posted
please, anyone, let me know specifics if so.
my son is in application process for a va neurorehab program. just checking quickly on va awareness.
m
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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bettyg
Unregistered
posted
mo, i don't know... but check this out; official screenings state by state by date of occurrence.
if you get nov. 1, you can go back up... *****************************************
i looked after nov. 1 ..... SAW NOTHING
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Tincup
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lymemomtooo
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posted
Mo, some drs associated with the Amen Clinic in Va are knowledgeable. Not sure if this knowledge has spread. lmt
ps. the mold ghru is almost in Va on the S. Md border so maybe he has spread some stuff.
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
gosh mo, i'm embarrassed; was having problems last night with the board for 1 hr. and this is one post where when i copied it here ... the post wouldn't go!! so sorry.
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Va representative very fired up about LD. I watched it on Cspan. I think you can see it at lymerights.org, or. com. (sorry can't remember which). Very interesting! He is not going to let it rest. I think they will be addressing it again early next year.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
well, thanks. sounds like i ought to send the hospital the video/dvd.
anyone know how i can do that, quickly?
these sub-acute neurorehabilitation in-patient facilities are hard to find. i can't tell you how much blood, sweat and tears it has taken to find them.
if we make an in-road for my son, maybe it can help others get in-patient care.
as many of you may know, if they are adolescents, in this state, and without 24 hr supervision.. the alternatives as (and i quote as per the brain injusry association) are = innappropriately placed is psych wards, jail, or death.
that's what we're facing. my son is in a psych ward now, almost two months. they are beating the holy hell out of him and me as i spend every waking hour fighting for real care.
no LL is up to the task of securing this; as with adolescents they typically have this driving medical state with co-contrinuting factors typical to teens (ie social anxiety, self-medicating with substances, propensity for legal problems, suicidality), they have no leads. NO LEADS. they are afraid to touch it. my child is not trash. however, i fully understand that they are under the gun as it is, so cases like my son's are "hot potatoe" cases. so be it..
I am up to the task, because i will not accept either of those three senarios for my son.
if anyone can help me in real-time, as in now, lease let me know.
he was already accepted to one neurorehab program in another state, based on lyme and other tbd caused encephalopathy as his origional aquired brain injury. HELLO.. this is a major feat.
HELLO. anyone???? i am ****ed as hell at the LL and non-LL medical community right now. if they won't stand up for our teens, what good is their work?? you have to be of a certain AGE to benefit? you have to be of a certain clinical presentation?? you have to be "politically safe"?? if my child was 2, 6, 10, 12 or perhaps 14 we would have tons of help assistance for the very same condition? this is bullcrap.
i've been fighting alone .. for so many months. a fight that could benefit many. a fight that if i loose, my son will die.
please help me. i don't know how anyone could call themselves a "tbd disease" advocate who won't.
yes, we are the leper family, i have a kid with "lyme leprocy". face it, as you watch him go down. i will place this issue in the face of the lyme community, as soon as he does.
do i sound angry?? it's because i am. enough.
this isn't a response to these good thread responders so much as it is a response to our ENTIRE experience this year. we have been, at best, lameted over, but NOT HELPED. bottom line. NOT HELPED. not by anyone really, professional medical or non-medical. why?????
if they are young enough, you can, with knowledge and allot of work and assistance, care for them. if the patient is an adult, at least they have the ability to be educated and keep a handle on the disease by what they learn. teens. however, with all their co-occuring conditions, are lost. parents can't assert care beyond their willingness, and they can't understand what is happening. they can't possibly grasp it.. much less take control of it.
teenagers are not trash, lyme community, do you hear that? teenagers are not trash. it's not like making that statenment is going to get us less help, so i might as well put it in front of you. for God's sake, stop looking the other way and shaking your heads. DO SOMETHING. there are allot more out there than just my kid.
mo
[ 02. November 2008, 02:46 AM: Message edited by: Mo ]
Posts: 8337 | From the other shore | Registered: Jul 2002
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lymemomtooo
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posted
Mo, they are afraid!!!!!!!!!!!! Not that they are not agonizing with you. AND you know I will go out of my way to help so think the brush needs to skip a few of us.
