…and what they mean to Medicine and Patients by Tom Grier , Microbiologist July 2016 Download pdf version with extra spacing to aid neuroborreliosis patients. Page 1 | 2 | 3 | 4 | 5 | 6…
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?
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.
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?
Everyone with Lyme should read this post.
Soooo… I’ve been under a bit of a writer’s block. I’m not even going to pretend I know when my last post was, because I don’t, and I didn’t check. I can give a myriad of excuses, watch me. I’ve been feeling better. I’m in school now. Chemistry requires a lot of homework. I’m getting back into domestic duties. A few siblings are living with us right now and frankly, hanging out with them during free time is more fun than blogging. I’m just more busy these days.
See? But on the other hand, if I’m being honest, a more sinister reason trumps all. I have spent the last handful of months experiencing a very unexpected, very oddly-timed, season of grief.
Those around me for the past few years that I have been sick or in treatment have frequently commended my strength. And it’s true, I did notice during those…
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I’ve been watching the Real Housewives of Beverly Hills for several years. When you first arrived on the show I was struck by how different you were from the other ladies. The first thing I noticed was that you seemed to be interested in genuine relationships. In spite of the fact that you could easily coast on your beauty and grace alone, you demonstrated substance and integrity in your actions with your husband, your children, and the other women on the show. It was really a different show with you on it. Your values showed through, and not just in a gratuitous charitable fashion. And you have stayed true to your values throughout the show, never taking the lower road like some of the others.
It was difficult to watch your health slowly decline, especially because my journey has paralleled your path. I was diagnosed with Lyme disease in 2014. Many of the things that you have experienced I have experienced also. I can’t tell you how valuable it has been to be able to watch your journey play out, as difficult as it has been. I am so grateful that you have stayed on the show to increase awareness in spite of how challenging it most certainly has been for you. Especially when the other ladies began attacking you and questioning your integrity. So many of us have experienced the criticism and disbelief of others as we struggle to understand an illness that we never asked for and don’t deserve. To watch this play out on the show has been (albeit painful) so validating for me and for many others like me, I’m sure.
I am so grateful for your willingness to be filmed during your devastating ordeal. It demonstrates such courage to show up on camera as you are, without makeup, with your hair imperfect, sometimes grouchy, and angry (rightfully so) at your bitchy accusers. In the plastic world of Beverly Hills, you have shown us what it really means to be real. I can only imagine that staying on the show has been an ordeal. It’s a testament to the love that you so freely give that you have endured the show this long. For Lyme sufferers everywhere, who understand exactly what it takes to “show up” for life while suffering from an illness that many do not understand, you give us hope.
Recently when I watched the episode at the Lyme Gala, I was so proud of you and what you have done. For many Lyme sufferers you may be the only voice they have heard that says, “I understand, I’ve been there too”.
I was sad to hear the news of your divorce, but hopeful that it will assist in your healing. My relationship ended right around the same time as yours. Relationships, as you know, can easily become casualties of Lyme disease.
As we journey together through the thick of this, as days, weeks, months and years have passed, we grieve for who we once were and wonder who we are to become. In those times, when the long night is the darkest, I hope you will remember that what you are doing matters. It matters to me, and it matters to the thousands of other Lyme disease sufferers.
With much love and thanks from all of us, for helping us to feel less alone.
I was having a conversation with a medical receptionist recently. She’s from the East Coast, has a friend who has Lyme, and has been experiencing a decline in her health. She went to her primary care at Kaiser here in the Bay area, and asked about Lyme Disease. She was told that “Lyme disease is a fad, it’s just something everyone thinks they have right now”.
My biggest problem is the opposite. In spite of substantial medical evidence, I go through long periods where I doubt the diagnosis and search frantically for a different explanation for my symptoms. I’ve been doing that for at least the last few months. I have thyroid disease, so I blamed all of my symptoms on that. But after experimenting with different doses of thyroid medication, I now realize that there is a baseline level of sickness and pain that I experience everyday whether my thyroid is stable or not.
