The Germany Tay-Sachs test came back and was negative- which means every genetic test she has tested for has been negative.
A couple of months ago, we got encouragement and re-energized. An idea came to me before although I really didn't know how we would be able to get it done.
The idea was to write a letter to all of the large newspapers in the country.
I began composing a letter, however as I was writing it, I began to wonder what Alex would be saying if she had the power to say so.
After some revisions, the letter grew into a poignant, heartfelt plea from a young lady whose courage and will simply cannot be measured.
The letter will be distributed to over 250 newspapers across the country and hopefully printed in their January 2nd editions.
We would like to share the letter with you today:
Hi, my name is Alexandria Hermstad but everyone calls me Alex. I have an identical twin sister named Jaci and we are 15 years old.
I was always healthy but for almost 4 years now, I have been fighting an illness that nobody seems to know what it is or why it is happening to me. I live in Storm Lake, Iowa and I am paralyzed.
I have to use a ventilator to breathe through a hole in my throat which sometimes gets plugged and I can't breathe.
I cannot swallow food anymore so my diet consists of liquids through a tube in my stomach. My mind still works fine and I understand everything that is going on around me.
I can't speak either, so my mom is helping me to put my feelings on paper.
Jaci and I used to love playing sports, riding horses, and snowmobiling. When I turned 11, I began having trouble moving my left arm. By the end of the year, I could no longer walk.
We were told to leave our house because the cause might be environmental, so we left...we left everything! Our dog, Gracie, couldn't even come with us. After 9 months and being in 3 different hospitals, I finally went home.
Since my illness began, we have met so many caring people. We are very grateful for all those who have reached out and shared whatever they could give. I am very thankful for those who have tried to help me. But at the end of each day...I am still here.
Many times I want to scream, but I have no voice. Many times I want to hide away in my room, but I cannot move.
I want to hug my family and tell them I love them, but I can't.
I can still move a little corner of my mouth to answer ``yes'' questions.
I can still cry and tears can still roll down my face, but I cannot wipe them away.
It takes a long time to be able to communicate with my parents. Many times it's very frustrating to get my thoughts across and then for someone to understand me.
What is more frustrating is why do the doctors and researchers we have written to and who have the capability to help me, choose not to help me - like I don't exist?
I want to do so much but because I am trapped inside my body, I can't.
I have been ignored by almost everyone who has the power and knowledge to help me.
I used to watch medical mystery shows and was always overwhelmed in seeing how a doctor on the show would come forward and do a little extra to save/help their patient. I don't know why someone won't do that for me...?
What I do know is that my illness is ``atypical'' and not the obvious, which seems to be why doctors are so perplexed, but I can't get their attention to care enough to help me. I just need someone to care.
Even Make-A-Wish denied my wish.
St. Jude's never even tried to help me.
President-Elect Obama met me in my home, took his picture with me and promised to help me, yet I still wait.
My own governor looks the other way. Nearly every national foundation and organization my family writes to responds back saying I don't meet ``criteria''.
Every major news organization we write to ignores me. They must not believe 5 minutes is worthy of helping to save my life.
Has our society come to the point that celebrities become a higher priority than rescuing a child with an extremely rare condition?
Celebrities, foundations, politicians, physicians, hospitals, and the list goes on, do not find it in their hearts to get back to me. Why?
What would you do for your loved one? All I want is someone with the power and knowledge, to help me.
I have been rejected because I don't meet criteria...how sick do I have to get to meet ``criteria''?
Recently, a local charity has offered me and my family support by trying to help bring about awareness to my story in hopes it will save my life before it is too late.
I am fighting so hard to survive, and even though my voice is silent, I AM SCREAMING ON THE INSIDE TO BE HEARD! PLEASE help me!
So many people have told me they love me and they can show this by contacting everyone they know about me so my voice can be heard. There is strength in numbers.
Something as simple as taking a few minutes to send a message to all the people in your mailbox could make a big difference.
I am also writing big newspapers. I am asking that all newspapers come together for one day to do something that is completely unprecedented; publish the same letter across the country so that all may hear my plea, on the same day, January 2nd; a fresh start to the new year.
It may only take a few minutes, but sharing my letter with someone, a simple random act of kindness, may very well save my life.
Please prayerfully hope that I can celebrate another birthday... another Christmas...the day I prayed I would get to graduate from high school.
But even more- a miracle to share in God's glory.