NOW I hope you understand my tick suit..Yes it may not be politically correct for some but it makes people take a look...It was never to give me publicity it was to make people stop and think about this Hell.....I could not be quiet when our kids were hurting and a paper poster did not cut it for me in regards to what was needed. I would have stripped at the Capitol if I thought it would have helped.
I have been and continue to be in the same trench with you..I am the one that said the sky is falling...Parents of children, get your kids well asap..When they are teens there is little hope or help..
Dr. VS would go out on a limb with these kids and my daughter's llmd will but I know many are afraid and WE have let many of them down as well as the legislators and locals...
It took a nation to let Hitler come to power. It is called complacency and it won't be me...I do not know how you light a fire...Many Lymies are too sick to fight, even though they would love to do so.
But my hopes and prayers are with you and any parents in this Hell with us. I am only 1 minute away from this again at any time. My daughter currently thinks she is well and is becoming very non-complicant, so the bomb is ticking.
As frustrating and horrible as it is to us...It is worse to our kids. When they see no hope they try to end the pain. My tears are your tears at the moment Mo.
I just hope someone will give you the help you need in time..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Dear Mo,
What can I do for you? You have my address. I'll send my contact information.
I can make phone calls.
LM2 is right about VS.
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clairenotes
Frequent Contributor (1K+ posts)
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posted
This advice may reflect an inability to understand exactly what is going on... but I will take a chance and offer it anyway.
As usual, this is not medical advice, but based on personal experience only.
My joyful exuberant child was 12 when she became reactive to not only my husband and I, but to her friends... For instance, I could say, 'isn't it a beautiful day today?' and my daughter would take issue. Everything seemed to get disordered and disorganized, literally and figuratively.
She began wearing make-up... not just a little, not just the somewhat still fashionable goth look... but literally scary amounts. It was like a disturbed body image thing that anorexics have but instead with her face. Horrifying to watch and no amount of reasoning could change this... friends distanced themselves.
This happened seemingly overnite.
Not knowing about LD at the time, we were at least able to bring her back to center to some degree, though it was not in any way perfect, with neuroscience supplements.
There are tests that can be taken to find which supplements and the right combination of supplements are needed... you can call the company and ask for referral to a professional who give the test and interpret the results.
Still, some tweaking is involved usually to get the right dose, but it did bring a good measure of sanity back and bought us time as we continued to sort out the whys and wherefores of how this incredible neurochemical imbalance occurred to begin with.
She went to a different school the next year and developed relatively good friendships (again things were never perfect because LD is the true cause) and did nominally well in school. By 13 we had found the true cause and by Christmas, her 15th year, she was able to let go of the neuroscience products. She is only 1/2 through LD protocols (my estimate). It is still not perfect... and yet we seem lightyears away from the onset of the neurochemical imbalance.
If you are already aware of this company, simply disregard. Or if this doesn't fit your particular situation, disregard.
Thoughts and prayers with you and your son, and with all who are going through this or something similar.
Claire
[ 02. November 2008, 11:07 AM: Message edited by: clairenotes ]
Posts: 1111 | From Colorado | Registered: Oct 2006
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posted
It may be that Virginia is a bit more vigilant now about mental illnesses and the need to get adequate medical supervision, as a result of the terrible shooting at Va Tech several years ago.
Also, there was federal legislation that gave parity in ins coverage to mental conditions.
So, possibly these things might improve the atmosphere, if not directly and immediately find a solution for your son. This country has a long way to go in dealing with mental illness, from whatever cause. Just look at all the homeless people on the streets. Lots of mental illnesses in those people. It turns out that shutting down mental institutions was not the answer to bad conditions inside them. What was needed instead was reform inside.
Perhaps, you might keep these in mind when dealing with officials and medical people in VA. They have been somewhat sensitized to the potential problems in people with mental illness.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Does anyone have ideas on how to use civil rights issues to get the needed treatment? If an adolescent critically needs treatment, it should be provided. This is expecially true if the individual is in state custody, has Medicaid, or is in a facility, etc. This presents several directions to exert pressure to get the help urgently needed.
