August 2011
More good reasons to go wheat-free
// Filed in: Lyme Disease Diet|Chronic Lyme Disease
More good reasons to go wheat-free
Not only our physical health, but our mental health originates in our guts. People dealing with chronic Lyme disease symptoms have good reason to guard both of these states. I’ve been exploring why it’s so important to eat a healthy diet, and that means paying as much attention to what we don’t eat as to what we do. I’ve flirted with a gluten-free diet for months now, but something tells me that it’s time to give it up for good. At least for a month, and see how it goes from there. Want to plunge in and go gluten free for a month with me? Read on and think it over.
First of all, have you ever have a ‘gut feeling’ about something? Most people have. In fact we rely on those feelings to inform us in crucial ways. Our guts can warn us to get out of harm’s way, keep us from getting involved with business deals of a questionable nature, and alert us when a distant loved one needs our help.
When I ignore those feelings, I always wind up thinking I “should have listened to my gut.” You too?
Lately, my gut has been saying to cut out wheat. I’ve cut back on it, but haven’t ever gone without it for long. So I’m going to start tomorrow, as I’ve already blown it this morning with lox and bagels. I feel bloated. This is a disappointment, because I’ve been telling myself that I love lox on an everything bagel with vegan cream cheese, red onion, tomato and capers. However, this morning’s breakfast is still sitting in my gut, calling attention to the fact that it just isn’t getting digested right.
What can we expect to happen when we cut out wheat and gluten from our daily diet? Well, for one thing I expect my mood to lift. It’s fall, and I am in the school business. Every fall I get excited about new schedules, new people, new notebooks, you name it. I love school. But with the newness comes anxiety. And with the anxiety comes a sort of spirit-clenching mental habit of worry. Did this get done? Did that get done? You know what I’m talking about. Some things are under our control, some aren’t. So anxiety is usually generated out of what I cannot control. This stuff makes me moody. So perhaps a gluten-free diet will help me accept the things (and people) that I cannot change.
Another change I can expect from eating no wheat is a loss of puffiness. I have to say, that is something to look forward to. Chronic Lyme symptoms have kept me aware of the importance of taking anti-inflammatory supplements, such as liquid cod liver oil, and turmeric capsules. But still I often feel a little puffy around the waist and in my arms and face. Exercise helps, but the puffiness returns when I eat bread.
The biggest benefit that I can expect is an improvement in my mental clarity. Now that’s really exciting, considering that I deal with college students. When it comes to the information age, you can never quite keep up with the generation below you! They’re intensely savvy with computers and everything that I need to be. So, maybe I’ll be better equipped to keep up. I’m definitely looking forward to that.
If this works as well as I think it may, I might just go another month. Anybody game to try it with me?
Not only our physical health, but our mental health originates in our guts. People dealing with chronic Lyme disease symptoms have good reason to guard both of these states. I’ve been exploring why it’s so important to eat a healthy diet, and that means paying as much attention to what we don’t eat as to what we do. I’ve flirted with a gluten-free diet for months now, but something tells me that it’s time to give it up for good. At least for a month, and see how it goes from there. Want to plunge in and go gluten free for a month with me? Read on and think it over.
First of all, have you ever have a ‘gut feeling’ about something? Most people have. In fact we rely on those feelings to inform us in crucial ways. Our guts can warn us to get out of harm’s way, keep us from getting involved with business deals of a questionable nature, and alert us when a distant loved one needs our help.
When I ignore those feelings, I always wind up thinking I “should have listened to my gut.” You too?
Lately, my gut has been saying to cut out wheat. I’ve cut back on it, but haven’t ever gone without it for long. So I’m going to start tomorrow, as I’ve already blown it this morning with lox and bagels. I feel bloated. This is a disappointment, because I’ve been telling myself that I love lox on an everything bagel with vegan cream cheese, red onion, tomato and capers. However, this morning’s breakfast is still sitting in my gut, calling attention to the fact that it just isn’t getting digested right.
