Microbiome Research Will Change Our Approach

The research surrounding the microbiome is absolutely fascinating stuff. Could it help us one day cure or predict disease? Could it help us better treat celiac disease, Lyme Disease, cancer, even diabetes? It will most certainly change the way we approach our health, food, and environment.

Microbiomes are the communities of microorganisms that live on or in people, plants, soil, oceans, lakes, rocks, and the atmosphere. Recent discoveries have generated a new view of the biological world, one that recognizes that plants and animals are actually meta-organisms containing one or many microbial species. Inanimate surfaces, from rocks to keyboards, are likewise swarming with microbial life.

~National Microbiome Initiative

We first discussed the microbiome on this blog with Dr. Alessio Fasano, MD, Chief of Pediatric Gastroenterology and Nutrition at Massachusetts General Hospital, and is the Director of the Center for Celiac Research. His ground breaking research had expanded into the microbiome, including studies on the microbiome in the gut and how that protects us from disease; as well as the gut’s relationship to the brain.

A recent article from NPR.org takes us a little further into the laboratory. Scientists are actually using food like sourdough as the "lab rats" in their experiments. Rob Dunn, a biologist out of North Carolina University, is leading an international team on the Sourdough Project. These researchers are using sour dough bread starters from home cooks all over the world. It is a citizen-science initiative," according to the NPR article. This is the ultimate collaboration - different disciplines, labs, world-wide, and with scientists and normal folks like you and me. We all affect each other. Even down to the little bugs that live in, on and around us. Why not work together?

Why sourdough, you ask? It is a fermented food, which means that some of the good bacteria that we need to digest and live are a part of their recipe. Sourdough and kimchi only have a few strains of good bacteria, which make them easier to study. Cheese rinds are more complex and their microbiome is actually similar to the one on your skin. Scientists can continually apply what they have learned from a simpler system (like sourdough), to more and more complex microbial systems, like cheese rinds, our skin, our gut, and our soil. How cool is that?

In recent years, scientists have learned that microbiomes have an outsize influence on nearly every aspect of the world, including health, agriculture and the environment. Imbalances in our gut microbiomes, for example, have been linked to a laundry list of health issues, including obesity, colon cancer and autism. Last year, then-President Barack Obama launched the National Microbiome Initiative, a half-billion-dollar plan to study the microbiome.

~NPR.org, July 17, 2017, More than Bread: Sourdough As a Window Into the Microbiome
Reporter, Marcus Woo

Dear Friends,

This is my current specialist who is treating me for complex Lyme, Dr. Ronald Stram. He is a compassionate, smart man who is urging all doctor's to become educated as "not just literate, but actively seeking physicians" - and to make it part of their diagnostic differential. In other words, when someone comes in with bizarre symptoms, don't just ignore it, or work with standard tests. Learn about how this infection behaves, how the 100+ (in some countries 300+) possible co-infections behave and how the symptoms present outside of the tests, AND use other blood work - such as how the immune system is functioning. There are specific indicators in the immune system that can be tested to see if it is suppressed - and how.

Favorite Quotes from Dr. Stram:

"40% of Lyme patients end up with long term health problems. Catching it earlier brings those numbers way, way down."

"Lyme Disease Tests are 50% accurate. What scientist would accept a test like that?"

"“The best practice of medicine involves continual feedback from patients, research, labs, and analysis resulting in appropriate action.”

“It can leave you feeling hopeless. That’s when you have your mother or your father or your sister or your brother saying, ‘C’mon, you can take this pill.’”

... or your wonderful friends or adopted family of loving, supportive co-horts.

With Delicious Wishes,

Elisabeth

PROGRESS UPDATE ON ELISABETH, THE TENDER FOODIE

Hello, Sue Chaitin here with a little progress on Beth. Many people ask if she is getting better. The answer is both yes and no. Lyme is a complicated disease to treat, and she has “won the jackpot,” as the doctor told her, on the type and number of co-infections, as well. She has several co-infections that she got when the tick bit her, and some of them are very, very tough. She continues to improve, yet still has many frustrating and sometimes frightening ups and downs. She does her best to take them in stride. Right now, she is grateful to be able to drive to get groceries and to be able to take care of her daily needs. She couldn’t do this when we left for Albany in May. I told her that I don’t know how she does it, and she responded, “I don’t know either!” She wants to be able to get back to work full time, and is using her time as wisely as possible until then to start writing again.

Her physician said that recovery usually takes a seesaw type of pattern. He asks her the same 2 questions upon every visit: what is better than last time? What is worse than last time? Then asks the same to questions to compare her progress from when she first arrived. He is looking to see that there is a slow, steady upward trend, and that the ups and downs follow that trend. He is also looking very specifically at the symptoms that line up with each co-infection. Her muscle weakness, for instance is better, yet she still have acute episodes where she suddenly feels like she can’t walk. This can come on suddenly now, but leave within a day or two. As long as these symptoms “move through” and dissipate, this can be a good sign that they are being drawn out and handled by the current treatment plan. Her brain function and speech stay consistently better and better, and her vision is getting back to normal. Again, ups and downs, but a steady upward trend here. Her digestive issues are still a problem. What had not been improving was her heart symptoms and some neurological issues where limbs spasm and sometimes go numb. She had been waking up every 2 hours throughout the night soaked in sweat and jolted out of bed by a pounding heart. Her doctor then worked with two naturopaths to address this, as the drugs were not handling the night terrors and associated heart issues properly, and her body was stuck in a fight or flight pattern that had a mind of its own. Thankfully, with what she is calling, “her magic drops” from this new course of treatment, the night terrors and heart palpitations are starting to dissipate and she finally has been getting a few straight hours of sleep. Sleep will also help her progress.

