My Life Derailed.
I was looking at Facebook this morning and noticed another mother made a comment about going through PTSD the day after seeing the NYC Premiere of Trace Amounts. So I thought I would share my own PTSD experience that I had while watching the powerful documentary film last night.
Most people hear vaccine reaction and think of the hot debate about whether or not vaccines cause Autism. But what about someone like me?
Last night I attended the premiere of a documentary film called "Trace Amounts" which included Robert Kennedy Jr as one of the speakers. It was a wonderful event as I got to see all my fellow parent friends who are also raising a child with autism. The film was very informative and I got a copy of Mr. Kennedy's book which he signed for everyone.
What I didn't expect was to go home and relive my own vaccine injury with such intense anger and anxiety that it was hard to fall asleep. Looking back I should have taken my husband up on his offer to attend the afterparty just to have one drink, since we really don't get many opportunity's to see everyone.
Instead I decided to go home so I could have my wits about me in the morning to deal with all the research that needed to be done. Research into what natural supplements could control my son's most recent PANDAS flare that is making his OCD off the charts even for one of the world's most patient mom's!
On the way home in the cab, I began casually discussing how similar my adverse reaction to a tetanus shot and mercury poisoning was to the filmmakers. And just prior to seeing the movie, I had been telling my husband over dinner that I still have strong residual symptoms from my vaccine injury eventhough I consider myself to be recovered. I still have major sound sensitvity and adverse feelings to being soaking wet. I can no longer swim with my head under water and I am not able to wash my hair that often. However these symptoms are nothing compared to what I experienced in 1999.
Back then I though my life had finally all came together and I deserved it after a somewhat tumultuous childhood. I was 29 years old and had my dream job as an on-air television news reporter. I had just met the love of my life and truly thought how could life get any better. Never could I imagine how far one could fall so quickly.
It all started with a trip from NYC with my husband who was my boyfriend then to my brother's rental beach house in Long Beach Island. I was doing some laundry when suddenly a vent above the dryer unhinged from the wall and hit me in the corner of my eye. I grabbed my face and ran to the bathroom mirror all the while praying with each footstep that I would still be able to see out of that very eye. I looked in the mirror and gasped at how I suddenly resembled a heavy weight boxer after one really bad punch. My eye was swollen to almost 5x's it's normal size. We immediately ran to one of the only clinics on the island. They thought I would be fine and that the tiny gash right next to my eye did not need stiches. I admit to being very vain at the time and insisted on going to a NYC hospital to get a couple stiches since I was an on air news reporter. My boyfriend diligantly drove me to NYC's Lenox Hill Hospital ER where they called the plastic surgeon to come in and give me a couple stiches that I barely needed. He also gave me one more thing I did not need and unfortunately it would derail my entire life as I once knew it. A tetanus shot. I remember only worrying that my arm might hurt for most of the next day, since I remember that happening when I was much younger. That would turn out to be the least of my worries. Never could I imagine the roller coaster ride into the abyss that I would experience for the following two years. I guess in retrospect it all seems like boot camp for my son's vaccine induced autism that I am still living today.
I started to experience many odd symptoms such as feeling itchy each time I was in the sun and sinus headaches when I stood next to anyone reading a newspaper. The smell of the ink in the NY Post was the worst for me. These symptoms were pale in comparison to what I would experience once I combined this vaccine injury with mercury poisoning from a mercury filling that was removed unprotected a few months later. It was an emergency root canal that ultimately led me to feel like I was having a nervous breakdown with even more odd symptoms like seeing tracers and feeling like drool was rolling down one side of my face all the time. Then weeks later came the horrible neurological and emotional symptoms.
I thought how could this be happening when I just moved in with my boyfriend and life was looking so good. Instead I traded everything I knew for many doctor visits with mainstream md's who all acted like I was crazy and the symptoms weren't real. I ended up in a $400 an hour psychiatrists office twice a week who dangerously convinced me that my job was too stressful with daily deadlines and maybe I had been neglecting my emotions until it all built up finally spilling over. All I thought was I have been in therapy for the last 17 years ever since my mother killed herself. I have been dissecting every minute emotion that I have had since then, so what couldv'e built up?