What can we expect to happen when we cut out wheat and gluten from our daily diet? Well, for one thing I expect my mood to lift. It’s fall, and I am in the school business. Every fall I get excited about new schedules, new people, new notebooks, you name it. I love school. But with the newness comes anxiety. And with the anxiety comes a sort of spirit-clenching mental habit of worry. Did this get done? Did that get done? You know what I’m talking about. Some things are under our control, some aren’t. So anxiety is usually generated out of what I cannot control. This stuff makes me moody. So perhaps a gluten-free diet will help me accept the things (and people) that I cannot change.
Another change I can expect from eating no wheat is a loss of puffiness. I have to say, that is something to look forward to. Chronic Lyme symptoms have kept me aware of the importance of taking anti-inflammatory supplements, such as liquid cod liver oil, and turmeric capsules. But still I often feel a little puffy around the waist and in my arms and face. Exercise helps, but the puffiness returns when I eat bread.
The biggest benefit that I can expect is an improvement in my mental clarity. Now that’s really exciting, considering that I deal with college students. When it comes to the information age, you can never quite keep up with the generation below you! They’re intensely savvy with computers and everything that I need to be. So, maybe I’ll be better equipped to keep up. I’m definitely looking forward to that.
If this works as well as I think it may, I might just go another month. Anybody game to try it with me?
Start where you are. Fight chronic inflammation.
// Filed in: Lyme Disease Symptoms|Lyme Disease Treatment|Lyme Disease Diagnosis|Lyme Disease Diet|Lyme Disease Bacteria
Lyme disease is a thief. Chronic lyme disease symptoms can go on affecting a person’s life for many years. Given the complexity of receiving a correct diagnosis, a person with an undetected, underlying Lyme infection may instead be labeled with RA, fibromyalgia, Chronic Fatigue Syndrome, MS, ALS, or almost anything from a truckload of other conditions.
Meantime, life goes on. Friends and siblings get jobs, travel, go to grad school, fall in love. They get married, have babies, and not in any particular order. But for the person with Lyme those fundamental pathways, common fruits of life we for granted, may simply not be an option. Lyme has stolen years.
But enough of spilled tears, right? The wisest thing anyone can do is to start where you are. If you’ve had it with chronic lyme disease symptoms, take heart. Many others have been in your shoes. And they’ve gotten through it. Regardless of the time and opportunities missed because of Lyme, there are many people living happy, loving, productive lives again.
Exactly how the stealthy Lyme bacterial complex works is still under scrutiny. Scientists and doctors, some who are also personally infected with Lyme disease, such as Dr. Eva Sapi and veterinarian, Lyme and immunology expert Dr. Scott Taylor, toil to understand and find a cure for Lyme. One thing we know for certain is that Lyme is an inflammatory disease, and chronic inflammation is the root cause of many life threatening conditions, including Lyme.
Cortico-steroids are commonly given to Lyme patients by doctors without any knowledge or clinical experience in diagnosing chronic Lyme disease symptoms. The faulty logic goes something like this: the patient is experiencing distress, inflammation is causing the distress, steroids (usually Prednisone) will reduce the inflammation and thus reduce the patient’s distress. Not! Predinose will supress the patient’s immune system, causing it to tolerate the Borrelia bacteria instead of attacking and killing it. The Lyme infection is almost guaranteed to get worse, not better.
What can be done about chronic inflammation? Are there safe prescription drugs available, and does your LLMD know about them? What about natural alternatives? Aside from fish oil, are there other products we can take to reduce this silent killer? Does physical exercise really help people dealing with chronic inflammation? Or can it hurt? In my next post, we’ll delve into the various ways to treat chronic inflammation.
Meantime, life goes on. Friends and siblings get jobs, travel, go to grad school, fall in love. They get married, have babies, and not in any particular order. But for the person with Lyme those fundamental pathways, common fruits of life we for granted, may simply not be an option. Lyme has stolen years.
But enough of spilled tears, right? The wisest thing anyone can do is to start where you are. If you’ve had it with chronic lyme disease symptoms, take heart. Many others have been in your shoes. And they’ve gotten through it. Regardless of the time and opportunities missed because of Lyme, there are many people living happy, loving, productive lives again.