The other issue that has gotten worse, are her allergies to chemicals in perfumes, lotions, and detergents. This is particularly frustrating as many new patients, or relatives of patients who come to visit the IV room, forget that perfumes are not allowed in that room. She has to quickly exit the room as her lungs start to burn, fill up, and she gets dizzy and nauseated. This is not uncommon for Lyme patients whose immune systems have been hammered. Another patient used to pass out when exposed to perfume. This patient was able to, when the Lyme infections were more under control, heal from that. We hope this happens for Beth, as well. The nurses are wonderful, and quickly relocate her to another space, and the entire staff at Stram is working to help minimize this risk for her and other patients.

She has had these infections for a really long time, however, so the long term prognosis is still in question. Also, testing is not very sensitive and prohibitively expensive, so the physicians have to rely on symptoms. Physicians can’t, like with other infections, treat and then test to see if everything is “gone.” She was recently off of the IV antibiotics for a week to see how she would do. Some symptoms stayed steady, while others, like the heart and neurological issues got worse. And because it kept her from sleeping, she was miserable. As a result, she is back on IV and will taper off over the next few weeks, and then re-evaluate again. This may have to happen several times until the symptoms resolve, and hopefully go away or into a remissive state. A long treatment was something that we had expected, and why it is so important for her to be able to stay with a physician who is on the forefront of treatment.


Here is something she posted on Facebook that gives you a quick insight into what she goes through:

Saturday, I stood in the middle of Target, with my legs giving out from under me, acutely, my muscles just weakened, and I wasn't sure if I would make it back to the car. I did. But that just made me more determined to wear these today (see photo at top.) The doc said that improvement takes a seesaw like pattern. And to not be discouraged by a downward drop, but look for a slow, general upward trajectory. Pink high heels qualify, I think. Flip flops in the bag just in case. But these are more fun to look at while getting drugged up.

We really appreciate your continued spiritual, emotional, and financial support, it means so much. It is very stressful for Beth to be so ill, and know that her life depends upon money. She is with some of the best experts in the field of Lyme Disease. Your continued financial support will help her finish this course of treatment and stay safe. We will continue to keep you posted! Beth has been keeping a diary when she can, as it is very therapeutic (especially for a writer!), and will start to back fill some of the posts so that the dates will be in some kind of order. So look for more of the "Love Bite Diaries" soon.

Sincerely,

Sue Chaitin

 June 24, 2016

What Makes You Strut?

There are 3 steps leading toward the IV room at the doctor's office, and I just sorta trotted up them. I shocked myself and exclaimed to one of my nurses, Wendy, with a few tears, "I just kinda ran up the steps!" We celebrated for a moment. Me in my flip flops, and she with a syringe in her hand. Quietly, but truly celebrated with that little spark of spontaneous joy. I love Wendy.

It is remarkable what an infection can do. Just a few weeks ago, I was having a great deal of trouble going up and especially down even one step, because my muscles were becoming shockingly and suddenly weak. I'd see a step, panic, and then strategize how I would make my way down. A flight of stairs took an odd amount of courage. I lived in a second floor apartment and it was literally 24 hours between my ability to walk down the steps without blinking, and then pausing in fear as if I were at the top of Everest. If someone were watching, I tried to walk down like a super model, but could see how dreadfully I failed by the looks on my friend's faces. I think I take so many pictures of shoes and my feet, because in May, I was beginning to wonder if I would be in a wheelchair by June. Lyme likes to attack ligaments and joints, and for me it is the ligaments in the hips and shoulder - this time on my left side, and more recently my left knee and elbow, as well. Then all of my muscles got weak. When this first started, it focused more on my right side, but at my sickest I would wake up with all of my limbs temporarily paralized for hours. The fatigue then, was stunning. Neverending. But at that time I was told that I would be lucky if I lived.

But I did live. In February, I as I started feeling like myself again, I had moments that I could skip around like a teenager. I love to move. Then the door froze shut behind me, I was without a coat, and my skippy little feet found a patch of ice outside and hit only one thing - my head. Concussion.

I was starting to work out again on my Total Gym after adjusting my IV treatment at my regular physician's office in Michigan. As the infection was killed off, I could build my muscle back up again, but I could tell there was something blocking my progress. In 2013 and 2014, I was having trouble getting out of the car without falling. My left leg just couldn't hold any weight on its own. I couldn't open doors with my left arm, or hold anything reliably in my left hand. It was simply too weak.

