Fibro or Lyme?

Check out the link below to a great post by Kimmiecakeskickslyme about the connection between Fibro and Lyme. And here are my thoughts on the matter:

Fibromyalgia was invented by pharmaceutical companies who needed a market for their drug Lyrica. I’m not just making this up. When I was in graduate school a psychiatrist explained this to us. When I worked in a major healthcare system in the US, patients who were diagnosed with Fibro were considered as psych cases. I think you bring up an important question, but another important question is “Is Lyme disease really Epstein-Barr, or is Lyme disease really a chain of events that creates an autoimmune disorder in the body”. I think this is an important question because getting a Lyme disease diagnosis and going to an LLMD is not necessary an indication that someone is going to get better. In fact, they are likely to get worse. And the worse they get the more they are told that they are getting worse because they have to endure the treatment in order to get better. In my mind a diagnosis of Lyme disease is not that much of a step up from fibromyalgia in regards to getting better. I believe the symptoms we all experience (which of course are very real and debilitating) are a result of a colossal failure of our bodies to be able to respond to multiple stressors, physical mental and spiritual. Many of us were Type A personalities before the illness began. So we are in a weakened state when we encounter pathogens via a tick bite, or something else. Perhaps we also experience severe mental and emotional stressors like loss or disillusionment. Perhaps we also have unresolved trauma from the past that is stored in our bodies as pain. It’s an an assault from all directions to the point where the organism (us) systematically shuts down. Then we travel our journey from doctor to doctor trying to find out what is wrong with us. We want someone to fix it so we can get back to work and parenting and care-taking and whatever else we do. Eventually we find our way to an LLMD and now our bodies are being assaulted again by multiple antibiotics, many of which are the strongest antibiotics used in medicine today. Think of this. An organism has a failing immune system and instead of trying to re-establish the immune system to allow the body to heal itself, we throw multiple pharmaceutical agents at it as if they were candy. I feel like you, that my position on this is controversial. It scares me a little even to post it here. There is so much emotional and physical angst related to this illness. There is also a lot of just pure junk science out there related to Lyme disease. And behind it all is this huge roar of anger about how we have been screwed by the medical system, or bodies, and the people who have abandoned us because they don’t believe our symptoms are real. I’m not going to wrap this up by saying I know what the answers are for anyone other than myself. For me, the road to health involves addressing the physical, mental and spiritual aspects of this illness and then creating an environment for the body to heal itself, which is what it’s designed to do. Thanks for taking the risk of bringing up a controversial topic.

kimmiecakeskickslyme

 This post is geared toward those with a Fibromyalgia diagnosis, but might be a good read and please share this information as I feel it could help people find answers and a path to a normal life. 

 

 I know this post is going to offend. Ok maybe REALLY offend. But with the recent great article posted by Envita, I think this topic needs some further dwelling and consideration. But readers, I am blogging with all the good intentions as I want nothing more than you all to get your lives back. Many of you are completely debilitated, and your lives have been destroyed. 

 

I am hoping that you can all read this with an open mind. 

 

This one really hits home to me since I was misdiagnosed with Fibromyalgia and CFS at the age of 21. I was an overachiever and had all the “trigger points”, IBS…

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Gratitude

Yesterday I received a phone call from a dear friend. I had sent her a message on Facebook about the current state of my affairs (chaos). Her unconditional love inspired me. I feel so grateful today for my incredible friends. When things are gloomy I often bemoan the fact that I have lost my original family to death and estrangement. I lose sight of the fact that I have a family of friends who are here to support me in ways that my original family could not.

I moved from California to Oregon in September thinking it was going to make my life better. Instead things got worse, much worse. I would say the last few months of my life have been the darkest. But I have had many dark times throughout my life so it’s difficult to know for sure. Lately I have been plagued with fear and depression and an overall sense of failure. I imagine looking at my life from the outside in and all I see are bad choices. There is chaos all around me, some of it a result of choices, other parts related to life’s circumstances.

Then everything exploded. I found out my 13-year-old son was using drugs. After just a short time here (5 months) it became clear to me that I needed to get the hell out of here. I’ve felt completely isolated here. It’s been raining or snowing for what seems like months now. I’ve felt as if I have been living in solitary confinement. I realized I had underestimated the consequences of moving here. I left behind people who love me and can help me to raise my son. I left behind doctors who knew my situation and were sympathetic to it. I left behind my church.

Out of sheer desperation I sent my son to live with a dear friend who could provide him with the boundaries and structure that he needs right now. My disability company was threatening to cut off my benefits because I wasn’t seeing doctors regularly. The climate in Oregon for Lyme disease treatment is much worse than California. There is a structure here reinforced by universities that Lyme does not exist and does not need to be treated. I could go on and on about the difficulties I’ve experienced here but I won’t.

Soon I will be leaving Oregon to live with the family that is caring for my son in California. In my mind that meant significant defeat. I’ve had to negotiate with my landlord to break my lease. That’s another mark on the side of “I’m a bad person”. I owe the IRS money. I owe money on student loans. I get mail everyday from creditors I can’t pay. There are no money cushions left. No savings, no retirement. No credit cards. I don’t own a home. I don’t have health insurance. My car needs repair and maintenance work. My son appears to be embarking on the same drug filled chaotic path that I myself lived through when I was his age. Everywhere I look there are problems over which I feel I have no control.

