Bring Beth Back to Life
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.
If you have always wanted a beautiful baby grand piano, Beth is selling hers! She loves this instrument, and would love it to go to a good home. She needs to sell it to continue immune building and maintenance treatments that are so important to help get her back on her feet. This has been a long, tiring and expensive road, selling her piano will help. Here are the details.
KAWAII BABY GRAND PIANO FOR SALE
Not many pianos can compare to this Kawaii's beautiful, clear, mellow sound, and gorgeous, unique wood and finish. It is a unique shape and color.
- 1 owner who traveled a lot so it was kept in a virtual time capsule (thanks, Mom & Dad). Hammers, strings and keys are all like new
- 5'1" at the keyboard, one of the smallest baby grands made
- Model: KG-1C
Cash. Drop a private note here if you are interested, or email email@example.com, and we'll give you a call.
Moving expenses are the buyer's responsibility. Must use a professional piano mover. Long distance move can use a professional mover loading in and another professional mover loading out of a proper vehicle (truck/trailer) at the buyer's location.
This has been true for Beth, but with a lot of patience, courage, and work. What Beth and Dr. Stram couldn’t predict, however, is that this has also become true in her life as well.
This is a long update, but we feel you deserve to understand exactly what is going on, and she desperately needs continued help in order to stay healthy.
GOOD NEWS: When Beth returned she immediately went back into the immune building treatments that were very successful for her in the past. This is an IV treatment that she is trying to get the Stram Center to review – that’s how helpful these have been for her. It helps boost the body’s immune system to create T-Cells so it can take over after the antibiotics do what they can. This treatment was recommended by two physicians who she had worked with years ago, when she was too weak to handle antibiotics. She is also working with Stram’s herbalist. When she got back to Grand Rapids this fall, she was out of danger but was still struggling and some painful symptoms returned. The new treatment left her flat for a month which was expected as the die off from the infections takes a toll on the body. By mid-October, she was going for walks, starting to do a little yoga at home, and began work on a beloved project. She even looked at her running shoes again with hope. This is incredible, given that this spring the Lyme had gone to her heart and lungs, weakened her muscles and was affecting her brain and speech. At that time she was having great difficulty walking. So, her improvement since our last update has been fantastic, steady and hopeful. She is also able to talk a mile a minute again, and she has her sass back, which is wonderful to see.
BAD NEWS: Just as she was starting to feel confidence in her health, the project on which she had been reinstated was cancelled, and her potential/expected income dried up. She hasn’t had work income for 3 months. She had hired a billing expert who had success getting claims funded for other Lyme patients. Blue Cross Blue Shield was actually starting to pay, but sent the checks to the physician instead of to her, and the physician sent the checks back to BCBS who is now holding them. BCBS also had lost over half of the claims that were submitted. She spent 4 long phone calls getting this straightened out, made sure that her premium payments were clearing with BCBS through 4 different, really lovely customer service agents, and had the biller resubmit the lost claims. Then she got a BCBS bill for 3 months of past due premium payments on the same day that she got a cancellation letter from BCBS. She worked with her bank to figure out what was going on. In short, BCBS was receiving her premium payments, but delaying the deposit of her payments by weeks so this unjustly triggered the cancellation of her insurance all together. One of the very few things that have been covered is her picc line, which needs supplies and an RN to change the bandage and line so it doesn’t get infected, as it goes directly to her heart to deliver medication that she will need throughout the winter. Now these essential things are not covered. If she gets the line pulled, this also needs to be done by an R.N. or hospital, and now this also is not covered. She has a volunteer working with the insurance company for her to hopefully get this corrected, as she has meticulous documentation, but she needs this to be fixed within the next few days or she will be responsible for all of the picc expenses, as well, and without income. If BCBS chooses not to act with integrity, or move in its typical slowness, she will be forced to stop all treatment at a critical time. She is so close. To top it off, she has a new neighbor whose dog has been barking several days a week from early in the morning to the middle of the evening, non-stop. Her nerves have been raw. The neighbor is working with a trainer for her dog, but this has retriggered the night terrors that she was finally getting resolved. She hasn’t been sleeping, and the treatments are helping to keep her immune system alive. She was hoping to rest for a few months in her current location as she got back to work before moving to a cheaper place, but finances and the dog are necessitating an immediate move. She is hoping to find some snow birds who would love a quiet, responsible house sitter.
DISABILITY NOT AN OPTION: People have asked her why she hasn’t gone on disability. She applied several years ago during a terrible time. It took a year to get denied and another 2 years to get a court date. It took all of her strength at that time to do this. She hired an attorney and pulled a judge who has a reputation for disliking and not approving Lyme patients. There is a big long story here, including inadequate testing for Lyme, getting records from physicians and more. In the mean time she was able to get back into treatment and work, until this last relapse occurred due to an allergic reaction to the wrong medication and a concussion from a slip on the ice and terrible stress. In reality, she needs to be able to build up income so she can pay for and save for treatments to keep her immune system healthy. On disability, since insurance only pays for the picc, but not the drugs or the treatments, it puts her into a catch 22. Disability doesn’t pay enough to get any kind of treatment at all. She doesn’t want to be on disability until she dies a painful death from Lyme when she could thrive with just a few more months of assistance. She can work. She wants to work and also to help other people figure this mess out with Lyme and immunity. But right now she needs help to get there and reduce this financial stress or she will have no freedom to help anyone, not even herself.
HER PLANS: She needs to continue the current treatment and needs some stability to heal. As she says, if insurance would just work like it is supposed to, she would handle this with style. She is looking for new work – she is a ghost writer who works with authors, and writes article, scripts and marketing materials. She is hoping to restart her once successful www.tenderfoodie.com, this time along with an incredible physician offering unique classes. She also has three books outlined that she hopes one day in the future to finish. A friend has stepped up to help her sell her furniture, and she hopes that she doesn’t have to sell her beloved piano. Most of all, she is trying to prevent any type of relapse due to further stress from this latest series of financial upsets that she worked very hard to stay ahead of in spite of her condition.
She has exceeded the $50,000 goal already this year in medical treatments and related expenses, and needs to continue treatment on top of this.
Thank you for all that you have done and are doing. This has been a tough road already without this latest incredible upset, and she is so grateful for what you have done so far.
If there is anything in this story that gives you ideas, work miracles, or help, please do. She is so close and you have helped get her to this point. We hope that even more people can help her get to a place of financial health so she can continue to get to a remission and truly get back on her feet.
Good luck in your journey. My son has lyme aswell and your story is all to familiar. His treatment is in the $80000 + range. But we are seeing improvement. My prayers are with you Beth! I wish we could donate, but are scraping every penny for our son.
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!