I just wanted to update you all with Alex and the Oprah news. Alex is still stable and a recent sputum sample showed pseudomonas present. We've had to switch up the meds. a bit.
We have heard back from Oprah people and they definitely are AWARE of Alex's story...thanks to all who have sent in emails. We think they are finally hearing us and we respectfully ask that you continue sending in emails and ask friends to email. We think it might make a difference to make a reference to Alex being the young girl Senator Obama visited at her home.
This of course is not just about Alex, but we would also like to raise awareness of the challenges faced by families of critically ill children everywhere, as well as to Lyme's Disease and the co-infections.
Thank you so much everyone. Keep up the good work.
posted 26-04-2008 04:06 PM i tried again now; here we go again: ****************************************
alex's angels for alex web site was removed; plus oprah's BIG GIVE charity removed too!!
Apr 26, 2008 3:01 PM
We want a show about Alex Hermstad, Iowa, 14, who is dying: lyme co-infection, bartonella, etc? NO dr. can determine why she's DYING!
Oprah, I understand that AUTHOR ALICE WALKER, who wrote THE COLOR PURPLE, had chronic lyme disease and had to lie down writng this book! I'm sure you got to know her well and became aware of all the suffering she did when "she looked normal" to the human eye!
I hope she shared her personal struggles with this dog-gone disease that causes folks: be terminated from their jobs; lose their health insurance; get divorced since spouses can't deal with them; lose their himes, friends, and family members; go bankrupt; homeless, and many DIE FROM COMPLICATIONS OF LYME DISEASE!!
Lyme disease and/or co-infections are the worst to content with since their is a WAR going on! ***********************************************
LYME CONTROVERSY of our good drs., ILADS, [International Lyme Associated Diseases Society] better known to us chronic lyme patients as LLMD, LYME LITERATE MDS, who BELIEVE IN CHRONIC LYME DISEASE and treat LONG-TERM ANTIBIOTICS LONGER THAN 30 DAYS VS.
IDSA, Infectious Disease Society of America, the BAD drs., who do NOT believe that CHRONIC LYME disease exists and treats UNDER 30 DAYS OF ANTIBIOTICS.
We have 2 lyme disease bills in congress, S 1708 and HR 741, which have set there for 10 years WITHOUT one hearing ever having taken place. We're doing a current phone marathon to the CHAIRS of the 3 committees whose committees are SITTING ON our lyme disease bills for "research and funding"!
We, LYME PATIENTS & LLMDS, want the HEARINGS to take place and be voted FOR and signed by Pres. G.W. Bush in near future since he, himself, was bitten 1 year ago and treated for LYME DISEASE; we don't know about any co-infections for him. Bush's staff also called 2 of our top ILADS chronic lyme drs. for their input on his future treatment! Staff didn't tell them Pres. Bush had been bitten by a tick!
The IDSA has written their own letter sending it to their 8,000 members requesting congress NOT to have any hearings since we have given them "inaccurate" info!
But back to the task at hand, we would like Oprah to PLEASE have a show about Alex Hermstad, and what she/family have gone thru these past 3 years trying to get a CORRECT DIAGNOSIS AND TREATMENTS so Alex can get off the ventilator she's been on for 1.5 years, and into REMISSION so she can enjoy life again with her twin sister!
Why is she dying? Why can't they determine what illnesses she has that has caused LIFE-THREATENING, CRITICAL CARE now for this young lady of 14 years old?
Oprah, we know you have a BIG HEART; please use it NOW for Alex Hermstad and her parents/twin sister. The camel's back is READY TO BREAK from trying every avenue available to them! Please help to OPEN DOORS not available to them in Iowa! We thank you Oprah and for your wonderful shows. You've had QUALITY shows of every imaginable subject.
NOW is the time to do a show on lyme disease/co-infections and the travesty as to what has happened to young Alex, 14, from Iowa! Thanks Oprah for your consideration for this show in NEAR FUTURE since her health is SO CRITICAL and she's been on a ventilator for 1.5 years!!
Bettyg, IOWABETTY, lyme activist; 38 years chronic lyme disease; 34 yrs. MISDIAGNOSED by 40-50 drs!!!