A couple of years before that, I was doing handstands in yoga class. After working my way out of a terrible relapse that happened shortly after I moved to Michigan, I got my stiff back into backbends again, and felt my power return. I would go from very athletic to feeling like aliens took over my body. Once, my muscles were spasming so severely that my Dad brought me to my medical masage therapist, and the therapist had to bring me home and carry me inside. This is scary stuff. Each relapse was brought on by extreme stress and the lack of my own knowlege as well as medical knowlege about Lyme Disease and its co-infections did nothing to stop it. I had never, until recently, heard the word, "co-infection."

Co-infections are one of 16 ways, according to Dr. Horowitz, that keep people with Lyme sick - chronic, they call it. I hate that word, "chronic." But so it has been.

Now, I wait to see which co-infections I actually have.

Each time I relapse, I put out a pair of beautiful high heeled shoes to keep me going toward a goal. I put them where I can pass by them every day. I keep them out to remind me that there is beauty in the world, and people to see, and streets to strut. I like homework, you see. I like something to concentrate on besides feeling like crap. "Hope" is too namby pamby. It feels like a cruel, unattainable joke with a bad, bad punchline. Homework, now that I get. A target, a goal. A bullseye.

Pink high heels.

The Love Bite Diary started as notes to friends. These are friends from all over the world, brought to my laptop through that sorcery called Facebook. Until I catch up, the entries of the diary will not match the dates of the posts. I hope to add the stories of some of the incredible people I am meeting. In the meantime, I hope you are glad to be on this exploration with me, and that it is helpful to each of you in some way.

~ Thank you, Elisabeth

DATE: JUNE 19, 2016

Still Facing the Stairs

Things are continuing to progress here - I am walking better, although the stairs still terrify me. My speech is almost back to normal, although my neurological issues continue - my brain is on a 2 or 3 second delay behind my intention, and driving is tough, as mild spacial issues come and go like how wide the exit ramps are, etc. So it is great that I am just down the street from the doctor's office and treatment center now.

But this also makes it continue to be difficult to communicate. Especially about detailed allergen research on any medication, especially oral meds. Oral medications use fillers that include wheat, dairy, corn and tapioca. Tapioca has been a very common gluten-free filler or starch. It flies through the air with the greatest of ease and lands anywhere in the factory - and on products that don't contain it in their ingredients. It took a dangerously building reaction to make me realize why I was throwing up, swelling up, and feeling little steel fingers grab my throat after eating foods that never bothered me before. Vitamin C is sometimes derived from tapioca, too. More on that later.

We Affect Each Other

When I first told my friend Sue what my secret life was like (when it was secret), she said,"Thank you for sharing this with me. This sucks! This must end. You are going to get fixed no matter what it costs." She wondered why I was hiding. She called me up and asked. She was hearing me slur my words as I tried to cover it up. She saw me grab onto handrails like they were life rafts as I gingerly went down stairs and had noticed that I was falling a lot. She could hear that I had given up.

Sometimes we just need someone to care enough to notice.

This relapse had actually started with my left arm a few years ago. It became useless. I was doing handstands and walking on my hands, and then found that I couldn't support my weight on my arm anymore. I went to different doctors. Some looked at my rotator cuff and prescribed physical therapy (which did nothing or made it worse), others just said, "huh."

Even the doctors who knew I had been diagnosed with Lyme.

I got back into treatment, and got back on my feet. Thought I was OK. But, there was an enormous amount of building and long-term stress in my life over those years, and my body just couldn't take it anymore. As soon as I stopped the treatment, my entire left side slowly became so weak I couldn't put weight on my left leg. Then my knees "disappeared."

As many experienced Lymies have said, "Lyme Disease loves stress."

If you are out there an experience similar bizarre things that come and go and make you feel suddenly older or hermit-like, I hope you have someone who reaches into your business and pulls you back out. If not, gather your britches and fight for yourself. You are not crazy. You are stronger than you think you are. We are ultimately in charge of ourselves, but, opening up to a trusted friend also opened the door to a new and necessary kind of support that I've never had before.

We need each other. We affect each other. So much. I learned that it is OK to be the weak one and need help. I hate that. I really, really hate that. I want to be the mother hen that gathers people in and helps them heal. But it is OK. To need help. It is OK, because it is the truth. Don't let anyone tell you that it isn't. Even if those people are those you love. Or "experts."

Thus goes this leap of faith. And an unknown road ahead.

The Love Bite Diary started as notes to friends. These are friends from all over the world, brought to my laptop through that sorcery called Facebook. Until I catch up, the entries of the diary will not match the dates of the posts. I hope to add the stories of some of the incredible people I am meeting, offer practical advice as I learn and get more on my feet, and eventually interview experts in the treatment of Lyme Disease. And recipes - in time, there will be recipes. In the meantime, I hope you are glad to be on this exploration with me, and that it is helpful to each of you in some way.