Despite the fact that I didn't agree with his diagnosis, I could not ignore that I got worse with each passing day. I cried all the time. I understand exactly why children with Autism hit themselves. I know the feeling all too well. After ruminating for weeks, I finally had to quit that dream job. I had become not functional. I remember my lowest moment which again now feels like boot camp for what would become an even worse experience with my son Dylan. I even remember what I wore that day standing in my now husbands apartment in the dark. I had just come back from another heavy intense psychiatry session and he had finally talked me into taking an anti-depressant. This was after I was adamant about not taking one since my mom's adverse reaction to an SSRI. The one she took killed her. I watched in horror as my mom tried to kill herself for 23 days straight. So you can only imagine why I was so nervous to try one. But I was desperate beyond anything. I wanted my life back.
I stood in that dark kitchen a few hours after taking that pill and I felt even worse. I will never know if it was the baggage and anxiety that surrounded the pill or if I am that sensitive to pharmacology. I believe the latter occurred. But I thought I am never going to be normal again. And I looked at the door leading to the 8th floor terrace and I thought I should just do it. And I really thought it! Then my mind wandered to the friendly doorman (thank god for him) and I thought no, I could not do that to him. So instead I picked up the phone and told the psychiatrist that no ifs ands or buts I was throwing the medication away. I decided I was going to take charge and will myself to get better if nobody could help me. I trudged through life for another six months and focused on my loving relationship with my husband. This is the same one that has gotten me through my second descent into the abyss of Autism with my son's vaccine injury.
Like the filmmaker, Eric Gladen, I threw myself into filmmaking and spent the next 3 years producing a documentary film on my experience with my mother's suicide. I married the love of my life and was on top of the world again. This was until the next bigger bomb dropped….my baby boy's vaccine injury that left him like a stroke victim until I was slowly able to get his speech back a couple years ago. I am grateful for everyday that he continues to make progress. I am grateful for how he saved me, since I did every treatment on myself that I did to him. And one day I will tell his baby sister how he took a bullet for all of us, but especially her. But I am most grateful to know the most courageous and genuine person I have ever met.
The last eight years of my life have been so focused on recovering Dylan and what he is missing out on. I forget about what happened to me and how I too got my life derailed. And last night after the NYC Premiere of Trace Amounts I allowed myself to be selfish for just a couple hours and mourn how much got taken away from me. And how much of what happened to me probably affected Dylan and our family forever. I still feel trace amounts of resentment for me and my life that got derailed.
Dara Berger is currently a screenplay writer that just finished writing her first feature length film about her experience raising a child on the autism spectrum. She is a also a documentary filmmaker that started her own production company in 2003 to produce documentary projects on important topics such as mental health issues. Dara has also volunteered her time extensively over the last six years to the National Autism Association NY Metro Chapter helping to plan events that support and educate families in the community.
Dear Dara, Thankyou so much for sharing your story, and I am so happy to know that you are a film maker. Please spend your life telling the truth about mercury. There may hardly be a family in the US that has not been affected by mercury somewhere- and so few would know it.
My most recent experience is watching my husband some back from second stage Alzheimers with the simple use of products used by kids with autism and by adults who have mercury toxicity from fish or dental amalgams. It only took a month or two. The two most useful items being Haritake and methyl B 12 injections - given in a larger dose twice a month only. So I can credit the kids with autism for saving my husband, I guess. I dont consider him "cured", but so long as he continues with his products he will probably do ok - or maybe we can convince him to get the mercury out of his mouth !
Posted by: Cherry Sperlin Misra | April 01, 2015 at 02:03 AM
This is long but a very interesting story about a head injury (which of course, vaccines could cause mimicking the damage from a concussion) and how the victim experienced OCD--which for her got better through neurofeedback. What I found amazing was that she needed change to be "even" for example and could not let that go even though she (an MBA) "knew" that it didn't make sense. For her, neurofeedback helped her drop the OCD by giving her brain a way to see what it was doing.
http://www.mindpath.com/neurofeedback/my-story/
Posted by: Our Bodies = Our Lives, Our Children's Bodies = Their Lives | March 30, 2015 at 03:23 PM
Thank you all, especially Ms.Berger, for sharing your very personal and emotionally wrenching experiences with us. I too attended the screening last Tuesday at NYU Law, and was left - as you so accurately stated, traumatized. Liked you I skipped the after-party to get a head start on Wednesday. But perhaps this was an unwise decision, as sleep eluded me as I lay in my bed that night.
One thing they didn't mention on Tuesday night was how many times I was told, "You can't blame your daughter's autism on the vaccines - it's genetic. You simply didn't notice the symptoms before she was 18 or 20 months old." Let's add insult to injury.