********************************
please reply to my newest link shown at top of THIS post; 3rd time's a charm i hope it stays there this time!
this family and alex needs HOPE and getting oprah to do her story live would open up doors family can't get to otherwise! thx bettyg
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bettyg
Unregistered
posted
... mike, i forgot to say...WHOOPIE for alex/family!!
i just copied this link and forwarded it to my lyme group list of 60-75 folks!!
if others will copy their lyme groups as well; we can really get the word out.
if you post on another board, please copy mike's post here and post there!! thanks all your wonderful lyme friends/family!!
together, we can accomplish a lot vs. one lonely voice!
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Ms. Winfrey,
I am sharing my story in support of a young girl named, Alex, who is living on a ventilator due to these paralyzing tick borne diseases. By passing on this knowledge through your show, you could, literally, save thousands of peoples' lives.
My Lyme story is a long one (as it's been since childhood and I will be 40-years-old this coming July).
I was born and raised in Boston, MA and my family and I spent our summer vacations in the woods of Maine. Who would know such joyful times would eventually lead to illness and heartache for all of my family members.
I was always the "special-needs" child in that I was overly sensitive, very intelligent, extremely anxious, agitated, horrible with change/transitions, very phobic and had irrational cruel thoughts about myself...very low self-esteem despite getting excellent grades, being popular and attractive, something was always haunting me.
I developed severe obsessive compulsive disorder when I was eight-years-old and that began my being in and out of therapy for the years to come. I did a lot of the washing, tapping, counting, and ritualistic behaviors, in general. This only occurred when I was anxious or sad. I did have some good months/years and then it would go away.
After college, I moved to NYC and started in the Advertising Industry. I've always had excellent work ethic but horrible taste in men (due to my low self-esteem). I ended up in a very abusive (not physically but verbally) relationship, became anorexic and basically had a nervous breakdown and had to return to live with my parents in Boston for a couple years.
Then, I got back on track but started having weird physical symptoms in my mid 20's. I had severe, debilitating pms, I started waking up with swollen/droopy looking eyes. I went to the allergist, started Claritin and Flonase, changed all of my makeup. This was just one of the many band aids of my long-term health problems.
I was on antidepressants to control my depression yet I was very social but impulsive and used men as my drug of choice and for validation. Due to my lack of objectivity and good judgement, it's amazing I didn't end up being in any serious and unfortunate predicaments.
I then moved to LA for the warm weather and the adventure. I loved it there but that's when my physical health really started declining. I was used to my "mental handicaps" but the physical ailments were a new additional torture. I developed chronic insomnia, sore throats, heart palpitations, severe lower back pain, painful headaches, clumsiness, sleeping under my desk at work, abdominal pains, acid reflux, dizziness and popping jaw pain.
In my heart, I knew there was something dreadfully wrong. I addressed each ailment with specialists but to no avail. I must have gone to the ER 4 times in one year for just random things like thrush in my mouth, horrific dehydration from spells of vomitting, on an on.
I decided to move back to the East Coast so my parents and I could "figure this out" as I was spiralling downward. By this point I was 33-years-old. I was self-medicating with alcohol, tylenol pm's, xanax and zoloft...yet I still couldn't find calm or peace. Exercise was the only brief respite I had from my crazy brain and ailing physical body.
Cut to: 2002 I was diagnosed by a Lyme doctor in CT with Chronic Lyme Disease. He said, that based on my medical and physical history, that I had most likely contracted this disease when I was very young. He said I needed agressive treatment and had a picc-line placed in my arm, up my vein so that I could have intravenous antibiotics daily (for 8 months). I then continued with oral anitbiotics for another year or so. It was absolutely horrible and life-altering. My parents had to take 24/7 care of me and I was receiving disability payments because there was no way I could work.
The good news is, that 75% of my symptoms cleared...never to return so I knew we had the right diagnoses. I finally got "back on my feet", bought a home in FL and got back into Advertising. I made new friends, dated, was having a good time but "something" was still haunting me. The pms was still horrific and my anxiety, albeit, MUCH better, still lingered and I was very fragile and sensitive...over-reacting, in general to things and situations.
Cut to 2007: I went to another Lyme Doctor in FL (because of geographical desirability). He took no less than 40 tubes of blood from me. He found two coinfections called Bartonella and Babesia.
Both Babesia & Bartonella were additional infections passed on from the tick bite (s) and explained my "crazy" brain issues as its symptoms mimic that of a neurological/mental disorder. So, I'm back on disability, under my Mother's care, trying to kill this infection. The usual length of time to kill Bartonella is 6-9 mos of strong antibiotics. It took me 2-years of antibiotics to rid my body of Lyme and Babesia treatment is a minimum of 4 months of treatment.