~ Thank you, Elisabeth

June 12, 2016

The Beauty in the Break Down

Thursday, I broke down at the doctor's office. I absolutely sobbed in front of the practice manager. So many things are hitting me at once, struggling with symptoms as I wait for all of the blood work to come back, not sleeping, slurring my words like a sailor on leave, handling the initial treatment plan and the changes in it, looking at the bills, getting to know a new nurse, finding out that my insurance subsidy was cancelled, running into perfumed people and having to run away (hobble desparately) from them as my lungs fill up, moving to a new, albeit temporary home when I feel like a truck and all of his tiny truck cousins hit me, stuff like that.

It sometimes feels like this world simply doesn't want me here. I beg to differ.

But then Thursday night, I slept a little bit. By Friday afternoon, I felt like trying the elliptical machine that is set up in the IV room at the medical center. The nurses encourage patients to slowly move their bods with a sexy little oxygen tube up the nose because it helps the IV drips go deeper into your system. I hadn't had the heart to do it yet - I tried the treadmill one day, but it felt like I was, as one patient put it, "walking on baby deer legs" with a tiny elephant settling his ample buttocks upon my chest, and then schooching around to get comfortable. But Friday, I was able to walk slowly on the elliptical for 5 minutes, and then another few, and then another few, and I could feel that my body has a lot of strength in there somewhere.

Some days I can walk. Other days it feels like my kneecaps are missing or about to snap in two. Or like Harry Potter did when he was the victim of a nefarious spell, rendering him boneless.

Saturday, my friend John came up from New York City after finding clothes that were not dried with Bounce, and to help me move into the new apartment. He walked into the heavily scented leasing office at the apartment complex to get the keys for me, since my lungs couldn't walk in there. He then cheerfully moved the bins and suitcases like they were fun little marshmallows. He patiently watched me eat some food at home, then plopped me down at an outdoor restaurant so he could sup, where real people and trees and sunshine lived. “So, how did I do with the no scent clothes? I did good, right?” He did good.

Saturday night I slept for several hours at a time. Today the tiny elephant seems much less interested in my chest. So, as my immune system gets supported and infections start getting a slap on the wrist, and loving friends step in to help, Health, like Kilroy peers warily over this wall that has separated me from life. Then, this afternoon I turned the oven on. The fumes from the oven cleaner that was sprayed but not wiped out before I got there almost knocked me out. I stumbled gagging into the bedroom to call maintenance to clean it. He sorta did, but Michael the maintenance guy was very kind and took it as seriously as he could. “This cleaner is non-toxic,” he said, then nodded genuinely as I retorted, “perhaps for you.” And I highly doubt that it is non-toxic for him. Someone like me is just that wonderful red flag of society. He put an industrial size fan in the apartment to air it out as the rest burned off. This evening, I am trapped in my bedroom, windows and doors wide open on this cool, wet afternoon and evening, eating my first food of the day at 6pm. The oven is off, but the fumes are still there at 8:27pm. My poor lungs.

Putting the Pieces Back Together As I Find Them

Oxygen & writing glasses are so sexy.There is a long road ahead, and Monday I meet with the doctor to go over all of the blood work. Wish me luck - my hope is that the co-infectons are the kind that can be eradicated for good. At the least I will have the right plan this time to help me manage this and any relapses before they happen and be in a better position to do so, thanks to all of you. I write to you today, not because I want to complain or ask for sympathy, but because I am considering blogging about Lyme Disease. I’ve blogged about food and food allergies before but have never been comfortable blogging much about MY food allergies, let alone a mystery illness and now a complex, infectious, tick borne disease at which people have tended to roll their eyes. YET - so many people have had their lives completely altered from it, and it is one of the fastest growing diseases with such little knowledge gained in the medical world to support the patients. In order to treat patients properly, the medical system and thinking will have to be turned on its head. Can I help by writing? I don’t know.

My plan for tenderfoodie.com, before I had to abandon it, was to start with food and immune issues, then go into other diseases like Lyme as I learned more about it, and AFTER I was triumphant in my battle so I could keep myself out of it. I wonder what you all think about just writing as the fires are burning and before I know what will happen - it just doesn't feel right to be a writer and be silent if writing about it can help. I value my privacy dearly, but there is so little of that left now! There will be haters as there is a huge and ridiculous divide in the medical community STILL that claims Lyme is not real. Why? I have no clue. It is real. Besides myself, I have seen so many other patients on the broad rainbow of Lyme symptoms. Some people walk around and look fine and feel fine, while others look fine but are quite ill and have learned to mask their symptoms. Some have been disabled for years – stalked by insurance investigators looking for any excuse to revoke claims. Still others have lost the ability to move and walk and talk without help. This is a tragic thing to behold. Some have died because they had no help. Some are living in mystery, shamed by family, friends, employers or doctors because mysteries are great until it involves someone’s health. We want our money’s worth out of our relationships, don’t we? At this clinic, very severe cases seek healing, and I have been seeing more of these firsthand. Jumping into the conversation personally will invite comments, well-meaning or shaming that will upset me. Insecurities of other people and of my own will arise. I am not sure if I can handle it.