Exactly how the stealthy Lyme bacterial complex works is still under scrutiny. Scientists and doctors, some who are also personally infected with Lyme disease, such as Dr. Eva Sapi and veterinarian, Lyme and immunology expert Dr. Scott Taylor, toil to understand and find a cure for Lyme. One thing we know for certain is that Lyme is an inflammatory disease, and chronic inflammation is the root cause of many life threatening conditions, including Lyme.
Cortico-steroids are commonly given to Lyme patients by doctors without any knowledge or clinical experience in diagnosing chronic Lyme disease symptoms. The faulty logic goes something like this: the patient is experiencing distress, inflammation is causing the distress, steroids (usually Prednisone) will reduce the inflammation and thus reduce the patient’s distress. Not! Predinose will supress the patient’s immune system, causing it to tolerate the Borrelia bacteria instead of attacking and killing it. The Lyme infection is almost guaranteed to get worse, not better.
What can be done about chronic inflammation? Are there safe prescription drugs available, and does your LLMD know about them? What about natural alternatives? Aside from fish oil, are there other products we can take to reduce this silent killer? Does physical exercise really help people dealing with chronic inflammation? Or can it hurt? In my next post, we’ll delve into the various ways to treat chronic inflammation.
Healing from Lyme - Part 3
// Filed in: Lyme Disease Treatment|Lyme Disease Symptoms|Lyme Disease Diet|Lyme Disease Diagnosis|Lyme Success Story
For several years, although I had worked my way to the point where I was well enough to work and follow a somewhat normal routine, I still doubted that I’d ever live a life of my own choosing again, where I wouldn’t wake up feeling like I had lead in my veins and my head wasn’t stuffed with cotton candy. Eating nutritious foods and exercising regularly are two important keys for maintaining my healthy state.
If you want to know how not to lie to yourself about your diet, try keeping a journal where you chart everything you eat. In one column write down the food you ate, and make a column next to it where you note how it made you feel. This is a very basic way to figure out exactly what you’re eating, not what you tell yourself you’re eating. Some doctors tell me that they have their patients keep a similar type of journal when they’re trying to identify food allergies.
My diet is made up of mainly vegetables, some tuna and wild Alaskan salmon, raw and stir-fried or steamed veggies & curry, some fruit, legumes, and breads or tortillas. Some of the bread I buy is gluten free and I like the pasta made from brown rice, but I am not particularly bothered by digestive issues, and regular bread works for me too. In general, if it’s wholesome food with not too many ingredients that I can’t pronounce or recognize, it works.
My current favorite food is a wrap. I love wraps because instead of bread, you’re using a thin tortilla, and you can pack them with all sorts of veggies and greens. Stir-fry is good for that too. A lot of vegetables taste excellent in a wrap or a stir-fry that aren’t that delectable when eaten raw or steamed. I don’t generally drink alcohol or eat sugar, although I will indulge occasionally in a beer or cookies, but not often. Alcohol and sugar pull the wool over my eyes. Literally. When I drink or pig out on sugary things I get Lymie. It’s awful to experience Lyme brain again. It’s so wonderful and amazing to have a clear head again, why go there?
I know you’ve heard this a million times, but remember to drink enough water! Liquids are needed to assist the lymph system. I drink water or tea all day long. Green, not black. Black makes me jittery. Coffee only as a treat very infrequently. Tea is alkaline, coffee is acidic and drinking it tends to make me feel chilly. Tea doesn’t do that.
Lately I’ve been drinking a lot of tea made from bamboo leaves. The bamboo leaf tea has about 350 mgs of silica per cup, it tastes great and also helps me sleep. This isn’t technically a real tea. It’s a tisane, or an infusion. Bamboo has the highest amount of silica, a basic mineral that our bodies slough off constantly in the form of dead skin cells, hair, and nail trimmings. Silica is the main ingredient in collagen, which is so essential to rebuild as collagen is destroyed by the Lyme bacteria.
Especially as we get older we need to be mindful of getting enough silica to maintain the levels we need for healthy hair, skin, nails and bones. Studies are showing that silica is the body’s delivery system for calcium. So if you have enough silica in your diet, the calcium can be delivered to the organs properly. As an interesting side note, studies are also showing that this tea can pull out the aluminum in the body and brain. Researchers are intrigued by this finding, and it may be quite useful in cases of Alzheimer’s.
