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Wednesday
Jun152016

Lyme Disease Diary #1: I Never Knew it Could Do That To You.

 

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.

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. 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."

Friday
Jun032016

Where in the World is Elisabeth, the Tender Foodie?

 

Hi There!

My name is Sue Chaitin, a friend of the Tender Foodie, Elisabeth Veltman. Some of you know her as "Beth." You may have noticed that there haven't been any posts on this blog for awhile, and there is a reason for that. The video above is a clip from Elisabeth's past life as an opera singer. It was her last concert. The story below is about what has happened to her since then, and why we all need to become more educated about it. 

This blog, The Tender Foodie, was the start of a larger, unique business plan to help people navigate the increasingly complex road of food and disease - starting with celiac disease and multiple food allergies, but expanding into other unresearched, but growing health issues which seem to inter-relate. She had to stop these plans for health reasons of her own, before this vision was realized. She also hadn't made her personal story public, because she wanted this blog to be about the rare and wonderful experts in each area, not her specific issues alone.  But now she needs our help. Here is Elisabeth's story, as written on a Go Fund Me page that I set up for her. I hope you will find the story helpful, and if you are able and moved by it, or have appreciated the information in this blog over the past few years, help her with some overwhelming medical expenses -- and bring her back to life.

Sincerely,

Sue

Read the original story & updates directly on Go Fund Me

 

Elisabeth's Story, told by Sue Chaitin

This is my friend Beth. I met her 4 years ago through work.  At the time I didn’t know much about her.  All I really knew was that she had an amazing career as an opera singer in New York City and is now a successful writer.  She struck me right away as an honest, smart and fun person with whom I knew I would get along. She is superbly intelligent and witty. I love being with her because she never judges, she is warm, gregarious, curious, loving, and the best friend anyone could ask for.

 As time went on, I noticed some peculiar absences in our communication and I wondered why. We would call or text regularly, and then she would just drop of the face of the earth for weeks. As time went on and as she and I became closer, I learned that Beth was keeping a secret. Many of you reading this, who know Beth, may not realize the secret, because she is very good at disguising it.

My friend Beth has suffered from complications from Lyme disease for over 20 years. In fact it was so severe she could no longer perform and had to abandon the years of hard work, study and practice; and end her accomplished singing career.

Beth has been reluctant to tell her story for fear of being judged or labeled! You see, not much is understood about Lyme disease, and her story started out with many misdiagnoses: from M.S. to tumours, to the flu, to "its all in your head, sweetheart." It took enormous will and courage for Beth to fight back against the medical apathy she encountered and to continue to hunt for the reasons why her body was failing her. She went from doctor to doctor, getting sicker and sicker, until a friend encouraged her to go directly to an immunologist / infectious disease specialist.  She was so ill, she could hardly walk and almost didn't make it to the cab, let alone her appointment.  The immunologist was the first to understand the severity of her condition, and knew what to test for. The physician asked her to sit down because there would be bad news. Beth found out that she had an infection in the central nervous system which could kill her within a couple of weeks. She might survive if she took some immediate steps.  She took those steps, fought to stay on this planet, and had to radically change her life to do so. We now know that this infection is often related to Lyme Disease - the two diseases can work in tandem by suppressing the immune system, and the CNS infection most likely opened the door for the Lyme. She had loved to hike, and at some point must have been bitten by a tick, but didn't know it. This frustrating medical journey has led to long debilitating periods where she could hardly lift her head, and which still rob Beth of the ability to function on a daily basis in a way that we all take for granted.

As I have educated myself about Lyme Disease, I cannot imagine how Beth continues to soldier on as she does. While many can recover from Lyme with immediate intervention, some people end up with a chronic, devastating illness, with sometimes invisible, but far reaching complications.

If you want to get a good feel for what it’s like to live with chronic Lyme disease I suggest you watch the following video journal of another person who suffered in a similar way: https://youtu.be/So2K68r8pOY

The fact is, Lyme disease is as serious as cancer or heart disease, but it is not taken seriously by much of the medical community nor by insurance companies.

Beth’s complications continue to worsen. She is reacting to most foods, and can't be in the room with even a trace of certain perfumes, air fresheners or detergents because she has developed serious allergies to chemicals in them. Right now, she is getting necessary IV and supplemental treatment that is helping her function until she can get more comprehensive testing and accurately targeted treatment. Without any treatment, or if she has to skip them because of lack of funds,  she has episodes where she cannot get out of bed for weeks with terrifying symptoms. She has been temporarily and partially blind and paralyzed; has had weakness in the muscles that difficult or impossible to walk, and can get muscle spasms so terrible it stops her breathing; her heart and lungs get distressed, she has tremors, palpitations, nausea, fever, fatigue, body aches and pains that make even rolling over or normal movement feel impossible. It has cost Beth between $20,000 and $40,000, depending upon the severity, just for out-of-pocket medical expenses every year. This has been financially and emotionally, as well as physically devastating. Beth is not a victim. This has been a convergence of very difficult circumstances that are simply overwhelming.