Right now, I need to focus on my own healing. I need to start working again. This is a priority. But as I heal, I write. I can’t help it. As I get my writing faculties back, and the muscles in my arms and hands function more consistently; as I see the seriousness of Lyme around me, talk to more and more Lyme patients and hear the nurses’ most incredible perspectives, I feel an overwhelmingly protective battle cry. It feels like it is time to appear between the trees like Kenneth Branagh in his St. Crispin’s Day Speech as Henry V: “for he that hath no stomach for this fight, let him depart.”

It feels like this needs to get personal, “ … Then will he strip his sleeves and show his scars and say, ‘these wounds I’ve had on St. Crispin’s Day!'”

And that the timing might be right, “… All things be ready if our minds be so!”

You are helping me, and with your support, maybe blogging and showing my wounds a little can help others. I am putting another toe in the water, here.

Please feel free to comment below or send your thoughts to me in a private email. I appreciate anything that you have to say.

The Love Bite Diary started as notes to friends. It was therapeutic, as a writer and as a human, to simply express a long held secret. I was struggling in and out of physical functioning and brain firing, but my friends made it feel safe to write, and encouraged me to do so, when I could. These are friends from all over the world, brought to my laptop through that sorcery called Facebook. Until I catch up, the entries of the diary will not match the dates of the posts, as many entries had to be heavily edited and back dated, after I a great amount of healing - as I was in no shape to write at all for several months. I hope to add the stories of some of the incredible people I am meeting, offer practical advice as I learn and get more on my feet, and eventually interview experts in the treatment of Lyme Disease. And recipes - in time, there will be recipes. In the meantime, I hope you are glad to be on this exploration with me, and that it is helpful to each of you in some way.

~ Thank you, Elisabeth

May 26, 2016

A big update!

I am going to Albany, NY on Sunday and have an appointment with a top Lyme specialist there, Dr. Stram, who works very closely with Dr. Horowitz, an internationally recognized expert who is fully booked, and unable to accept more patients. Although Dr. Minkoff in Florida is another physician who is recognized for his excellent work, I keep hearing success stories about Dr. Horowitz’s protocol, and when a last minute appointment opened up with Dr. Stram, who uses this protocol, I grabbed it. It appears that the Lyme has traveled to my heart and lungs, and this is the urgency that is pushing me to find exactly the right physician and do it quickly. Thanks to you all, I have enough money to at least get started with him and to be able to jump on this appointment, and am acting on faith that the rest will come in as needed. Sue keeps telling me to stop thanking her, but she will have to put up with eternal gratitude for everything that she has done and is doing. Thank you, Sue. And thank you to everyone who has stepped in to help in some way. I feel supported and loved, and grateful.

Important Information from the Experts

As I learn for myself, it is clear that we all need to learn more about Lyme Disease. Here is some excellent information from Dr. Richard Horowitz, M.D., the physician mentioned above. He is the New York Times Best Selling author of "Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease." Lyme is on the rise, so please read and share the article below. This is one bug bite that .... if you are informed and act quickly ... if you get the right physician and the right treatment for the specific infections that were transferred.. and get that treatment for a long enough period of time (longer than the CDC suggests) ... you can beat Lyme and many of its co-infecitons. If you don't, the consequences can be devastating and life changing beyond belief.

The Lyme disease debate: Can the condition be chronic?

Read or listen to the interview in full, but here are some of the highlights:

Dear Medical Community, Stop Fighting and Start Learning

There are two sets of guidelines for diagnosing and treating Lyme. One is by the Infectious Disease Society of America (IDSA) and the other is by ILADS — Dr. Horowitz was one of the founding members of ILADS, the International Lyme and Associated Disease Society. Here is what he says about the controversy:

These two guidelines are different. One says the tests are reliable and you can cure it with 30 days, and the other guidelines say you can't. Right now, the IDSA are redoing their guidelines. The Lyme groups have sent extensive scientific references to the IDSA on how poor the testing is and that Lyme can exist … the controversy, the politics of Lyme now that [are] really interfering with doctors knowing what to do, but we really need to put our swords aside, because we're in the middle of an epidemic. This is the No. 1 vector-borne spreading epidemic in the U.S.

Some Quick, But Essential Facts

1. More ticks are coming out 3 weeks earlier than usual as our planet warms up

2. The ticks that carry Lyme diseases are younger than before and are so tiny that you can hardly see them - called nymphs

3. Ticks now carry many types of Lyme related diseases - over 100 different types of Lyme in the United States, and over 300 world wide. Just in one tick bite, you can get infected with multiple organisms

4. PREVENTION: Some of the different type of co-infections are Lyme related pneumonia; Babesia, which is a malaria like infection; ehrlichiosis, and many more because of migrating birds, deer, and mice carry ticks with ease from country to country and state to state. There are also NEW co-infections showing up:

You need to do prevention because one of the viruses we're now finding, the Powassan virus can get into your body within 15 minutes of a tick bite, and the mortality rates are 10 to 15 percent — up to 30 percent in some studies. So you could get multiple viruses … relapsing fever bacteria, a malarial organism like babesia, with one tick bite. It overwhelms the immune system and that's one of the reasons people don't get better. ~Dr. Horowitz

5. Lyme is called, "The Great Imitator" because it is a multi-systemic disorder (affects many systems in the body) and can affect each patient uniquely. Alzheimer's, Multiple Schlerosis (M.S.), fibromyalgia, chronic fatigue syndrome (CFIDS) / M.E., psychiatric disorders like Schizophrenia, ALS, even anxiety and depression. Dr. Horowitz has seen patients with each of these diagnoses get better when treated for Lyme and its co-infections.