But yesterday when my friend called, she didn’t say, “You abandoned your son!” she said, “How can I help?” She said, “I’m so sorry this is happening to you.” She reminded me that I am a talented painter. There was not an ounce of judgment in her tone. After the phone call I felt a bit lighter. What did I do to deserve a friend such as this? If I am such a complete and utter failure, why do I have such incredible loving friends who are always ready to remind me of my goodness?

 

Prayer

So much despair. Feel so worthless. Can’t pull out of it. So much physical pain. So lonely, so alone. Jealous of all humans who seem to be able to do something I can’t, which is everyone. Feel broken and defeated. No end in sight. How do I keep going when I have no hope? How can I create hope when there is no reason for hope? Feel like I’m losing my precious son. Feel like I have failed him miserably. Feel irredeemable. Somehow must keep going when body is failing, mental is failing. Everywhere I see only death and destruction. Trump. Health Insurance. Death and Loss. So much unknown, everything unknown. Friend’s words are hollow, don’t touch my heart. I think they are over this sob story. Want so much to escape. No escape. Help me please, anyone. Hear my prayer God, please.

Chasing Spirochetes

I went to see a naturopath yesterday. I made the appointment in a last-ditch effort before my insurance ends on December 31. I didn’t want to go. I didn’t see that there was any point in it. Most doctors have been useless for me, especially the ones in Western medicine. All day I was thinking, “What am I going to say?”

I used to go to doctors with high hopes that this doctor was going to be the “one” to get to the root of it all. I made long lists of my symptoms and painstakingly described them. I thought my knowledge and preparedness would benefit my appointments. I sought out the best doctors I could find at leading medical institutions. I allowed them to remove a vital organ. I took buckets of their drugs. Some of them I enjoyed. Most of them I did not.

When Western medicine failed me I saw naturopaths in clinics that had cucumber water in the waiting room and charged $600 just to walk in the door. I spent thousands on supplements, chiropractors, and osteopaths with little to no improvement.

For my appointment yesterday I tried to be simplistic in my needs. I thought a thyroid test was necessary since I no longer have one. I needed someone to refill the three meds I rely on: Sertraline for depression, Synthroid for thyroid, Trazadone for sleep. I need these medications as much as I need food, water and shelter.

I didn’t want to talk about Lyme. I’m tired of chasing Spirochetes that I am not certain are the cause of my illness. I sure as hell did not want to talk about mold. I didn’t want her to recommend thousands of supplements or treatments that I could not afford. All of those thoughts led me to my conclusion that this naturopath visit was going to a waste of time. All day I kept thinking I was going to say, “I really don’t know if you can help me…”

Her office was in an old Victorian that had been converted into offices. It smelled musty like those houses always do. There was a small but cozy portable electric fireplace planted in front of the non-working Victorian one. I anticipated meeting the receptionist who I assumed was going to shame me for not being a full half hour early to fill out paperwork. Instead there was a sign on the desk that read, “Our receptionist is out sick, please be patient and we will be with you shortly”. I was greeted instead by the doctor who handed me a 1/4 inch thick stack of papers to fill out.

I hate filling out paperwork. I hate it because it is tedious, it requires me to remember things I can’t, and often it seems to be an exercise in futility because the practitioners rarely glance at it. Additionally I hate describing all of the multiple ways the illness affects my body. At the end of filling out the papers I was even more certain that this visit was going to be a waste of time. I may look OK, but those papers revealed that I am a hot mess.

I handed them back to the doctor. She was a slight woman, maybe in her 30’s, with long brown hair and a yoga body. She ushered me back to her office lit with fluorescent lighting that made me want to cover my eyes. She said, “So I see you have a chronic illness, a lot of things going on. And it looks like you need help with your thyroid hormones”.

I explained to her as briefly as I could that I had been unable to afford my thyroid and antidepressant medicine, that I had been taking meds that were expired in doses unknown and that right around Thanksgiving I found myself in a deep hole, severely depressed, suicidal, with zero energy to function and little to no ability to assist myself. I told her I wanted to shift my attention from symptoms to creating an opportunity for my body to heal itself, not entirely believing that is possible.

She was kind and compassionate. That alone was helpful. She seemed to understand my financial situation and mentioned she had some samples of things that might help me, most importantly a probiotic. I could tell she understood the gravity of my situation and genuinely wanted to help.

She was as distraught as I am that I no longer have a thyroid gland. I explained that since I had it removed three years ago I have had very few periods of feeling even close to normal and that I had been unable to work since that time. I told her that allowing them to remove it while it was still functioning normally was one of my biggest regrets.

I knew she would want to do labs and I was worried I wouldn’t be able to pay for them. She told me they had a lab that would accept whatever the insurance would pay and not bill me for the balance. This was a huge surprise! I’d never heard of such a thing. In Cali, labs were charging me upwards of $200 just for a simple thyroid test. Even better, she could draw blood right there in her office, which she did. Additionally she said that she could refill my three necessary medications without a problem. She also said that she could do a sliding fee scale for return visits, since I will no longer have insurance in a few days.

I’ve been feeling under attack from all directions. Institutions denying me assistance through no fault of my own. My bitter Ex and my entitled teenager. My siblings and their absence. The illness. Being too broke to buy food. And worse, my own mind which finds ways to blame me for all of it.

I’m so glad I went to that appointment. Unlike so many doctor visits before, I left feeling as if I got what I needed. It was a little sparkle of hope.

 

Siblings and the game of Survivor

I’ve always lived my life as if there was no tomorrow. The function of planning things has always eluded me. Over the last few years while I’ve been ill its become worse. Days and weeks go by without attending to things that are calling for my attention. If I just call it procrastination then I judge myself for it, throw it on the pile of reasons I’m a failure and go back to sleep.

