Vernon woman shows what Lyme disease really looks like
VERNON – A young Vernon woman battling Lyme disease hopes you’ll share her story.
It couldn’t have been easy to tell, and it’s not always easy to watch, but 21-year-old Amy Soranno’s two-year story of pain and unanswered questions is now laid out in a documentary called Amy’s Complex Case.
The video, which can be viewed on YouTube, includes emotional interviews with Amy, her family and friends, and provides a glimpse into her day-to-day life of doctor visits, fatigue, headaches and joint pain.
The former Seaton Secondary School student was a bubbly, energetic, and healthy young woman up until two years ago when she became ill. Now, she is bedridden and in pain most of the time.
She has since seen numerous doctors and specialists across Canada and the U.S. and been tested for just about everything. Her condition appears to be a combination of Lyme disease, Postural Orthostatic Tachycardia Syndrome (POTS) and Sjogren’s Syndrome.
An online fundraiser has also been established to assist the Soranno family with hefty medical bills associated with Amy’s treatment.
You can view her documentary below. She hopes you'll share it and help increase awareness about the disease.
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To contact the reporter for this story, email Charlotte Helston at chelston@infonews.ca or call 250-309-5230. To contact the editor, email mjones@infonews.ca or call 250-718-2724
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32 responses
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My daughter Shelby Lori is 23, she got hit by the same symptoms at 20. She went to The Sponaugle Wellness Insitute in Oldsmar Fllorida. This dr. saved her life. He tested her for everything, did Pet Scans etc. She found out that she had mold toxicity, mercury toxicity, high levels of benzene, enviromental toxicity, Lyme Disease, Pre MS, hormone problems, you name it. pls conctact me if you wish, paularobmacneil@outlook.com.I have been going thru the exact same thing with my daughter, we`ve tried everything natural and other things, but going to Florida seemed to help the most. We had to have fundraisers to help wth the cost. Doctors in Ontario did not beleive in Lyme and dismissed and misdiagoniosed my daughter and treated her like dirt. Prayers to your lovely, strong daughter and you go mom.
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Thoughts … (forgive me if some of this was addressed in the video) but has anyone looked at your biofilm?Every heard of Boluoke?Been tested for mold toxicity – you won’t ever get well if you can’t detox from mold.Been tested/treated for parasites?leaky gut?Do you have systemic yeast?MTHFR (Ben Lynch) trained doctor?MAS Mat treatment?What are you doing to detox?Dr. David Minkoff Clearwater, FL has good IV program (ozone, silver, Meyer’s cocktail, glutathione… good with oral supplements).Integrative and/or Lyme literate MD’s only – regular docs have no clue and usually do more harm than good; the ones that don’t believe in Lyme will call you (and your Mom) crazy, or will just about kill you with too many IV antibiotics.Still fighting for my 23 yr. old Daughter (after 11 hellish years of undiagnosed Lyme, babesia, bartonella, leaky gut, parasites, yeast, mold, Hashimoto’s, Reiter’s Syndrome, depression, anxiety, pain, pain, pain everywhere…. took more drugs than should be allowed; now 3 years into treatment and no drugs! ).Keep up the good fight – easy for me to say as my Daughter would have welcomed death at times – but when you find the right team who “get it” and who are willing to think outside of the box, you can turn the corner.Wishing you the very best.Watching your video was gut wrenching and broke my heart for your and your loved ones.
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I am SOOOO SORRY that you are suffering like this every day Amy I will keep you in my heart and prayers sweetheart ….. I can’t believe that we live in a country that allows people to be in constant pain daily yet it is inhumane to allow an animal to suffer …. yet we suffer every day !! This is so wrong. My love to you and your momma she is one strong woman …. I guess thats where you got your strengths and determination xxxooo I will prayfor a cure to come through this process some how soon xxoo until then ….. my heart breaks for you sunshine girl xxxxxxxxxxoooooooooo
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So very sorry for all you are going through – sadly, a repeat of many of us with Lyme.Thank you for telling your story and bringing more awareness.
