • I use natural settings to calm my mind
    • I take walks, sit in a chair under a tree, take trips to the beach … a little nature goes a long way
  • Positive Visualizations 
    • I try to envision myself in a completely healthy state as often as possible
    • I’ve made a vision board for my health and happiness by cutting up magazines and pictures. It was fun!

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Source: solpurpose
Source: solpurpose

SPIRIT

  • My Personal Mantra –> I AM WORTHY OF HEALING no matter what religion I study or spirituality I practice (or don’t practice, for that matter). I do not invite others to tell me otherwise.
  • Distance Yourself from Negativity  
    • I had to distance myself from friendships that brought negative energy into my life. It was hard, but by doing it I was able to invite more positive energy into my world for healing.
    • Things I remember:
      • I put my spiritual healing first.
      • Everyone is on a different life path, so not everyone will understand my situation.
      • It’s okay to protect myself through distance.
  • Yoga
    • I use this practice for body, mind and spirit.
    • This is a moving form of prayer for me.
    • The intention I set at every session is “to be totally and completely healed in body, mind and soul.”
  • Regular Prayer
    • I seek the guidance of God, my spirit guides and the angels regularly. If it’s not your bag, baby, don’t worry : ) There are many ways to pray.
  • Recommended Authors (for those interested)

Symptoms

My guess is that your symptoms are all over the map. Mine were. Dr. Richard Horowitz calls tick-borne illness a Multiple Systemic Infectious Disease Syndrome (MSIDS) for a reason: many of your bodily systems are affected. If you think you might have Lyme, look into it. Your doctor’s opinion that your aches, pains and discomforts are all in your head or due to “stress” (my personal favorite) are just that … an opinion.

The bull’s eye rash is not a make or break sign. According to ILADS, “Fewer than 50% of patients with Lyme recall any rash.”

Don’t make the mistake I did. Trust your body. Your problem may not be as elusive as you think. If many of these symptoms ring true for you, find a Lyme Literate Medical Doctor (LLMD). If you don’t know how to find one, email me. I will help you. Tick-borne illness is treatable. You can get your life back.

The following is an incredibly comprehensive list of symptoms given to me by a friend with Lyme. Take a look:

http://www.anapsid.org/lyme/symptoms/

I also suggest filling out the Horowitz Lyme – MSIDS Questionnaire. This will give you a sense of how likely you are to have Lyme. Don’t forget to look at the final page to tally up your score.

https://drive.google.com/file/d/0B9hqzwuTdy6kLWdQdHNIaHZTa2c/edit

Q&A on Hyperbaric Oxygen Therapy for Lyme Disease: My Personal Experience

What is hyperbaric oxygen therapy?

HBOT is a medical treatment in which a patient breathes one hundred percent oxygen in a pressurized chamber.

That sounds a little bit Star Trekky to me.

It is.

What does the pressurized chamber look like?

The one in the office I visited looks like a mini submarine. Different models exist, however. Some are transparent, human-sized tubes that remind me of what my guinea pig used to play around in as a kid. Some are so large that multiple people can kick back and get their oxygen fix together. Portable models can be found online too.

The chamber in which I receive my therapy has a small yoga-type mat, providing a little squish for my tush. I have enough room to sit up and move around. I’m able to change positions frequently.

So what exactly is a “pressurized chamber”?

A “pressurized chamber” is a place in which atmospheric pressure is increased.

I was not a good physics student. What is atmospheric pressure again?

National Geographic provides a great explanation: “The air around you has weight, and it presses against everything it touches. That pressure is called atmospheric pressure, or air pressure. It is the force exerted on a surface by the air above it as gravity pulls it to Earth.”

All the air above us right now is pressing down on us due to gravity. This pressure contributes to pushing air into our lungs and squeezing oxygen out into our bloodstream. When you climb a mountain, atmospheric pressure drops. Air is less dense the higher you go. In this situation, with a drop in pressure, less air is pushed into our lungs and less oxygen is squeezed into our bloodstream. This can result in that dizzy or nauseous feeling you get in high altitudes because your body is deprived of its normal oxygen level.

Okay, I think I get it. But, I thought you said that you are in a chamber with more pressure, not less.

You are right. Let’s flip this idea around now. What if you were in an area with higher atmospheric pressure than normal? You would get more oxygen, right? In this situation, a greater amount of oxygen would be pushed into your lungs, squeezed into your bloodstream and carried to your tissues.

