Are You Grieving for Your Lost Health?

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When I was feeling my worst, I was doing all I could just to keep my head above water.  I went into crisis mode.  On top of feeling terrible and being exhausted all of the time, I really had no idea what was causing my flares of pericarditis.  So I was living in fear.  I was afraid that I would walk too much and have chest pain again.  I was afraid that too much stress from school and home life would cause me to flare.  I never knew when or where I would be when I’d flare and it made me feel paranoid.  I always had to be prepared, so I routinely kept my prescription of prednisone in my bag in case I needed a higher dose.

I was talking with a good friend of mine the other night who is currently living this reality.  He doesn’t have pericarditis, but his illness is no less mysterious or maddening.  In talking with him, I was reminded of a counselor I saw during nursing school.  She was in training to become a licensed counselor, and she had an office on campus at the community college I was attending.  I remember time and again going in and talking with her and just voicing my frustrations with the way that my whole world had been suddenly turned upside down.  I spoke of my fears and the unpredictability of my illness.  I spoke of not recognizing my own body, because I had gained so much weight from being on steroids.  I spoke of my dismay that after a year of struggling with recurrent bouts of pericarditis and even a second hospitalization, that none of my doctors could offer me any answers.  All they could tell me to do was to take prednsione to suppress my immune system and prevent the inflammation around my heart.  One day, as I was really struggling, I went to talk to my counselor.  She pointed out the fact that I was grieving my lost health.  It was a light bulb moment for me, because I had never thought about it like that before.  She was right.  I WAS grieving for my lost health.  My mind was having a hard time accepting my new body and the restrictions that came with it.  It was difficult to wrap my brain around the fact that I had been healthy, had exercised regularly as part of my work, and had eaten healthy as a long-time vegetarian.

When I realized that I was grieving, and my counselor went over the stages of grief with me, oddly enough, I felt a great sense of peace come over me.  It made me feel normal about how I was feeling.  I could see that the ups and downs of anger and sadness and back around again were part of my grieving process.  Knowing this allowed me to release expectations I had for my emotions through this time.  I began to accept my emotions, and I was more open to allowing them to flow.

So I ask you, the one dealing chronic illness, are you grieving for your lost health?  Are you grieving for the life you feel that you have lost?  If so, know that it is normal and OK, and that it is better to feel your emotions and release them as they come up than it is to keep them locked tight inside your chest.  We sometimes think that we’re doing ourselves a service by locking our emotions up so that they can’t spring out and consume our hearts, but the reality is that if we allow ourselves to feel our feelings as they come up, in whatever form they appear, we will be able to heal much more quickly.  Emotions that aren’t expressed get trapped in our bodies and lead to more pain and dis-ease.

It was the most challenging time of my life.  I felt so alone and helpless.  I looked for silver linings as best I could and I pushed through my exhaustion so that I could be present for my son.  I wondered if I would ever regain my health. I wondered if I would ever feel comfortable in my own body again. I wondered if I would always have to be fearful that things I did might cause a flare.

I write this on the other side.  I have gained perspective on life and on my health challenges that I would not have gotten had I never gotten sick.  I have experienced a total transformation of self that was brought on by my years of illness.  I was asked to take a more balanced approach in caring for my body, mind, and soul.  I was asked to tear down the beliefs I held about myself and my life that made me feel bad.  I was asked to reexamine the way I was treating myself and how I was showing up for myself.  My illness caused me to turn over every rock so that I could find all of buried thoughts and beliefs that were holding me back in life.  I was shown what was important in life.  I was taught to not sweat the small stuff and to appreciate everything and everyone I have in my life while I have them.  I was taught the delicate nature of life.  I was taught that there are no guarantees in life and so we should make the most of every day.  What is it that you might learn from your own challenges?  It helps me to look for lessons in challenges now, because I see how perfectly my illness was placed in my path to expand me to heights I didn’t know were possible.  It has made me trust the process now when things aren’t going the way my mind wants them to go.  Even when I can’t see the full picture as to why something is happening, I live with a great sense of trust that the Universe always has my back.  The Universe (or god, source, higher power etc) always has your back too.