I was bitten by a tick. I got sick after the tick bit me. In truth after the tick bit me, it slowly plowed through the rest of my life, flattening everything in its wake. I lost my job, my self-esteem, my professional reputation and my credit rating to Lyme.
The pain is difficult for sure. But the psychiatric effects of Lyme are very debilitating. I’m beginning to notice when I read other Lyme bloggers websites that there is a very characteristic picture of what a brain infected with Lyme acts like. The psychiatric symptoms of late stage Lyme are well documented within the literature, but are not often talked about or acknowledged.
The symptoms are so insidious that most of the time I am completely oblivious that I am experiencing them. I’m not saying that I don’t notice the anxiety, depression, suicidal thoughts, paranoia and depersonalization I experience everyday to varying degrees. But what I don’t often realize is that these symptoms are part of Lyme disease. And when the symptoms intensify during die off it begins to feel like a big psychotic mess. No part of my brain seems to be able to organize itself enough to say,
“You’re missing the big picture here. Biological toxins are affecting every thought and emotion. You’re not going crazy. You’re killing microorganisms that produce endotoxins when they die. It’s the Lyme, not you.”
Lyme disease has a profound affect on your brain and nervous system. But there are external factors as well. When you tell people you have Lyme and they dismiss you, it makes you feel like you are crazy. You know how debilitating your symptoms are. But then you end up in front of a doctor or multiple doctors who imply that you are over exaggerating your suffering. When you tell people about Lyme, and explain the controversy regarding the diagnosis and treatment, their eyebrows begin to rise. They will point you to websites that tell you that LLMD’s are charlatans who have convinced you that you have a disease that does not exist. You start to wonder, is it just me? Who do I trust? What can I rely on?
Two weeks ago I had an appointment with a new neurologist. I’ve seen about a dozen neurologists in the five years that I’ve been ill. My LLMD is also a neurologist. The purpose of the visit was to rule out muscular dystrophy due to my symptoms and because it runs in my family. I’ve seen other neurologists about this but have been dismissed by most. This neurologist did a more thorough exam than his predecessors. It seems most neurologists do whatever their version of the Neuro exam is and if they don’t see anything blatantly wrong (i.e. you are in a wheelchair) you are dismissed. That’s been my experience anyway.
I prepared myself mentally and emotionally for the visit. It’s not uncommon for a bad doctor visit to send me into a death spiral of depression and hopelessness. It doesn’t help that I’ve received much of my care from Stanford, which I always thought was the best there is. And I have had some really good experiences there. But I have seen enough doctors at Stanford to get a feeling about their position on Lyme Disease. To the majority of doctors of Stanford, there’s no such thing as neuro-lyme. When I told my pain management doctor at Stanford (who is amazing) that I had been diagnosed with Lyme disease, he took me seriously and made an appropriate referral to the infectious disease docs. The medical staff called me about the appointment and demanded a copy of my western blot test results before they would make the appointment. By then I already had a LLMD and I wasn’t going to subject myself to their scrutiny.
Many of the doctors I’ve seen do the same thing I’ve been doing recently. Denying that Lyme is real. They pretend not to see it on the medical record. Or when you tell them about it they say a quick “Hmm” and change the subject. Or they will flat-out say that none of my health problems could possibly be related to Lyme disease. I can’t imagine another disease that doctors would treat in such a way. And that’s where the craziness starts. Who am I to claim that I have symptoms from a disease that one of America’s leading health institutions says doesn’t exist?
Often it will be one comment on the part of the doctor that takes me down. Two visits ago, when I went to see a neurologist about my Chiari diagnosis, which mysteriously appeared after I contracted Lyme disease, the doctor said to me, “Has anyone ever tried to figure out why you’re in so much pain?” I’m thinking, has this guy even looked at the electronic medical record? The past four years of my life have been consumed by trying to figure out what’s causing this pain! And each doctor’s opinion, it’s all in the record.
