Alex Visker: Allergic to most food
By the time he was in 5th grade things were so bad we started to aggressively look for answers. Over the next six years we took him to many, many specialists and had numerous tests done on him. He was diagnosed with everything from constipation to anxiety. In the last few years, because most of his tests came back negative for known illnesses, doctors started trying to tell us it was psychological.
The one thing that did show up on tests was that he had many, many food allergies. It became more and more obvious that many of his problems stemmed from what he ate. He also seemed to react to many environmental factors such as latex, strong chemicals and perfumes being especially bad. Every doctor we went to just scratched their heads, asked us what we were going to do or told us he was crazy. We started to try elimination diets and experimented with alternative medicines and doctors. We still could find no answers.
By November of 2013 things were so bad that Alex had essentially quit eating because it made him so sick and made him hurt so bad. Our 6'2" son was down to 155 lbs. Our family doctor worked with us to start him on a picc line and he began to feel better than he had in years. After four months he felt good enough that we took out the picc line and tried food again. He crashed quickly. At that point we had a feeding tube put into his stomach and he began to live on an elemental formula.
About this same time we found a doctor, Dr. Gleich, who had worked at the Mayo Clinic for many years and did research on similar types of disorders. He believed that Alex had a real physical problem and started to help us. Alex is currently undiagnosed and classified as having a rare disease. He began taking medicines for both severe allergies and a Mast Cell Activation Disorder. (MCAD). This is a newly recognized disorder and it is still extremely difficult to test for an actual diagnosis. The Mast Cell stabilizers are very expensive and one of the ones he takes isn't covered by insurance because they usually don't use it in America. (It is common in Canada and the U.K.) He gets injections of Xolair twice a month that helps with hives but also makes a drastic difference in how he feels overall. He also takes a number of different antihistamines and other medications.
The elemental diet along with the medication made it possible for Alex to have a life of sorts. He managed to graduate from High School with a 3.6 GPA even though he missed over 300 days of school. He was able to go some places and is tried out a part time job for the summer. He still couldn't go anywhere with latex, strong scents, chemicals, or places that are too hot. He avoided most stores, couldn't go to church, and had a limited amount of houses he could visit. He could not eat ANY food. That was mentally been the most difficult thing because he still felt hungry and still craved food.
In spite of this, Alex remained an amazing, positive individual. He cooked food for his friends; he took his girlfriend out for ice cream. He never made anyone feel bad about eating in front of him. He was just excited to feel good enough to not spend all of his time in bed. He fed himself through his feeding tube and put up with all of the strange looks and comments with humor.
All of the years of testing and doctors and medications have taken their toll financially. His medications and formula cost about $7,000.00 a month. As you can guess, we hit our out of pocket maximum quickly. Alex can not work and go to college at the same time. He was not eligible for most scholarships because his illness did not allow him to obtain the high grades and take the hard classes he would have liked to have taken.
After two years on the Elecare Alex began to react to it. This has been a difficult new challenge. He tried several other brands and types of formula but couldn't tolerate any of them very well. After several months of experimentation he finally made the decision to pull the feeding tube, at least for now. This has been a mixed blessing. One of the best things about it is the fact that he is not having to deal with all of the infections he would get in his open wound and the health issues the antibiotics caused him. It also helps his whole system to work better because he is actually using his whole digestive system. And of course he gets to actually taste a few things! But it cause a new problem for figuring out what he could eat. He has been living mosty on black rice and chicken for a few months but is looking for other options that he can tolerate. It seems that anything he eats for too long, his body builds up an allergy to. And it is very difficult to keep him healthy on such a limited diet. He is still dealing with a lot of issues but manages to keep a good attitude!
In spite of this, he is currently attending Fort Hays University online and working towards becoming a computer programmer in order to have a job that he can do in spite of his illness. We were not sure how to make that happen financially as well as pay for his medical bills. But then we were blessed with this Go Fund Me. It is because of the amazingly generous donations from friends and strangers alike that he is being able to do this. Until more research is done on illnesses like Alex's, the prognosis is that there is no cure and that he will have this his whole life. Alex is a fighter and has a great attitude. He is trying to look forward to the future with hope and happiness. Anything you can do to help him go to college is very much appreciated.