Above all, I was taught that self-love is the key to life.  The love we hold for ourselves trickles outwards from us, so that we can love each other in a more balanced, non-judgmental and unconditional way.  How much do you love yourself?  Do you find ways to show yourself love every day?  Self-love involves loving all parts of ourselves.  That can be the tricky part.  It’s easy to love myself when I am happy and laughing.  I have a more difficult time loving myself when I lose my temper or raise my voice in anger.  I am learning and growing just as we all are.  We’re all works in progress, and that process never stops.  We just keep expanding.  We keep learning how to respond to life vs react.  We keep learning to keep an open mind and open heart with how we approach ourselves and others.

If you’re reading this, you survived another day.  Just keep being gentle with yourself in whatever life circumstance you’re in currently.  Your illness may be requiring that you slow down for now, get the extra sleep, limit the stressors in your life, give yourself some extra love, and put yourself first for a change.  Can you see the ways that your body is crying out for more love?  Notice the shift when you view your own illness this way.  When we take care of others when they are sick, we don’t get mad at them and their bodies for needing more care, right?  We don’t curse at our friends and family and make them feel guilty for being sick.  So then, why do we treat ourselves that way?

I went from a time when I was really ill and wondering “why me?” to now when I realize that facing a complicated illness like Lyme Disease and not just surviving it, but thriving beyond it is one of my superpowers in this life.  This is why we humans must be careful with the labels that we place on things, because sometimes it is difficult to know “good” from “bad” when we’re in the thick of it.  I’ve said it before, but I went from calling my illness “the worst thing that ever happened to me” to “one of the best things that has ever happened to me.”

Know that it might take more love and care than you have ever allowed for yourself before, but that we can all rise up above our challenges and see brighter days ahead!

Part of my soul’s purpose is to help others navigate through their own illnesses and challenges in life using  the perspective I’ve gained.  If you’d like some personalized support and guidance, reach out to me at peacefuljellyfish@gmail.com!  My favorite thing is combining the healing power of Intuitive Reiki with Joy Coaching to help others move through their chronic illness with more support than I had during my own healing journey.

Thanks so much for reading!  If you enjoyed this post, please like and share it! Much love!

Watch the video for Michael Franti’s song “Once a Day” HERE  This is what Michael Franti posts about this song:

“‘Once A Day’ is about unexpected moments in life. Some days we have unexpectedly beautiful moments and others that are unexpectedly challenging. Last year I had a really challenging moment when my son was diagnosed with a kidney disease called FSGS (Focal Segmental Glomerulosclerosis). We thought it would break our family apart, but moving through the initial tears, made us realize life is precious and that we need to hug, kiss and be close to each other every day and through that we could ‘rise up’ and face his illness together. I hope that Once A Day brings inspiration to anyone in this world who is going through challenging times. Through music, dance and gratitude for this life we can all ‘Rise Up’!” –Michael Franti

The Plague of Fear

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We have a problem.  We have a big, gigantic problem in this country right now (well, we have more than one, but I’m writing a blog post, not a novel).  Fear.  Fear comes in a lot of different forms.  Some of it is founded, because of things that have happened in our past, like the shooting in Vegas.  But some of our fears are not founded.  Some of our fears may have been passed down to us from our immediate families, or ancestors.  Some fears are created in our minds and have no logical foundation.  But because many of us still believe what our minds tell us, we believe every fearful thought that our minds create.

Lately, when I have talked about going hiking alone, people have asked me things like “aren’t you scared to be out there alone?” and “do you carry a gun?”   Honestly, the thought has never crossed my mind once. And I’m not even sure what I would be protecting myself from on the trail. Animals? Black bears? Mountain lions? Black bears are generally not aggressive. And if a mountain lion decides to attack me, I’ll never even see it coming.  I’ve never understood why anyone thinks that we’ll all be safer if we’re walking around carrying guns to protect ourselves.  If people weren’t carrying guns around, what exactly would we need to protect ourselves from??!  In my experience, while I have encountered wildlife such as grizzly bears, black bears, and mountain lions when I have been hiking for work and leisure, I have never been as scared of any wild animal in the way that I am afraid of a human who carries a gun.  The people who I have met out hiking on the trails have been some of the kindest souls, and I have never feared any of them.  What I do fear in those wild settings is another person who decides to carry a gun because he or she is afraid.  Generally, the trails are filled with good people out to enjoy nature and/or escape all the people in the cities walking around carrying guns. So, where does all of this fear come from? Guns aren’t going to fix anything. At all. Ever.  So, unless you hunt as a means to get food for you and your family, or you’re in the back country of Alaska where the ratio of grizzly bears to humans is high, I see no place for guns in nature.  As a woman, I am MUCH more afraid to walk around a city at night by myself than I ever am when I am out hiking.  And part of that is related to guns and the rising amount of gun violence in this country.