I am respectfully and passionately asking people who have the power to move- to move for me.
I am asking those who have the ability to scream, scream for me.
I am asking those who have the capacity to talk, to be my voice.
Everybody tells me to, ``keep fighting Alex'', so I do. I fight relentlessly...each hour of every day.
Now, I am asking people to fight WITH me and FOR me.
I don't know why doctors won't help me...will you?
Last summer, my family began ``Alex's Army''. Will you join Alex's Army and help me by contacting my email at: [email protected] with suggestions and your ideas on how you can help me?
Hopefully, and prayerfully, I can find someone who will be willing to help me.
Those who pray, please pray for me as my faith in God has helped sustain me in this battle.
With God, all things are possible. Matthew 19: 24-26
``Once you choose hope, anything's possible'' -Christopher Reeve
Hope Hope is a word that every heart understands. Hope shines brighter than the brightest star on the darkest night. Faith is bigger than the highest mountain. And God is greater than any obstacle in your path. Anything can be accomplished by those who fully put their hearts into it. The time to start is now The place to start is here. May hope cast its special light upon your path and God bless everything you touch in the days and moments to come. -Margi Harrell ------------------------------------
In addition to passing it on through newspapers, we are requesting everybody send it along to those in your email inbox, Facebook, My Space...etc. Thanks.Uncle Mike
Our family would like to wish you all a very Merry Christmas and a hope-filled Happy Holiday season.
The video is Alabama's ``Angels Among Us'' and is dedicated to all of Alex's earthly angels...and of course, the ``Heavenly'' angels, too.
posted
Betty - it's not clear to me what is being asked for. Any specific Lyme treatment? What is being considered for Alex?
We heard reports recently of people, both quadraplegic and paraplegic, going to India for stem cell injections and getting nerve regeneration and feeling back.
Some Lyme patients have gone to India to receive stem cell injections. I understand they are feeling better.
Posts: 13116 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
hi robin,
good question; honestly, i don't know specifically, so let's UNCLE MIKE answer that for you.
please email him there and include your other comments as well .... thanks! i'm logging off tonight. MERRY CHRISTMAS...
Will you join Alex's Army and help me by contacting my email at:
posted
So, when someone is this paralyzed by Lyme, what can be done medically? Are paralyzed people ever brought back to functioning by med treatment?
so far, the only treatment that I've heard of is the stem injections in India restoring nerve health to quadraplegic and paraplegic people, and also knowing that Lyme patients have been helped.
Posts: 13116 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
robin, good question, and i have no background to say one way or another!
alex is the 1st person w/co-infections that is paralyzed and ventilator since my correct diagnosis. anyone know??
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I don't know enough of the specifics to make any real comments regarding Alex's case, but I fear that even if India were the correct answer for her, I'm not sure they would even be ABLE to get her there.
Traveling when you are sick is tough, but in her case, she is in need of so many machines that I just don't think she could make the trip. It's so so so very sad. I hope they can come up with an avenue.
Also Betty, I thought it was the mom that wrote the letter for the newspapers. Not saying that Uncle Mike and ALL of them for that matter wouldn't be feeling the pain of this whole thing. Just that it makes comment in the first sentence that it was written by Alex's mom.
Betty, thanks for keeping the awareness going for Alex. Hopefully the newspapers will follow through too.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Betty,
I sent Mike an e-mail. Was Alex diagnosed with Lyme & co? I didn't see it mentioned. Maybe I missed it. This is heartbreaking,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Okay,
Didn't read thread entirely. Lyme brain here Sorry, for such a silly question.
I thought maybe they were just appealing to all boards with different illnesses.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Something as simple as taking a few minutes to send a message to all the people in your mailbox could make a big difference.
It may only take a few minutes, but sharing my letter with someone, a simple random act of kindness, may very well save my life.
Last summer, my family began ``Alex's Army''. Will you join Alex's Army and help me by contacting my email at: [email protected] with suggestions and your ideas on how you can help me?
Hopefully, and prayerfully, I can find someone who will be willing to help me. --------------------------------
A friend told me I should probably reply to some responses here.
For purposes of clarification, not that it makes a difference, but originally, I had the idea to write large newspapers to bring about awareness. It started out as a brief letter and grew into a huge ***** session.
One day, I realized that wasn't the way to go. I have often wondered what Alex would say if she could write the letter and that is where the letter came from,- it was written in collaboration between myself and Alex's mom.