Kevin and Jodie Visker (Mom and Dad)
Posted by James Visker
I thought I would give you a little updated. Life is never boring for me! After two years I started to react to the elemental formula I was living on. This was kind of a big problem! It was pretty scary to think about how I was going to stay alive. Thankfully between the medications I am on and the time I have been off of food, I am being able to eat a couple of things. I eat black rice and some chicken and a little bread or cheese sometimes. I am trying to figure out what else I might be able to eat because it seems that no matter what I put in my body, if I put too much in I become allergic to it. I tried several other elemental formulas that exist but I reacted to all of them. So after several months I finally decided to to take out my feeding tube. Now I have two belly buttons! Nothing is sure in my life right now but on the bright side I am attending Fort Hays State University online and working towards a bachelors in Computer programming. That is all thanks to awesome people like you! I have paid for all of my schooling with money from this GoFundMe. I am still amazed daily that so many people care and are willing to help me out. You guys are all amazing! Thank you so much! I promise I will work hard in school and try to not let you down! The other great thing is all of the wonderful people I have met who are also struggling so much. I have been talking to both a 12 year old girl from Missouri, and her mother, who also seems to be allergic to everything. She sent me a Christmas card thanking me for giving her hope. Wow! I was able to travel to Minnesota and meet with Dr. Afrin, a world renowned expert in Mast Cell Diseases. The trip itself was really hard on me but he has been working with me to adjust my medicines to help me feel the best I can. Thanks again everyone, I feel very blessed!
Posted by James Visker
This course has taught him a lot about what his body will allow him to do. He is able to work on it most days but he has realized that for his degree he will need to attend an online college that lets him work at his own pace and doesn't have set deadlines. He will have good days and weeks where he is able to get a lot done and other weeks where he spends most of his time in bed.
He is also getting ready to do some online service for our church. He will be editing and setting up batches of information that others can then go through to find and enter family history information (indexing) into the Family Search website. This is the largest family history website in the world and will bless people world wide who are searching for their ancestry.
He is still fighting to improve his health. He has been working to figure out when exactly to take each medication in order for it to work the very best for him. (For instance, 20 minutes before he "eats" his formula.) He is struggling to keep his weight up because when he is not feeling well, even putting the formula in his feeding tube can make him feel very nauseous. He is really frustrated with this because he can't increase some of his medications unless he can increase his weight and he can't even keep his weight where it was let alone increase it. We bought him some skinny jeans the other day and they still hung loose on him. Ironically he couldn't wear them anyway because he was allergic to them and broke out in a rash.
In spite of this, he remains cheerful and positive. He is very excited to be starting some new endeavors and writes e-mails to all of his friends weekly to stay in touch with them where ever they may be in the world at this point.
Alex was recently interviewed by Barcroft T.V. and has a four and a half minute clip on youtube about him.
Contact this woman, Jacqueline Luna Knapp (Full Moon Acupuncture 212-734-1459), she has helped my son with a lot of food allergies, he used to test positive for all fruits, and almost all foods, now he can eat a lot of things he used to be allergic to. She was recommended by my pediatrician when my son was 16 months and now he is 8 years old, and I know if it wasn't for her he would not be able to eat any kind of food. God Bless you and your son.
Hello Alex, firstly l feel yours and your families pain as my son who is now 18 suffered for five years with reactions to foods. He would vomit every day along with the many other symptoms he present with, to many to mention. Doctors all over the country had no answers except to pump him full of antibiotics. My quest was to heal him. Many sleepless nights of research and trying different things l realised that foods made a difference then l came across the gaps diet and was eager to follow this. We became very strict and followed it to the letter. All organic home cooked meals lots of soup stock, probiotics, and the best supplements to speed up the process. We managed to build up the good bacteria in the gut get rid of the candida, and get his memory back, no more reactions. I hope that you find the answers. If you decide that this might help you at all and you have any questions you can contact me on FB God bless you on your journey. Don't give up. Joanne