I know that people who favor being able to have guns see the issue as a rights issue first and foremost, but I think it needs to be talked about instead as a safety issue.  While I do not like the idea of our government limiting our rights, I have a bigger problem with my fellow citizens who continue to open fire on large crowds of people using semiautomatic rifles.  It is one thing to have a gun for hunting, but it is quite another to have semiautomatic rifle meant for the mass killing of other humans.

I realize that the way we treat mental health in this country is also partly to blame, but even with that being said, the extent of damage done with a non-assault rifle would pale in comparison to damage done with assault rifles.  If a shooter had less ammunition readily loaded, the chances of them being able to mow down a crowd of people in a matter of minutes without being noticed and stopped would decrease significantly.  I know it without having to read research papers and without studying the statistics behind it.  You know it.  I think we all know it, but here we are still arguing about gun rights while innocent people are being murdered.

Gun violence is not new, and even the first shootings that took place in schools have somehow sunk farther into history than I care to admit to myself.  But as time goes on, it just feels like these attacks are showing up more and more in places where people gather to celebrate, connect, relax, or experience joy.  And that’s scary.  It’s scary because it’s unpredictable and can literally happen anywhere at any time.  While we’re at the movies, concerts, school, and church.

I believe that we are being given the opportunity to see just how broken our current society is.  At what point, do we collectively face ourselves as a nation and decide that enough is enough?  When do we start coming together so that everyone can have equal rights, experiences, and opportunities?  When do we collectively start putting ourselves in other people’s shoes so much so that we cannot bear the thought of hurting another human being?  When do we stop looking at other people as if they are the problem and realize that it is our own fear and hurt and doubts that prevent us from fully embracing ourselves and therefore fully embracing others?

Friends, it starts with each of us.  And not necessarily in the sense that you might believe.  Of course I think that pushing for and taking action to have new legislation rolled out that would block the sales of assault rifles in this country would make a positive impact on our society.  But I do not believe that it’s the only thing that we need to consider.  I think we need to really look at and face the demons that we each carry.  Right now.  Today.  What is it that creates your fear?  Why do you believe that owning a gun will keep you safe?  What makes you hate yourself so much that you can hate another person enough to shun them, hurt them, or even kill them?   What is it about the (fill in the blank) race, (fill in the blank) gender, (fill in the blank) sexual orientation that makes you think that you are separate from them?  That you are better?  That you are better to the point of wanting to deny them the same freedom that everyone else has?  To the point of wanting to cause them harm in some way?

In my own life, I can see that the times where I felt like I was being destroyed, when I felt like I hit rock bottom, were the times when I was given the opportunity to start over.  I was given the opportunity to build myself and my life back up the way I wanted it to be.  I can tell you that it was not an easy road.  I did not gain my current perspective, level of gratitude, or positivity easily.  The really good things in life don’t come easy, you have to do the work.  We all have to start doing the work.  I think that sometimes, you have to be brought to such an immense level of pain and suffering that eventually it breaks you so that you begin searching for another way.  That’s the beauty in many of our struggles. The point where we stop and look at the hurt in our daily lives and see that it’s just not working for us anymore.    THAT’S where we start working for real change.