Recently it’s been hard to believe that I will ever feel better. The day after the election strikes me as the first day that I realized I was going under again. But I hadn’t reached the bottom yet. That would come shortly after Thanksgiving when I realized that being haphazard about my thyroid medication and my antidepressants was about to take me down a road I’ve been down too many times.

Sometimes its difficult to fathom how I’ve derived my perception of myself. I treat myself as if I am the worst person in the universe, irredeemable. I set up this council of people and institutions that have betrayed my trust and I turn to them as the final word on my worth as a human being. I withdraw from everything in an attempt to decrease the pain. In short, I am not even sure why I think I’m so awful.

Rationally I think there are good things I’ve done with my life. I never seem to draw on those things when I go into the darkness. Instead I rehash every bad decision in my life that I regret. I turn this movie on everyday and I watch it as it seems to play non stop.

I want to let go of the past that haunts me.

In 2012 I received a letter from one of my sisters who at one time I had been very close to. I opened the door for this letter to come by asking her why we were not as close as we had once been. In the letter she presented several examples of times we spent together where she had been hurt or disappointed in my behavior. It went all the way back to 2007. At the end of the letter she concluded that she didn’t think there was anyway we could be close as we once were.

The impact of the letter continues to haunt me. This was someone I had trusted without question and the letter felt like a validation of all of my worst thoughts and fears about myself. With the exception of my mother’s funeral, where we spoke to each other on a surface level, there has been no further contact between us. I honestly don’t believe our relationship will ever recover.

The effect of this letter continues to haunt me, especially if I feel bad about myself. Ever since that time I am always expecting to find out that people who say they love me actually don’t. Maybe this has been present my whole life and the letter brought it to the surface. Either way I can’t seem to get past it. The act of receiving the letter seems to have invalidated everything I once thought was good about myself. It seems this one person’s opinion of me was so important that the letter seemed like the final verdict of my worth. All of my worst fears were true. I was too much. I was damaged beyond repair. I was unlovable.

I have two sisters and one brother. The three of them are 6, 8, and 12 years older, respectively. They have a different father than I did. My father adopted them before I was born. My mother was narcissistic and loved babies, but not children. My oldest sister, the one who wrote the letter, was like a substitute mother to me. I would never have imagined that there would come a day in my life when I would be estranged from any of them. I had connections with each of them separately and saw myself as the connecting link in a very disconnected family. But now I only have a relationship with my brother, which is tenuous.

I’ve often thought of my family as similar to the TV show “Survivor”. I feel as if I’ve been voted off of the island. However, I know that is not a realistic picture of the situation because I really voted myself off. I changed and I just couldn’t accept the reality of the situation as it was. I wanted close relationships that were authentic. One of my sister’s actions (the non-letter writer) were disgusting to me. I felt like I couldn’t tolerate her craziness anymore. The other sister wanted a surface level relationship that ignored the truth about the past and what we had experienced as children. My brother seems to have no connection to the experience of anyone other than himself.

All of the relationships that once existed were fraught with tension that exploded when I started to be more authentic. When I became ill and no longer was able to be the peacemaker, each relationship exploded and then self destructed. The first one was when the non-letter writing sister verbally attacked me and accused me of trying to turn my other two siblings against her. The second one was the letter from the second sister. The third one was in a grocery store where my brother attacked me verbally, got in my face and told me I never thought of anyone but myself.

And yet somehow I came out of it as the villain.

 

Powerlessness and Lyme Disease

I started participating in nanowrimo at the beginning of the month in the hopes of completing 50,000 words of a book in 30 days. At the beginning it sounded a little crazy, but doable. Now at 16,000 words on November 26, it seems like an impossibility. When I hit about 10,000 words I really felt like I accomplished something. But then I got thrown off. The election. Frequent phone calls from my son’s teachers about his “behavior”. Symptoms. Exhaustion. Unrelieved pain. Whenever I wanted to waste time on Facebook or write a blog post I denied myself in order to promote word count instead. I did learn some things from it. Most importantly I learned that I think I can collect enough words for a book. Just maybe not in 30 days. And maybe not this November. Maybe if I didn’t have symptoms to wade through. Maybe if I had fewer stressful things going on. Maybe a different subject matter.

The subject matter I chose was my journey with Lyme Disease this far. There is no shortage of material. At 16,000 words I am barely into year 2 of a six-year progression. The writing is emotionally taxing. Today I just want to say fuck it to everything. I’m so tired of fighting. I’m so tired of feeling like I do. I’m so tired of how difficult it is to fight this when every day it feels as if new unexpected challenges are thrown in my face.

I live on disability income and this month I signed up for direct deposit, thinking it would allow me to get my money sooner. I can barely stretch the money I get to last between paychecks. After I have paid for the necessities, rent, utilities, car payment, health insurance, I have just a small amount left. I must stretch this amount to pay for food for myself and my son, the miscellaneous money he always needs, gas, and cat food and litter. Forget things like clothes, etc. There is no spare money here. I was anticipating receiving my money on the 23rd as I usually get my check early before a holiday. But when I called the disability company to check on it after I saw no deposit, I was informed that I would be receiving it on the 29th, 5 days later than I usually do. It threw me into a tailspin, because there is nothing that makes me feel more desperate than being completely broke. I can handle it when my son is off with his other mother. But when he is here it feels doubly horrible to have an empty refrigerator. And it hits my self-worth, what’s left of it, thinking I can’t provide for him. After buying cat food last night I have $11 dollars left to my name to last 4 days. As long as I stick to my diet of yogurt and granola and toast and peanut butter I guess I will make it through.