It’s a big problem that I present well, as in people have said I don’t look sick. Prior to becoming ill, I was not the kind of person who ran around looking for sympathy. I learned at a very young age to hide my pain and that process is wired into my nervous system. And I always see these doctors in the morning and after taking a pain pill. The truth is I have to try to plan my day so that I do anything I need to accomplish before 1:00. After that it’s very unpredictable how I’ll be doing. My brain becomes filled with scrambled thoughts and the muscles of my head, neck and upper back and upper arms contract involuntarily causing pain that makes me feel like my muscles are being pulled away from the bone.
Ironically the day after I saw the most recent Doc, I woke up with one of the worst migraines I’ve had in a long time. I think it might have been from moving my shoulders around so much trying to show the Doc how deformed in appearance and function they’ve become. They stick out of my back like wings. Something that also mysteriously appeared after contracting Lyme. I spent too much time telling the doctor about my shoulders and very little about my pain. By the end of the appointment it was clear he thought my concern was about the appearance of my shoulders when he asked me, “But, really how much do you feel the shoulders are interfering with the quality of your life?”
“The pain related to my neck and shoulders is the number one thing affecting the quality of my life,” I told him.
It was too late by then to try to get him to understand the level of my suffering. I think this happened with the other Doc also, because at the end of the visit he suggested I try ibuprofen. The answer at the end of these visits is always the same. There is nothing to be done and they have nothing to add to the diagnostic picture. They all agree I should have another (my third) cervical steroid epidural since they helped relieve my pain for three months the last time.
The day after the visit I got a survey from Stanford asking me in a roundabout way if I thought I needed a pain psychologist. Maybe it was just a coincidence, but it bothered me anyway. Not that therapy isn’t a good thing but just because I began to feel as if their collective opinion was that my symptoms aren’t real.
I left that last visit with gratitude for the wonderful neurologist I do have, who is Lyme-literate and who has treated me at every visit with respect and care. She never dismisses my concerns and always wants to know my perception of what is happening. It makes a huge difference, and I am so lucky to have her.
I don’t want to have Lyme. I don’t want to have a controversial illness that is difficult and costly to treat. I don’t want to be dismissed by doctors and even worse by people who I thought cared about me. I don’t want to have Lyme, and yet, I do.
One of the advantages of having a blog, I suppose, is that you have somewhat of a record of your progress. That is, if you don’t have a daily symptom log like my doctor wants me to have. I just read my last post from two months ago and although I can vividly remember feeling that way at the time, I feel much differently now. For instance, I’m not fantasizing about green hoses and carbon monoxide. And I can even see some humor in that and have compassion for myself at the same time. That, and the fact that I am able to write, are literally miracles if I have my perspective on right.
I SO need some kind of external validation that things are on a uphill course, however gradual. Just knowing that things are on some kind of course is helpful. For so long now, until recently, it has just seemed like perpetual suffering. Once you have had Lyme & Co you can say, “Yeah, I have walked through the valley of death”. Has anyone ever said to you, (or have you ever said to yourself), “At least it’s not cancer”? Don’t kid yourself. It’s just as bad as cancer, and in some ways worse.
But hey, lets not get lost in the quicksand of it all. About two months ago, I marked one year of living with a Lyme & Co diagnosis. A lot has changed. I’ve learned a lot. Right now, mentally, I’m not in a bad place. And I’d say that today anyway, things aren’t horrible on the physical side either. Like I mentioned earlier, writing is something I have not been able to do in a long time and here I am doing it. There is a long road ahead, I understand that now. And there is not a magic solution anywhere to be found.