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Hi Amy my name is samantha and I also have a mistery illness that is looking like it could be Lyme, I recognise many of your struggles unfortunately! I live in England but would very much like to keep in contact in some way? Sending you love and understanding. Sam. Xxxxx
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The whole time I was watching this I was thinking, I hope someone gives Amy IVIG!I’m so glad to see at the end of the video that she’s been referred for IVIG.I developed an acute onset of POTS/Sjogren’s at the age of 31 and was bedridden feeling like I was going to die for the first two years.I went through all of the same tests and procedures and meds you listed.It was a nightmare. When I diagnosed with Sjogren’s at the Cleveland Clinic I received IVIG.After a few infusions I was ice skating. I am not cured, but my life is good and I am no longer bedridden.IVIG has been my magic juice.Amy or mom, if you are reading this, please feel free to contact me (info@dysautonomiainternational.org). I run an online support group for dysautonomia patients who are on IVIG, and another one for Sjogren’s patients who have POTS.I’m working on one of the first POTS/Sjogren’s research studies right now. I also run Dysautonomia International, a non-profit that, among others things, is funding POTS antibody research at Calgary, Vanderbilt, Mayo Clinic and the University of Oklahoma.I hope you have connected with Dr. Satish Raj at Calgary, as he is the best autonomic expert in Canada and he’s also very involved with the POTS antibodies research.I was dismayed to hear that your rheumatologist told you there was nothing that could be done for Sjogren’s or that the drugs were too toxic. I hope you have fired him and found a better one. Sjogren’s is the second most common cause of autonomic neuropathy (diabetes is #1).If Sjogren’s is not treated, it can progress and can cause symptoms throughout the body.There is no organ or tissue that can’t be impacted by Sjogren’s.Clueless doctors, even rheumatologists, assume it’s just dry eyes/dry mouth.Not even close.If you have overlapping Lyme, IVIG may help that too.Dr. Katz at Yale uses IVIG in severe Lyme cases, and there are some journal articles indicating that chronic Lyme may actually be an autoimmune condition.I’m not saying the Lyme isn’t part of the problem, but if you have two known autoimmune diseases (Sjogren’s and Celiac), plus POTS, which recent research indicates may have an autoimmune basis, then you HAVE to treat the autoimmunity to get better, even if you have Lyme too.Immune suppressing drugs could potentially make Lyme worse, but IVIG actually boosts the immune system while at the same time calming down autoimmunity, so it’s a great option to try.Take it from someone who has been down this same road… it can get better!Keep pushing for answers.
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I would like to contact Amy or her mother if at all possible. I have some info that could be of very important help. I have been very sick for 6 month now and doing the bounce between doctors and hospitals. I live in the Shuswap. My number is 250 318 3139. would like to share my info for Amy. Thank you for this news story. Angie Clark.
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Our prayers are right there with you Amy.We have a front row seat very similar to your story with our own precious daughter, Heather who has had Chronic Lyme Disease for over 7 years now.
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this shows Doctors need more research to help them but they also have to want to believe That A person knows what is happening and In this case they are still guessing.
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I can understand to a small fraction what you are going through as I have been having some health issues that the Drs cannot figure out. I have learned alot along my healing journey and would love to help however I can. Please feel free to get in touch with me:) sending love and energy your way.:)
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Amy, keep your head up—-you can and will get better! Amy, please go see a naturopath and look into holistic health as the medical system has failed us. I would also try to get in touch with Dr klinghardt in Seattle, he is an expert in Lymes. http://www.klinghardtacademy.com/Lyme-Disease/
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The physicians in Canada & the USA can only treat a patient for Lyme disease “IF” that patient comes in to them with the tick still attached or in a jar.Plus they require that the person display a bulls-eye rash.(Only about 20 %- 50 %of people who are bitten by a tick will get that rash but they can still have Lyme disease).However if a doctor treats a patient for Lyme disease after they give the relatively short rounds of antibiotics (if memory serves about 6 – 8 weeks)… the the powers that be will take their medical licence away.They can’t practice medicine at all.That’s why they aren’t treating it.Totally ridiculous law!People are dying.