The arrival of the holiday season is not helping. Society projects the idea that holidays are about spending time with family, blah, blah, blah. But in truth holidays are really about money, the ability to have it, to spend it, to buy things for other people. The fear of going to the mailbox has set in, no doubt containing bills I cannot pay. And there is no easy way to explain to a 13-year-old that there will be no presents under the tree unless I stop spending money on food or allow our lights or power to get shut off.

There has always been a self blame component to Lyme. Logically, I sometimes tell myself, I must be sick because I deserve to be sick. I must be broke because I deserve to be broke. I must be on the outskirts of society because I deserve to be here. Societies messages encourage this concept. Anyone who is disabled but able to walk must be faking it, or is lazy and not pulling their weight. Why should everyone have to work while we spend every day in bed no doubt enjoying our so-called “freedom” from the daily grind? Our families quietly tsk tsk tsk behind closed doors about how successful we used to be. They do this in part because it scares them to watch us. They can’t hold the possibility that someone who is up and working, living in a thoughtful way, can gradually become an invalid. They tell themselves it must be something we did wrong, or that we are mentally ill in some way.

There is also a sense of losing individual freedom and being betrayed that is a common thread of Lyme. I took opiate pain medication for four years. I followed all the rules and was responsible with the medicine that by easing my pain, allowed me to stay alive. The last time I went to fill my medication the pharmacist told me he wasn’t going to fill it because he disagreed with my doctor’s prescription of long-term opiates. He had looked through my record and saw that I received a prescription monthly. His tone was condescending and patronizing. I wanted to jump into his face, tell him I used to be on par with him. I was a medical profession with a reputation and power and the respect that comes with it. I had taken my meds as prescribed and had never taken an opiate without feeling all of the shame that comes with it in our newest “war on pain meds”. But I did not. I felt like a bug that he could squash under his foot. I was wearing dirty sweatpants and hadn’t had a shower in three days. I left the pharmacy with my eyes down.

The same feeling comes with the disability company. Although my claim has been approved until the day I am old enough to retire, I must still submit regular paperwork to them verifying that I am in fact, still disabled. When they decide to delay the deposit of my check until the end of the month, perhaps because it gives them a financial advantage, I am powerless. When a pharmacist refuses to fill my medication, I am powerless. When I cannot afford the copays on my prescriptions after paying my monthly insurance bill I am powerless. When so-called friends suggest I just need to pull myself together, or suggest that the medications I use for pain are really the only problem I have, I am powerless. When those same friends do an internet search on Lyme disease, decide they are experts and then try to educate me on the lack of credibility of the diagnosis, I am powerless. When I am abandoned by a once beloved family member because I am no longer the bottomless well of compassion and understanding they once benefitted from, I am again powerless.

In my continuing effort to heal, I have travelled far outside of the box of western medicine. I am now also traveling outside of the realm of the LLMD’s and their barrage of antibiotics, tests and never-ending decision trees of attempting to find whatever the root cause of this illness is. I don’t think any of us, all medical professionals included really understand the full truth of this illness. This collection of symptoms that have arrived and pulled the rug out on so many of us.

In another 50 years, maybe we will have a clue as to what is really causing Fibromyalgia, Chronic Pain, Chronic Fatigue, Lyme Disease, and all the other monikers made up by doctors and pharmaceutical companies to describe this collection of symptoms we currently carry. Most of western medicine says, “If there is not something we already know to name and describe your symptoms, then it doesn’t exist”. The Lyme doctors say, “Everything is Lyme and if you don’t get better with antibiotics then it must be a gene mutation, your thyroid, or worst case scenario, mold.” I don’t believe either of these pathways to diagnosis and treatment are helpful.

Whatever “it” is we are left on our own to attempt to heal ourselves. My quest for healing has led me to try something that at one time seemed unthinkable. I am stinging myself with live bees. It’s been about two months now. On Thanksgiving I stung myself thirteen times. It was a lot of venom to tolerate and I’m still recovering from it. I do believe this therapy has promise. There have been moments, or even a few moments strung together where I have felt certain that I am healing. But as is with all treatments for this collection of symptoms, the path is long and arduous. Moments of feeling better are inevitably followed by periods of darkness and symptom overload and feeling like I am at death’s door. There are no shortcuts to healing from this illness.

In the top of one of my closets I have a butterfly enclosure filled with approximately 60 bees. Three times a week I go about the delicate process of catching them one by one with tweezers and then strategically placing them in the areas of my body that are the most affected. Most of the stings are along the back of my spine in order to allow the venom to travel nerve pathways. This is a challenging therapy and I believe one that can be endured only when all other paths have failed. Yes, bee stings hurt like a mother. And there are moments when I am ready to chuck the whole process like today. This is the end of the road treatment for me. I’ve tried everything else with little to no improvement. I have met people in person who have recovered from Lyme using bee venom, and one of them is an apitherapist who has graciously assisted me in beginning this journey.

There are risks associated with this treatment. Many of the risks remain unknown due to lack of scientific studies related to it. Much of the knowledge comes from people with MS who have been stinging themselves in order to heal. There are people in the public eye who are claiming to have “invented” bee venom therapy for Lyme although in other countries people have been using bee venom for health for centuries. Because there are so many of us with this collection of debilitating symptoms that the medical community dismisses, the treatment of Lyme is now ripe for scammers and con artists. Almost every day I will see a new post “suggested” on Facebook about some new treatment for Lyme that is supposed to cure. The only limit to the number of treatments available is how much cash you have to squander. We are desperate, we are ill, and we are vulnerable.

