PHYSICIANS BECOME MORE EFFICIENT
By Barbie Hines
Recently I was diagnosed with rheumatoid arthritis. Imagine that. A mother with an autistic son has an autoimmune disorder! Shocking? Not at all. How the doctor responded, now that is somewhat shocking.
I explained all of my symptoms. He asked many questions, all of them good questions. I was prepared for the diagnosis, as the days of walking into a doctor’s office and trusting he would give me accurate advice and treatment are long gone for me. I had been researching my symptoms for weeks. I knew what was coming. I was aware of the absolutely hateful drugs they are now using to treat the symptoms. I knew they were not even trying to treat much less find the underlying cause of rheumatoid arthritis. Sound familiar?
The doctor ran all the standard blood tests for autoimmune diseases. He also had x-rays done of my hands and hips. All standard procedures. All good practices. He even attempted to be sympathetic. At one point he asked, “With your life, how will you handle this?” I responded, “Oh this is nothing. You should see what my courageous son endures everyday.” He literally rolled his eyes. We have discussed my son before, and he is not a fan of what I have to say about autism!
A few days later I received a call from the doctor’s office. The nurse explained to me that I did not have any fractures in my hands or hips. I laughed out loud. Really, Einstein? She said, “Mrs. Hines, are you alright?” I said, “I’m fine. I didn’t have the x-rays done to look for fractures. We are trying to assess the level of severity of my rheumatoid arthritis. We are also trying to establish a baseline in order to assess the rate of deterioration in the future.” The nurse said she would have to get back to me.
A couple hours later, the nurse called again. “Mrs. Hines, I spoke with the doctor regarding your x-rays. He said your rheumatoid arthritis looks average. And, as I said before, you do not have any fractures.” Refusing to address the ridiculous fracture comment again, I said, “Does the doctor want to meet with me?” She replied, “No he doesn’t, but you are welcome to come in anytime you need an injection of an anti-inflammatory. There is no need to live in pain.” Again, I laughed out loud. Then I said, “Are you serious? The doctor does not want to meet with me and explain the various options of treatment for rheumatoid arthritis? The doctor doesn’t want to give his opinion on the best course of action? He doesn’t want to suggest any lifestyle changes? He doesn’t want to recommend a specialist?!” The nurse replied, “Aren’t you the mom who doesn’t vaccinate?”
Well there it is. The mom who doesn’t vaccinate. Why meet with her? Why bother to explain what is currently being done for her disease? Why offer any suggestions to her? She won’t listen. Hell, she won’t even vaccinate…what a freak!
I laughed for hours. Truly, it is hilarious. I suppose I have medically matured over the past four years. This would have infuriated me in the past. Now it gives me the best laugh I have had in quite awhile. And by the way, what the hell is “average” rheumatoid arthritis?
I suppose the doctor does have a point. I won’t listen to him. Not anymore. Not when it comes to autoimmune issues. Not when it comes to vaccines. I will manage my treatment just as I manage my son’s treatment. On my own, relying on my own research, relying on my crazy, alternative, non-vaccinating friends and practitioners, with my devoted husband working tirelessly at my side. In the end, I suppose the doctor saved us both some time.
Thanks, Doc!
Barbie Hines is the proud mother of a 5 year old boy, Jimmy, who is afflicted with autism. Along with Reagan (Jimmy's sister) and Jimmy's adoring father, they live in a suburb of Chicago, Illinois.
I stumbled upon this article after doing a google search as to why my mercury poisoning symptoms are so similar to those symptoms of autistic children. I am still trying to wrap my head around this.
Since I was very little, I have had a crazy bad immune system, sulfa allergies, asthma, colic, etc. and it has been a rollercoater since. I was inadvertantly loading poisons in an already sensitive body with my mercury fillings, vaccines, etc.
So now, at 29, I am working with a DAN! doctor and using biomedical intervention to get better. It is working. I can't scream this loud enough.
Lately, I have been toying with the idea of having kids one day. And then I think about the mother's of autistic kids and how, even though they are begging to be heard, many of their pleas fall on deaf ears, or worse, they are made to feel like bad mothers for not wanting to pump kids full of this crap. Barbie, you are an inspiration. Keep of the good fight.