The current treatment may make the underlying problems (including behavior) worse and probably makes the infection worse. Failing to provide treatment for Lyme disease, but instead using severe chemical and physical restraint is really scary.
Parents need to be supported. Those responsible for the current deterioration need put on notice about possible consequences for their actions.
Does anyone have ideas on ways to approach this legally and/or how some of us could get organized to protest or fight professionals who are not doing their job?
posted
Mo,I know it is too much effort to make this story understandable to everyone, but just posting to say I don't really know the whole story or the basis for your emotions.
We have a daughter who has had significant psych, issues from Lyme, and have gone through wars. I could relate, and relate helpfully, but do not know waht exactly is going on. We have been persecuted quite a bit, traumatized, and I have advocated for improvement as best I can.
There are people here who are willing to understand and support, but are not caught up..
Be careful with Neuroscience. The make-up issue may be body dysmorphic disorder, and there is lots of help for that. Our teen had the Neuroscience tests and the supplements helped for a month, then there was a huge backlash and she was even worse. Those supplements have many different ingredients mixed in, some at high doses, adnd they often recommend more than one supplement, increasing problems w/dose, and interactions. Despite our wariness, a tiny,tuny dose of Lexapro worked much better for her, along with hypnosis.
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lymemomtooo
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posted
Do we have any LLMD"S or psychiatrists that ever read the boards? I pray someone comes along to help...Or perhaps even someone that can help Mo naviagate how to break thru red tape, etc..lmt
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-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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clairenotes
Frequent Contributor (1K+ posts)
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posted
I have heard mixed reports about neuroscience. However, it brought my daughter's mental state back around just enough for us to get a foothold. The strange body image thing quickly disappeared and the reactive behavior also mellowed quite a bit to a more typical pre-teen/teen reactivity. It was not a matter of weeks or months, but days.
In our case, it was a godsend because I have no doubt that she would have ended up in a hospital eventually. But again, I have to say in no way were they perfect for us.
The success of these remedies might be dependent on different variables... infections loads, biotoxins, metals, other (?) etc... we don't know how they play out against these supplements (mineral and aminos) from person to person.
For instance, as one example, why is it that some can take melatonin and go right to sleep, and others take it and are wide awake?
Ultimately, however, the neuro LD infections were the main cause... we have to get the children/teens calm enough so that they can take the remedies/medicines they need. This was our gamble, so to speak, and it worked.
You know, sometimes, if you can just hit on the right thing or combination of things, whether with psych medications or remedies, LD abx or remedies... realities can change and can change swiftly.
Thoughts are still with you.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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bettyg
Unregistered
posted
2 roads, you asked what the criteria was for getting UNDER OUR SKIN shown anywhere; here it is!
2 roads, yes IOWA'S 1ST showing was this afternoon on this 70 plus day ... so we only had 8 there! my comments are in each forum.
my day was busy and i was exhausted from planning and preparing mentally for this! i was glad for small crowd; made it like family and all had it but one!
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Shosty
Unregistered
posted
20% of people taking Neuroscience's (or any other) supplements w/5 HTP have a rapid decline after a month. Taking L-tyrosine along with it can help avoid this, I read.
How can you all tell that your kid's psych. problems are from Lyme?
I am not asking that as an innocent or a newbie. We have been involved in Lyme and other problems for years. I feel like I always have to keep other, alternative explanations in mind, also.
In fact, my daughter has done a lot better off abx at this point.
Re body dysmorphic disorder: there are clinics in Boston (MGH) and Providence RI (Butler), and a website called "BD Central." This is an organic brain disorder, like OCD in some ways. The person cannnot stop thinking about how grotesque they are. Often, they are actually quite attractive. The suicide rate is 45 times the suicide rate for depression. Very painful. Our daughter is 80% better and at college, thanks to that micro dose of Lexapro. I no longer care whether it is from Lyme of not: antibiotics didn't help her and,as I said, often made her worse.
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clairenotes
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posted
How do we know her neuro issues were caused by lyme and not some other disease or imbalance?