I posted above what we are asking for. I guess what seems clear to us may not be for others. In one word..."AWARENESS". Calling doctors and begging doesn't seem to help.
No "one" doctor is going to be able to help.
Cathy- you are right on the money...well said.
A while ago, I was so disheartened by a plea for help on this board. I was lectured to and basically told to take people's suggestions. I thought I was very clear in saying that we wanted Dr. K's help, yet folks still tried to tell me what to do.
We had tried the abx. and more traditional medicine, and that hasn't offered much. Now, I realize the purpose of this board is to help others and offer suggestions, but again, I was clear in saying what we wanted.
There is strength in numbers. Maybe my approach wasn't the best way to do it, but when you stand over a 15-year old girl who can't move or speak, and has deteriorated from this mystery illness for 4 years, your patience begins to wear thin.
I also don't want to get in the discussion of comparing people's hardships and illness stories. I would rather not compare who is worse than this person...etc. That is why everybody is here. My point was that she is just a child and she cannot function at all.
In the medical field, all healthcare profesionals are taught the word "triage", which means to treat the worst first. This is what I was asking for before. I had heard Dr. K. talk and he is only one of a few in the world that I know of that has seen enough of this type of illness to be able to treat.
I was hoping if he heard from enough "Lyme" people, he would help, yet all I got was lecture, conjecture, and pointless suggestions. Again, let me say, I was clear in what I was asking for.
Anyway, that's why I have not been here.
Alex has been clinically diagnosed by two LLMDs. Her WBs are not CDC positive, but there is solid evidence and would be positive according to Dr. C's and Dr. J's rationale.
Also tested positive by QRIBb at 1:128, Mpn. in blood and CSF, HHV-6, Fry labs for Bart [or BLO, or who knows what it is] + she had the red striae marks on her abdomen and patellae.
Also positive for many molds; trichothecenes and heavy metals.
Gael- no need to apologize for something like that- I do that all the time.
fyi, i thought it was written by mom, lori, until i got this mailing back from uncle mike,
"Betty- actually I do all the posting of the updates on the site. I forgot about breaking it up and will be more cognizant of that in the future. Mike"
edited...i deleted what i could remember of alex's diagnosis.
SURPRISE; mike stopped and cleared up some matters including what she tested positive for. THANKS MIKE! i was going to email you what i posted here, but hadn't taken the time to do so yet!
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posted
Mike, if Alex has been clinically diagnosed by two LLMDs, have they said how they would like to see her treated, especially with her being paralyzed?
Posts: 13116 | From San Francisco | Registered: May 2006
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Mike and Betty, Thanks for the clarifications. Lyme brain doesn't always have me sure that what I WANT to be saying is what is really coming out.
Bottom line is that this little girl needs help and this family has tried EVERYTHING. Ideas that I know wouldn't even cross the minds of so many of us during stress.
Mike, do you know if the newspapers are being receptive to putting this in their newspapers on Jan 2?
I'm on the opposite coast from Dr. K and only know him through reputation and that of what is presented in "Under Our Skin". Not sure I can help on that front.
I do hope that this "campaigne" will get the awareness and ATTENTION of some doctor/doctors that will be able to step forward and recognize pieces of what Alex is going through and be able to give hope and medical attention.
My thoughts and prayers are with all of you!!!!
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
What I don't understand is why the family repeatedly says she has a mystery diagnosis and that doctors have refused to help. She was originally given the ALS diagnosis years ago when her parents first took her to Mayo. Based upon what I have read as I have followed her case past few years, they were correct.
I believe what the family means to say is that treatment for a cure to ALS is a mystery. She does not have an unknown illness, but an unknown cure. There currently is no cure for ALS, sorry, but it is the truth.
I feel so bad for the family, for Alex, for everything they have been through. There have been many doctors that have tried to help the family, with one even flying in to see her there. Unfortunately they chose not to go back to see some of the LLMD's that have agreed to see Alex.
Mycoplasma and Lyme can cause ALS, for which there is no cure. I feel great pain for the family. She was accepted into the NIH program for difficult illnesses where many scientists and VIP physicians agreed to look at her case. Over and over in articles and newscasts I have heard the family say they feel the medical community and organizations have abandoned them. People have tried to help, but sometimes there is nothing that can be done. Sometimes the help that was offered was not accepted because the family did not agree with their plan of care.
I wish the family all the best and will continue to keep Alex in my prayers. I wish her peace and comfort.