If you decide you want to pursue bee venom therapy here is my advice. Do your own research, find someone near you who is doing it and is seeing benefits, and then prepare for a bumpy ride. No one along the way is going to be able to tell you whether or not you are going to have a fairy tale ending with bee venom. No doctor is going to support you in this therapy due to the lack of research and the liability involved. No one is going to be able to tell you for certain that this is safe or that there are no long-term consequences involved. No one is going to be able to tell you how meds you are currently taking will interact with bee venom. There are many false prophets gaining a lot of attention who are not educated as physicians or healers but are projecting themselves as such. The venom does speak for itself if you can endure the difficulty and get past your initial fears.

There have been times when I have been certain that Lyme came along to transform me in ways nothing else could. I still believe that but that doesn’t mean that there aren’t days when I just feel overwhelmed, burdened, and tired like I do today. There is not much I can do except to write, attempt to have compassion for myself, and wait for it to pass.

 

 

 

 

 

Ticked Off

I have lots of unfinished posts lying around in my dashboard. I haven’t felt capable of writing anything coherent for some time now.

I went to the gynecologist today. It sucked as much as it always does. I brought a friend for encouragement. I can barely handle touch right now as I feel so sick and vulnerable and pelvic exams always trigger childhood feelings of violation. I am also getting tested for the BRCA (breast cancer, ovarian cancer) gene. A family member relayed the message to me that she tested positive and that she had elected to have surgery (removing her breasts, uterus and ovaries) because of it. I wish testing positive for the BRCA gene was the biggest worry I had right now. Because of everything else that is going on, it’s actually the least. I’ve already lost my thyroid gland, I have an illness that no one seems to understand that has left me unable to work for three years, and I’m bankrupt. Losing my breasts, ovaries or uterus seems mild compared to what I’ve already been through. I know, lots of things could be worse. But, please, don’t remind me. It’s not going to make me feel better.

I can hear the faint sound of TV coming through my son’s bedroom wall. Or it might be that I left the TV on in my room. Either way the “hmmmm” from it feels caustic and the refrigerator buzzing intermittently makes it worse. Not being able to get away from obnoxious sounds makes me long for a padded room. I remember when this symptom first began. It was right after my son was born 13 years ago. Every time the kitchen faucet was turned on I would internally shriek. The sound of the water hitting the metal sink was too much to take.

I’ve been watching too much TV lately. It only reinforces my feelings that the world has gone to shit, everything is fake and Big Pharma is taking over the minds of bodies of people and making them inhuman. I look at people on TV and out in the world and I am puzzled by how they are living. Everyone seems to be in a work and media induced trance. Accomplishment, achievement, money gathering and material possessions are the earmarks of a “successful” life. I was once amongst them. Now in the eyes of society, I am invalid.

I’m amazed when I see people who are able to remain standing and do something like cook dinner after 6 at night. If I don’t accomplish something in the first few hours after I wake up, it’s not going to happen. The body does not cooperate. The mind does not cooperate. I wonder what it must be like to live without pain. It’s unfathomable to me. I take opioids daily and use cannabis to ease pain, but I never achieve pain relief. To do so would require me to use way more opioid medication than I am comfortable with. I only take the amount I know I can easily wean myself off of should the miraculous occur.

This is usually about the point that I quit writing. Mind keeps chiming in, “Who cares?”, and “HOW is this relevant again?” Some part of body is always throbbing, burning, or involuntarily going into spasm. It’s the left scapula today. I struggle to remember rules about writing like when to use apostrophes, which irritates me. 

I moved to California 7 years ago. When I arrived by all appearances, I was healthy. I was starting a new job in a career that I loved. I had achieved my dream of earning a Master’s Degree. I was buying a house. I was helping people. Coworkers respected me, and people often told me how much I had helped them. I fell in love (in a non sexual way) with many of my patients along the way. I was working 12 or more hours per day, taking on the toughest patients that no one else wanted. I did four depression groups each week. I could stand up and do things after 6 pm, often staying up till midnight or later being “busy”.

I had never known poor health. The only experience I had with pain was unmedicated childbirth and a recurrent dislocated little toe. Like most of my colleagues I had little patience with patients who had chronic pain and were “drug-seekers”. Influenced by my own past substance abuse and my experiences working in substance abuse treatment, I had a black and white view of mood altering drugs. At the time I had been clean and sober for nearly three decades. My beliefs had led me to avoid any drugs, even when I had surgery. I had also been a vegetarian for two decades. If you asked, I would have told you that I was most proud of my brain and my educational accomplishments. I was convinced I could conquer most anything I put my mind to.

This is usually when I quit writing again. Because my left shoulder feels like it is collapsing into my ribs. I’m in pain and I’m already tired of writing.

I’ve lost hope again that I will ever achieve wellness. I am not even sure if I am close to the truth about what is wrong with my body.

After I had been having health problems for about four years, I was diagnosed with Lyme disease. My healthcare costs for the year after I was diagnosed amounted to over $112,000. I stopped being able to pay my medical bills, and eventually my credit card bills too. I have nothing left. I struggle to feed my child. Adding insult to injury, two years post diagnosis I’m not better, and many times I am worse.

This is usually when I quit writing because I get lost in the swirl of being overwhelmed by too many problems, too many worries, and I start to think, “this writing shit isn’t helping”.

