Thursday, September 18, 2014

Why It Takes So Long to Recover from Lyme Disease

Like everything with Lyme disease, recovery is slow and it's a fight in every phase.  I'm healing in layers, inch by inch and I can see progress across the years, not the days or weeks.  I continue to rife which I believe has kept me off of antibiotics since August of last year.   I continue to seek herbs and supplements to add to my protocol and to take things out that I no longer feel are helping me.

I started physical therapy a month ago thinking that I would be able to jump right in to a regular workout.  My mind still thinks I am the athlete I used to be but my body knows better.  After one set of arm raises I was exhausted and my back and arms burned.  I am once again reminded how sick I have been.  After an upper body workout I get sick and I believe it is die off from any bacteria that is still lingering deep in my joints and muscles.  My feeling is that when I went on i.v. antibiotics the drugs killed whatever bacteria was in the blood, but the rest of them ran for their lives burrowing into my joints and tissue.  I could feel them when it happened, it felt like bugs moving under my skin.  I have been told that is not possible, but I know what I felt.  The reason I'm still unwell is that the bacteria that burrowed deep into the tissue and formed cysts is now coming out and I am continuing to kill that off with the rife.

I'm doing another therapy called I.M.T (Integrative Manual Therapy) and find it is helping me on some level.  I'm not exactly sure how it works, and at this point in my healing have learned to just trust if something is making me feel better.   I feel calm after a session and the therapy has stopped two migraines from lasting their usual five days.  It also seems like it is helping my adrenals to re-balance. 

It takes so long to recover from "Lyme disease" because Lyme is just one part of the problem; there are co-infections to treat, any viruses that have now been unleashed, fungal infection (candida that may have already been present but exacerbated by antibiotic use), hormonal imbalances, thyroid and adrenal issues, mineral deficiency, heavy metal burden or toxicity and now food intolerance and chemical and environmental sensitivity.  This is not the case for most patients treated right away.  This is my story and the many patients who went months or years misdiagnosed or undiagnosed.  Left unchecked, the Lyme bacteria wreaked havoc on many other body systems.  Read Dr. Richard Horowitz's excellent book, "Why Can't I Get Better?" to understand more about this complex set of symptoms and disease. 

Personally it has taken me six years now to get to a place where I am feeling well more days than not.  I still have about ten days a month in which I am really unwell, sometimes I have a day or two in bed.  That is why recovery is slow and long; it is not a constant upward trajectory towards wellness and then one day it is gone.  It is an upward swing followed by a downward plunge, followed by another upward swing, followed by another low.  The mental gymnastics required to keep up with these unpredictable physical changes are exhausting on another level; I wake up feeling positive but by mid-day I'm aching and feverish so any plans for the day have to be cancelled.

I keep moving forward because I've learned there isn't really any other choice.  Even though the forward progress is maddeningly slow, it's progress in the right direction. 

Tuesday, February 25, 2014

The Skinny

There's this thing that people say and they think it's a compliment.  "You're so skinny!"  Often, it's not said in a tone like when you say to someone, "your hair looks awesome!"  I have found the skinny comment often comes with a snide tone and some judgement.   On the opposite side of that, it's not at all socially acceptable to say to someone, "you're so fat!"  Here's a thought on this; maybe we stop making it our business what other people look like.  The body's natural state is balance, so obviously an obese person or someone who is super skinny is probably not in a healthy, balanced place whether that is from physical illness, genetics, diet, emotional trauma or the result of trauma of any kind.  How do you know if the super skinny person isn't going through chemo?  Or maybe has experienced a bad break up or the death of a loved one or some other life stress that has caused them to lose their appetite?  How do you know if the obese person isn't sick, or hurt him/herself and can't exercise, or  is literally eating to heal their soul?