6. Send any ticks that you find and suspect that it has bitten you or your pet to a lab for testing. Most state health departments have a form on their sites that you can fill out and send the tick in a vial for testing.

7. Lyme Disease is a clinical diagnosis. Why? Testing is not sensitive enough, not complete enough, and is often inaccurate. If your test comes back negative, yet you have symptoms such as recurring fever, chills, migrating pain, fatigue, sudden memory lapses, muscle aches and weakness, headaches, numbness, burning, joint pain - these are classic signs of the beginning stages of Lyme and also several of the co-infections. . . you may still have Lyme.

8. Less than half of us get a rash when bitten. SO. Whether you have a rash or not, or if you find a tick that is tough to remove or engorged, or if you have symtpoms of Lyme, go see a Lyme literate physician and discuss getting started with antibiotics before any tests come back.

Q: So say I get exposed to Lyme disease and I don't realize it, time goes by, now it's a year later … can I get better?

A: Yes, you can. There is hope for people with chronic Lyme. I've found that there's up to 16 reasons why people stay ill with Lyme. One of the largest parts are these co-infections in the ticks like babesia. Over 80 percent of the time, this malarial organism — it's a parasite — it's getting into people, making them sick … the [patients] who have day sweats, night sweats, chills. I had a woman in a wheelchair for six years paralyzed from the waist down ... within 10 days of treating the babesia with antibiotics and antimalarial [drugs], she was walking.

Lastly, to end this on a positive note, if you are outside, wear light colored clothing so you can see any ticks that might happen upon you. DO TICK CHECKS. Remove the tick with a tweezers but don't squeeze it - this could actually inject organisms into your blood stream! Read more about what Dr. Horowitz says about prevention so that you can enjoy the summer! He recommends types of sprays and how to use them.

Here is the article again: Read it and watch his interview. 

The Love Bite Diary started as notes to friends. It was therapeutic, as a writer and as a human, to simply express a longheld secret. I was struggling in and out of physical functioning and brain firing, but my friends made it feel safe to write, and encouraged me to do so. These are friends from all over the world, brought to my laptop through that sorcery called Facebook. Until I catch up, the entries of the diary will not match the dates of the posts. I hope to add the stories of some of the incredible people I am meeting, offer practical advice as I learn and get more on my feet, and eventually interview experts in the treatment of Lyme Disease. And recipes - in time, there will be recipes. In the meantime, I hope you are glad to be on this exploration with me, and that it is helpful to each of you in some way.

~ Thank you, Elisabeth

 If you would like to read the entire story, from the very beginning, start here.

May 17, 2016

Birthday Wish

Today, May 17, is my birthday. Every Christmas, for a very, very long time, I would think, “By my next birthday, I’m going to get better.” When May 17 rears its gorgeous little head, I say, “By Christmas, I’m going to figure this illness out. Hey, I’ll be able to work on that Christmas album I plan every year! I’ll sing again, and write those songs with Prince! I’ll travel and see friends all over the world, and spend more time with nieces and nephews! I’ll run every morning and play tennis again, and get back to yoga -- and twist my body into a pretzel ON PURPOSE!! I’ll launch one or two of those internet companies that I’ve done business plans for - Tender Palate, included. Maybe I’ll be able to write all four books that I have outlined! In fact, I’ll be the only one who brings Barbara Walters out of retirement when those books become best sellers! I’ll fall in love! It’s going to be a great year!”

I also promise myself that I’ll figure out how to make illness funny. Then write about it. Because humor helps us understand ourselves, an essential ingredient in understanding each other; and humor, like kindness, helps us heal. Besides, illness without humor or curiosity is boring, and without laughter it is easier to be just angry and sad. I have a show idea running around in my head, along with a marriage proposal designed especially for Louis C.K. If I could get to him, I am sure he would accept. But I fail. Every stinking year, I fail, and every year, I end up in the same cycle of survival and then have to forgive myself for it. Every day, in fact.

If I do forgive myself, and sometimes that is the only thing I can do that day, then I am surprised at where I find joy. It’s an odd surprise, really, how a glimmer of joy can spark the creative exercise of reinvention - if I can get through those times when I can’t think or move, or lift my head, and when things seem hopeless, I’ll figure this out. It is a sweet shock how life, when you are forced to make it so much smaller than was planned or wanted, can get bigger on the inside. If you are lovingly and brutally honest with yourself, if you feel the deepest, and most unpopular feels. . .the grief, the rage, the panic … and get help to process what we are too “nice” to feel… you can allow that reinvention on a microcosmic, spiritual level, too. That’s horribly difficult, but very cool.