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I will keep on raising awareness for this disease.. as I have for many years.. it is a heart breaking life to live for all families dealing with Lyme disease.. I understand it for I educate myself about it.. so that I can do all that I can to help in my own way.. Prayers to all that need them and love to all~ Beautiful and heart warming comments here.. supportive and informational as well..I appreciate it so much when people care enough to voice their words..~ Melanie~xoxoxo
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so sad this is and I am sorry to hear about your niece.. I have always tried my best to bring this disease to peoples attention.. just watched this video my friend has posted.. everyone should see this.. everyone~even though I don’t personally know anyone suffering with Lyme disease, the suffering of any human being is personal enough for me to keep on raising awareness.. It must be shouted out and more needs to be done in the medical profession to make them realize that this is a medical condition that needs to be addressed for what it is~I send love and positive energy to you and your family.. for I know you all are suffering when a loved one is so sick~Take care Lynda.. and I pray for all those who need prayers~ <3
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I was brought to tear watching this beautiful young lady and the people that love her suffer so much , if I had a magic wand the first thing I would do would be to take away her pain… hoping something for relief is found soon…
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It’s the CDC, IDSA, Government, Big Pharma, that are to blame. They deny Chronic Lyme, but they DO know that it exists, they won’t admit it..they are making too much money on people being sick, & they would have to admit they have all colluded to deny this debilitating disease that was inflicted on people. This is long been exposed, most people, unless affected or someone they love or know affected, do not know the true facts. Until laws are changed & we get accurate tests and appropriate medical attention and adequate medical help, this will not get any better. Some people in high places are going to have to make these changes or we will continue to suffer….all of us….
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“Lyme disease may be difficult to diagnose because many of its symptoms mimic those of other disorders. Although a tick bite is an important clue for diagnosis, many patients cannot recall having been bitten by a tick. This is not surprising because the tick is tiny, and a tick bite is usually painless.” http://www.webmd.com/rheumatoid-arthritis/arthritis-lyme-disease?page=6I doubt doctors would avoid diagnosing a patient for Lyme disease unless it was not easy to detect in the early stages of contracting it. Antibiotics can help in mostcases if caught early enough but sadly we are still learning more about this diseases. At one point there was a vaccine but it had complications of people becoming sick. Today’s society worries more about money then good health, and since there is no “pharmaceutical cure” little research is put into this disease, also because the majority which are infected tend to be in the lower class of this economic society there isn’t money going towards learning more about it and finding accurate early stages testing and more advance treatment.
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My heart is aching for this girl and tears flowing.Never realized just how bad Lyme disease was.Wishing her and everyone that has this a cure. nowGod Bless.
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You can help Amy by donating here… http://www.gofundme.com/v3df9kor emailing amyscomplexcase@hotmail.com.
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You can help Amy by donating here… http://www.gofundme.com/v3df9k or emailing amyscomplexcase@hotmail.com.
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Devastating… Poor Amy… I can’t even imagine going through what she’s going through..I would be trying Cannabis Oil myself…
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Just for some relief, please try medical marijuana. It is God’s gift for impossible situations like Amy has. My heart breaks for you.
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My heart goes out to you , for all you have endured, I am suggesting you contact Adam McLeod The Dream Healer, in Vancouver, this man has had people walk up to him and he tells them what they have, and people who had 3 months or less to live recovered, and also he is the man who saved Ronnie Proffit Life, I know of friends who have seen him and he saved there lives, it costs 120.00 a visit I believe , but its worth it, he saved so many peoples llives. I hope you check him out the DreamHealer I wish you well, and stay positive :)
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Amy you are very strong and have gone through a lot of trauma you are one of few and far that can show so many other people not to give up that there is hope I admire your courage and your will power that you have with in and I know that your family will get answer to help you as you learned your hope and courage and will to not give up from your parent hugs to you all Get better as I have faith and I know there will be many others that watch your video will feel the same.
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Stories like Amy’s are repeated by thousands of people, not just in Canada and the U.S., but in many countries around the world.This is so unnecessary!If more physicians would learn about the latest research, the suffering of thousands of people could be alleviated.Current scientifically-validated information about Lyme disease and other tick-borne diseases is available in a series of brief informative videos that can be found at http://www.youtube.com/user/LymeActionNetwork.
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When are the doctors in the Okanagan going to realize this is real!My niece has suffered for two years and still doctors don’t believe it can believe in Lyme disease.They all need to believe it is real.God bless you Amy in your journey!
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