Taking on Big Pharma is tough enough. But on this issue of vaccines we are taking on the government. Don't forget from whom, many of those scientists who make statements on the safety of vaccines, get their funding. This is a tough fight - but we must stay strong.
Posted by: Jeannie M McGuire | March 30, 2015 at 02:49 PM
CA people (and others!) Go here:
http://gathr.us
Put in the correct location for you.
Trace amounts is screening in Berkeley at the Shattuck theatre tomorrow Mar 31, 07:30 pm if they get enough people.
WHERE:
Shattuck Cinemas
2230 Shattuck Avenue. Berkeley, CA
I believe it is also in San Jose tonight but can't find details. If not it is in Santa Clara May 4 if they get enough people.
Posted by: Anita Donnelly | March 30, 2015 at 02:44 PM
Thank you for sharing. My (unaffected) 14 y.o. daughter and I attended the NYC screening as well. It was hard on both of us and I couldn't sleep that night either. My daughter stayed home from school the next day. She's worried about her family because of the pending vaccination mandates. Nothing in the movie was news to me but the combined experience of having it so clearly presented and being in a room with so many like-minded folks was overwhelming. My husband is a Vet and has had many health issues as well as autoimmune disease. His immunologist believes he has ASIA (autoimmune/autoinflammatory syndrome induced by adjuvants). My son also has autoimmune disease and is a bit on the spectrum. What's hard to revisit is the plain evidence that folks in industry and government know what they've done to us and still continue on. I try not to stay in a place of anger or fear but some days it's not so easy. Thank goodness for all of you here.
Posted by: CD | March 30, 2015 at 11:17 AM
My son is now 24, fell into 'autism' at 18 months within a week of his cocktail of vaccinations including MMR, of course. He still had a vocabulary of several words, but at age 3 received a tetanus shot...the following several weeks he spent wandering around making strange repetitive noises..and then he stopped. He has not spoken since. Again, he just turned 24 years old in March 2015. He actually has spoken 3 times since age 3... At age 5 he talked in his sleep saying" What are you doing here", at age 11 he said, " yes they did." And at age 15 he said, "I don't know!" These were all appropriate comments, but of course heard by his sisters, and people other than me. He has also developed some very severe tics and was diagnosed with Tourette's at age 17. The neurologist wanted to prescribe Paxil and Risperdal, I refused because I attributed his prompt dependent ness and his tics to the previous 'scripts of Risperdal, which After much research found that a possible permanent side effect is 'tar dive dyskinesia, affecting the basal ganglia....now I have to wonder about Pandas...his OCD HAS BEEN VERY OUT OF CONTROL...and he has developed a spitting tic...spits almost constantly. At my wits end..ready to pull him out of all his activities. He also has not been sleeping much the last year or so...on top of all of his issues I injured my back over a year ago and can barely walk most days, in lots of pain... And it is just me and him...no other support... So if you have a support system... COUNT YOUR BLESSINGS,
Posted by: Lindy Schultz | March 30, 2015 at 01:01 AM
http://www.dailymail.co.uk/news/article-3016859/All-British-babies-new-meningitis-B-vaccine-landmark-deal-months-negotiation-price-finally-resolved.html
This scares me.
Posted by: patricia | March 29, 2015 at 01:18 PM
Catherine
The parallels in the lyme and autism stories are amazing to me.
This story of Chris Valerio is some of the worst this disease can do
Philadelphia.cbslocal.com/2014/7/7/health
The poughkeepsie journal did a series on lyme and i hope they win a pulitzer since no one else has the courage to do it.
I often think how autism had the simpsonwood conference and lyme the dearborn conference. And drs and scientists denying the damage and its sources.
I know of a woman whose dr told her - i am tired of running these expensive tests for your symptom of the week. I am done. And walked out on her. Most lyme patients dont even get that far.
I wish our country worried less about patents and more about solutions.
And i am sorry for your familys suffering.
Posted by: grey one | March 29, 2015 at 12:01 PM
Sorry I did not get to meet you at Trace Amounts. I am also sorry you have a vaccine injured child like so many of us but I am grateful you are fighting for our side!