NOTE: Through these years, it was also discovered that my Mother had Lyme and Babesia, my Father had Lyme, Babesia & Ehrlichia, my brother had Lyme & Babesia, my sister-in-law had Lyme (initally misdiagnosed as MS) and both their toddlers were diagnosed with Lyme by the ages of 2 and 4. There is a chance that these diseases can be passed on sexually and in utero...no official confirmation but many whole families end up being infected.
posted
clarissa, thanks for taking the time to write/copy your story here, etc. to help alex get HER show!!
here some things wrong that will cause your post to be DELETED promptly!!
no links are to show due to viruses/worms!
oprah has WORD LIMit; show sure if it's 500...read the instructions first on her board; so you will need to show:
part 1 of 4, or whatever it comes up to by maxing out limit PER reply to your post!!!
so clarissa, please EDIT your post by clicking on paper/pencil icon to right of your name in your letter to oprah; delete ALL LINKS! ******************************************
copy your entire letter to MS word and do a WORD COUNT after you've read oprah's word limit per post in her instructions for board!!!!
then divide it up as suggested above showing part 1 of ___ and have text below that;
pat 2 of ___ show text below there so we can copy your split up version to OUR ms word and copy only part 1 OF 4 to it; then 2 of 4 until we have your entire story there!!! *************************************
i'll post this before i lose it, and go to my direct link and see if i can see there for a new post you want to add YOUR OWN vs. my direct link of alex.
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
i broke this up for us neuro-lymies vs. her solid block text! uffda
so you have to REGISTER FIRST before you can post; they will send you a note at home address to ACTIVATE your account; at that time, you can begin posting!!! *****************************
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posted
Just thought I would add a bit to this thread. My son in law wrote to Oprah quite some time ago, before we even knew about poor little Alex. Our family is and has been in dire straights for quite sometime also, along with many others.
I wish we could find some rich celebrity to help us with Lyme awareness. Until more than just a few of them or their loved ones are afflicted with it IMO all we can do is keep trying to get their attention.
He never received an answer back from her people either. It seems as if she nor is her show interested in this type of thing. It is sad when someone that is in the public eye and respected by the media chooses to ignore the suffering that this disease causes to innocent children and others.
What about writing to Montel or a couple of the other high profile shows? IMO writing to Oprah is a waste of time.
Since My daughter's husband makes "too" much money she isn't elidgable for any help from any organizations including SSI. She was too young to have worked much and hasn't payed enough into social security before becoming bedridden to even get that.
My prayers are with you Alex.
Hugs,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I am trying to put the pieces together before I write Oprah....again.
Is Alex seeing a LLMD?
I watched two video's from the caring bridge site.
both the video's left me with the idea there still has not been a dx the past two years.
Is the point in writing Oprah to bring awareness and hopefully a dx and treatment from someone who may be watching that day?
Sorry, but the brain fog is heavy today.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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bettyg
Unregistered
posted
kam,
i'll let mike answer question about seeing llmd.
yes, you are correct; contacting oprah is AWARENESS but it's a specific request in helping this 14 yr. old girl, Alex, who is paralyzed and ventilator, on getting drs. and others to watch this program that alex's family can NOT get to otherwise.
everyone watches oprah or their friend does; she's a conversation piece every day....
i forgot to add; OPRAH'S site has a lot of problems getting in there! so if you click on my direct web site and it goes there.
click on LYME DISEASE preceding the title of my post. that will allow you to go to my direct post, and click reply.
then you are required to log in at that time, and it will take you to reply to my post! hope that helps.
daise, thanks for telling me you tried earlier, but the site was NOT allowing you in there!
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No, she really is not being overseen by a LLMD at the moment. Her former doctor, Dr. M. has retired. Both he and Dr. C. in Missouri clinically diagnosed her with Lyme's.
Both of her western blots show indications of borrelia. The QRIBb test highest at 1:128. Her Fry Labs report showed bart. adhered to erythrocytes...so it was positive. Mycoplasma pneumoniae was positive by both antibody tests and in her CSF. Her IgG HHV-6 was 1:2560.
I guess trying to get on Oprah has been a "sign" so to speak. We've had numerous, what seems to be signs, to lead us in that direction. I swear that my senses are stronger...when you see a 14-year old girl who's paralyzed, on a ventilator, and cannot speak or swallow cry, you become acutely aware, or hypersensitive to your surroundings. So, we're kind of following signs.