My weight has fluctuated a lot since college.  I'm 5'3" and in college weighed 145 lbs.  I thought I was fat.  Looking back I was just a college athlete who was in super great shape because I played field hockey and lacrosse and ran a lot.  I weighed more then because I was basically solid muscle and beer.  After college I lost about ten pounds and struggled for years to lose another ten, always thinking I was fat.  I started an acting career, moved to Los Angeles and lost another ten pounds.  I still thought I was fat.  I exercised often, pushing myself and pushing myself.  Along came adrenal fatigue, lyme disease and breast cancer.  Now I was losing weight at an alarming rate.  At my thinnest I was about to drop below 100 lbs and felt like I was literally wasting away.  I also felt the worst I had ever felt in my life.  Talk about a wake up call!  So I have been on both sides of the equation; looking at super skinny women and thinking, "look at that skinny chick, she's probably anorexic," (judgement on my part) and being told "look at you, ooh, you're so skinny, you need to eat something" (judgement on their part).

I'm proposing that if you need to say something to someone about their appearance, don't speak unless you can genuinely say, "You look so healthy.  You must take great care of yourself!"  Because that is really what it should be all about.   

Monday, February 10, 2014


I finished up 6 months of i.v. rocephin in August of last year.  I really think the i.v. antibiotics were a necessary part of my healing.  They got me to another layer of wellness and definitely made a difference with my brain and ability to focus and take in information.  I still have a hard time when I'm tired, but it's not like before where every day was miserable.  The down side of the i.v. antibiotics is that I had an E.R. visit because of my gallbladder.  I had been warned about this and knew it was a possibility, but it was still so scary when it happened.  I thought I was having a heart attack, because the gallbladder pain radiated into my chest.  My test results were "normal," ha!  The pain went away but I had to be super careful about dairy and fat intake (both of which can agitate the gallbladder).  I started taking something called Actigall as well while on the antibiotics.  But even after being off of the antibiotics for 6 months now, I still have to be careful with fat intake.

I saw a homeopath after I went off of the antibiotics.  He was amazing and so intuitive.  He gave me a remedy in his office that day.  I got really, really sick two times after that, but he had warned me I would.  There is no doubt that the homeopathic remedy he gave me drastically healed my gut.  It was expensive to see him but I feel like even if the only thing that disappeared were the painful stomach issues...totally worth it.  I really had to give over to his knowledge because I didn't fully understand how the remedy could work like that.  He gave me something called Lachesis Muta, otherwise known as snake venom.  The rule of homeopathy is "like heals like," and the way it works is if a particular remedy CAUSES a certain set of symptoms, then said remedy should HEAL those same symptoms.  There are other factors that come in to play that the educated and experienced homeopath uses to treat you.  I have learned so much about healing and my body in this journey. 

There was a follow up mammogram right before Christmas and I got the best present I could ask for.   A clean mammogram!!!  Now I have to go back in a couple of months for another one.  I've researched this though (having become an expert researcher because of lyme) and I think mammos and MRI's are not a good thing for me.  I have dense breasts and I have learned that with dense breasts mammos don't always pick up what's there.  I'm looking into thermography and other options for me.  It just doesn't make sense to me to continue to expose my already damaged breast tissue to radiation every 6 months as well as smushing it this way and that way during a mammo.  Seriously, somebody has got to find a better way.

I started using a rife machine about 3 months ago, a GB4000.  I think it's helping.  When people mentioned a rife machine to me when I was first sick I thought, "these people are CRAZY."  That will never be me.  But I have crossed over officially to all things alternative and now here I am.  This is the last frontier for me healing wise.  I have tried all of the other possibilities and I am still only about 80% of functioning.  I can still feel infection lurking in my joints and waiting to flare when I am tired or stressed.  I'm hoping with the rife machine I will finally be released from the lyme.   Here' s a link to learn more about rifeing and Dr. Royal Rife.  It requires it's own post!  Like all things lyme, the topic is controversial and there are people on both sides of the works/it doesn't work and is a scam.  The last thing sick people need is yet something else to fight over.  Sigh.