Bring Beth Back to Life
This is my friend Beth Veltman. You might know her as Elisabeth. 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 trailor for the award winning film called, "Under Our Skin:"
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 Florida. 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 four month period. Adding in her travel and temporary housing expenses in Florida, 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 has tentatively made an appointment for June 1, and will go, if she can get the funding.
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.
PLEASE NOTE: Donations for GoFundMe campaigns, and those like it are not tax deductable. So please keep this in mind as you consider a gift.
Lyme Disease is growing. Here are some tips on how to prevent chronic Lyme Disease.
7/25/17 UPDATE: We've added a WISHLIST so that funders can help her get specific treatment items. She hasn't yet met her goal and still really needs you!
I’ve gotten a few emails and phone calls lately wondering how things are going, so perhaps it is time to send another update to you, who have been my incredible support system during a very challenging time. First and foremost, I'd like to thank Sue, who started this campaign 2 years ago, for her love, kindness, and incredible generosity in reaching out to the world like this, in order to help me get out of a dangerous health situation. She has been a true Godsend, and gave of her time and energy in a way that I didn’t expect, but for which I am so grateful. This week, in order to free up some of her time, we have decided to transfer this GoFundMe account to me, to manage as I continue to recover, which, thanks to all of you, I am slowly doing.
I will do a very occasional update for those who wish to keep up with this continuing story. My hope is that I can spread the word about any new therapies that are helping people, and that soon, I can tell you what has gotten me into remission!
TREATMENT PLAN GOING FORWARD
Right now, I’m trying to find and maintain some stability with treatment plan that includes oral medications, herbs, and supplements. Stability is hard work and lonely, but incredibly important in keeping the scariest and most painful symptoms at bay. And to be able to sleep. My next hopeful steps include three main therapies, described below, which I hope to be able to complete. As Lyme and its co-infections progress over time, finding solutions becomes more like the layers of an onion, which slowly need to be peeled back. It can sometimes be like herding cats, as well, but I believe. I believe.
1. BRAIN RE-TRAINING: Because Lyme and its co-infections eventually find a way to, essentially, turn off the immune system, some people have found great success in different types of “brain retraining.” Basically, instead of going directly after the bugs or supporting the immune system, these types of treatments start with the brain, to help it “remember” how to work with the immune system and the gut (where a good majority of the immune system lives), and seeks to alter the body’s response to trauma. I have seen this work for several people now with rather interesting and sometimes astounding effects. The cost is very reasonable, and since my immune system has been absolutely hammered and is not responding well to the usual supplemental support, I have decided to move forward with this therapy.
2. FECAL TRANSPLANT: Yes, this takes the healthy microbiome from other people’s poop and transplants it into your colon. Gross, I know, but this has shown some fantastic results. I’ve attached a couple of things about the microbiome (described below.) I’ve spoken to a few doctors: one who had Lyme and has had it done themselves and is in remission, and two others who have done it for Lyme patients with success. A fecal transplant is a very common treatment for people who end up with c-Diff, an antibiotic resistant bacterial infection, which, thankfully, I do not have, even though I do have other antibiotic resistant bugs. It is the best treatment that works for C-diff, and it is considered 90% effective (c. John’s Hopkins) for this type of infection. Fecal transplants are becoming more common for Lyme, but FDA regulations and insurance coverage makes it difficult to get one in the U.S. I’ve done some initial research and am following this path with hope. The “good” microbes from a healthy gut have been shown to turn DNA triggers on and off, as well as interact directly with the immune system (See attached video.) A healthy transplant has more strains of good microbes than a supplement that are strong enough to rejuvenate a compromised gut, setting it back on a path of healthy function.
3. LOW DOSE IMMUNE THERAPY: This is where you are given extremely low doses of an allergen in a controlled setting to reset the immune system. If my anaphylactic allergies to certain foods and scent chemicals don’t subside, the doctors I’ve spoken to have recommended this. Hopefully, I won’t need it, because often when the Lyme is handled and the immune system is righted, these allergies can go away on their own.
Lyme is a very unconventional disease. It is multi-systemic (affecting every organ and system in the body), and when chronic, devastating. One thing that keeps me going, however, is a philosophical approach: I sometimes wonder if Lyme and other mysterious diseases exist to help modern medicine think differently, and more strategically about health. My hope, is that in my search for a cure – aided by such incredible generosity – will join the throngs of others doing the same, and that the world will inch one step closer to a cure for Lyme, and all disease.
The microbiome research is incredibly exciting for the advancement of this type of healing. I attached an interesting article about the microbiome and the diet of an ancient tribe from NPR, as well as a video about how bacteria and DNA strands work together from one of my favorite researchers, Dr. Alessio Fasano. He is a wonderful presenter, with a great sense of humor. Neither attached example is directly Lyme related (there aren't any serious Lyme studies, yet), but both show how a healthy microbiome holds a great deal of promise for our collective health.