All of this may seem unrelated to my original topic of gun violence, but just bear with me here.  We each live from a place of our own experiences.  We were destined to come into this life with the human personality and body that we have.  We are all made perfect for the journey that our souls wanted us to have in this life.  But we’ve developed a way of looking at ourselves that does not serve us.  I know that I spent many years seeing a lot of my “negative” qualities and “flaws” and focused more on them than I did on all of my “positive” qualities.  As humans, we sometimes beat ourselves up so much that we overlook how amazing we truly are.  And as I have said in other posts, when we judge ourselves so harshly, we also are more apt to judge others harshly.  When deep down, even on a subconscious level, we hate ourselves, we are more prone to hate others.  Let that soak in for a minute.  Self-hate and loathing are not easy things to admit to ourselves.  Sometimes we bury those feelings so deeply that we do not even see them, but they’re doing damage in our lives subconsciously.  We work to distance ourselves from our emotions and qualities that we deem as “bad” or “negative”.  We have gotten so good at distancing ourselves, in fact, that we’re all walking around feeling broken, but don’t even fully understand why.  When we’re constantly seeing parts of ourselves as “bad” or unacceptable, we’re going to focus on those aspects in other people as well.  So to feel more genuine love for other people, we really have to cultivate our own self-love first.  I believe that self-love is the key to real solutions of change and the lack thereof is the underlying cause of the turmoil that we are facing right now.

I have lived both ways now.  For many years, without even realizing it, I did not love myself.  I fought against parts of myself that I did not like, or that other people did not like about me.  And at the time, I could not see how that was negatively impacting my life.  I did not feel happy.  I sought to fill the void in me with relationships.  I aimed to please people.  I came to believe that as long as the other people around me were OK, then I would be OK, so I sought to make people happy.  I avoided confrontation.  I avoided rocking the boat.  I cruised along like this for a long time.  Until my life fell apart.  And my life felt like it was falling apart for years.  It wasn’t a quick process, but eventually, I worked with people who helped me pick apart my beliefs.  I started to see how my beliefs about myself were negatively impacting my life.  And it became almost like a game to me, to find the underlying beliefs or thoughts, to examine them, and then to decide whether or not to keep them based on how they made me feel.  As I shed more layers and uncovered more of my actual truth, I began to experience self-love in a way that I had never before.  And I can tell you that this self-love has created a positive ripple effect through all areas of my life.  One of the biggest shifts comes from the fact that I have much less judgement about other people than I used to.  It’s really not about getting rid of the parts of ourselves that we don’t like, but rather realizing that it takes all of the little parts to make the whole of us.  We all have light and dark in us, but it’s not about rejecting the dark.  It’s about realizing that we ALL share light and dark and it’s OK.  If something about us is really upsetting to us to the point where we don’t feel like we can live with it, then we have to remember that we have the power to change.  Just because we have always hated a certain group of people does not mean that we must continue on that path if it’s hurting our heart.  Just because we have always believed something does not mean that we have to believe it forever.  Give yourself permission to change and grow.  Give yourself permission to live with a more open mind.

Sometimes our judgments of people are sneaky.  Do you routinely judge those with differing opinions to yours?  Do you judge when people have different values or a different lifestyle to you?  Do you believe that your beliefs are true while other people’s aren’t?  I have looked at my own judgments of people.  Even now, they come out at times, but I notice them.  I see that I am judging.  I see that my ego is just working to make me feel better than others.  My ego works to keep me separate from others, so it looks for our differences.  But my heart, my soul, is always looking for the similarities.  As I connect with the love that I am, I connect with the love that other people are.  When my mind and ego get out of the way, I see things to love in others more than I see things to hate.  I have begun to naturally see the light in others, the good.  I think that sometimes I am actually glimpsing people’s souls.  The souls of humans are absolutely beautiful.

When you break down the beliefs in your own life, you begin to see that we are all the same.  We are all souls here having a human experience, regardless of what that experience looks like.  We have come to feel very separate from each other, but it’s simply not true.  I am no better than you, and you are no better than me.  We are unique, but we share our humanness as our ultimate commonality in this life.  Try embracing that for a change.  Treat every person you meet as you wish to be treated regardless of differing beliefs or values you might each have.  It doesn’t matter.  How we treat ourselves and other people is what really matters.  The rest is a bunch of stuff our minds create.  If our collective goal became to treat each other with respect and compassion, there would not be room for violence and hate that we are experiencing in this country.  Accept those around you with grace and compassion and see how your life shifts.  When we each do that on a regular basis, we create peace in our own lives.  When we create peace in our own lives, we create peace in the world.  As Michael Franti sang, “we can bomb the world to pieces, but we can’t bomb it into peace” and “violence brings one thing, more and more of the same.”  Fighting is not the answer.  Guns are not the answer.  Hate is not the answer.  As cliche as it may sound, love is the only answer.  Love yourself completely so that you may love others.  It’s the only way to end our suffering.  It’s the only fundamental way to stop all of the gun violence.