You can read more about some of the complications of misdiagnosis here: http://www.forbes.com/sites/judystone/2015/09/04/lyme-deaths-from-heart-inflammation-likely-worse-than-we-thought/#db29d6e4d81b


There is good news, however. There has been advancement in treatment for Lyme Disease and its companion infections, thanks to a rare group of physicians who have the right mix of skills and passion to help this overlooked community of patients. With the right medical testing and treatment, she can go into remission, help her immune system heal, and become strong and fully herself again. With the help of an expert physician in this complex disease, Beth still has a chance to have a very full life, and with proper management, never have to suffer like this again. However, she cannot let this disease progress any further and needs this help as soon as possible.

Insurance will not cover any of Beth’s medical bills because they consider Lyme to be difficult to catch, but easy to treat. As a result, they will only cover 30 days of Lyme Disease treatment (antibiotics), which will not work for someone who has been misdiagnosed for as long as she has been. There are multiple co-infections and complications from a missed Lyme diagnosis that can be life threatening, especially as the immune system breaks down. And her immune system is breaking down. I would hate for Beth to die because of lack of money and the humiliation she feels from this disease.  Therefore I have encouraged her to allow me to tell her story and to ask for your help.

I'm afraid if Beth continues in this way and does not get the medical attention that she needs, she will die.

 Although she has had help from a couple of wonderful physicians in the past, there are very few physicians with the training and knowlege for difficult Lyme cases. They are quite rare. Physicians need to be experts in infectious disease, as well as Lyme, and understand how antibiotics/drugs work with each type of infection - and how they don't work, and what to do about it. They need to understand how the delicate immune system is altered and how to bring it back into balance. They need to know exactly what to test for and how to read the symptoms for each co-infection, and there are a lot of those to choose from. The physician needs experience to know that the infections, some of which are similar to malaria, can get into every system in the body, including muscles, nerves,  joints, organs, heart, brain and gut - if left unchecked. Beth hasn't been able to find one of these experts local to her in Michigan. But, after much research and evaluation, she has found a physician/M.D. who can help. The medical facility is in Albany, New York, and is called the Stram Center for Integrative Medicine. It specializes in Lyme Disease and has proven to be a success with patients with long-term, complex issues who have suffered like Beth. Treatment is expected to be $32,000 over a two-four month period. Adding in her travel and temporary housing expenses, Beth will need $50,000 to make it feasible. Anything over that amount will be put toward future maintenance treatments that are  out-of-pocket for her. She had enough funding to make her first appointment on May 31, and is very positive about the help she will be receiving there.

Note: She originally had an appointment with another great doctor in Florida, but since the campaign began, heard many success stories about the protocol that this center was using so when an appointment with Dr Stram, M.D. opened up, she grabbed it. For updates on her progress, visit her GofundMe page.

Beth tends to focus on the needs of others, rather than her own. She also has a lot of pride, and does not want to ask for your money.  So I will! Please give whatever you can . . . if you can, to help Beth. Please help save a kind, loving, and talented woman who has so much to give.

 

CLICK TO CONTRIBUTE TO THE GO FUND ME CAMPAIGN

Wednesday
Mar302016

Just a note to thank you all for following this blog! You may have noticed a gap in the posts, and a few of you have asked me where I've been. I had to take an unexpected and sudden leave in 2014 to deal with a few personal things, but plan to be back on board as soon as possible. Hopefully in a couple of months. So, stay tuned, send good vibes to the community, and use the search to look through the tons of information on the site that could be helpful to you. Feel free to drop comments and questions, I check regularly. (To search look right)==>.

Tuesday
May052015

Simple Roasted Sweet Potato Fries

The smell of roasting sweet potatoes with coconut oil has a lovely hint of toasted marshmallow. Maybe that's why I love them so much!

There are a lot of wonderful sweet potato ways. Today, they are big "fries," but tomorrow, it's chips with cinnamon, sea salt and nutmeg, served with a dollop of cashew butter (my favorite).

Give this one a try and share how it goes! So simple, so quick, so delish.

 

 

RECIPE

5 organic sweet potatoes, cut lengthwise into quarters, and if a big tater, eigths (I like to use jewel or garnet, but any orange fleshed sweet potato will be yummy.) Make 'em fry size.