Posted by: Simba | March 20, 2010 at 02:32 PM
I don't know where to start. I am so amazed at all of the people out there that are going through the same thing as I am. I have been diagnosed with Hashimoto's thyroiditis. I have two sons 10 and 5 who are both autistic. Why isn't there any research out there about this connection between auto immune disorders in mothers and subsequent autism in there children. This really needs to be looked into.
Heather
Posted by: Heather | December 19, 2009 at 05:12 PM
I have Hashimoto's Disease and I am newly pregnant. My second child has some sensory problems and sees an OT weekly. I am curious if anyone knows any statistics linking Hashimoto's and Autism. I only know two other women with this disease and one has a child with Autism and the other has a child with severe SPD. The doctors only want to discuss my risk of chromosomal problems because I just turned 36. My husband and I would appreciate any information that anyone may have.
Posted by: Martina Baerman | July 06, 2009 at 10:17 PM
I'm sorry to hear.
Unfortunately, I have been in contact over the years with many parents with children with autism and they also had autoimmune disorders such as MS, Lupus, rheumatoid arthritis, diabetes, etc. Also I know of two families that their sons with autism developed diabetes after getting the hepatitis B vaccines.
Unfortunately there aren't any research studies in this......the NIH and Autism Speaks are more interested in looking at genetics. They don't realize that autism is not nor never will be a genetic epidemic. People have to realize that the NIH and Autism Speaks are circus performers.......the Big Top Clowns.
Posted by: Raymond Gallup | March 01, 2008 at 01:55 PM
Dear Barbie
I am a mom of two autistic children, who also have tested positive for lyme. Lyme can mimic not only the autism, but your RA. Please get tested with www.igenex.com, and email me private for further instructions and good doctors to treat. I know vaccines act as catalyst for this infection. Most moms with autoimmune diseases have lyme and mycoplasma. This is treatable. From what I have seen, they have thyroid disorders, RA, MS, Lupus, CFS, FIBRO, and a host of autoimmune problems. This is because autoimunity genes and lyme don't mix, or should I say, lyme loves autoimmune propensities. Especialy low C4B, C4, C3, HLA, DR2, and HLA DR3 types. These are common in our kids, and us moms. Pleaes go through my website, and read many articles written by myself on the web, Kathy Blanco, Lyme, google search, LOL.
I hope this helps!
Kathy Blanco
Posted by: Kathy Blanco | March 01, 2008 at 12:41 PM
please email me privately...I can suggest someone (alternative) who can def help your ra
Posted by: kn | February 10, 2008 at 05:57 PM
Good article Barbie, very thought provoking. That sucks about your RA Dx. There are very interesting comments here I want to look into. I wonder if there’s a study/message board for auto-immune disorder moms of ASD kids. Seems to be all too common. Within the last few years it’s been suggested I have RA, CFS, fibromyalgia, and/or Reactive arthritis. Nothing has been really conclusive, but I do have rheumatoid nodulosis and am dead tired often. My rheumatologist wanted to put me on all sort of risky drugs, but the only one I agreed to was Celebrex, because I had recently been Dx’ed with a bleeding disorder (missed by whole life by allopathic doctors and figured out by a holistic doctor), so I couldn’t take Advil, etc. My rheumatologist. and pharmacist both missed my well documented sulfa allergy so I had an allergic reaction to the Celebrex (a sulfa drug). Needless to say, my distrust and disappointment in mainstream medical providers increased. I have found the best help with vitamins, supplements and diet modifications (sound familiar?).
Posted by: Heather | February 10, 2008 at 01:49 PM
Great article Barbie and I'm very sorry to hear about the RA. Dan's post about Donald T makes me wonder if Donald T also had GI problems. Michelle has autism, Crohn's disease and arthritis and from what I read from other parents, there are other children who have swollen joints and early stage arthritis along with severe GI disease. I wish you the best in your treatment and control of the RA.
Posted by: Theresa Cedillo | February 10, 2008 at 12:33 AM
Barbie~ Best of luck to you in your journey to heal both yourself and your son. I also suffer from autoimmune disease -thyroid. This past summer I had a major flare up and noticed that I could not focus, was quite anxious, and had sensory defensiveness...very similar to some of the challenges my son with PDD-NOS faces. And like you, I found my highly touted endocrinologist to be a complete waste of my time. All he could offer me was a medication with potentially serious side effects, including liver failure; or a procedure to kill off part of my thyroid. So I weaned myself off the medication and have gone into a remission of sorts, using alternative treatments. (Melatonin, which not only helps regulate the sleep cycle but is also a powerful antioxidant was incredibly effective.) Currently I have NO symptoms whatsoever, and am not planning to see the useless Endo anymore. And ironically I am also in the Chicago suburbs....I wonder if your worthless doctor knows my worthless doctor?
