Around the time our youngest son turned one years old (October 22, 2015), my husband, Solomon, became unable to really lift either of the kids especially our little one. Since January, he has been getting weaker and weaker in his arms to the point that now he has atrophied in both and can barely hold a cup. We have gone through numerous neurologists and doctors throughout NYC, all who have taken him on a roller coaster ride of treatments and unknown directions. He was first told by one that he had an autoimmune condition called Myasthenia Gravis, removed his thymus gland, put him through Plasmapheresis then IVIG treatments, all of which made him quickly deteriorate for these past few months. Then the doctor went on to say it was Multifocal Motor Neuropathy (MMN), a motor neuron disease. We just got back about two weeks ago from the Mayo Clinic in Minnesota, paid out of pocket $10K as our NY insurance doesn’t even have great doctors in the plan who are even Board Certified believe it or not … even in NYC! The doctor there told my husband that he thinks it could be ALS. Talk about traumatic and tragic considering we have two little boys who aren’t even in school yet. Our whole life has flipped around … not sure who to speak to, who to go to, who to believe or what to do at this point. My heart is in a million pieces and I am so scared each day I wake up as my boys need their daddy.
The reason for my email is because we are also talking to many people who said to look further into Lyme disease. We live in a highly populated tick-infested area and are always in the Hamptons, near beaches, playing by dunes etc. My husband was bitten by a tick six years ago in Texas, but never got treatment as he didn’t see any signs or know better to look further into it. His spinal tap and blood work came back negative for Lyme, but we did however send his blood last week to the Igenix Lab in California for further evaluation.
We are seeing a few Lyme literate doctors who are recommended from ILADS [International Lyme and Associated Diseases Society] as well and hoping to get some answers. I really would prefer to have a treatment plan in place rather than just having ALS as a diagnosis and no cure or treatment behind it. Also, his arsenic levels came back 3x higher than normal in the recent tests 2 weeks ago that NO ONE ever tested him for prior.
If there is ANYTHING you can do to guide, help, mentor or provide me with, I would be forever grateful. I’m not asking for much, but for someone to help me so that I am not left alone in the dark with my two little boys and as caretaker for my husband. I’ve attached some photos—we are a normal family with big hearts and dreams. Not giving up this fight and really fighting to get awareness—guiding people to the right help one day! It’s been a horrible few months and not sure who else to talk to.
Please feel free to email me, call me or anything at any time.
Thank you for your time and help. Sending you lots of love and healing as well.
As I read this e-mail, I feel goose bumps all over my back, and when I scroll down to a picture of Julia, Solomon, and their two little boys I feel like I’ve been struck by lightning. Energetically, something shakes me up and I immediately start bawling, not just for Solomon but also because I really miss my Ellie. What if she’s the one who is making this happen from heaven? Did she send them? Am I being tested? I know a lot about ALS and I’ve also learned extensively about the correlation between Lyme and ALS. Sending a forty-year-old ALS patient home with one year to live is hard to accept. These boys need their father. Make something happen, Yo!
I immediately write Julia back and invite her to bring Solomon to Seattle the following week. Even though Dr. Klinghardt does not take new patients, I have a double appointment scheduled and feel confident that when I see him in person and explain what happened, I can convince him to get on board and try to save this young man whom I’ve never even met but feel strongly about. I am not sure what this all means, but I’m excited and think we might be on time to make a difference for him. My brain is going a thousand miles a minute.
“Please call Julia and get all of Solomon’s medical history so you can present it to Dr. Klinghardt,” I ask Daisy. “Let’s also research mobile nurses in Long Island so we can figure out how we’re going to implement Klinghardt’s protocol when he gets back home.”
At the same time, I get an interesting e-mail from a friend of a friend of a friend telling me that she is thirty days into a clinical trial for a Lyme-N supplement and having great results. She wants to introduce me to the people running the trial. So I get on the phone with Glen, the product’s creator.
