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

Advertisements

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.

IMG_0665

A+ For Being Human

I broke down this morning. There are days when I feel like I know how to be sick, and there are other days when I suck at it.

Navigating the waters of chronic illness is like being taught how to sail, then blindfolded, then thrown out into some choppy ocean with no coast guard. How the hell are you supposed to get to shore? Let’s pretend there are people on your boat too, like family and friends, relying on you to make your way home. They’re not allowed to touch the boat, but when you don’t do a good job steering, they feel it.

There’s a lot of pressure. You might do okay for a little while. Say the storm dies down. You’re like “sweet … life is getting easier. I can breathe without medicine, my blood pressure is normalizing … etc etc.” But then you remember you’re still blind-folded so you don’t know what’s coming. And, damn it, it DOES still hurt … and, damn it, it’s still really hard.

You want to be the captain that everyone looks up to … like Captain Sully that landed the flight in the Hudson … or that Scottish sea captain from the 1800s that Walt Witman wrote about. “That captain is so inspirational. Look at what he was able to accomplish under such dire circumstances. What bravery.” That’s who you want to be.

But what if you aren’t? What if you just want to hide below deck and wait until your boat either capsizes or it magically floats to shore? Would you take credit if it serendipitously washed up on sand? “Oh yes. I always knew I would make a full recovery. I just didn’t know when it would happen, so I kept trying. I really did. I fought every day to get better, and now I’m here.”

Lie. I don’t fight every day. I am retreating today. And I’m posting this so my recovery is honest. I isolate. I’m a wuss, a scaredy cat, a ‘fraidy pants … The little aches and pains get me down because I know this isn’t over. Not yet.

There is no rule book for chronic illness. You don’t get a grade. If you did, I would definitely be failing right now. I’m wallowing, full of self-pity … which I hate, by the way. The worst part about self-pity is how much I (and I’m sure a lot of others) hate having it. But then it pops up, and you’re like … okay I can be A) authentic about it, honor it and release it (which is an arduous process) OR B) I could deny the crap out of it, stuff it, and wait for the feeling to subside (which ultimately doesn’t help in the long run). Either way, the pitying is happening, whether you like it or not. And it’s not attractive.

I make gratitude lists, I do silent meditation, I get up and clean the house, I do yoga, I focus on self-love and my love for others, I try to engage in a community of other Lyme peeps, I try positive visualizations, I pray, I chant, I treat my body to good food, I thank the universe for all of the blessings I have in the way of healthcare, of monetary benefits, of good friends …

Well guess-fucking what?

Sometimes all those things, and all of everyone’s suggestions, and all of your internal attempts … They. Don’t. Work.

I’m here to tell you that –> IT’S OKAY.

I’m giving myself (and anyone else that needs it) an “A+” for being human today. If I could, I would hand out stickers. Instead, I will post a ridiculous photo of myself in the hyperbaric oxygen chamber … because it’s priceless.

Navigating the waters of chronic illness in a hyperbaric oxygen chamber --> This is smiling after 2 hours of freaking out in that small claustrophobic tank.
Navigating the waters of chronic illness in a hyperbaric oxygen chamber –> This is me smiling after 2 hours of freaking out in that small claustrophobic tank.

Onward and Upward

The most beautiful gift life can give you is hope. Over the last few weeks my progress has been steady … I’m more hopeful now than I have been since my treatment began in November of 2014. I managed to spend time with my father checking out the art scene for the first time in Durham where I live. I took a flight to New York for my sister’s baby shower. Despite one day of muscle weakness, I had a fantastic time. I felt free!!! Finally, my mother came back to Durham with me, where I spent more afternoons outside of my townhouse. She had a horrific virus that I didn’t manage to get. So, GO IMMUNE SYSTEM!

For anyone interested, here’s how progress with Lyme has manifested for me:

  • My blood pressure–both systolic and diastolic–averages 10 points lower (20 points on good days)
  • My irregular heartbeat has disappeared
  • My joints are less painful
  • My thoughts are less cloudy
  • Surges of panic are few and far between
  • I’m not out of breath when I walk
  • The vibration in my body is less intense
  • Tinnitus is quieter
  • Lung pain has decreased
  • Myalgia is less intense
  • A few lymph nodes are smaller
  • Rare muscle twitching
  • Pressure in my head has decreased

It feels good to know that my body is still my own : )

Next week I will be heading into the hyberbaric oxygen chamber Monday – Thursday. Will provide details on the experience.

Two Steps Forward … Three Steps Back

Well the battle continues while sitting inside my townhouse for the 9 thousandth millionth day of treatment (just let me be dramatic). Apparently the progress you make will come back and bite you in the a%^. The medication helped some of my chest pain and started to lower my blood pressure, which is great. Today, however, I walked out my front door to give my dog a little entertainment only to discover that I can’t feel my left foot, thigh and part of my cheek (the one on my face … my tush is intact .. thank goodness). My first instinct was to pinch everything, which really got me nowhere. This led to panic (which I do a lot). Then, I realized that I’ve had this feeling before, just a lot less intense.

I wrote a few of my Lyme friends, and apparently this is par for the course. I feel like I’m regressing, but they counter that this could be the spirochetes hiding in my nervous system where there is less blood flow. I’ve got a lot of antibiotics in my system in addition to antimicrobial herbs, so perhaps they’ve taken cover. Neuroborreliosis is nothing new … but no one can prepare you for the fear when it manifests in some new way. I feel like the subject of some cruel science experiment. Signing out.