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Sunday
Jun192016

Love Bite Diary #3: Some Practical Advice from the Dash

 

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. 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. 

 

Friday
Jun172016

Love Bite Diary #2: When It's Bigger on the Inside


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

Wednesday
Jun152016

Love Bite 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. 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."

Sunday
Jun052016

We Have Arrived. Masked and Ready to Heal.

A Note from Sue

June 1, 2016

Just a quick update on Beth. Thanks to all your kindness and support Beth made it to a fantastic treatment center in Albany, NY called Stram Center of Integrated Medicine.

Tuesday she had her first of many sessions with Dr. Stram. The initial consultation consisted mostly of questions, fact gathering and blood tests. Yesterday Beth received a cranial sacral massage which seemed to bring some life back to her body and spirit. Soon Dr. Stram will start her on a treatment plan that is custom to her needs and infections.

Here is a shot of Beth and I during our road trip to New York. The mask you ask? Beth is very sensitive to the artificial scents and chemicals in lotions and hair products. This is one of the things that can happen to Lyme patients when the immune system gets so repressed. I forgot and put on a lotion that I thought was OK. Thirteen hours in the car gave me a lesson on how difficult it is to get the chemicals in the lotion off of your skin, as well as just what happens to her lungs with only a tiny amount! I tried rubbing alcohol, water and Beth's soap, and even tried to look for a shower. Then we realized it was on my clothes. So Beth put on a double mask, a body pillow in between us and her head out of the window, and through some teamwork got her safe and sound to the hotel with only a slight cough as a consequence. We made it to the hotel, and while one room had a previous guest who used a lot of perfume, the place was large, and the other room was scent/chemical free. We pulled all of the linens into the laundry and Beth put on her own sheets, took a double shot of Benedryl and went to sleep for a few hours.

While she was up and down with Lyme symptoms, I slept like a baby, and in the morning got to work on finding grocery stores and running errands to help get her set up in her temporary home.

Thank you again for supporting her through this!

Sue Chaitin

Friday
Jun032016

Where in the World is Elisabeth, the Tender Foodie?

 

 

A Note from a Tender Friend


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 many 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. 

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, and then expanding into other un-researched, but growing health issues which seem to inter-relate. Behind the blog was a business plan for "The Tender Palate" to help us more quickly get the information we need about health, exercise and the immune system, and food (like this recipe for Old Beau Steaks), and to speed up the healing journey so we all can thrive. She had to stop these plans for health reasons of her own, and 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.  She also wanted to do it without advertising, so the focus could be as objective as possible.

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. It also has a video of her singing in her last concert. This was the first time I heard her sing, and I was absolutely floored.

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.

She has told me that she will start blogging about her experience and what she is learning soon, to help thank those who are being so generous to help her. Since she can't possibly pay it back, she is determined to pay it forward as best she can.

Sincerely,

Sue

 

Read the original story & updates directly on Go Fund Me

 

Elisabeth's Story, told by Sue "Chef" 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