It sounds like you have Multiple Chemical Sensitivities (MCS), like me. I've been disabled by MCS since 1999. I feel much better now than I did then. There is help for MCS, but mostly you need to take charge of your own health and life. Nobody will care more about your health than you! Traditional doctors cannot help. All they know and do is write prescriptions. People with MCS need less chemicals in their lives, not more. Drugs often make us worse! The types of practitioners that can help use alternative therapies like avoidance of triggers, chelating out heavy metals, detoxing toxins through saunas etc., nutrition therapy etc. (Environmental doctors, Orthomolecular doctors, NAET (allergy elimination) practitioners, MORA or Bicom practitioners, Naturopaths etc. can help. You need to avoid all chemicals as much as possible... organic foods and nutrients, herbal scent-free personal care and home cleaning products only, filtered air if your environment is polluted, filtered water etc. You should also get tested for Lyme and co-infections, which can cause MCS. Avoiding electromagnetic frequencies (EMF) is also a good idea since many MCSers also develop electro-hypersensitivity. Sleeping grounded (Earthing) has also helped me. I have good info on MCS and home detoxing inexpensively on my website at http://mcs-canada.weebly.com Bonita Poulin Canadian Coordinator GLOBAL RECOGNITION CAMPAIGN Multiple Chemical Sensitivity and other Chemically Induced Illnesses, Diseases & Injury affecting civilians and military personnel http://mcs-canada.weebly.com
I am in the mold abatement business. I would suggest that someone do some investigation of the residence he lives in or the place he spends most of his time. Mold can cause the issues that are being described in his story. If someone from his family will call or contact me, I will guide them thru a very simple inspection of his living space. It will reveal if there is mold or not present in his living space. A. Rahman Ford is describing things the way it can be and it is very often caused by environmental sources. I began the mold treatment business based on personal mold related health issues caused from a home I purchased. I was sick for several years. I am now healthy and living in the house that almost killed me. Sincerely, Art Wenholz 509-750-6792
Our son has battled most of his life with a similar situation .....he is allergic to pretty much everything and was born with intestinal issues.....he has been diagnosed with IBS (irritable bowel syndrome), GERD (gastroesphogeal reflux disease), ATCF (A-typical cystic fibrosis), FTT (failure to thrive) and multiple food intolerances.... He has been on miralax since birth at an adult dosage..as the years have gone on they have added lactulose, duculax, vitamin D supplement, zantac....etc etc...we hit a wall 2 yrs ago with him and he was so back up that he had to be admitted to the childrens hospital for 9 days to have a hospital grade clean out via NG tube....after that I began researching the meds he was on thru a website called gutsense and boy was it an eye opener !! One of the articles is "is miralax the next viaox" this article goes into detail how miralax will cause underlying issues such as GERD and ATCF!! I was pissed to say the least....we had been medicating our son since birth (13 yrs) with meds prescribed by drs......he can not digest foods or absorb thier nutrients! However!! We began him on young living essential oils about 5 months ago and to our amazement he is eating foods (not allergic to), digesting foods properly, growing and gained 10 honest pounds in 6 months!! We too were facing a chest port for daily TPN but thanks to young living oils we no longer face that !! I purchase gel capsules from amazon (as he can not use the young living ones due to allergies) and place 10 drops of pure extra virgin no gmo olive oil into the capsule first then add 2 drops of thieves, 2 drops of peppermint, and 3 drops of digize young living essential oils to the capsule and have him consume one pill twice a day! Please I urge you to have him tested for H-pylori and check out www.gutsense.com and find out about the meds your son is on! It took us over 6 months to wean our son off all his rx meds! But it was sooooo worth it!!
i also have severe food allergies that were misdiagnosed for decades, leaving me crippled and emaciated. if i were a betting man i'd say you have a severe, chronic infection in your gut. could be viral, bacterial, fungal, parasitic or some combination. infections of this kind are routinely misdiagnosed and testing very often misses these infections. please go see a holistic physician, not a mainstream infectious disease doctor. it might be a good idea to try a course of broad spectrum antibiotics and probiotics, then try parasite and fungal meds. i've been on a feeding tube for seven years so i know how difficult it is. despite what doctors are telling you, you can be cured and eat food again. address the bacterial infection in your gut first. and, please, don't rely on doctors to cure you. do your own research, come to your own conclusions, trust your own intuition, and never strop trying to be cured.
Have you looked into mast cell activation disorder or mastocytosis?
Bioset saved my life! Call Ellen Cutler Mill Valley California! Life can get better and you can heal!
I grew up with many similarities but not as severe, i did not have anaphylaxis. Doctors also had all kinds of things to say that didn't help me in any way, made me worse, or basically said nothing was wrong with me. What you need to understand is you need to go to a natural doctor that wants to heal your son and not just manage his problems. It is the best thing that you could do for him. Most modern medicines dont acknowledge or understand how to solve the real problems. What is happening to the body and why did it happen, and how to heal it and not put a bandaid on it. I was put on a strict natural/organic diet and haven't had any problems since, also took glutimine and probiotics as well as bone broth to heal the gut. I also had many more (natural) things to do for my health - vitamins, tumeric, digestive enzymes, and things that helped with inflammation and digestion. Dr Jacob Swilling was who I saw. I urge you to do your research and find someone who will treat him similarly, and wish you the best. Whether or not you believe in this method, PLEASE give it a chance.