2 TBS of coconut oil

2 tsp sea salt (or to taste)

Heat oven to 425 degrees F

1. Line a baking sheet with parchment (I use If You Care's unbleached, compostable parchment)

2. Place the fries on the sheet, and rub each slice with the coconut oil so it is well coated.

3. Sprinkle with sea salt, turning to cover all sides

4. Bake at 425* F for about 20 minutes or until golden brown.

How do you like your sweet potatoes!  Share your wicked skills in the comments!


TIPS

1. Store sweet potatoes in a cool, dry, ventilated space and they will last up to two weeks. Try not to store in the refrigerator as it could make the core hard. Since I don't have a root cellar, nor air conditioning, I will store mine in the fridge in a basket, but use them in a matter of days.

2. Japanese sweet potatoes work well as fries, too, but they have a very different taste and are much more starchy. So, for those on gut healing diets that need to avoid starch, the orange fleshed potato is a better choice.

 3. Bacon Fat. Instead of coconut oil, bacon fat is simply fabulous with sweet potatoes. If you make bacon this way, the fat is easy to save and is a cleaner draw.

4. If you just want one. You can just make one.

 

Wednesday
Apr012015

Can We Help Stop the Destruction of Monarch Butterflies?

Me, at the Frederick Meijer Gardens butterfly exhibit several years ago. The butterly stayed in that exact position for an entire hour. Don't remember the type of butterly this is, does anyone happen to know?

"Industrial agricultural giant Dow Chemical unveiled its newest toxic herbicide, Enlist Duo, which would destroy milkweed plants that monarch butterflies need to survive. And monarch populations are crashing from nearly 1 billion butterflies 20 years ago to just 57 million last winter. Tell Dow's CEO to shelve the company's plan for selling this potent chemical cocktail — before it wreaks more destruction on monarchs."

~Natural Resources Defense Council (NRDC)

 

I never thought, not in a million years, that I would be saying, "help save the butterflies" or be writing about the destruction of our great pollinators, the honey bees. But I have been, and the quote above prompted me to sign this petition created by the NRDC, an organization that does incredible work to help protect our ecosystem, of which we are a part. I think sometimes we humans forget this. I sign many petitions that I believe in to do my part to protect our health, but today, I thought I'd share what I wrote to the Andrew Livaris, President, CEO, and Chairman of Dow Chemical. If you would like to join me in signing this petition, here is the link. If you would like, help more people understand your thoughts by copying what you wrote in your letter to Mr. Livaris, below in the comments. Thanks for reading and considering a signature.

Click here to sign the NRDC petition.

 

Dear Mr. Livaris,

I imagine that you have noticed the decline in butterflies in the recent years, and if you haven't, perhaps it would be good if you spent a little more time outside? Butterflies used to flock to fields where I've lived for the last 10 years, where no pesticides were used. Today, seeing a butterfly gives you the feeling that you are sighting the rare white tiger... elation, then sadness. Unlike tigers, butterflies and bees should be commonplace in our (national) ecosystem.

 Also, have you noticed the rise in autoimmune disease and food allergies? If you haven't, perhaps it would be good if you spoke to more actual people. Learned a little more about the gut damage that people are experiencing. Maybe look at some health data and step back to ask, "Could Dow, actually be a part of ruining peoples lives, killing species, and hurting our national and global health?" Even if your experts claim that there is no evidence to support this, you need to ask yourself this question like many of us do every day, when we recycle, when we choose not to litter, when we choose not to eat antibiotic fed chicken. If you haven't asked yourself this question, "Could Dow.. could I.. be a part of hurting entire species and contributing to the serious ill health of people?" Then perhaps you should. You are a powerful man. It is your responsibility to ask this question. If you haven't, then ask yourself this, "Why am I not ashamed?"

[the following is text from the NRDC]

Please shelve your plans for selling Enlist Duo, a new generation of toxic weed killer, in light of the disastrous threat it poses to monarch butterflies. The skyrocketing use of glyphosate, one of the key components in Enlist Duo, has already led to a massive decline of milkweed, a key factor in the collapse of monarch populations. The fact that your company is rushing headlong to introduce a chemical cocktail that will wreak further destruction on milkweed and poses potentially serious risks to human health is simply unconscionable. I urge you to help avert this ecological disaster by keeping Enlist Duo off the market. Thank you.

Elisabeth Veltman

 

More on the NRDC's action on the part of Monarchs

EPA Denies NRDC's Petition to Save Monarch Butterflies

NRDCs Lawsuit against the EPA

 

Some News on Bees

Mystery Malady Kills More Bees, Heightening Worry on Farms (New York Times)

Environmental Groups want Pesticide Makers to Release Bee Death Studies (CTV News, London, Ontario)