A few months ago, however, I realized that this birthday is a crossroads for me. It has become clear that no amount of patience, hard work, faith, or reinvention would work. That I wasn’t bouncing back from stress and its subsequent relapse like I had in the past, even with the intense treatment that used to get me “functioning.” The symptoms came rushing back with shocking speed as soon as I stopped those treatments. I saw myself in my mind standing at that ridiculous crossroads, where one sign read, “Keep Straight: take this road toward a possibly slow, possibly fast, but lonely, and stress-filled demise” while the other read, “Radical Change Ahead: the right knowledge and great healing is this way, and you may even get your whole life back! But if you want to live, you need to pay for it.’

With the help of my friend, Sue, I launched a GoFundMe campaign - and coming to that decision was a humiliating exercise. But it has reignited my fiery internal Mars as I grab this cagey beast by its face, and stare down every fear that once had me curled into a sobbing ball of snot on the floor. Oddly, this campaign has also been an incredibly healing experience. People with complex illnesses like Lyme are on the outside of every single system of support in our country. Insurance fails you, there is little to no funded research, so there are some in the medical community that don’t understand how dangerous mistreatment can be. With the RIGHT treatment, right away, no one has to suffer like this. But no research money also means that it is up to a few, rare, curious, smart and caring physicians who have the background and experience to help those patients whose health has spiraled out of control. Usually these doctors have a family member with this disease, or a steady stream of patients with a painfully familiar pattern. These docs have the humility to explore when their knowledge reaches the end of its tether, not blame the patient. They have the tenacity to follow through until the problem is solved or they have a plan. They learn from each other. The amount of effort that it has taken to try to fit into those established systems, as a patient or a doctor, has been exhausting and has wasted energy, time and money. It has given me hope, however, to find physicians out there who have actually cured and helped people with chronic and complex Lyme.

Your notes, and financial and spiritual gifts have given me hope that I might get to one of these experts. You have given me courage when I was starting to seriously lack it. I could not find my courage, nor my sense of humor, and did not know where to turn. I have been terrified. You have given me practical, feet on the ground help, which I have needed, even more than I realized. Help from actual people makes this illness and its consequences even more real, though, because now other people are reflecting back what they see. I can’t pretend that I’m normal, anymore. When someone truly sees you struggling, and acknowledges it, it is sobering. Denial and its sneaky cohorts wash away and you can more clearly see where the beast has left you raw and helpless. But you can also more clearly see what to do about it, too.

When all of the strength you have that day – and the next, and also the next - is to write a long, humbling dissertation to the Internet asking for help, you know you are in a hard, cruel place. So, on this birthday, which kicks the full-figured arse of all other birthdays, I am facing another fear. I am directly asking for a birthday present from friends and total strangers, if you can. And please forward this to anyone and everyone. Tell them to read the GoFundMe story that Sue so graciously wrote and so kindly bossed me into publishing. If people are moved in ANY way, tell them they could give someone the best birthday gift imaginable – health. Those of you who know me even a little, understand that I am not at all shy, but am very private. You may be used to protecting that privacy, whether you know it or not. I have so appreciated that. Well, the secret is out, the jig is up, the cat’s out of the bag, the boys are in the yard, and the gate is open … so share your heart out. I hope, one day I can repay you all in some way. It will be impossible, I realize, but I will put that on the list with the books and the album and the kids, and Barbara Walters. Prince, you will have to wait. We'll go crazy in The Afterlife one day. Right now, I would be so grateful just to be able to do the dishes, be around people without my lungs filling up and throat closing because someone wore perfume, walk down stairs without wondering if my muscles will work; and be able breathe and poop and sleep and move through life without considering whether or not the person drawing my chalk outline will make me look fat … and also, I just want to be able to be there for those I love, … and just get back to work.

With my deepest and most heartfelt thanks,

Beth

Opening the Secret Book

Hello Fellow Tender Foodies!

As you may have read from my friend Sue's earlier post, I have been battling something for a long time. For a long time, it was a mystery. For a year or two at a time, at different times, I was completely disabled, and almost died. Then popped back into life after working with an MD who is also a Chinese Herbalist to whom I will be forever grateful. Even after coming back to life, I would regress from walking on my hands in yoga class and on the beach, to suddenly not being able to walk on my own two feet with confidence or at all. Muscle weakness would take over my body with uncanny speed, and the well defined muscles on my legs would simply disappear. I gained 50 lbs in a couple of months, and people thought I ate too much. Then lost 80lbs and people thought I was sick or anorexic. That is simply a few of the many odd shifts in my physical plane that have happened at different times. I've continually altered my life and career with each relapse, have continually battled to get back to those handstands, because if I could do that, I could sing, write, develop relationships, and be of service to people in some way. Through my work. Through my life. I devoted a lot of time to more deeply and spiritually understand the "why" and "how" and "cure" for this - for many years not knowing exactly what "this" is. Finding equalibrium. Changing my diet. Learning more about food, allergies, and immune supporting diets. I've seen excellent physicians, good physicians and simply terrible ones. I had spent all of my earnings and savings, and my parents helped as best that they could when I couldn't do it anymore on my own.