Smoothies are a treat and a regular part of my diet. Delicious, fresh smoothies made of rice milk, berries, a banana and green food powder are very satisfying. Sometimes I put in protein powder if I’ve been working out particularly hard.
I’ve made other life style changes. The main one is that now I exercise religiously. I used to just dance and walk for exercise, but I wasn’t doing either with any sort of regularity. If it happened, it happened. Then about two years into my healing, my shoulder started to freeze up. I was so frustrated, because I was working really hard to clear up the nasty neurological, skin and heart problems I was having, and had begun to track some very good progress. Then one day I realized that I couldn’t move my shoulder and it was painful. It was disheartening. My partner suggested that I try some exercises, in particular push-ups. Hated those push-ups at first, but I was determined to fix this without drugs, and I did. It took about two years, but now my shoulder gives me very little trouble and I have full range of movement. That was the beginning of my now-regular exercise phase. I love working out now, but at first it was difficult. I hadn’t realized how out of shape I had gotten from being sick, and from my work life style, which is sitting at a computer all day (can you relate?).
I used an exercise CD at home for about a year before I had the nerve to join the Y and exercise in front of others. Then I decided to join a private gym that had something called a kinesis wall. Essentially, the kinesis wall is an apparatus with several stations that enable the user to get a rigorous, core-strengthening workout. Very much like Pilates. I took a weekly class with a very skilled coach, which got me started off on the right foot. I recommend classes instead of private coaching if you want to save some money. They’re fun, and also you meet other people, great for team spirit and camaraderie.
I’m fortunate in that I work at home. For the past 7 years I’ve been in charge of my own work schedule. That has been extremely helpful. If I’m honestly too tired to work I can take a nap. I can also stay close to the bathroom, which helps when you drink so much water.
My heart goes out to everyone who is suffering with Lyme and has to maintain a job where they have to leave the house every day. This can be a bear of an illness, and that life style can be merciless. If that is your situation, see if you can look into telecommuting, even part of the week. Staggering your work hours so you aren’t dealing with bad traffic patterns, a real stress-inducer, can help a little bit too.
So that’s where I’m at currently. Please tell me if any of this resonates, or helps to hear, or if you have an idea that you think could benefit others healing from Lyme. Do you keep a food journal, or an exercise journal? I’d love to hear about your journey and your results.
If you want to know how not to lie to yourself about your diet, try keeping a journal where you chart everything you eat. In one column write down the food you ate, and make a column next to it where you note how it made you feel. This is a very basic way to figure out exactly what you’re eating, not what you tell yourself you’re eating. Some doctors tell me that they have their patients keep a similar type of journal when they’re trying to identify food allergies.
My diet is made up of mainly vegetables, some tuna and wild Alaskan salmon, raw and stir-fried or steamed veggies & curry, some fruit, legumes, and breads or tortillas. Some of the bread I buy is gluten free and I like the pasta made from brown rice, but I am not particularly bothered by digestive issues, and regular bread works for me too. In general, if it’s wholesome food with not too many ingredients that I can’t pronounce or recognize, it works.
My current favorite food is a wrap. I love wraps because instead of bread, you’re using a thin tortilla, and you can pack them with all sorts of veggies and greens. Stir-fry is good for that too. A lot of vegetables taste excellent in a wrap or a stir-fry that aren’t that delectable when eaten raw or steamed. I don’t generally drink alcohol or eat sugar, although I will indulge occasionally in a beer or cookies, but not often. Alcohol and sugar pull the wool over my eyes. Literally. When I drink or pig out on sugary things I get Lymie. It’s awful to experience Lyme brain again. It’s so wonderful and amazing to have a clear head again, why go there?
I know you’ve heard this a million times, but remember to drink enough water! Liquids are needed to assist the lymph system. I drink water or tea all day long. Green, not black. Black makes me jittery. Coffee only as a treat very infrequently. Tea is alkaline, coffee is acidic and drinking it tends to make me feel chilly. Tea doesn’t do that.