Have we reached our breaking point yet?  Have we suffered enough?

Sending you all much love and peace.

Listen to Michael Franti’s “Bomb the World” HERE

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Looking for the Map: Part 2 of My Health Journey

So, between November 2009 and June of 2012, I lived with bouts of recurring pericarditis still without knowing the cause.  With everything I did, I worried that I would have another flare.  A flare basically meant lots of chest pain, bed rest (because it seemed to decrease the amount of time a flare lasted), and another subsequent increase in my dose of steroids.  I limited my physical activity during this time, which meant that I wasn’t spending much time outdoors.  And time outside in nature is what soothes me and my soul the most.  As you can imagine, I wasn’t feeling very good overall during this time.  I noticed apparent patterns like my symptoms seemed to get worse around the time of my period, and I seemed to always have flares of chest pain on my birthday, Thanksgiving, and Christmas.  To the point that a friend once suggested that maybe I go to bed before Thanksgiving and not wake up until after Christmas.  I would tell my doctors, but they were unable to make a connection with any of it.

During my son’s naps, I would take time to research pericarditis.  I found an online support forum for people with pericarditis where I was able to connect to others who were also dealing with this strange illness.  I was anxious to find some answers, or at least other people who could relate to what I was going through.  I even went on to be the “leader” of the pericarditis forum for a while, welcoming new people into the group and sharing my own story.  I continue to keep in touch with a few of the women from that group.  At one point, I sought the help of an acupuncturist who would do weekly treatments and send me home with herbal Chinese teas to drink.

During the Fall of 2011, I came across a doctor in my area who had successfully treated someone with pericarditis using IV hydrogen peroxide therapy.  By that time, I was almost to the 2 year mark since my pericardial window, and had been seeing my cardiologist, a rheumatologist, and a had gotten a second opinion from a cardiologist at Stanford.  I was still on daily prednisone, still suffering with the side effects of it, and desperately trying to get off of it because of the known long-term negative side effects. I was also injecting myself with Methotrexate daily in hopes that it would help me get off the prednisone.   No one had any answers for me.  I was desperate for answers and was willing to try anything to get my health back.  I began my IV hydrogen peroxide treatments in September of 2011. I forget how many times a week I would go at the beginning, but I do know that there were some weeks in there once I was successfully off the prednisone that I went 3 times a week when I was sick and at risk of flaring.  Mind you, the office where I went was a 45 minute drive away from my home, and I would generally be there for 2 hours for each treatment, which meant that the whole ordeal of driving and sitting there getting treatment took about 4 hours total.  And I was fitting these sessions in around being a Mom and full-time nursing student.  I once saw a movie where one of the characters was going for chemotherapy and would pull up a black, leather recliner in a room next to the other people there receiving their chemo.  That’s exactly what it was like with the hydrogen peroxide treatments.  A group of people all sitting around in recliners hooked up to IV drips.  The idea behind why hydrogen peroxide can be beneficial is that it adds a large amount of oxygen to the blood stream, and things like bacteria, viruses, and fungi generally do poorly in high oxygen environments.  So even though this doctor couldn’t be sure what was causing my pericarditis, the idea was to oxygenate my system so that the possible culprit would be killed off.  Well, this worked great in that I was able to get off of the prednisone fairly quickly.  Initially, I would chat with the other people there amazed to hear their success stories with a myriad of different IV treatments for various illnesses.  IV hydrogen peroxide does wonders for people with circulation issues related to diabetes for example.  I’d share my story and my seeming success with this new treatment. Later, I would sit and study for class, or sleep during my treatments.  Over time, it became tiring to talk and share my story.  I found myself becoming more and more exhausted all the time, and I would usually sleep through my treatments.  I also noticed that my memory surrounding my exams in nursing school seemed to be declining.  At some point, in a conversation with another patient about primary care doctors, I was told to go to a Nurse Practitioner here in town. My doctors attempted to explain away my severe fatigue (and think even more tired than new parents) by saying that it was because I had a young toddler and was in nursing school, but I knew that it was somehow related to my health. I even questioned if maybe I was experiencing adrenal fatigue, but it fell on deaf ears.  At this time, feeling generally unheard by my other local providers, I sought out the help of the holistic chiropractor in Oregon who had helped me when I bruised the bones in my feet in a fall (see We Are Never Alone) citing extreme fatigue as my most problematic symptom.  She listened to me and agreed that I could be experiencing adrenal fatigue and she had me do a saliva test to find out.  Sure enough, the tests came back definitive for adrenal fatigue and she started me on a natural supplement right away.  I noticed some improvement, but I generally noticed that I seemed to be feeling worse all the time. Between September 2011 and June of 2012, I had a total of 55 IV hydrogen peroxide treatments, multiple infrared sauna treatments, and IV vitamin C and IV DMSO treatments.