Posts: 339 | From nowhere | Registered: May 2007
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posted
Mike, is this Dr K in Washington you're referring to? Does he have treatment ideas? If this is the person I'm thinking of, he does travel regularly, and maybe could be persuaded to make a stop-over in Iowa?
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
She was *never* given the diagnosis of "ALS". I have never said that. Mayo gave her the diagnosis of "motor neuron syndrome"- not "motor neuron disease" and not ALS and not even atypical ALS.
The EMGs were inconsistent and she does not meet the El Escorial criteria of an ALS diagnosis.
She has been to numerous doctors/facilities and all have given different diagnoses...hence the "mystery diagnosis".
These two things continue to go through my mind...
1)What could cause this scenerio in an 11-year old identical twin?
2)Most doctors and scientists are not researching this area enough. Once the "ALS" diagnosis is made, treatments and research stops. No significant contributions can be made if there is no further research.
----------------------------------------
"I have heard the family say they feel the medical community and organizations have abandoned them. People have tried to help, but sometimes there is nothing that can be done. Sometimes the help that was offered was not accepted because the family did not agree with their plan of care." --------------------------------------
Please be careful what you post about this situation - you DO NOT know all the information. This stuff is exactly why I don't come here anymore.
Posts: 252 | From Iowa | Registered: Mar 2006
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I thought I was very clear in saying that we wanted Dr. K's help
We had tried the abx. and more traditional medicine, and that hasn't offered much.
In the medical field, all healthcare profesionals are taught the word "triage", which means to treat the worst first. This is what I was asking for before. I had heard Dr. K. talk and he is only one of a few in the world that I know of that has seen enough of this type of illness to be able to treat.
Alex has been clinically diagnosed by two LLMDs. Her WBs are not CDC positive, but there is solid evidence and would be positive according to Dr. C's and Dr. J's rationale.
Also tested positive by QRIBb at 1:128, Mpn. in blood and CSF, HHV-6, Fry labs for Bart [or BLO, or who knows what it is] + she had the red striae marks on her abdomen and patellae.
Also positive for many molds; trichothecenes and heavy metals.
Mike, pardon me for editing from your quote above; I want to ask some questions.
Have you ever communicated with Dr K? Do you have any idea how he might treat Lyme patients with Alex's test results and also her paralyzed condition?
If he does have ideas, can Alex be transported to where he is? If not, are you thinking that he is supposed to come to you?
My next question is: how have any Lyme-treating physicians treated Lyme patients who are paralyzed like this?
And I did make an earlier post about paralyzed people going to New Delhi, India to receive stem cell injections to regenerate their nerves, including Lyme patients going there as well for evidently improvement in their condition.
Posts: 13116 | From San Francisco | Registered: May 2006
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
gigi is very close with dr k if that is the one you are talking about. maybe betty has her email address an i think she might have been banned from lymenet recently.
if not i think loub could get it for you. i can foward this to my ids doc. he specializes in rare and tropical diseases and may be able to help.
here are several ideas that i have found that may be caused by deer tick bite, one i had no idea about.the other systemic yeast infection to cns. deer tick viral encephalitis. may possibly be treated with stro9ng antivirals web page
[ 29. December 2008, 07:57 AM: Message edited by: stymielymie ]
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I am JUST guessing,,,but isnt the real problem ,,zero,,, LLMDs in Iowa??
AND doctors from another state,,,can they really travel 'TO' another state and practice??? Even IF they wanted to,,,could they??
Doctors of any calling rarely make HOUSE calls these days,,,sad but true.
I can see that NO abx is a 'quick' enough fix for this dear child!!
Sounds like the severity,,plus the stage of progression,,is going to require LONG term trials of various combos.
just wondering,,,has IV vanco been tried at ALL yet???
There ARE some strains of all these TBD's around this part of the world,,,that dont respond to ANY treatment,,,unfortunately!!
My guess is all effort to find a doc,get a plan,relocate to THAT location,,,follow thru with a LONG term plan THERE,,,is the ONLY way to get the help.
My guess is either the doc K on west coast,,,or Doc J on east coast are going to be the MOST helpful!!!
Where ELSE could she possibly go to get ANY help with a knowledgeable LLMD???
Everything else being ruled out,,,what else BUT a TBD could it possibly be?? Sounds like CLASSIC bart to 'ME'
Alex NEEDS,,,and what CAN be provided for in Iowa,,,,may differ!!! sad but TRUE facts!!!
