“We just have to speak up so that people can get better.” It’s a pretty straight forward line in the transcript of one of the stories in Allie Cashel’s new book Suffering the Silence: Chronic Lyme Disease in an Age of Denial (2015), but it’s also a call to action — a call inviting others to find their voices and share their stories to create the public momentum for change. Lyme disease is an epidemic that should be of concern to the general public and yet has too little awareness and far too few answers.

Last week, Allie Cashel read from her book at a special launch event for the new publication at Books Inc. The book chronicles her own battle with Lyme disease and those of several others she interviewed to learn more about the frustrating and perplexing mystery of Lyme, including her father who was first infected with Lyme some 30-plus years ago. The book, which started out as a personal exploration, then a college thesis, is a balanced and authoritative read, presenting straightforward facts poignant reflections about the many complexities that surround the challenging diagnosis and treatment of Lyme disease. Allie’s discussion of the book and her learning process that followed the reading was equally candid and moving.

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And, it’s true that part of that call for others to speak up and share their story is in hopes of creating more empathy and understanding for the many who feel alone or alienated. The stories in the book very convincingly depict the stigma that sends many into personal retreat when dealing with Lyme. “When nobody in your family has had it, you don’t know anybody in town that’s ever had it, doctors are telling you that you don’t have it, just finding somebody that says, ‘I understand,’ can save your life.”

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Allie’s book is more than a collection of stories. It is a genuine call to action with an ambitious objective to change those public perceptions (and misunderstandings). Lyme disease affects over 300,000 new patients every year and a good percentage – due to misdiagnosis or failed treatments – go on to suffer for countless years. But most are in hiding. Lyme disease is not a readily recognizable disease or a comfortable one to discuss. Allie’s philosophy is that only by sharing these stories can we make people more aware, can we help the public recognize the significance of the epidemic and the need to find some better answers. Argues on of the patients in the book, “Look, just do me a favor and make people want to change this. This isn’t cancer; it shouldn’t be impossible to cure. So let’s find something that will do it. Let’s get people excited about making this go away. Maybe then I’ll get my life back.”

Faces of Lyme_just faces_312At Bay Area Lyme, we share Allie’s belief and we invite you to share your story.

Lyme indeed has many faces – young, old, male, female, parent, child, rocker, businessman, athlete, actor, musician, artist … just see some of the stories and the diversity they reflect in our “Faces of Lyme” section here on the website. You will also find Allie’s story told in her own words.

And if you have a story to tell, we’d love to help you share it. Click here for me information.

Together, we can create the momentum for change.

 

35 Comments on “Breaking the Silence: Finding a Voice to Change the Face of Lyme

  1. Lyme-N is a complete scam. I wasted my money and fell for it. I read all of the same fake reviews that you have of people claiming they have their lives back and I wanted the same. Little did my brain-fog brain realize at the time, the majority of these reviews all have the same wording, same praise and same info – because they were all written by the same person! Lyme disease is a very expensive illness because of illegitimate protocols like Lyme-N. Save your money, energy and hope for actual peer-reviewed protocols with proven results. A $3800 ‘donation’ is not a small amount.

    1. I believe Lyme-n helped me dramatically. I’m not 100% sure because I also did 30 days of doxy first and did vital plan for a year+ after.

      I was in really bad shape before I started treatment. I couldn’t work, I couldn’t drive, I couldn’t sleep, I could barely feed myself because I hurt everywhere. I thought I was going to die.

      I started improving after the doxy, but was still really bad. I improved a lot more after the Lyme-n, but still wasn’t doing great so I started vital plan. After another month or so after Lyme-n, I started working again. After a year, I felt dramatically better and weaned off vital plan. After 2 years, I felt maybe as healthy as I’m going to get and realized that I probably had Lyme for 20 years because joint issues that I had for that long are better than they have been for 20 years. Now, 2+ years later I’m doing great as long as I don’t eat gluten or dairy. I get various pains if I eat either, but I think dairy is worse.

      I will say that through the recovery there were ups and downs and many times I thought I was getting worse again. This may have been due to gluten or dairy to some extent as it took some time to realize what they were doing to me.