I’ve gone in and out of believing that Lyme is at the root of my now multiple afflictions. My most recent mind fuck about it came in the form of a blog post asserting that both the ILADS and IDSA are wrong about Lyme. The author of the blog post asserts that the spirochetes aren’t living in us, but that the bite of the tick with all his nasty shit set off an autoimmune disorder of a catastrophic portion, something similar to HIV, but without a useful treatment like HIV now has. I am bastardizing this person’s post trying to explain what the point was. This person had done the research and suggests that Chronic Lyme is not caused by spirochetes ravaging our tissues but instead by ospA. To the best of my understanding ospA is a component antigen of Lyme disease that was used in the  failed Lyme vaccine. The Lyme vaccine failed because it actually caused all of the symptoms of late stage Lyme that we now experience. Here is the really important part. The vaccine did not contain spirochetes or co-infections and yet it caused the devastating life killing disease that many of us who have been diagnosed with NeuroLyme are experiencing. My apologies to the original post’s author for my bungling explanation. You can read the blog post here:

“This is not a bacterial disease. It’s a nightmare of immunological meltdown.”

Source: The Lyme Gut Punch

What if this is true? No spirochetes, no biofilms, no list of never-ending co-infections? There is a lot of emotion behind this issue for those of us who have been diagnosed and treated for Lyme. We have suffered within our bodies, we have suffered at the hands of the medical community, we have suffered within our personal relationships.We are desperate for answers. Let’s face it. A spirochete linked illness that has a treatment (a rather miserable treatment full of more suffering I might add) is preferable to an ospA related illness, which there is no current treatment for, nor is there research designed to study it. Please do not misunderstand me as saying that Lyme disease and chronic lyme disease do not exist. I’ve lived the symptoms and this shit is real, and it is systematically destroying my body.

The information I read about the ospA theory just blasted a hole in my mental facade. I had been trying to bring in light, trying to make some changes that could bring potential benefit for myself and my son in the near future. Reading that information, even if it’s not true made me feel that perhaps I have possibly been conned by another medical community, and these were supposed to be the good guys.

My thoughts about this are fueled by the knowledge that Lyme literate healthcare providers are making a killing on the backs of Lyme patients. On a Lyme message board recently I read that Lyme patients are paying over $800 dollars for a first visit with a new Lyme doctor just north of here. My first visit to a Lyme practitioner cost about $500 before supplement costs that I had to pay up front and then submit the bill to insurance which I was not reimbursed for. It didn’t seem like a good fit and so I sought out another Lyme specialist. It was $600 paid up front just to walk through the door. He recommended more testing and supplements that set me back about $1000.00. The additional testing added nothing to my diagnostic picture.

Finally I found a LLMD that accepted my insurance. It worked out well for a while, but now my LLMD has also become financially out of reach for me. Lyme patients who have my insurance are offered 15 minute in-office visits in accordance with what the insurance reimburses. These 15 minute visits come with a $55.00 copay. Follow up visits are offered by telephone for 30 minutes, accompanied by a $40.00 copay. I guess you could say it’s better than nothing, but my first go round with it provided me with essentially nothing. The first visit was “hi, hello, look at 2-3 lab results, goodbye”. The second visit via phone the Dr. went over lab results we had already looked at in the 15 minute visit. Then the Dr. went on a tangent related to hormone replacement which I didn’t even want. I’ve had bioidenticals prescribed for me twice now and have been overdosed on progesterone (causing symptoms of Sjogren’s disease) and testosterone (causing me to have unexplained rage). My brain was not working at capacity during the phone visit and I had no ability to redirect the Dr towards something more relevant to my current symptoms. The hormone conversation took up the rest of the time and then it was over. I got nothing. I thought about calling the office, trying to explain that I was not getting what I needed, but I knew I would just be offered another $40 phone call. And like most things that require motivation and brain power to accomplish, it just fell to the bottom of the list of things that seem too overwhelming to contend with.

I know I must not be the only person living in poverty as a result of Lyme disease. I’m frustrated by stories of people with Lyme who are travelling around the world for the best treatments. Some people are funded by their parents, or spending their life savings I guess. People are able to afford things like infrared saunas, rife machines, or visits with the famous Lyme doctors like Stricker, Burrascano or Jemsek. Everyday it seems some new Lyme specialist is offering some new Lyme treatment that claims to knock it out of your body for several thousand dollars. And these businesses are thriving because people are literally dying to be cured.

Who is winning here?

The Pusher and the Shaman

Sometime around the first of the year I started using Animal Medicine cards to assist me in my healing from Lyme Disease. It was there that I first read the term “shamanic death”. I had heard of shamans before in my spiritual questing. I had the thought that I could sure use a shaman to help me with Lyme Disease. But, how, where, when? Like so many things it seemed like an impossibility.

I suppose this could be a tale about the importance of vocalizing your wants and needs. A short time later I was in the presence of someone who heard my desire and set out to make it a reality. She knew someone who knew a shaman, and not just any shaman, but a shaman who was recovering from Lyme disease.

For at least the last six months, probably longer, I’ve been in the darkest depth of depression. One Saturday I went to visit some relatives I hadn’t seen in a long time. My symptoms were particularly intense that day, like so many days in the last months have been. The act of displaying some semblance of normalcy took all of the energy that I had that day, which was close to zero anyway. It was a perfectly good visit, and I enjoyed the socializing, and the feeling of being around people you share blood with.