Posted by: Karen | February 09, 2008 at 09:26 PM
Kim:
Thank you...I will definitely look into this...I truly appreciate the info!
Brooke:
Drinks at Autism One it is...cannot wait!
Posted by: Barbie Hines | February 09, 2008 at 08:00 PM
AMBER - and Barbie too - my dentist just took his son, who has severe rheum. arth. to Dr. Perlmutter in Florida. The boy was virtually crippled. Could not hold a pen. Barely walked. Dr. Perlmutter, who is a neurologist who now practices alternative medicine, gave the boy IV Vitamin C in megadoses - within a week the boy was playing tennis and his disfigured hands are no longer swollen. IV Vitamin C in megadoses. Of course, Merck and Lilly don't make squat - but I suggest you contact his office at www.perlhealth.com Might be worth a trip. Tell him a gal who sees that dentist in CT sent you.
KIM
Posted by: Stagmom | February 09, 2008 at 06:30 PM
Allergies, autoimmune disease and autism are CLEARLY linked. Who sees this link? Us, not the mainstream medical community.
Every year, leaving my two autistic sons (7 and 5) at home with dad, I take my 9 y/o daughter who has juvenile rheumatory arthritis to her rheumatologist and every year he offers me the same lame scrips (which I never fill)and no useful information whatsoever. And I think, this is Children's Hospital, the immunology and rheumatology dep't for God's sake, shouldn't they see this, an entire generation of immune damaged kids?! Don't they care?! My heart sinks, they can't and won't see the forest through the trees. For now, anyway.
I recently called to get a history of her blood work. We get a call back and fortunately my husband answers. Dr. Useless asks who is treating my daughter? Had I answered I'd have said it's ME, Dr., I am treating her, through diet, supplements and soon, chelation! And guess what? She's getting better. Booyaa!
Posted by: Amber Berry | February 09, 2008 at 06:07 PM
Barbie,
So sorry to hear about the rheumatoid arthritis, as well as the jackass doctor's office. You are not only an amazing mom to Jimmy but a HUGE help over on the Yasko board. I so appreciate your faithful, helpful and positive responses to the group. Will you be at Autism One? We need to have another round at the bar!!
Love--Brooke
Posted by: Brooke Potthast | February 09, 2008 at 05:31 PM
Barbie,
Great post--I know that you have become one of those BioMoms who has gone to the ends of the earth for your son. I also know that it does take just lil' ol' you to do the majority of the work to find the right answers. Stay on track now with your own health so that other Moms like me can learn as much as we can from your research!
Cathy
Posted by: Cathy Jameson | February 09, 2008 at 02:22 PM
Barbie,
I have encountered the same thing with my autoimmune problem. I have Hashimoto's Autoimmune and need high doses of Synthroid (I also have two kids on the spectrum - sounds familiar doesn't it). I am required to have my blood drawn to check my levels every six months...when I refused the flu shot and tried to explain that because I have an autoimmune disease AND children with autism, I ESPECIALLY should not be receiving ANY vaccines. I was dismissed from the practice. Don't you just love mainstream medicine!
Sonja
Posted by: Sonja | February 09, 2008 at 10:27 AM
Barbie, When I read this I can't help thinking of Donald T., Case 1 from the first report of autism in 1943, who developed juvenile arthritis at 12 and whose family credits gold salts treatment with clearing up his JRA and greatly improving his autism ("Case 1 Revisited" from my UPI series). This clue has been overlooked for decades now, just like the clue that you have arthritis and your son has autism. So, who's clueless? You or the doctors? I'd say it's the doctors. Best wishes in using your good judgment and common sense on your own health care and that of your child. WE don't think you're clueless! -- Dan
Posted by: Dan Olmsted | February 09, 2008 at 08:34 AM
Barbie, that is unbelievable! Well, I guess not really. Now not only are we being shunned from our children's medical practices, we're being denied help for ourselves. Holy, Mother of God. In all seriousness, you should consider reporting this. Regardless of your vaccination beliefs, it has nothing to do with his responsibility to treat you.
Posted by: Julie | February 09, 2008 at 08:24 AM