When I finally made an appointment (June 2012) with the Nurse Practitioner I had received a rave review about, I really felt like I was just going so that she could meet me and hear my health story, with the hope that she could be a sort of overseer for me of all things medical.  I had a lot of specialists involved on my case, but did not yet have a primary care provider that I could trust to keep track of everything as it was happening. During my first appointment in June 2012, upon telling her my experience with pericarditis and the ensuing loss of my health, she began asking me questions.  I should say that there had been a time for me while living in Oregon where I got lucky to have health insurance through a job after at least 5 years without it.  I had a kind of running list of all of the questions I wanted to ask a doctor during that time about small things related to my health that I had noticed.  My ex-husband once reminded me that I would sometimes see natural remedies for things at the food co-op in Oregon and wonder if they would help me.  He just thought that I was a hypochondriac.  My point is that some minute symptoms may have appeared prior to November 2009.  But back to my appointment…after maybe 5 to 10 minutes of asking me questions and examining me, the Nurse Practitioner told me that I should be tested for Lyme Disease.  I explained to her that I had been tested for Lyme Disease during my second hospitalization in February of 2010, and had been told that the test was negative.  She explained to me that the tests for Lyme weren’t very sensitive and that because of that, diagnosing Lyme was supposed to be based more on clinical findings than the tests.  SEE LYME DISEASE SYMPTOM CHECKLIST HERE  She also explained that because ticks carry more than just Lyme Disease that it was very possible that I was also experiencing symptoms related to other co-infections I likely had.  She gave me a test kit for the Igenex Lab Inc. (IGENEX WEBSITE) here in California that has developed one of the most sensitive tests for Lyme disease in the world, and suggested that I make an appointment with a Lyme Specialist in the Bay area.  I left that appointment completely stunned.  Could she have figured it all out so quickly? Could my almost 3 years of health problems be explained by Lyme Disease and other tick-borne illnesses?  Did this Nurse Practitioner just solve the mystery that several specialists could not?

I went home and dug out my lab results from February 2011 that I had because I had a copy of my chart made when I went to Stanford for the second opinion.  I found out that on my old Lyme test, I did have one band present, band 41. (Understanding Bands on a Western Blot Test) I began to fervently research Lyme Disease.  I found the Lyme Disease symptom checklist and was amazed with the number of symptoms I could check off on the list!  I began to get excited that I might actually have some answers!  And I had a lot of hope that this meant that I would finally get proper treatment!

If you recall from other posts, for my first career, I had spent the better part of 10 years traveling the country as a wildlife and fisheries field biologist, so I definitely had plenty of exposure to ticks in the wild areas where I lived and worked.  I have lived in 1. West Virginia 2. Florida 3. South Carolina 4. North Carolina 5. Maryland 6. Alaska 7. Utah 8. Oregon 9. New Mexico 10. California.  I also worked and/or spent time in 1. Ohio 2. Pennsylvania 3. Georgia 4. Arizona 5. Washington.  I never had a bull’s-eye rash often associated with Lyme Disease. And I only recall having one tick for sure while working in Washington. But the nymph form of ticks can be very very small, like the size of the period at the end of this sentence, so they are easily missed.