And you just breathe air in the tank?

It’s not the regular air you breathe outside, comprised of only 21% oxygen. You actually breathe 100% oxygen in the tank. The purity of this oxygen combined with increased atmospheric pressure means you will be getting 10 times the regular amount of oxygen you breathe normally when you are in the chamber.

Do you use a mask in the tank to breathe the oxygen?

Some facilities use masks. My doctor’s office uses a real jazzy-looking hood. This is the model. Take a look: http://i.ytimg.com/vi/tfBDJIDtE9Q/maxresdefault.jpg

How do they get that on you? Is it uncomfortable?

When I went in the first time for a treatment they fit the hood to my head by cutting a hole in the rubber circular base, which feels a lot like a swim cap. They then squeezed the hole over my head. Once it was on, I looked at myself in the mirror (because I do this kind of stuff at the doctor). I decided it was a great look. Made me feel like an intergalactic explorer of sorts. We had to adjust my astronaut cap a few times because the rubber had a tight grip around my neck. It shouldn’t cut off circulation or feel extremely uncomfortable. Once it was fit correctly, it didn’t bother me at all.

The tubes in front are responsible for transporting air in and out of the hood. The oxygen comes into the hood from one plastic tube and the CO2—released upon exhalation—is carried out by the other. When the oxygen starts flowing the hood expands like a giant bubble.

I got it. You do all of this stuff to get a bunch of oxygen in your body. I’m still confused as to why this is used to treat Lyme disease?

This is an off-label use for hyperbaric oxygen therapy, but many Lyme patients have responded very positively to this form of treatment. The spirochete that causes Lyme disease is an anaerobic bacterium. This means that it cannot survive in an environment rich in oxygen. By increasing oxygen levels in your body, you will cause the bacteria to die. Additional benefits include repair of tissues damaged by the disease, and a boost to your immune functioning.

Sounds great. So you stopped your antibiotics right?

No. For me, this is a complimentary therapy. I make sure to continue my antibiotics and other medication as prescribed. Next week I will be receiving IV antibiotics right before I go into the hyperbaric oxygen chamber. This will help my tissues to absorb the medication.

Is the treatment expensive?

Yes. Your insurance may or may not cover it for you. Most facilities charge around 200$ per session out of pocket. In order for the treatment to be effective, you will need to do between 20 – 90 sessions. It really varies based on the patient. I gathered this information from various sources online (and the clinic where I receive my treatments).

That’s a lot of money. Do you think it’s going to be worth it for you?

I made the decision to try it based on the recovery stories I’ve read and listened to over the last year. Many individuals with Lyme attribute their remission to HBOT. I’m sure this isn’t the case for everyone, but I’m hopeful. Due to the fact that I received my diagnosis late in the game, have neurological symptoms and have at least one co-infection … my philosophy is to treat with all guns blazing. I’m comin’ in hot bacteria so watch your back.

Treatment for tick borne infection is expensive any way you slice it. My health, to me, is priceless. I’m going to treat and then worry about everything else later. I know that not everyone else can say that but I’m fortunate enough to have some support and I’ve only been in active treatment a little over six months (finances, I’m sure, look a lot different at six years).

Was the treatment uncomfortable for you?

I was incredibly nervous going into it. I’m a loony bird. I research everything to death, and then past death. I go through possible risks and then I imagine what my plan of attack might be if said risks were to actually occur. If you google HBOT you will read the risks. Your medical center will also make you sign your life away, but here’s the thing … I had a long chat with my doctor about all of the possible issues and what I took away from our conversation was that major issues from HBOT for Lyme are quite rare. She’s never had a patient that experienced any major medical issue as a result of the treatment.

In my clinic, they always check my ears before and after treatment to make sure they are okay with changes in pressure. Some people experience ear discomfort. If you are congested there are medications physicians can provide you in order to prevent ear pain. For me, my ears felt like I was sitting at the bottom of a pool in the deep end. I tried to move my jaw and pop my ears frequently, which helped. But overall, it didn’t really bother me that much. The nurse at my clinic changed the pressure in the chamber at a very slow rate, which allowed me to adjust smoothly.