It was an hour-long drive home in the dark with my son sleeping in the back seat. When I look back, I see it as raining, but I’m not sure if that is accurate. NPR was on, and playing a segment where they had an author read an excerpt from one of their books. I can’t remember the name, but it was about a homeless man who has regular interactions with the author. The homeless man has a old dog he clings to and frequently inserts himself into current events in the news and tells the story as if he lived it. My memory fails me, but the story came to a sad ending and touched the part of me that feels disconnected from my own family. Soon I was sobbing. It wasn’t just that day, it was everything, all the stressors of the last months, the last years, and the never-ending onslaught of symptoms related to this horrible disease.

That night I decided I was going to take my own life. I planned to do it on my father’s birthday at the end of May. It seemed right somehow, to have a meaningful date, and one that was about a week away, giving me time to “prepare”. There was a desperate cry for help in the middle of all of it, to anyone listening. If something didn’t reveal itself to stop me, I vowed to go through with my plan. I’ve felt suicidal on many occasions during this illness, but this time was different. Having the plan gave me some relief and a direction. I decided to begin clearing objects from my home so the people left behind would not have a bunch of crap to sift through.

The next day when I talked with a friend, I did not try to hide my apathy for all things. I didn’t say much, but she told me later that she heard something in my voice that made her very concerned. She had already given me the shaman’s contact info. But in the place I was in, it was very difficult to make phone calls unless I really had to. I wasn’t capable of helping myself at that point. So she stepped in and made the call for me, and set up a meeting between the shaman and I, and offered to drive and accompany me. I really needed that and I’m so grateful that she did that for me.

About a week later the shaman came to my apartment and did a healing session with me. There have been many more healing sessions since that time, and a host of new herbs. The die-off from the herbs is intense and I am experiencing that everyday now. I am hitting the herbs hard because I am looking forward to the point where the bugs have less of a hold on my body. My shaman has encouraged me in this direction because he knows from experience that if I can kill enough bugs to feel better, it will encourage me to keep going.

Dealing with die-off has been a problem for me since I first began taking bug-killing herbs and antibiotics two years ago. The intensity of the die-off is something I have to be very mindful of. Prior to becoming ill, I had been drug free and a vegetarian for decades. My body was really sensitive and even the smallest dose of a medication would send me into a tail spin. Once I began taking bug-killing drugs and remedies I was about two to three years into the sickness. At that time I was taking multiple drugs everyday. Drugs for pain. Drugs for sleep. Drugs for depression. Drugs for anxiety. I had gotten to the point where there were so many drugs I couldn’t really tell what was helping or not. I felt bad all the time irregardless.

The first herb I tried was Japanese Knotweed. I took one drop and a short time later my pain increased one-thousand fold and I was flat in bed with a migraine that lasted a couple of days. I could tolerate Cryptolepsis and A-BART better, but the most I ever could get up to was about 4 drops once per day. I took Doxy and Tinidazole for about three months and had a weekend where I felt the best I had in years. Two days virtually symptom free. I stopped the antibiotics. Soon, very soon indeed, all symptoms returned. The two days were in February of 2014. I have not had any days like that since that time irregardless of the multiple regimes of antibiotic protocols my LLMD has prescribed.

The first shaman I saw recommended I see another shaman, one who had helped him tremendously. I went to see him and through a process of divination, he prescribed four different herbal combinations to take to help heal my lungs, my depression, my digestion, as well as bug killers. He prescribed one teaspoon of each formulation three times per day. I was apprehensive about taking them and put it off until after a planned trip to see a family member. I was dreading the die off. I’ve always found it hard to put something in my body that was going to make me feel worse than I already did. But finally I gathered the courage and began my first day of one teaspoon three times a day. By the end of the day I was useless. Intense pain everywhere, waves of depression and anxiety linked to no apparent cause, irritability, increased sensitivity to noise and sound to the point of feeling like I needed to be in a sound proof light-proof bubble.

I convinced myself to lower the dosage, although the “pusher” that lives inside of me disagreed. The “pusher” tells me that I’m weak and that’s why I can’t handle the appropriate dose. There have many times when I have abandoned protocols because I’ve been overloaded with symptoms. These events have always been followed by intense punishment from the “pusher” who claims I can’t handle things well enough. I’ve come to see the “pusher” as a manifestation of Lyme brain. When the bugs are being killed they become restless and angry and they attack my most vulnerable points in order for me to stop taking the things that are killing them. Just like any other organism in life, they are programmed for survival.

I discussed this issue with my shaman and some friends and all encouraged me to back off on the dose. What good is a healing regime if it makes you so sick that you cannot participate in your life to any degree? I’ve always been a Type A personality, a “no pain, no gain” type of person. I’ve survived many things by sheer will alone throughout my life. When I was diagnosed with Lyme I wanted it out of my body and I wanted it out fast. I’ve learned the hard way that the way out of Lyme is not a marathon. It’s a very slow mindful walk through a complicated maze with lots of rest stops and u-turns along the way.

So I started up the herbs again and this time I started with a 1/8 teaspoon twice a day. The “pusher” mocked this dose but I persisted. This amount made me plenty sick, but I could feel the rise and fall of the symptoms between doses. After 3-4 days I went up to 1/8 teaspoon three times a day.

A few days later I went up to 1/4 teaspoon three times per day. I found that if I took the first two doses somewhat close together, say at 10 am and 12:30, I could have a few hours in the evening of feeling less overwhelmed by symptoms, before the last dose at bedtime. A few days later I went up to 1/2 teaspoon three times a day. The die-off was intense, but manageable as long as I kept my mind in the right place. I had to remind myself constantly that when I was feeling really sick it was good and normal because it meant I was killing bugs.