With my deepest thanks,
John's Hopkins: https://www.hopkinsmedicine.org/news/publications/inside_tract/inside_tract_fall_2013/the_benefits_of_fecal_transplant
On Thursday, my picc line has to be removed. It has been a faithful companion in my right arm for over a year. I am both excited to get my arm back, but also worried that its removal is too soon. My hope is that my veins will cooperate for the next month (or two?) so I can complete this therapy without another interruption or another surgery.
Its removal is also causing me to look back upon the last two years with a little dumbfounded awe. In 2016 my life was in jeopardy, and you all jumped in to save me. The specialist got me out of danger, but when I returned, the most bizarre chaos continued to rain down and every foundation, structure, safety net and safe place was shaken or destroyed. In 2017, I lost my peaceful neighbors, then my home (moving 5 times), all of my savings, my work, and had to go bankrupt because the medical bills were simply too high. I also lost my Dad. The toughest loss of all.
This all took a toll on my health, my heart, and my spirit. And this has been a tough couple of years for many people.
Today, as I look at this cross-road – where one path leads to becoming an invalid, and the other offering a good chance of becoming a thriving, contributing citizen, I need to continue to ask for help. I now have a foot strongly on the good path, thanks to you! I am also in a stable home where I can continue to recover, thanks to a dear friend who has been incredible to me.
My medical goals are to finish the IV protocol, continue the oral/herbal protocol, and then my hope is to take advantage of the new microbiome research which has been helping long term, serious case Lymies like myself actually get better through flooding the gut with a new microbiome. I would do this as soon as possible.
Lastly, a low dose immune therapy (LDI) has had resounding success with anaphylactic peanut allergies, and is also being used for many other life threatening, anaphylactic responses, as well as complex Lyme that has become an auto-immune issue. The short story is that this will help me go out in public again without as much fear of killer perfume!
This is very exciting, and I’ve spoken to two physicians who have had great success with these therapies. If I am able to finally make the goal of this campaign, I can do this.
So, as I look back, I also look forward. As I gather wisdom from the experience and terror of the past, I hope to apply it to an online tool that I developed before I got sick, so that the process of healing is much, much easier for others than it has been for me.
Meeting this financial goal is a long shot, I know. But I am determined to get well. I am super strong, so I feel it is my duty to heal, as well as my desire. If you have any light bulbs go off in your heads about institutional funding or benefactors who might be able to help meet this goal quickly, I would be eternally grateful for this, as well.
Thanks again for caring so much and for sticking with me. Your financial support has been critical and sustains me still. You all mean so much to me.
with much Love,
It is incredibly difficult to ask for help, but when I do, you all step up with such generosity and kindness. Thank you so, so much. I don’t know what I would do without you all! You helped me continue an important piece of the treatment plan this month, enough that I have started to sleep again. This is huge. Please pray that this continues and that some institutional funding can come my way … and soon, so I can beat this infection.
I will write more later, but simply wanted to drop in and thank you all so much.
Since my last note, some good things have happened. You allowed me to get 2 months of the Cowden Lyme protocol that I need to keep fighting these infections, and there was enough money to get a few IVs to keep my immune system bolstered a bit. Thankfully, a good friend stepped in so that I could get a solid week of the IVs last week, and it is making a huge difference.
I desperately need to keep them up each week for the next month and a half to 2 months while I have my picc line.
Right now, I’m standing at a precipice. More accurately, a cross roads where one path has a very good chance of getting me well, or at least into a remission. The good news on that first path is that the protocol I am following right now is working for most of the co-infections.
However, there is one super tough infection in my gut, that is threatening to push me over a cliff again. When it is under control, my immune system is starting to handle everything else. When it becomes resistant, the coinfections go back to my heart, lungs, and ligaments.
Every day is a fight. Without treatment, it becomes a nightmare of excruciating pain and damage being done to my body.
The good news path is that I can win this. I’ve spoken to several doctors who deal with this type of thing with Lyme patients and other patients. And have had great success. I am formulating a plan for this right now.
I still need help as I formulate this plan, and as I wait (and wait) for disability to, hopefully come through. This is a frightening and humiliating position to be in, to need so much help. But I want to live, and am fighting hard to make you all proud. I am fighting hard to make your continued contributions mean something more than just helping me live. I am putting all of this research into a plan that will help other people live, too.
If you can help financially, or can help me find institutional funding, my gratitude will be boundless. That gratitude might be a little sloppy and full of tears, but it is genuine, heartfelt, and will know no end.
Thank you all for being on my team, for forwarding this campaign, and for sticking with me in this fight.
Some of her symptoms sound like mast cell disease...I know of a few people who have mastocytosis and Lyme disease complications
Hang in there Beth! We are all keeping you in our thoughts and prayers!