My main issue was fear itself. In the tank you need to remain calm. I always get a little freaked in confined spaces. One time I had an MRI, and I remember having a panic attack even though I was listening to the Beach Boys (who panics while listening to Surfin’ Safari?). I found that meditative breathing followed by multiple games of Sudoku eased my anxiety tremendously. Once I got through my first session, I was much calmer. There was a small window in the chamber that the nurse looked through in order to communicate with me. We wrote notes back and forth to one another. She was so supportive.

After the treatments were over I had incredible exhaustion. Like can’t-keep-your- eyes-open exhaustion. I also experienced an increase in the feeling of vibration all over my body. I have yet to explain why. I will be going back to do more treatments consistently in the future, so I will update you when I get more data ; )

How long are you in the tank?

I’m in the tank about two hours. The first 30 minutes the tank’s pressure is increased. There’s an incredibly loud noise as gas flies into the chamber. Expect to be startled. I don’t have to wear the oxygen hood during this time. Once we reach the proper atmospheric pressure (usually between 2.5 – 3.0 ATMs depending on your clinic), I slide on my astronaut cap. I then hook both tubes to their outlets. I breathe pure oxygen in the inflated bubble for one full hour. Once I’m finished, I remove the hood and the nurse decreases the pressure over the course of another 30 minutes.

What do you do while you are in there?

I alternate between meditative breathing and Sudoku. Other activities you may want to try: reading a book, drawing or any form of paper-based entertainment. I’m not allowed to bring ipads or electronics in the chamber with me. Some centers do allow this though … depends where you go.

What if zombies attack the office staff while you are in the chamber? Are you stuck in there forever? I’ve heard it can be really dangerous if the pressure isn’t changed slowly … this is totally freaking me out right now.

If the zombiepocalpyse happens while you are in your treatment, do not be concerned. I take that back. Do be concerned, but not about being stuck in a pressurized chamber. There are controls within the chamber that medical professionals will show you how to operate in case of an emergency. You can let the air out yourself at a slow rate. Then you can face the zombies when you are at regular atmospheric pressure.

New Treatment for Lyme: Not Your Average Infection

Lyme isn’t your average bacterial infection, so treatment plans are usually only effective for so long. In addition, my doctor believes I’m suffering from at least one co-infection (aka another tick borne illness like babesia or bartonella). So our plan for now involves swapping the amoxicillin for plaquenil (a common treatment or preventative for malaria). I’ve taken this once before while traveling. I completely forgot the vivid dreams that come along with its consumption. I call them “technicolored hallucinations” because they are unlike the hazy scenes that normally accompany my sleep. While this could be a recipe for disaster, I’m lucky that my trippy slumber has only produced soul-pleasing entertainment with some top notch visuals. Last night I mentally visited various townhouses, only to discover that the ceilings were actually expansive galaxies: midnight purples and blues caked in sparkling stars … magnificent.

I’ve definitely herxed on this medication, with increasing amounts of pain in my joints. Herxes are always bitter sweet. I know that bad shit is dying, but my body usually takes a dive and I lose my regular functioning. My lungs seem to be less affected this time though, which is a bonus. I’m pretty jazzed that I can walk small amounts without huffing and puffing on other pedestrians in my path.

Due to my ongoing neurological issues, I will be starting IVs once weekly of Rocephin. My doctor will increase this IV treatment up to 2-3 times a week if I tolerate it. Then I will start back on the hyperbaric oxygen chamber. I will climb in right after my IVs to give the artful bacterial poos a real run for their money (P.S. I’m sorry I didn’t post more information on HBOT … I’m working on it right now).

With all this medication, I have frequent blood tests in order to make sure my liver and kidneys are functioning well. I’ve rocked all tests thus far! Yippee.

Dear Lyme, You Will Not Win.

Dear Lyme,

I did an hour long meditation last night. During the meditation I focused on my body and you, my disease, as separate entities. I envisioned my body as completely clean, free and healthy. I then envisioned you next to me, not inside of me. You floated freely, but I did not allow you to enter.

I rejected you. I rejected the notion that I am sick. I rejected my pain.

I embraced healing. I embraced my natural health. I embraced my functioning body.

As you know, I made the choice to jog today (some might call it walking while sweating profusely … whatever). I kept it up for 20 straight minutes, while I separated from you … flying further and further away from your negative energetic vortex. So you know, tomorrow I’m shooting for 21 minutes.

Yours truly.

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