Alex, keep up the good fight. I hope you are doing well. I was reading your NY Times article, and I thought, "That's mast cell!" I was recently diagnosed with MCAD (waiting on bloodwork). Obviously, it has rocked my world. I'm in a great Facebook group called "Mastocytosis and Mast Cell Disorders--Integrative and Holistic Approach." We'd welcome you with open arms. All the best,
It's called (SMAS) Artery Syndrome. Only 400 documented cases. BarcroftTV
Hello, We have seen a video about your medical condition and we think that if it's not the same thing, it could be very similar to my son's condition. We are writing to you from Bilbao, Basque Country, in the north of Spain, Europe. We have a son, aged eleven now and up to a year and a half now he has been eating 'Neocate', another elemental formula like the one you eat. Like you, he has a gastrostonomy so he can take the necessary amount of formula each day. For a year now, he has been eating with some gaps but it has definatly improved. Five years ago, we created an association called Garmitxa and two years ago we started a genetic study based on the condition in Valencia, Spain. Our doctors are in contact with the English hospital, Ormond Street, which is also investigaring. We would like to contact you and your family to interchange information, both medical and personal. Thank you for telling people about your situation so that way we can feel less weird. In Spain, it seems that our son is the eldest to be diagnosed out of seven people. We wait for news from you. Thank you.
I am no doctor but I was wondering about something. The food you eat has had virtually all proteins removed from it in order for it to be digestible by you without creating a reaction. I am assuming that this is because doctors have discovered it is the proteins that induce the allergic response. With that knowledge I am wondering whether or not it would be possible for you to consume small amounts of fermented foods? It is my understanding that the proteins have already been digested by the bacteria and as such the body does not recognize them as allergens any more. I have a soy allergy, and this is how I manage to still eat soy without a reaction. Mind you I do not have anaphylactic reactions like you. I wish you all the very best in your journey and hope for a cure. You are an amazing inspirational man with an indomitable spirit.
I just wanted to say thank you for sharing your story. We are fighting for my 2 year old daughter Cheyenne. She was diagnosed with eosinophilia colitis but after a year of testing the doctors retracted that diagnosis and are unsure of a diagnosis for her. She has many similar symptoms to you. Your story inspires me to continue fighting for her. Thank you
Have you been tested fir eosinophilic gastrointestinal disease? Your story sounds just like my son's. He couldn't even tolerate the elemental formulas. He did TPN without lipids since they are made from allergens that he is anaphylactic to. Zolair has given his life back to him. His diet is still very restricted, but he can live with it. He also takes gastrocrom which is a drug made for MCD. He takes steriods due to many autoimmune diseases. But he is a music teacher for the county schools and is studying for a doctorate hoping to be able to teach online when he can no longer go out to work. If you would like to talk with me or him, let me know. Both of us have a disease called mitochondrial disease that is causing all of these problems. I will pray you find the answers.
hello alex, all the way from Saudi Arabia i pray for you, i saw your video few month ago on Barcroft TV, your positivity has inspired me big time, keep up your positive attitude :D and may god help you with your pain ♥
Alex, I have the same issues. That is why I am here- to do gofundme, in order to get me into a doctor I believe may be my answer. His name is Dr. Anthony Smith, in Coeur d Alene, Idaho (DynamicHealthUSA.com). People come to him from all over the World. Though it was previously ruled out, after speaking with others who have been to him (including one who was dying), I believe that I do indeed have Lyme's, from a young age. He has a unique testing & treatment for this illness, which I believe is the answer to my prayers. Perhaps it will be so for you, too. Blessings on ya, Sharian
Hi. My name is Christin. I also became allergic to everything. I'm so sorry you are dealing with this as well. I dont know if you have heard of NAET, but it saved my life and is helping clear these allergies. I hope you receive this message and can find an NAET practioner. Let me know if you have any questions
Hello my name is Marnie. I have son that has down syndrome & he has the same as Alex. When Luke was born I was breastfeeding him, he was not gaining weight the doctor thought that he maybe lactose intolerance so we tried a formula for tha,t but still no weight. So he end up on formula that was already broken down for his body & that seems to work. He is now 3yrs & half but still when ever I give him food he ends up with pain in his tummy & needing to throw up, but he can't for his tummy has been tried. He can only have a 120mls at a time because of the pain so I have to feed him 14 times a day though his micky button. I saw ur youtube and felt to share my story so u guys don't feel alone. I think u guys are doing a great job. I am getting Luke to play with food so when he's older he won't feel so different while others are eating. God bless Marnie & Luke.