You can’t solve Lyme with your mind, but your mind will tell you that you can. Reading that sentence over and over gives a good example of the state of my mind over the last 5 years of living with chronic illness. Throughout my life, I’ve solved many problems and climbed many mountains with my brain and my ability to do, perform, and accomplish. For the first three years or so, my goal was to return to my prior over-functioning state. With that particular mindset I hit a lot of concrete walls.
I’m not well by any means. There are more tests, doctors and medical crap in my near future. But one of the reasons I’m doing better is that I made a conscious decision to take my health into my own hands. If I am in my body enough and follow my intuition I can often tell what my body needs. I realized I was hyperthyroid, which happens a lot because I have no thyroid gland and my levels fluctuate all over the place on a regular basis. My mental health is really dependent on the proper level of thyroid and I don’t seem to notice that its gone hyper or hypo until its gotten way out of range. Blah, blah blah. Do you ever get tired of talking about your health issues? I do. After awhile it can feel like there is no life left, only illness.
I also decided to stop taking all oral antibiotics and rely only on herbal remedies after I had two experiences with (sorry for the TMI) having burning poop leaking out of my butt. That’s the best way I know how to say that. Lyme disease isn’t pretty, we all know that by now. Lyme & Co have apparently taken up residence in my right jaw, I might have a cavitation there, and now my TMJ joint is dislocated. I’ve been sitting in front of an infrared light I got at the hardware store and I think it helps with all of the head pain and stuffiness I have. Definitely the cheapest Lyme treatment I’ve encountered.
I want to work on my diet. I’ve been good at eliminating all the major offenders like gluten, etc. You know the list. My problem is adding back in. My appetite has been returning a bit lately and I really want to add more vegetables to my diet. I’m the skinniest I’ve ever been in my like a bag of bones. Just in time for Halloween though!
My Lyme Dr had to do a test regarding my mental status yesterday. It was alarming to me to see my brain become blank and literally shut down when asked to perform simple things. My Dr. says that can improve and I am trying to take her word for it because otherwise I will just add it to my already overwhelming worry pile.
Included in my worry pile are my diminishing finances, we all know that goes along with Lyme. There I go again. Back to the quicksand. Don’t want to go there today.
Time for my daily Epsom salt bath, served with a side of dry brushing and a few hits of Red Congolese.
I woke today from a sleep that was restless and full of dreams that shook my body like a boat in a storm. When I turn my head it swooshes like there is an ocean of thick fluid inside it. For what seems like forever now my brain has been at a flat line. There are no periods of feeling a little better. The pain is constant. I asked a friend to keep my son for a few days. I can’t handle the guilt I feel when I’m around him of all the ways I’m failing him.
I’ve been obsessed with suicide for a couple of weeks now. People who know me have known me to be depressed throughout my life so for them it’s just like me being myself. One of my sister’s excused herself from my life a few years ago because she just found it too stressful to be around me. Who could blame her? She likes her life orderly and neat and I’ve never been that.
I opened my computer and read (against my better judgment) a post by some ignorant MD in Montreal about how Lyme disease doesn’t exist. He described the lingering symptoms of Lyme as headache, fatigue, and joint pain. If only that covered my symptoms. I think I could handle those. He said people who have serious lingering symptoms of Lyme usually have some serious underlying disease like Cancer. The article made me really angry and I tried to comment on it but something went wrong. Apparently the universe did not want me to spew my toxic neon green Spirochete all over his pathetic post. Spirochetes aren’t real to him anyway, more like something out of a Dr. Seuss book.
It doesn’t help that the people I once called family share his opinion. They think I’ve convinced myself I have some strange disease so that I no longer have to work. They bemoan my fall from a professional career person to a bed ridden piece of crap. “She’s always exaggerated,” they say. I read about others who have Lyme whose families are steadfastly supporting them, and I wish that I had that.
The people who loved and supported me in my family are dead. I don’t know what they say about me. Sometimes I think they are rooting for me, other times I just feel silence. Dead silence.