“Finally,” he says. “I’ve been looking for you for three years but haven’t been able to get to you. I’m happy that we’re finally connecting.”
“Nice to meet you. I’m excited to hear about your great results,” I say. “Can you tell me what this supplement is and the philosophy behind it?”
“Well, Lyme is a man-made disease used in warfare between the Americans and Japanese, which is why no antibiotic in the world can cure late-stage Lyme,” he says. I heard this theory five years ago, and my innocent spirit thought anyone who believed this was badass crazy but at this point his words make sense. It’s hard for me to imagine thinking that way about any other human beings. But I just don’t know anymore whom to trust and what to believe. After all these years, maybe there is something to this theory. I start laughing out loud.
“I’m glad the universe waited three years to put us together, because a few years ago I would’ve told you that you were crazy,” I say. Glen and I continue our conversation and Daisy organizes all the paperwork to get the product and protocol to us. I’m not trying anything new without Dr. Klinghardt’s approval. My next appointment is September 29 so we will test the product at that time.
“I survived TVAM. I’m alive,” I yell out loud six days later when I walk into Dr. Klinghardt’s office. He and I hug and I’m excited to see him. Over the past two years, we’ve grown very close. I’m convinced that this man saved my life. We sit down as we usually do, and Daisy recaps the past six weeks, presenting any testing that’s been done and the progress we’ve made.
“I think the pellets are doing the job for you,” Dr. Klinghardt says, referring to the hormone pellets from Dr. Allen that I have implanted into my butt cheek four times a year. Dr. Klinghardt had suggested this when tests showed that I had high FSH and low estrogen, because optimal hormones are the key to this final stage of my recovery.
“At first, it was hard to balance the estrogen and testosterone, but I think we finally found the perfect ratio,” I say. “Although my hormones may look good, my engine is still stuck, and I don’t have that get-up-and-go energy.”
“So let’s test and investigate,” he says. “The TVAM really opened the blood flow to your brain, but we still need to detox and treat it. Let’s do melatonin with Liposorb. If you can get through the sleepiness, it can really detox your brain.”
“Okay.”
“The bugs are improving,” he says, as he continues to test. “But your back and upper spine still have them, so we need to continue doing segmental injections, and increase your Rerum to every other day.”
Then I show Dr. Klinghardt the Lyme supplement that Glen sent. “I don’t know what this is, but I feel like the universe is bringing this to me for a reason.”
“How are you supposed to use it?” he asks.
“You nebulize with twenty drops of the supplement every morning for sixty days,” I explain. Dr. Klinghardt tests it, and my body tests very strongly for the supplement.
“Interestingly, it also tests as a component that isn’t part of our protocol yet,” he says. But I’m not surprised because finally all the dots are starting to connect and things seem to be falling into place.
“Go ahead and let’s revisit six weeks from now,” he says.
My appointment is over, so we bring Solomon in. Only five minutes into the appointment, Dr. Klinghardt looks at Solomon’s almost completely paralyzed arms and confirms that he has ALS. This brings dead silence to the room. However, something inside me feels that this answer isn’t enough. As Dr. K
linghardt gets deeper and deeper into the layers of his testing with Solomon, he finds two things that played the biggest role in the onset of his ALS. The first is Lyme and the second is a lot of dental infections, cavitations, and two metal implants that Solomon got eight months earlier. Dealing with his dental work is the first plan of attack, but this is very costly. None of the treatments he needs are covered by his health insurance, something I already know because of my experience with Ellie. This is going to be a very expensive journey for this young family so I am not afraid to ask for discounts from the team that I sent a lot of business.