After Make-A-Wish turned her down, we kind of hit rock bottom. Some sort of national attention could bring medical or financial assistance. It hurts sometimes to see the things they put on t.v. and knowing that Alex is experiencing the worst of suffering a human can endure, angers me to no end.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
thanks. I too tried and the screen kept flashing.
I thought i would try again later.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
So, the main goal is to get her back under the care of a LLMD??
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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daise
Unregistered
posted
I'm sorry, Betty.
I've tried a number of times to log-on, but something is wrong with the log-in process.
Reply 3. Re: We want a show about Alex Hermstad, Iowa, 14, who is dying: lyme co-infection, bartonella, etc? NO dr. can determine why she's DYING!
May 14, 2008 1:05 PM
in response to: iowabetty
Yesterday, I made an error, Alex's Mom's name is LORI! My apologies to Lori for this. I hear from Brenda all the time keeping me up to date on Alex's condition, and it was also the WEE am hours when I'm on here. I'm so sorry!
Folks, please reply to this, and ask OPRAH FOR A SPECIAL SHOW ON ALEX; she does have a co-infection of BARTONELLA, but may have many more UNDIAGNOSED CORRECTLY diseases/illness! PLEASE HELP THIS FAMILY OUT .... TIME IS RUNNING OUT FOR ALEX! Thank you.
Re: We want a show about Alex Hermstad, Iowa, 14, who is dying: lyme co-infection, bartonella, etc? NO dr. can determine why she's DYING! May 14, 2008 1:08 PM
in response to: iowabetty
Hi! The community on Oprah.com was created to provide a place where people committed to living their best lives, personal growth and generating positive, thoughtful dialogue can find one another for support, comfort and shared experiences.
Members who wish to submit show ideas, or share their stories with the Producers should click the 'Be on the Show' link from the Oprah.com Homepage. There you'll see what projects we're working on as well as submit your own story or show ideas.
I hope this is helpful. Please know we hope good things for you.
-HarpoBear, Oprah.com Community Producer **********************************************
my reply /// harpo,
thanks for your reply; was I to receive a REPLY sent to my home email about this because I did not!
i'll send this all as SHOW IDEAS then! BettyG, Iowa lyme activist **********************************
here's SHOW IDEAS SITE AGAIN....email THERE! *****************************************///
posted
Yes, our main goal is to get her under the care of a LLMD. Someone who either is knowledgeable about neurology OR would at least consult with a good [if there is such a thing] neurologist.
We're asking for everybody who reads this to spread it on to 10 people and ask them to send it on to 10, too and so on and so forth. By passing it along, we're hoping to hit someone who will be able to help.
posted
has she been dx with lyme and co's???? there is no mention of it in the video
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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No, she really is not being overseen by a LLMD at the moment. Her former doctor, Dr. M. has retired. Both he and Dr. C. in Missouri clinically diagnosed her with Lyme's.
Both of her western blots show indications of borrelia. The QRIBb test highest at 1:128. Her Fry Labs report showed bart. adhered to erythrocytes...so it was positive. Mycoplasma pneumoniae was positive by both antibody tests and in her CSF. Her IgG HHV-6 was 1:2560.
I guess trying to get on Oprah has been a "sign" so to speak. We've had numerous, what seems to be signs, to lead us in that direction. I swear that my senses are stronger...when you see a 14-year old girl who's paralyzed, on a ventilator, and cannot speak or swallow cry, you become acutely aware, or hypersensitive to your surroundings. So, we're kind of following signs.
After Make-A-Wish turned her down, we kind of hit rock bottom. Some sort of national attention could bring medical or financial assistance. It hurts sometimes to see the things they put on t.v. and knowing that Alex is experiencing the worst of suffering a human can endure, angers me to no end.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
,,, mike, done; sent your link and tutu's quoting you to 100 on my list including 60 lymies plus! ***********************************************
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bettyg
Unregistered
posted
up. please watch ALEX'S YOU TUBE VIDEO and forward to others....thx!
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posted
Wonder if Oprah likes Hall and Oates. Maybe Daryl Hall could somehow get his foot in the door. Just a thought.
I'm thinking as controverisal as Lyme is, no one wants to go there.
Dr.Oz is on I think sirius radio. The program is called I believe Oprah and Friends, maybe if we call in.......... who knows. It can't hurt.
Also, coming this Fall, I heard something Dr. Phil's son Jay is producing. I didn't catch all of what was said but it has something to do with doctors. Does anyone know anything about this show? I guess just keep trying. That's all we can do.
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