      My mother was also a chronic Lyme patient and she only took Lyme-n (reluctantly) and she’s doing much better as well. She did not take anything else. I’m not saying it will work for you, but I think it worked for us.

      Vital plan seemed to help me also. My mother couldn’t tolerate vital plan due to digestive sensitivity.

      I will say that it took almost 2 years of recovery time after the treatment. I saw results right away, but my body had a lot of healing to do. Gluten and dairy always set me back.

      Good luck!

  2. My 16-year-old son finished up Lyme-N two months ago and he is a new kid. He was out of school for 5 months due to previous treatments. And even more from just being sick with Lyme and co-infections. He was undiagnosed for 3 years due to faulty CDC testing. I can not say enough about LYME-N. It is a proprietary product which the owner has the right to not disclose what is in it. It is experimental and that is stated. It is GRAS and the ingredients have been reviewed by FDA. I wish it had helped everyone in these comments but that doesn’t mean it is a bad product. Many of us are getting well. We feel very blessed that this is available.

    1. I just finished Lyme-N 60 days and I believe it has saved my life. 2 months of antibiotics didn’t work. Diet change, all the herbs and homeopathic stuff for 6 months did not work. Lyme-N WORKED. So at the very least, every person suffering should use Lyme-N as one of their treatment options when others fail and they feel lost. Just my story, It wasn’t cheap, but worth it to have my life back!

  3. My 30-year-old daughter is 5 days short of her 60 days of Lyme-N. She literally feels like it is killing her! Please – has anyone else felt this bad from treatment and found recovery from it? How long did it take? She is debating whether to do the last 5 days or not. She did take it internally too, as directed for digestive issues. Directions said that she could stop nebulizing “a few days early” as a result – but that was pretty vague. We’re desperate for any direction and would be very grateful for anything anyone can offer. Thank you!

    1. The Lyme-n can cause herx reactions. This did happen to me. I took epsom salt baths every night. Some people like me have mthfr, a gene mutation that prevents us from detoxing effectively. The epsom salt baths help us a lot.

      Read up on that if you aren’t familiar. I took methyl folate, which also seemed to help.

  4. Me, my two teenage sons, and my husband, all used Lyme-N. I was the first to be diagnosed with Lyme after years of hell. Once I got my diagnosis, I knew immediately that my sons had it. We were treated for almost 5 years via antibiotics and supplements, with some improvement on my part and little or no improvement on their parts.

    My sons suffered terrible debilitating symptoms that were barely kept at bay and my middle son was slowly worsening. The mood swings, anger, Parkinson’s-like shaking, Mono-like exhaustion, inability to remember anything, and failing in school (when they could go) .. our lives were a nightmare. Then we discovered Lyme-N and our lives completely changed. Before the 60-day treatment of Lyme-N was even up, I began to see small changes. Within 90 days after they started treatment, I had completely different kids! They were energetic, happy, and doing well in school. My youngest could eat gluten with NO negative effects ~ I could go on and on about all the awful symptoms that just vaporized. That was two years ago. Our lives have completely done a 180 and Lyme-N is the MIRACLE that saved my family, my sanity and our lives. I thank God every day that Lyme disease is in the rear view mirror forever and we no longer have to look forward to a slow, painful death.

    For those with ongoing symptoms: Lyme disease does serious, permanent damage to the body, so the younger you are, the more likely you are to make a fast, more complete recovery. However, some damage to the nerves, brain, and cartilage is permanent. It does not re-grow. So you have to take into account that having Lyme disease is like being in a terrible car accident. Your body may never totally heal or be the same. However, the cause of all the damage has been removed. The healing process can take years and you do have to continue to support your body and deal with adrenal exhaustion (symptoms overlap with Lyme), tight fascia, nerve damage, mold toxicity, candida, food allergies, liver health, etc. Just because symptoms persist does not mean that the spirochetes are not dead. It just means you have some “mop up” to do. Lyme opens the door for SO many other things to come in. Those have to be addressed as well.

  5. The Lyme-N treatment definitely works. My husband and myself have completed it and have had zero Lyme in our bodies for a couple years now. Lyme leaves behind damage to your body that still has to be healed once the Lyme has been dealt with. We spent countless thousands [on treatment] previous to this treatment and we’re still sick. So glad we found it. They work through medical doctors who coordinate with the patient to perform the treatment. If you are doing the treatment, it does kill Lyme. It may not take care of every coinfection, but it will kill your Lyme.