Lately I’ve been drinking a lot of tea made from bamboo leaves. The bamboo leaf tea has about 350 mgs of silica per cup, it tastes great and also helps me sleep. This isn’t technically a real tea. It’s a tisane, or an infusion. Bamboo has the highest amount of silica, a basic mineral that our bodies slough off constantly in the form of dead skin cells, hair, and nail trimmings. Silica is the main ingredient in collagen, which is so essential to rebuild as collagen is destroyed by the Lyme bacteria.
Especially as we get older we need to be mindful of getting enough silica to maintain the levels we need for healthy hair, skin, nails and bones. Studies are showing that silica is the body’s delivery system for calcium. So if you have enough silica in your diet, the calcium can be delivered to the organs properly. As an interesting side note, studies are also showing that this tea can pull out the aluminum in the body and brain. Researchers are intrigued by this finding, and it may be quite useful in cases of Alzheimer’s.
Smoothies are a treat and a regular part of my diet. Delicious, fresh smoothies made of rice milk, berries, a banana and green food powder are very satisfying. Sometimes I put in protein powder if I’ve been working out particularly hard.
I’ve made other life style changes. The main one is that now I exercise religiously. I used to just dance and walk for exercise, but I wasn’t doing either with any sort of regularity. If it happened, it happened. Then about two years into my healing, my shoulder started to freeze up. I was so frustrated, because I was working really hard to clear up the nasty neurological, skin and heart problems I was having, and had begun to track some very good progress. Then one day I realized that I couldn’t move my shoulder and it was painful. It was disheartening. My partner suggested that I try some exercises, in particular push-ups. Hated those push-ups at first, but I was determined to fix this without drugs, and I did. It took about two years, but now my shoulder gives me very little trouble and I have full range of movement. That was the beginning of my now-regular exercise phase. I love working out now, but at first it was difficult. I hadn’t realized how out of shape I had gotten from being sick, and from my work life style, which is sitting at a computer all day (can you relate?).
I used an exercise CD at home for about a year before I had the nerve to join the Y and exercise in front of others. Then I decided to join a private gym that had something called a kinesis wall. Essentially, the kinesis wall is an apparatus with several stations that enable the user to get a rigorous, core-strengthening workout. Very much like Pilates. I took a weekly class with a very skilled coach, which got me started off on the right foot. I recommend classes instead of private coaching if you want to save some money. They’re fun, and also you meet other people, great for team spirit and camaraderie.
I’m fortunate in that I work at home. For the past 7 years I’ve been in charge of my own work schedule. That has been extremely helpful. If I’m honestly too tired to work I can take a nap. I can also stay close to the bathroom, which helps when you drink so much water.
My heart goes out to everyone who is suffering with Lyme and has to maintain a job where they have to leave the house every day. This can be a bear of an illness, and that life style can be merciless. If that is your situation, see if you can look into telecommuting, even part of the week. Staggering your work hours so you aren’t dealing with bad traffic patterns, a real stress-inducer, can help a little bit too.
So that’s where I’m at currently. Please tell me if any of this resonates, or helps to hear, or if you have an idea that you think could benefit others healing from Lyme. Do you keep a food journal, or an exercise journal? I’d love to hear about your journey and your results.
Healing from Lyme - Part 2
// Filed in: Lyme Disease Diagnosis|Lyme Disease Symptoms|Lyme Disease Treatment|Lyme Disease Diet|Lyme Success Story|Lyme Disease Doctor
Before receiving the correct diagnosis for Lyme and coinfections, a dermatologist had put me on Prednisone to try and control my severe skin rashes. This was a nearly fatal mistake on his part. It marked a crisis point in my illness. I also received lectures by this doctor about how I “really should stop scratching myself raw while I was sleeping.” I wasn’t sleeping, and I knew he was wrong. The skin on my body wasn’t opening up due to scratching it. It was infuriating not to be heard.
He considered me a nuisance, because at each appointment I’d open my notebook and read another question from my list, which he wouldn’t answer. Bless his heart, as we say in the South. He wouldn’t even look me in the eye or talk to me. When he had something to say he addressed my mother instead, who drove me to these appointments and helped me get through them.