Because when we followed anti-lyme protocols her neuro issues improved to the point where she was able to discontinue her neuroscience products 1 1/2 years after, as mentioned in the earlier post. Her focus in school is much better and is holding her own socially. We don't believe this is coincidental.
We have not used any abx in our treatment of LD to date.
My daughter did not think she was ugly per se, nor had trouble going out of the house, so did not have the classic body image disorder that you speak of, of which I am very familiar with as well. It was some strange offshoot of that... thinking tons of mascara eyeliner etc., was cool and might get more acceptance.
Each mother must use their own judgment and intuition in deciding what is best for their children and I am glad the path you chose has worked well for your child. That is what is important. We may have been forced to try psych meds, but why would we if neuroscience worked in our case?
Sorry to digress from the subject of this thread... this was not intended and somehow I think there are other complicating issues here for Mo's son which I don't have full grasp of.
Claire
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sometimesdilly
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posted
Mo-
sorry to have dropped out of sight.
babs tx for myself and son and on top of that a host of other pressures have been all encompassing.
this week i'm able to help out in any way i can. i don't have any heavy guns to refer you to, but can make calls and do research.
also, if you will be traveling to Virginia, you (and your family) are welcome to stay here overnight, anytime.
please email me if i can help.
love, dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
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posted
oh, and there have been a number of members here who have tried to help, i surely did not mean to discount that in any way. (((dilly))), hsh, nyjohn, carol, joy ((charlie)), mtree, lymemomtoo, betty g -- seibert nlymie please forgive me for those left out, you know who you are and so do i, i just can't think straight now and must get on the line and fax with another state advocacy group asap. some of you have sent info that i could not respond to that provided a link to a link to a new idea.. i assumed folks understand that, because of the complexity and urgency of the situation.
please, thank you to everyone, my post was not meant to shun anybody or claim i was getting no help. but, dealing with an adoloscent case such as this, you are on your own basically, as exampled in the angry response to my plea, and it should not be that way.
mo
[ 03. November 2008, 05:40 PM: Message edited by: Mo ]
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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I posted a thread on Brain Music which might be of benefit for your son. If he is still in New York, maybe the doc at Columbia could be persuaded to give this a try?
P.S. People in Northern Virginia (Washington D.C. area) are aware of Lyme and tickborne diseases. The farther South you go the less awareness. We live on the North Carolina border and as we all know "There is no Lyme disease in North Carolina."
[ 04. November 2008, 08:11 PM: Message edited by: Lou B ]
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lymemomtooo
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posted
Mo, I continue to pray for a good outcome for Ryan. It is a struggle that only few can really grasp. Be as vigilent as possible and may you have strength to keep going. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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anyone that has been following carefully what you and your family are going through knows the length and depth of your frustration/anger/fear and heart break....
keep focus on your son...take the good from the board and leave the rest.....you have more important things to do....
this is the place to share your feelings ....no need to hold anything back from us.... ...and the ones that hear between the lines what you write feel your emotions...and our hearts break for you....
I will continue to pray and keep you in my thoughts.... you are doing everything and more to keep your son safe.... don't stop reaching out to us/this board and anyone else that has an ear...
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
thanks mtree, will do. i'm grateful that this post was dutifully cleaned up by admins.
i hope this thread helps in a small way to begin to bring movement toward a focus on a highly at risk group; teens with neuropsychiatric tbd's and their co-contributing factors. this combination can become lethal to adolescents with access to the community.
pigwit, you have the right idea as far as creating sustained advocacy, both in this case and others.
thanks to all for your input and suggestions. i'm sorry i can't list each that has helped.
i'm exhausted, and will try to be back soon with some hope/results/direction.
lymemomtoo has been right all along, do all you can to get them well when they are young... and then there are those of us who contend with diseae onset or relapse in the teenage years.
it may be difficult to fully understand unless you live it.
which is why lmt and i may have to resort to stripping at the capitol, hey..and we can hire some guy to chase us around wearing the green tick suit.
m
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
I'm in... ....just give me a date and time....
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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....just give me a date and time....
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