  6. Christine, I finished Lyme-N a few weeks ago and I’m feeling terrible again ????. I don’t know what to do….

    1. Hi Amy,
      It’s been almost two years since your post…can you tell us how you did with Lyme-N? Thank you.

  7. Heads up on Lyme-N. We know many people that have not gotten better on Lyme-N, including myself and other family members. A company’s unwillingness to disclose ingredients should be a red flag as well as their insistance that it is the be-all cure. They make outlandash claims of hundreds getting better, which we believe to be false from what we have seen and experienced (they may give you a small sample to speak with). I don’t believe there exists any peer-reviewed research to show its efficacy. Please, please, please reconsider before spending $$$$. If you have a positive test, do IV abx with biolfilm busters such as bolouke and serrapeptase along with olive leaf extract, japanese knotweed, cat’s claw, and siberian ginseng. If you do not have a positive test but know you have Lyme, find a doc that will aspirate a swollen joint and run a western blot on the synovial fluid (seems to be more senstive). If you have CFS as I have for 3 years and cannot get off the couch, a medication called provigil may help to get your life back…..it has changed mine with the first dose. Please please please stay away from this company.

    1. hi, Interested in chatting with you about your experience with Lyme-n. Considering asking our Lyme doc about it for my son, would you be interested? If so, please send me email with subject heading Lyme.
      Thanks.

    2. Agreed! My children and I just completed the Lyme-N protocol and have not experienced any relief in symptoms. Tonight, my daughter asked me to make an appointment with her llmd because more symptoms are returning….joint pain, chest pain, air hunger, fatigue. I was shocked when I read the post-treatment directions from the Lyme-N owners. Every item symptom literally said, “could take 1-2 yrs to see results.” They also recommended 5-Hour Energy drinks for adrenal fatigue! I was honest and told them that this demonstrates that they do not have a medical professional on staff. And, if I had read these directions initially, I never would have spent the $$$$ for the treatment!

    3. Hi, Rose,

      I’m curious–did you or your family have any negative physical experiences doing the Lyme-N protocol? I do believe that different things work for different people, so what works for someone else may not work for me, and vice versa, as long as it’s not a dangerous protocol. Thank you.

    4. There is a myriad of “curing activities” out there….and some may work! If you have the time, energy, money, etc. Let me tell you a bit of my story: Four out of five members of our family used Lyme-N last year and have had fantastic results! Our 29-year-old daughter was diagnosed with “Fibromyalgia” and Sleep Apnea which were both turned around once she started the Lyme-N treatment. The before vs. the after are incredible! Our experience is that Lyme-N is THE BEST treatment out there! Once we saw her improvement (she had been seeing Drs. for 6 years undiagnosed) we knew we had to put our other daughter on Lyme-N. Then we found out that both of us had it too! Wanting to eliminate it from our household, we decided to go for it. My husband and I have had less dramatic results but that is because we have probably had it longer than our daughters have, as well as not being as symptomatic. Our 25-year-old daughter also used Lyme-N last year and has recovered from severe fatigue, horrible pain in the back of her knees and on the bottom of her feet, etc. It has been miraculous for her!

      Keep in mind that Lyme damages many functions in the body and it takes time for the body to recover and heal. Everybody is infected differently and heals differently as well. We have been healing for about 6 – 10 months and it’s so amazing! Please don’t discount this treatment. It is truly a life saver! Our first born literally felt like she was dying on the intense antibiotic treatment. Lyme-N is literally your body’s “superhero”, it does NO HARM to anything but the Lyme bacteria, and actually aids your body in healing because it is what your body needs anyway! Minerals! A blessing for sure! SO Thankful 🙂

    5. My daughter was treated with Lyme-N after suffering for years with chronic Lyme with debilitating conditions. She followed the Lyme-N protocol and is 95% better. The results were gradual but each month she felt remarkably better and now feels great. Another friend of ours, at our recommendation, went through the same treatment and she is symptom free. It was well worth our money, especially when I think how much we spent before this seeing all the other “lyme literate” doctors. Be patient, it doesn’t work immediately.