A New and Unexpected Road to Recovery

I recently had a sudden, and unexpected relapse. Unexpected, because I had been in treatment for over a year, and was doing much better again. There were some major allergic reaction-type bumps along the way, which probably interfered with the healing quite a bit, but will save that story for another time.

I am finally working with a top Lyme Disease specialist right now in Albany, NY. He has discovered several co-infections that are common with Lyme Disease, including two types of pneumonia, and some kind of bug that has decided to work on my heart, along with the other muscles it likes to attack. A severely depressed immune system. Plus more co-infections that I am learning about now. It isn't simply one bug that sits in a tick's stomach, you see. It can be several. I had no idea.

It Changed My Life

This disease can bring a great deal of misperception and judgement and sometimes, cruelty - from doctors, communities, and even families. "You look fine, stop pretending," even as the muscles all over one's body are spasming so painfully, tears would come. Every single person who has Lyme has had this said to them while inside, they feel like they will die. So I kept my mystery disease a secret as much as I could, hiding, only coming out when in remission or when I could control my symptoms, planning meticulously how to work, get enough sleep, keep meetings, and be efficient; focusing mostly on work, and letting fun, friendships, and baseball games of my beloved nieces and nephews go by the wayside. Did I want to? No. I had to.

I also went from a performing opera singer on the stage, to a writer tucked away in my apartment. There is joy in both. I had always intended to do both. So I am very lucky to be able to do one of those careers now.

Then, I was told I had Lyme. It took a few years for me to admit that I had Lyme. I had other things, I don't want another disease. Good grief. This is not sexy. Not sexy at all. Yet, during this little life lesson, I have also come across many, many people doing battle wtih Lyme Disease in their own unique ways. Some suffering for a long time. Others, completely cured. It affects everyone quite differently. When I came out with the story through my friend and heroine Sue, many people overwhlemed me with the most delicious and healing support, which buoyed me when I really needed it, saved me, and surprised me. I had given up, and didn't realize it. Their support turned a bright light on the belief that, "I can't take one more relapse," and that this time I had actually believed it. I had given up, and they supported me into changing my mind. Sue piled me into my car and drove me to Albany, New York. The land where the magic doctor lives. Like I said, she is my heroine in this story.

There have also been a startling number of people who have said, "I think I have that," or "I know someone like that, or "I never knew it could do that to you!" They thanked me for opening up about it. They actually thanked me for allowing them to support me, which touched me more deeply than I can tell you. They thanked me for sharing information as I learned it. So, I decided to do that here, too.

Celebrities Raise Awareness

Lyme is hitting the news with a little more honesty, because ticks, one of the main carriers of Lyme, are also breeding like rabbits, and jumping on and biting more and more people and their pets. The news is also chock full of celebrities reporting their Lyme Disease or who have been misdiagnosed, like Kris Kristofferson. Doctors treated him for Alzheimers Disease when he actually had Lyme Disease. With Lyme treatment, his memory is back at 80 years old, and so is his life.

Actress Ashley Olson, musician, Neneh Cherry, musician Daryl Hall, reality star Yolanda Foster and Avril Lavine, as well as Richard Gere, and other celebs who have raised the level of awareness to a point of undeniability.

I have come to love the people I have met with Lyme - the ones who can't afford to get help or who give every last cent to try to get better. I see the same yearning in their eyes for life. i see how incredible people are and how interesting they are. These people have gained a spiritual depth, as their daily life slips by. They bring it with them as they recover. We need these people back in this thing called LIFE and to bring their depth of soul with them. It is time for more awareness on what Lyme disease is, how it effects us, and how it truly needs to be treated. So if you would like to start with my story, read here.

With a Lot of Help From Friends and Strangers

Friends - and strangers -  are helping me get treated by one of the rare experts that exist in the world - the true experts, who have pushed boundaries in order to help an ignored population. And I continue to need this financial help to be able to stay in treatment until I am back on my feet. Thus, I am doing the only thing I can do to pay it forward, give back, or whatever the buzz words are these days for offering up the humble gifts you have, because others have helped you. I hope to interview my doctor, write more about insurance as I learn how to fit into a system that spits you back out, about treatments, new research, and tell the stories of the people who I meet along the way who have Lyme and help people with it. And simply open up my own soul after hiding for so many years. Frankly, this scares the crap outta me.

Because now, this opera singer turned writer, is writing about Lyme as I learn about it and as I get treated for it, and without all of the answers. Now that I can lift my head.

Fasten your seatbelts. I'm certainly fastening mine.

Sincerely

 Elisabeth, The Tender Foodie

Read more about Kris Kristofferson's Misdiagnosis.

"He was taking all these medications for things he doesn't have, and they all have side effects," she says. She is wearing one of her husband's tour merchandise shirts. After he gave up his Alzheimer's and depression pills and went through three weeks of Lyme-disease treatment, Lisa was shocked. "All of a sudden he was back," she says. There are still bad days, but "some days he's perfectly normal and it's easy to forget that he is even battling anything."