A biological dentist needs to remove all Solomon’s mercury fillings, infected root canals, and implants and clean out his cavitations. Since we don’t have experience with East Coast dentists, the fastest and safest way to handle this right now is to bring Solomon to L.A. immediately to see our dentist. Four days later, Solomon and Julia arrive at my apartment and stay with me and Anwar. The next morning at seven, Solomon has an eight-hour dental surgery. Daisy orders Dr. Klinghardt’s Lyme and detox protocol so Solomon can start it at home. We rally around him and give him a crash course in starting his health journey. I absolutely love this couple and am determined to, hopefully, help him reverse, or at least slow down, the course of the monstrous disease. I’m looking forward to seeing Solomon at Dr. Klinghardt’s at the end of November and find out how much improvement he has made. Until then, we FaceTime and I try to be a source of support. There are moments when he gets discouraged just like Ellie did but I’m hopeful that he was brought into my life for a reason. He is a fighting spirit and determined to live for his boys.
My life is still very quiet and isolated, but I am starting to feel a shift as I have grown and cultivated my cocoon of light. I’ve really learned to understand who it is that I am and what my purpose is on Planet Earth. I have gathered the ability to see beyond my own journey to a higher plane and from a larger perspective. Five years of deep quietness and contemplation has brought me to the depth of my soul and the true essence of who I am. It has profoundly impacted my consciousness, since I’ve been forced to let go of time and thoughts and feel only love. I’m receptive and ready to bring hope and guidance on a larger scale to those affected by chronic disease while continuing my search. I’m not sure yet how this is going to shape and form my future, but it will come to me more clearly as time goes by.
It has been two months since my TVAM surgery, and finally I begin to feel and see a difference. I think it has brought down my overall inflammation, and even France, my colonic lady, thinks it has really opened up the flow to my liver and pancreas. A lot of debris and disease that has been stuck in my thirty-foot-long colon is finally starting to move out. My brain function is slowly getting better, too, and though it’s not consistent or reliable yet, I’m so grateful for the progress I’ve made, and the fact that I am writing again is the greatest gift ever. Slow and steady is the name of the game for sure. One day at a time.
One of the most kind, inspiring, and solid women in my life is Rebecca Rothstein, who has protected my interest and helped me navigate my finances for the past seven years. She is one of my guardian angels for sure. October 13 is the Global Lyme Alliance event at Cipriani 42nd Street, where Bella will receive an award for bringing awareness to Lyme disease. Besides the Lyme squad, I also invite Mohamed. I feel it’s important for him to witness the true reality of his daughter’s life.
The morning of the gala is rough. Bella’s in severe pain, and I can’t get her to wake up. It’s not until three o’clock, when hair and makeup people show up, that I’m finally able to get her out of bed. Even after twelve hours of sleep, she is still exhausted. Teenagers often interpret this severe exhaustion as feeling down, and it’s hard for them to understand that this is only from being overtired. Finally, Bella and I get it together and make our way to the event. When the ceremony starts, I make a short speech to introduce Bella, and I’m incredibly proud to do it.
Good evening everyone. Thank you for being here and for sharing this very important night. Most diseases you might want to battle out in the privacy of your home, but Lyme disease is so undervalued and misunderstood by the world that it is an obligation to each and every one of us to share our stories until we get the acknowledgment and respect that we deserve from the medical establishment.
With that said, though, it takes a compassionate heart to be willing to do so. It’s hard for people to understand the invisible disability that ruins our life, especially behind my daughter’s beautiful face that shines so bright on the covers of magazines. Every mother here today understands the hopelessness that comes with nurturing a child who battles a disease without a cure. I am so grateful and proud of my daughter Bella for speaking openly about her journey in order to bring awareness for the hundreds of thousands of teenagers and young adults who suffer just like she does but whose voices can’t be heard. Thank you, Bella, for being the extraordinary person that you are and for bringing HOPE to others. I admire your courage to stand up for what’s right and for joining us in the fight for a Lyme-free world. And, my love, just remember you are not the only one.