  8. Nicole,
    How has your experience been with Lyme-N? Our shipment should arrive any day and I am anxious. Did it bring any relief in symptoms?

    1. Lyme-N kills the Lyme. The symptom relief comes as your body heals from the damage. How bad your bodies damage is depends on how long it takes to feel better.

  9. My doc is recommending Lyme-N and I can’t find much information. I would love to hear your stories… during and directly/6 months/1 year after. Hard to invest $3,800 with so little information.

  10. Both of my daughters were cured with Lyme-N and they are in their 20s with different symptoms that are all related to Lyme. Please proceed with the treatment…it’s a miracle! My husband is also positive via saliva test and my test is being processed. We will both probably be on it soon. Thank God for Lyme-N!

    1. Nancy, Did the Lyme-N cure coinfections (Babesia, Chlamydia, relapsing fever…)? Even just the Boreliosis would be a start at least!

    2. Dear Emily, Nicole, FL, Christine, and Rose, (and anyone else interested),
      Sorry it has taken me so long to reply. I’ve gotten back to living and forgot 🙂 I feel so completely grateful that we were lucky enough to find Lyme-N when we did. Antibiotics don’t kill Lyme, it just makes Borrelia morph into different forms that are even more insidious. Antibiotics also cause all kinds of side effects that are horrible in themselves. You may initially feel better with antibiotics, but you will relapse sooner or later. I wanted to get rid of those little spiros! Four of the five members in our household tested positive and were treated. Our daughters were on it first and it has changed their lives completely! By that, I mean going from just existing to living full young healthy lives. They wanted to sleep ALL day! The fatigue was almost totally debilitating. The oldest daughter was getting night sweats three or four times a night – totally drenched – and had to get up to change each time. Once the Lyme-N was initiated those sweats dissipated to nothing. There are many more symptoms that are cycling away…it just takes time to heal. I would say both daughters are feeling at least 90% themselves. My husband no longer moans and groans from joint pain, he can make quicker easier decisions, and is no longer grumpy. As a result of these changes he is so much easier to be around! I, on the other hand had different symptoms…BPV, Migraines, TMJ, sleep issues, anxiety, confusion, etc. etc. I don’t have any Lyme issues anymore…I finished my treatment at the end of January. The cost does cause one to doubt, but it is a cure, not a bandaid. SO much cheaper than conventional Big Pharma treatment. SO much safer AND quicker to feel better too! I’m beyond happy we found it! And, I understand the skepticism, but, its safe and its a cure, for real! (Fun Fact: Minerals were used to kill bacteria before antibiotics were ever introduced!) Good Luck Everybody! 🙂

    3. So glad you are on the wafting health!!! It saved our lives. People complain about the price, but we have spent that and more on supplements and antibiotics and we’re still sick.

  11. Dawn: I am interested in your experience with Lyme-N. I am starting on it today and would greatly appreciate your reaction. Nicole

  12. Can I send a list of doctors that need serious awareness? Had my child’s pedi call yesterday to tell me,”if my daughter tested positive for Lyme, then it’s no big deal. 10 days of amoxil [amoxicillin] and she’s cured. If its chronic, then she might need 30 days.’ This is a year-and-a-half after her CDC positive test, 3 hospitals, eye doctor, neurologist, and countless referrals for blood work through geneticist that have been cancelled because they were told ‘Lyme cannot be congenital.’ Please help!

    1. We are sorry for your frustrating experience — unfortunately it is not an uncommon issue, especially in pediatrics and despite the high risk exposure of young children — and hope that you can find help with some physicians that are more familiar with the disease. We do have physician referrals here in the Bay area (see Physician Referral on our website). For a more complete and geographically expansive list, you may want to consult the doctor referral application on the Lyme Disease Association site.

    2. In February of this year, I was diagnosed with ALS [Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s disease, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord]. I was tested for Lyme twice with a blood test that came back negative. I recently was diagnosed with Lyme disease after I took a saliva test and it was positive. I start a treatment with a nebulizer on Monday, the Dr. is positive of healing from what he believes is linked together, ALS and Lyme. Check out the website, he has helped a lot of patients with Lyme. Lyme-N. Info. Type that in and I’m praying for relief for your son.

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