Posted by: Heidi | March 29, 2015 at 11:44 AM
I have a son with vaccine induced autism and I too have had vaccine injury. I never put the pieces together until last year, 2014, a full 9 years after we knew my son had been injured by vaccines. A pediatrician we had moved to 9 years ago told us to stop vaccinating our son, very sick with chronic infections and pneumonia. The pediatrician said "stop all vaccines right now and for a long time, until we can get your son feeling better!" He did mention PDD, but coupled with the "stop vaccinating", we went home and looked them up and my heart died a bit that day. This doctor told us, with really not telling us in a way that get his license taken about vaccines and autism. I still praise God for what that doctor said, we took his advice and stopped vaccinating, had we not my son could've been much worse.
Vaccine injury has altered my whole life, after an MMR when I was 3 years old I developed severe diarrhea for 4 years. My mother told me the doctor laughed at her for being so concerned and for wanting to change my diet. My mother stopped feeding me wheat and dairy and my condition got better. At age 8, I had my last mandated shot for school, DPT (not DTAP, this was 1983), the next morning I had a gran mal seizure. What is still frustrating to me today, is not a single doctor, nurse or neurologist asked about getting a vaccine. I was put on Tegretol for the next 7 years and labeled epileptic, seizure disorder unknown. I went on two have 2 more seizures at the age of 12, but most of my memory from childhood is gone so I am unable to trace anything related to that event. The medicine was awful, I gained so much weight and finally lost a lot after graduating high school. I had severe anxiety, depression and still do today. 4 years ago, I sliced my thumb open and after my stitches, the nurse came at me with a DTAP, I said "no, doesn't that still have mercury in it?" She said "no, they took it out of most shots." I still did not want it, I said no again and she jabbed it into my arm. Along with replacing old mercury amalgams that was not properly done and that DTAP, I have now developed an autoimmune disorder, more severe depression and possibly starting CFS.
As you can see, vaccine injury has damaged me and my son. I struggle to function everyday but always muster up the energy to continue healing my son from his vaccine injury, a journey we started 8 years ago. I have not attempted to heal myself as my little bit of energy is spent on autism 24/7. I am so glad to see another parent tell their own vaccine injury story, I believe there are many of us parents with vaccine injured children who have experienced vaccine injury themselves and may not be aware of it. It is sad that the conventional medical establishment has developed a culture around injury, illness or death after vaccines as merely a coincidence, I know, that thinking took me and my family 31 years to finally see the truth about my own vaccine injury. Had we known sooner, I possibly could've prevented it in my son.
Posted by: Kelley | March 29, 2015 at 11:38 AM
Although I myself have not suffered from a vaccine injury, I do have some sense of what my two autistic sons experienced after contracting meningitis as the result of a lyme infection many years after their birth. The resulting brain inflammation left me incapacitated during the initial infection and suffering from permanent cognitive loss there after. To know now intimately the excruciating pain my poor sons experienced as babies causes me extreme grief. I would often ask Ben "what's wrong?" during his prolonged crying spells, never suspecting his brain was on fire. In my prayers I apologize to them for not knowing better.
Posted by: Catherine | March 29, 2015 at 10:54 AM
Glad you are here to share your story.
Posted by: grey one | March 29, 2015 at 07:34 AM
I'm sorry I don't have time to write more this morning. Just two quick comments:
Re: your son's PANDA's OCD, have you tried N-acetyl-L-cysteine? I have been taking it myself, for interstitial cystitis, and have been amazed at the results. But when I originally did research on it, I saw studies that referenced its powerful effects on OCD. If you haven't tried it yet, just one word of caution: It can cause side effects, including headache and nausea. I buy the GNC brand (another brand I tried didn't work as well), at 600 mg, and dump out about 50 percent from each capsule -- to make it about 300 mg -- then take it three times a day with meals. Taking it with meals is very important to avoid the mild burning/nausea sensation, which most likely is due to the sulfer content. Also, on that note, I had had bad reactions to sulfer medicines in the past and was told I must be allergic, but I am handling this one just fine as long as I take it in smaller dosages and with meals.
Also, re: your mom's deadly reaction to SSRIs, did everyone see the study that came out a few weeks ago, in which a scientist looked back at all the mice studies and concluded that depression is caused by TOO MUCH SEROTONIN, not too little. SSRIs increase serotonin. thus, it is little wonder than people kill themselves when they start on SSRIs and that the vast majority of people who take them report no benefit; these drugs may be doing exactly the opposite of what people actually need. That's how little drug companies actually know about the brain.
Posted by: Lisa | March 29, 2015 at 07:21 AM