A doctor worth her salt who suspects that a Lyme infection is underlying will be the first to tell you that corticosteroids such as Prednisone are contraindicated. That means they are precisely what you do not want to do. The dermatologist who wouldn’t listen to my questions seemed to have no professional curiosity about my skin rash. If he’d looked into it, he might have saved me several terrible months of pain, and perhaps even several years of cognitive disorientation. Prednisone will replicate the Lyme bacteria. It will drive the bacterial complex further into the body and across the blood-brain barrier. That is what had happened to me.
In spite of the fact that my intuition urged me not to, I continued taking the Prednisone for 16 days (he’d prescribed it for 20). On the 16th day, I made the decision to stop although the dermatologist, and a couple of my dear friends, warned me not to. The doctor must know what he’s doing, they said. You’re seriously ill and you should listen to him. The mental stress and anxiety caused by going through this process, on top of the continuous physical pain, was nearly unbearable.
We’re conditioned to listen to our doctors, take the medicine they prescribe, and to take what they say as the word of God. From my current vantage point, I look back and wonder what on earth I was thinking. How could I have thought that this guy was helping me? He kept me coming back because he wanted to biopsy my skin rashes. But the rashes lingered and didn’t improve. He was ready to perform a punch biopsy on my raw skin. I’m grateful that he kept waiting for the rash to improve before he did. He knew that a biopsy would likely make the rash worse. Partly because I so feared having that punch biopsy and partly because I felt like I was in the enemy’s camp when I went to his office, I simply stopped going.
That’s when I found a naturopath, Tod Thoring, in Arroyo Grande, CA. It was like being introduced to an angel, and it was another turning point in my long battle. This time it was a positive one. This was the beginning my new life. I’d found Dr Thoring and lucked into a situation where he and a very smart group of Lyme experts were putting their heads together to try and help people in dire straits, like me.
Today I consider myself lucky in every way. But that said, I know I’ve also battled my symptoms with every ounce of strength I had. And without the support and love of my partner and my mother, I wouldn’t have made it. I’m ashamed to say this, but when I was in the acute stage, if I’d had a gun, I probably would have pulled the trigger. The pain in my skin and muscles was so severe, so constant and unbearable. Instead of letting me hurt myself, my partner handed me a paintbrush and some tubes of paint. He supported me emotionally as well as he could, and set me on a path to healing.
During the acute stage some of my other symptoms were insomnia, hypersensitivity to light (especially florescent) and to being touched. I couldn’t stand or walk without holding onto a chair or a wall. I was dizzy all the time. My brain wasn’t functioning well enough to work or write, and when reading, comprehending even a simple paragraph was an insurmountable challenge. During this time, in spite of my state, I began interviewing doctors who I thought might have some clue about how to treat Lyme disease. I was determined to help other people like me who I knew were out there, going through this horrible process and needing to hear what the doctors had to say about it.
Navigating the technical equipment and recording the interviews was hugely challenging. Once, I could barely hear the doctor I was speaking to, and couldn’t figure out how to fix it. I strained to hear her through the entire session while her voice came through like a little mouse in my ear. It wasn’t until after I thanked her and hung up that I realized I had put my earphone in backwards.
I ached to be held and comforted, but couldn’t stand to be touched. I felt extremely lonely and isolated. I had horrible mood swings. I hallucinated. Once, while in the bathroom, I heard my father say my name. He died when I was 15 years old, more than 30 years ago, but I instantly recognized his voice. I heard my telephone ringing and a little girl on the other end asking for someone who didn’t live there. That particular hallucination happened a few different times. Each time, the calls upset me enormously, and she always called when I was home alone. I couldn’t understand why this little girl kept calling back, insisting on talking with someone who didn’t live there. Weeks later, I realized that I’d hallucinated her and all the conversations we’d had.
In Part 3 I’ll outline my diet and exercise routine. I’ll also pass along advice and suggestions from some amazing individuals. You’ll hear more about the Lyme success stories I’ve heard along the way.