You may be wondering why I needed to see a Lyme Specialist rather than just being treated by my Nurse Practitioner.  Well, there is a lot of controversy surrounding the diagnosis and treatment of Lyme Disease.  There are two trains of thought about appropriate treatment for Lyme.  One group includes the Center for Disease Control (CDC), Infectious Diseases Society of America (IDSA), insurance companies, and most doctors who believe that Lyme can be easily treated with a short course of antibiotics. They explain away persistent symptoms post-treatment by saying that the problem is then either psychosomatic (all in the person’s mind) or an autoimmune response.  The other side includes the International Lyme and Associated Diseases Society (ILADS), Lyme literate doctors who have a specialization in Lyme Disease, and lymedisease.org that believe that Lyme Disease is resistant to treatment and that longer courses of antibiotic therapy is needed to successfully treat Lyme.  They explain that there is a such thing as chronic Lyme Disease that persists after treatment, especially when Lyme goes undiagnosed and therefore untreated in individuals.  Most doctors aren’t really trained to recognize Lyme, let alone treat it.  Lyme has so many different disguises and an extremely wide-range of symptoms.  In the United States, the health insurance companies have a lot of say on the kind of treatment doctors can provide to their patients with Lyme Disease.  Doctors who have given their patients long-term antibiotics for Lyme have had their licenses threatened and in some cases taken away. So the Lyme literate doctors as a rule don’t accept insurance, and instead require patients to pay out-of-pocket for their services, because they have found the most success in treating people with long-term antibiotics, and insurance companies would limit them.  If you want to learn more about this controversy, I HIGHLY recommend that you watch the documentary “Under Our Skin”.  It used to be available on Hulu or Netflix, but I found it for rent on YouTube for $3.99 here: WATCH Under Our Skin

In a very round about way, I ended up having my first appointment with my first Lyme Disease Specialist in Los Angeles in July 2012 before flying to Colorado to visit family.  Prior to my visit, I was asked to provide my medical records and was asked to fill out extensive paperwork detailing my symptoms, and was also required to write a one-page paper outlining my health concerns.  As soon as the specialist entered the room, she told me that she definitely thought that I did indeed have Lyme Disease as well as at least Bartonella (Cat Scratch Fever), because of the involvement of my heart.  She surprised me by saying that it would be better if I had AIDS, because it was easier to treat than what I likely had.  At that time she began to mentally prepare me to get either a PICC line or Mediport for IV medication delivery in the future, because of my heart and brain involvement.  She thought that the IV hydrogen peroxide treatments likely helped reduce some of my bacterial load, and said that I was likely beginning to feel worse, because when Lyme is killed off, it emits neurotoxins into the body which can start accumulating in the brain if you’re not taking any kind of supplement to bind to the toxins as they are released.  She believed that this is why I felt so exhausted all of the time and why I was having issues with my memory. She filled out the paperwork for the Igenex Lab Inc. test kit and decided to test me for a whole host of infections at this time. Igenex does not accept insurance, so you have to pay out-of-pocket for their testing unless you have Medicare, or your health insurance covers out of network labs, which mine did not at the time.  Luckily, I was able to apply for and receive assistance from the Lyme Test Access Program (Lyme-TAP) for my extensive testing.

At this first appointment, I received an IM injection of an antibiotic, a multitude of supplements, and the direction that I should completely eliminate gluten, sugar, and dairy from my diet.  I was educated on the Jarisch-Herxheimer reaction, and was told various things that I could do to reduce the symptoms and detox my body during treatment.  I was given a prescription for an antibiotic (Rifampin) to start once I was home from vacation.  We continued onto Colorado to visit with family, with a suitcase full of pills, liquids, and powders.  Finally, I had some answers, and I felt like I was making progress towards getting some semblance of my health back.

Matisyahu “Step Out Into the Light” Video

…to be continued…

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If you or someone you know has experienced Lyme Disease first-hand, and you have questions or comments to share, please do.  I always try my best to help other people who are also on a journey with Lyme Disease. I have included a lot of very helpful Lyme-related links throughout this post.  Please click on them if you want to learn more!