Liability issues rules what CAN be done!!!
I am just GLAD she is hanging on,,,and fighting this so courageously,,,the answers cant come TOO quickly for HER!!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Ascaris Lumbricoides can cause intestinal & billiary obstruction. These worms can be found in children ages 4-15 yrs of age. They can grow up to 16-18" long.
Dr. K. treats all of his Lyme patients for PARASITES and WORMS. There was an article a few months ago about a man who was on a ventilator and dying.
Somehow they found he was infected with ascaris and they were able to treat him.
If Dr. K treats all of his Lyme patients for parasites and worms then it would be highly probable that Alex could be very sick with this kind of infection. Also www.lymephotos.com
I think this could be a very big possibility. Here is GiGis e-mail as she has posted here on lymenet
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
just don, you bring up a good point, that docs might not be able to practice in other states other than their own?
If Dr K is going to know what to do - that's the first question. He needs to be communicated with, to find out.
Then it might be a matter of having to move to where he is for care.
Then we would have something specific to be asking for, as in financial assistance to get her there.
Remember - this is all only brain storming, in the hopes of triggering some thinking about treatment option scenarios for her.
Posts: 13116 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
hi uncle mike,
any chance you could post the 250 newspaper names and/or locations where hopefully alex's jan. 2 story will be published.
then our members could work on sending your above letter to newspapers in THEIR CITIES OR MAJOR CITIES IN STATE? big thanks.
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May God Bless you for your love and endless quest for help for your niece. I am sorry if I have offended you in my post above, but this is the information I have read and have been given and will stand by my statements. I am aware that Drs. C, J, M and others have tried to help Alex. I also am curious about how the NIH doctors turned out.
I am still confused about your statement. Isn't motor neuron syndrome caused by Mpn and borrelia and other infections? Isn't it obvious that ALS is a motor neuron syndrome?
She clearly has evidence of LMN and UPN involvement with progressive spread to other regions and the absence of neuroimaging and pathological evidence of any other disease processes that could explain her condition, so I am confused why you say she does not meet the El Escorial Revised Criteria for Diagnosis of ALS. Has there been any recent electrophysiological study done lately, if there is inconsistency? I would think she would meet the ALS-LAUS Syndromes definition (ALS with Laboratory Abnormalities of Unknown Significance). It includes patients with clinically definite or clinically probable ALS definition associated with infection. It even lists under the infection category borreliosis, bartonella, etc. A diagnosis of clinically probable and clinically suspected ALS can be made without laboratory or electrophysiological evidence, according to the criteria.
By denying the diagnosis and avoiding physicians and centers specializing in motor neuron and neuromuscular diseases, couldn't you be avoiding a researching physician and scientists that might be able to help Alex? Have you visited with specialists at certified ALS centers?
Also, yes, the above poster was correct in stating that physicians that are not licensed to practice where Alex lives cannot practice medicine there. It is unreasonable for someone to ask a physician to risk losing their license by breaking the law.
Posts: 339 | From nowhere | Registered: May 2007
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I am a Dreamer, Believer, and Conquer; I will overcome this disease !!! Posts: 382 | From Alabama Via PA | Registered: Jun 2008
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
anybody heard of deer tick virus and encephalitis. there is a girl over on general that is paralyzed with a positive lyme test. she has a twin that is healthy and nobody can treat her correctly. i found this article that i always theorized existed but never saw proof that dt carry viruses. also posted on medical http://www.cdc.gov/ncidod/EID/vol5no4/ebel.htm sorry betty too long to edit.
this post should be moved to medical please!!!
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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bettyg
Unregistered
posted
dave started a new post in MEDICAL w/article he shows and posted it in its entirety, solid block text...fyi.
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posted
I agree - I think this post should be moved to Medical. It is a discussion about what can medically be done.
Stymie posted in the other post on the deer virus that a doctor can consult with any doctor in another state, but cannot prescribe.
So if we can find out how paralyzed Lyme (or virus?) patients have been treated, then those knowledgeable doctors could consult with a Iowa doctor willing to treat.
Posts: 13116 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
robin, if i'm understanding this correctly now from what dave and you stated, both of you are wanting to MOVE THIS ALEX POST TO MEDICAL ??
so i'm copying link and sending it to lou bachman for his actions!
i misunderstood earlier, and knew dave posted the other link there... sorry!
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