After my speech, the group Thirdstory performs “I’m Not the Only One.” At the end of the song, they ask Bella to come up onstage to get her award. All I hear is a lot of noise in the room as I see my baby girl make her way to the stage. I step back. Her acceptance speech is beautiful:
I am so honored to receive this award and I am so happy that I could bring recognition to something that has profoundly changed our lives. I would really like to dedicate this award to all the teenagers in the world who are suffering from this disease without an end in sight. Like a lot of people today, my teenage years were taken from me. I was forced to start homeschooling in my second year of high school because my treatments severely interrupted my days, and eventually I had to give up my horseback riding career that I dreamt of having since I was a young child.
I know what it feels like not to be able to get out of bed from bone pains and exhaustion, days on end. Not wanting to socialize or be around people because the anxiety and brain fog is just too much. Taking naps at lunch on work days just to get through. After years of this, you begin to get used to living with a sickness instead of getting cured and moving on with life. Life isn’t always what it looks like from the outside, and the hardest part of this journey is to be judged by the way you look instead of the way you feel.
We need a proper diagnostic and a cure that is affordable for all so that we can all go out in the world and build the life that we deserve to live. Thank you to my friends and family for being here tonight and every day for the past five years. Your support means the world to me. I am so grateful that I have my amazing mom to force me to take my medication, get IVs, go to our never-ending doctors’ appointments, and for always understanding me when I say “I’m just not okay today.” There is nobody I could have learned my strength from more than from her and our experiences together. Her compassion, patience, practice, and determination to find a cure are beyond words, and I am so lucky to have her. But I am really worried for those who are misunderstood and judged by their loved ones and left without guidance by their doctors and medical establishments. So for them and all of us here, you are not alone and thank you! Let’s raise some money!!!
I’m so proud that Bella finally feels comfortable enough to share her journey with the world. Most teenagers are embarrassed and tend to isolate, but since 25 percent of Lyme patients are children, it’s important for her to use her platform to bring awareness without being afraid of any judgment that might come with it. In the end, this sold-out event raises $2.7 million for proper diagnostics and, hopefully, a cure. I’m so grateful that we can be a part of this movement because, at the end of the day, magazine covers, success, and money don’t matter if we can’t get to the bottom of this and find a cure for Lyme.
October 13, 2016
Uniting for a Lyme-free world. I am so proud of my baby girl for sharing her journe
y and the invisible disability of Lyme disease in order to raise awareness. #LymeDisease #WeMustFindACure #AffordableForAll @globallymealliance
The night after the event, we crawl into bed, snuggle up, and look at pictures from the evening. Bella looks perfectly healthy, and there is no sign of the pain she was in just hours before the event or even during it. Again, photos and social media can’t possibly reveal what really is. You don’t have to look sick to be sick.
Later, Paige tells me that Mohamed teared up during my speech about Bella’s suffering. He also posts a video of Bella’s speech on Instagram and writes the following:
About last night. @bellahadid was on point. And she was so beautiful, poised, and she killed it. Perfection. #globallymealliance I was so proud of her. And support her.
This is all I can ask for: enlightenment and hopefully a deeper understanding of the truth. This is important for Bella. Daddy needs to be there and see that there are so many other people in the world who struggle with the same disease.
I now see Daisy only three mornings a week. We often brainstorm about opening a Lyme clinic one day while we continue our search for a cure. David and I finally have dinner together after nearly a year of not seeing each other. We’ve both been invited to Paul and Mareva’s wedding in Tahiti so I want to connect before that. We meet at the Hotel Bel-Air restaurant and actually have a nice dinner with easy chitchat, just like old friends. It’s pretty amazing that when you truly forgive someone for all the pain he or she has caused you in the past, it opens up a space for gratitude for all the good times you once shared.
Chapter Ninteen
PEOPLE OFTEN FORGET THAT KINDNESS IS FREE.
October 16 is Ellie’s memorial. Paige and I drive down to Santa Barbara. It feels like a somber day. The skies are dark and overcast.
Believe Me Page 32