He considered me a nuisance, because at each appointment I’d open my notebook and read another question from my list, which he wouldn’t answer. Bless his heart, as we say in the South. He wouldn’t even look me in the eye or talk to me. When he had something to say he addressed my mother instead, who drove me to these appointments and helped me get through them.
A doctor worth her salt who suspects that a Lyme infection is underlying will be the first to tell you that corticosteroids such as Prednisone are contraindicated. That means they are precisely what you do not want to do. The dermatologist who wouldn’t listen to my questions seemed to have no professional curiosity about my skin rash. If he’d looked into it, he might have saved me several terrible months of pain, and perhaps even several years of cognitive disorientation. Prednisone will replicate the Lyme bacteria. It will drive the bacterial complex further into the body and across the blood-brain barrier. That is what had happened to me.
In spite of the fact that my intuition urged me not to, I continued taking the Prednisone for 16 days (he’d prescribed it for 20). On the 16th day, I made the decision to stop although the dermatologist, and a couple of my dear friends, warned me not to. The doctor must know what he’s doing, they said. You’re seriously ill and you should listen to him. The mental stress and anxiety caused by going through this process, on top of the continuous physical pain, was nearly unbearable.
We’re conditioned to listen to our doctors, take the medicine they prescribe, and to take what they say as the word of God. From my current vantage point, I look back and wonder what on earth I was thinking. How could I have thought that this guy was helping me? He kept me coming back because he wanted to biopsy my skin rashes. But the rashes lingered and didn’t improve. He was ready to perform a punch biopsy on my raw skin. I’m grateful that he kept waiting for the rash to improve before he did. He knew that a biopsy would likely make the rash worse. Partly because I so feared having that punch biopsy and partly because I felt like I was in the enemy’s camp when I went to his office, I simply stopped going.
That’s when I found a naturopath, Tod Thoring, in Arroyo Grande, CA. It was like being introduced to an angel, and it was another turning point in my long battle. This time it was a positive one. This was the beginning my new life. I’d found Dr Thoring and lucked into a situation where he and a very smart group of Lyme experts were putting their heads together to try and help people in dire straits, like me.
Today I consider myself lucky in every way. But that said, I know I’ve also battled my symptoms with every ounce of strength I had. And without the support and love of my partner and my mother, I wouldn’t have made it. I’m ashamed to say this, but when I was in the acute stage, if I’d had a gun, I probably would have pulled the trigger. The pain in my skin and muscles was so severe, so constant and unbearable. Instead of letting me hurt myself, my partner handed me a paintbrush and some tubes of paint. He supported me emotionally as well as he could, and set me on a path to healing.
During the acute stage some of my other symptoms were insomnia, hypersensitivity to light (especially florescent) and to being touched. I couldn’t stand or walk without holding onto a chair or a wall. I was dizzy all the time. My brain wasn’t functioning well enough to work or write, and when reading, comprehending even a simple paragraph was an insurmountable challenge. During this time, in spite of my state, I began interviewing doctors who I thought might have some clue about how to treat Lyme disease. I was determined to help other people like me who I knew were out there, going through this horrible process and needing to hear what the doctors had to say about it.
Navigating the technical equipment and recording the interviews was hugely challenging. Once, I could barely hear the doctor I was speaking to, and couldn’t figure out how to fix it. I strained to hear her through the entire session while her voice came through like a little mouse in my ear. It wasn’t until after I thanked her and hung up that I realized I had put my earphone in backwards.
I ached to be held and comforted, but couldn’t stand to be touched. I felt extremely lonely and isolated. I had horrible mood swings. I hallucinated. Once, while in the bathroom, I heard my father say my name. He died when I was 15 years old, more than 30 years ago, but I instantly recognized his voice. I heard my telephone ringing and a little girl on the other end asking for someone who didn’t live there. That particular hallucination happened a few different times. Each time, the calls upset me enormously, and she always called when I was home alone. I couldn’t understand why this little girl kept calling back, insisting on talking with someone who didn’t live there. Weeks later, I realized that I’d hallucinated her and all the conversations we’d had.
In Part 3 I’ll outline my diet and exercise routine. I’ll also pass along advice and suggestions from some amazing individuals. You’ll hear more about the Lyme success stories I’ve heard along the way.