My shaman suggested I switch up the bug killing remedies every 1-2 weeks. This is how we deal with Lyme’s ability to quickly identify a bug killer and render itself immune to it in various ways. So after about two weeks I switched to tinctures of various herbs I have picked up along the way. Mainly, I used Cryptolepsis, A-Bart, Cordyceps and Balkai Skullcap. By then the “pusher” mentality had gained a hold. I figured since I had been able to gradually increase the shaman’s herbs I should be able to handle more of these herbs than I had before. So after the first day I went up to about four drops of each 3 times per day. That’s 12 drops of each per day when I had only been able to tolerate four drops per day in the past.

I started to feel very sick very quickly and I was not able to distinguish the rise and fall of the die-off. Suddenly everything was die off with no rests in between. After about four days of this the darkness became overwhelming and I was no longer able to stave off the  thoughts. Soon I was thinking, “I’m never going to get better, nothing is helping, why am I taking these useless medicines made from plants”.

It was only after my shaman suggested it that I was able to allow myself to take a day off from the herbal protocol, and then another. The “pusher” was very active during this time with descriptions of what a loser I was for giving up. On the third day I finally began to feel slightly better. It had been a week so I thought I would switch up the bug killers again and go back to the shamans herbal preparations. I thought that since I had stopped at the dose of 1/2 tsp three times per day that I would be able to start again at that dose. I was wrong. I was again overwhelmed by symptoms and the “pusher” was out in full force chastising me for not being able to handle the dosage. With some encouragement from a friend I was able to again go back to the 1/4 tsp 3 times per day. Now my symptoms, though at times extremely uncomfortable, feel more manageable again. It strikes me now that it doesn’t matter how many times you want to give up, or if you have to quit or back off of a bug killer. What’s important is that you stay in the game of bug killing.

I’ve started taking Bee Pollen several times a day. I think it helps with energy and there are so many healthy properties that it has. I’ve become convinced that the answers to healing from Lyme must come from the same place that Lyme has come from: the earth. This last week I went to a class on using Bee Venom therapy for Lyme disease and soon I will begin this protocol which I know intuitively, in combination with the herbs I am taking, are going to heal my body.

Lyme is a mental, physical, emotional, and spiritual illness. In order to heal and to activate the complete transformation that is available with Lyme disease, we must address all aspects of it. We must take our power back from the medical system and become the leader on our own healthcare teams. We must consider things we may have balked at before. Healing happens from the inside out, not from the outside in.

 

 

 

 

The Beginning, or was it?

Prior to my health decline that began in 2010, I had never experienced any major health problems. I felt like I had a strong immune system because when other people around me were being hit by viruses, I could avoid them with strong mental thinking and herbal preparations. So when I began experiencing symptoms that were initially mild I wasn’t too concerned. But then as time went on and the symptoms became worse and eventually debilitating, I knew that there was something wrong in my body that was causing the suffering. Of all the things that have changed and been turned upside down in the years that have followed, that one thing has remained constant. I’ve always known something was terribly wrong.

Between 2010 and 2012 I saw dozens of doctors trying to get help. They would run a few tests, which would always come back normal and then tell me that there was nothing wrong. They offered me lidocaine injections, physical therapy, and pain medications. When I asked for an MRI they gave me an x-ray and pronounced me as “normal”. I had to see several more doctors to get the MRI. Finally one doctor agreed reluctantly. The MRI of my cervical spine showed disc bulges and cervical stenosis which the spine doctor pronounced as “normal”. I asked to see an Orthopedist. The Dr. agreed reluctantly and told me it was a waste of time. The Orthopedist I saw was the rudest Dr I have ever met. She told me in a condescending manner that she didn’t have a “silver bullet” for me, and that I just needed to go to the gym. I found out later that she wasn’t even an orthopedist, but an ER doc filling in as an orthopedist.

I begged to see a Neurologist, and finally saw a Dr. who was willing to refer me to one. When I got to his office, his manner was dismissive and he seemed confused about why I was in his office and wanted to know how I had gotten the referral. Still searching for what might be wrong with me, I showed him how my scapulas had begun to protrude out of my back and that I had a family history of Facioscapulohumeral muscular dystrophy. He told me he thought that was interesting, but not relevent. After a brief neuro exam he pronounced me normal and sent me on my way.

I finagled my way into another Neurologist’s office. By now I knew there was a genetic test for the muscular dystrophy that afflicted my family. I wanted the test. The neurologist told me that I would need confirmation from my cousin with FSHD which genetic deletion she had. They wanted me to produce her medical records. I called her and she started crying on the phone. The neurologist suggested I try calling another time and getting the info. The Neurologist told me the test was extremely expensive and that she couldn’t order it without knowing my cousin’s results. I didn’t call my cousin to confirm her results because I didn’t want to upset her again. Instead I told the neuro that I had confirmed her results and the Dr. agreed to give me the test.

I showed up at the lab and the receptionist told me that the test my Dr. ordered had to be approved by some gatekeeper high up in the system who only visited the lab once a week or so. Finally I heard from the lab that I could come in for the test. I sat down in the chair and the lab tech drawing my blood said, “You must be very special, this is a very expensive test.” “Really?” I thought but didn’t say aloud. I wasn’t feeling very special at all, in fact I was feeling quite the opposite.

The test came back negative which only provided a limited sense of relief. By this time I had missed several weeks of work due to the debilitating migraines I was experiencing three days per week. If I didn’t have FSH Dystrophy, then what did I have?