I went into my therapist’s office last week with a list of things we would not be discussing. It included hospitalization (if I need to be hospitalized I’ll do it myself), whether or not I was sure my relationship is over (1000 times yes), whether I am eating or drinking (enough to stay alive) whether I am taking my meds (yes, the ones the insurance company substituted that do nothing for my suicidality), and the worst one of all “What are the doctors doing and what do they think is wrong?”
One of my Dr’s doesn’t even believe in Lyme disease. She diagnosed me as having Hashimoto’s thyroiditis, and recommended I have my thyroid gland removed (worst decision of my life). It’s ironic, she’s tested me dozens of times for Hashimoto’s, and I’ve never shown a positive result. I was diagnosed positive with Lyme via a blood test but to her chronic Lyme doesn’t exist. But don’t tell me to fire her. She provides me with pain meds I need desperately and as you probably know if you have chronic pain, most Dr’s these days would prefer their patients take ibuprofen than to have to deal with the regulations the government has imposed on them for trying to provide pain relief to their patients who really need it.
Last week I was thinking of a garden hose and an exhaust pipe. It turns out with today’s modern automobiles it just doesn’t work the way it used to.
I went to an Indigo Girls concert last week. I’d bought the tickets when I was feeling better and shall we say, more optimistic. I’m glad I went, and for a little while I was able to get outside of my death mission brain.
Right before the concert I had to go to the bathroom. I went looking for the closest one and found a disabled person’s one near where I was sitting. No one was using it and I tentatively walked in. I despise the term disabled but according to my insurance company I am. Most people don’t believe it, but I can’t work right now. I’m a psychotherapist and for two years of my illness I did my best to sit upright listening to patients trying not to squirm in my chair because of how much pain I was in. I never wanted them to think I wasn’t listening or that my discomfort was taking precedence over their problems. I took my role as therapist very seriously and considered it my life’s calling.
I digress. I was about to go into the bathroom when a woman with a walker came storming into the bathroom. She looked at me dubiously. “Do you need a handicapped bathroom?” She demanded.
“Not as much as you do,” I said squeamishly.
“Good,” she said pushing in front of me. “I need the raised toilet.”
I was standing there, sort of immobilized, feeling like a fraud, waiting for her to finish. She turned to me before she shut the door. “There are other bathrooms down the hill,” she said plainly.
I left the bathroom and began to walk down the hill. There were two gay men right outside the door who seemed to have witnessed my shameful dismissal from the bathroom. They both looked at me with disdain.
A couple of weeks ago I had two Ketamine infusions from the Dr. who thinks I have Hashimoto’s. I’ve had really good success with them in the past, often lifting the depression enough so that I could think clearly and have some perspective about this illness and this life I am living. They’re expensive, the total was over $600 and none was covered by insurance. I used the last credit card that had any room on it to pay for it. Instead of providing relief it just unleashed a barrage of unrelenting suicidal thoughts.
My partner and I are broken up now but still living together until she finds another place. This is the most putrid purgatory I have lived in for a long time. I dread her coming home each day. I keep thinking I need to sit down and write about why we are breaking up. But truthfully I can’t even remember. I don’t have the ability to give you some logical list of reasons why we are ending. I know that she’s hurt me in a thousand ways I can’t explain. Mostly I blame myself. I tell myself sometimes that we are breaking up because she is not who I thought she was in the beginning. But I don’t think that’s true. I think she is exactly who she was when I met her but that I chose to overlook the parts that were not compatible with me. At first I spoke up about those things but when that became too much effort I just went silent and learned how to keep the peace. I learned that she didn’t really enjoy hearing about things I thought about. I overlooked her “small untruths”. I allowed her to come between me and my son and I sat back and watched while she treated my son unfairly. I subjugated myself. So if anyone has a problem here, it’s me. Because the relationship was working out just fine for her, or at least that’s what she said.
The only person that can save myself from all of this is me, and I don’t have any faith in that person anymore.