Topic: Do not let down your guard with psychiatric children
lymemomtooo
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posted
Our daughter has shown tremendous progress over the past year. She received brain spect scans at a clinic for brain damaged patients, so finally we knew what parts of the brain the monsters were attacking.
New protocols were put in place that included major changes in supplements, diet, etc and things were on the upswing.
She had a part time job, was taking a medical class(got a B), doing many things with friends and was engaged to her boyfriend of 2 + years..
What I wasn't prepared for was the fact that she still could not handle stress. Her only action in dealing with stress was to either cut herself or attempt suicide...She really had been smooth sailing and had not developed strategies to cope with stress.
So throw in a good friend being in a truck and taking a direct hit by a falling tree from an almost tornado event,my daughter being at shock trauma when they unplugged her and then her boyfriend(it was his sister who died)going in the army and now breaking up with her and she goes back to her past practices.
I continue to want all ticks dead and hold hope for a cure someday for my daughter but I want to warn anyone that has let their guard down, please be careful and work on coping strategies with professionals. (My daughter has refused all such services)
She is home, again we were lucky and God intervened. She got ill and threw up before she was successful but she has over 20 new cuts that have disfigured her left arm.
I continue to pray that my child and others with the psychiatric manifestations of Lyme will soon be WELL. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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feelfit
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Lymemomtoo,
Just wanted to thank you for sharing this story. The best to you and your daughter.
p.s. I want all ticks dead too!
feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
How tragic for her and YOU! I do hope she can pick up the pieces of her life and go on. It's so hard!!
I'm sorry to hear about her friend's passing and the loss of her fiance too. What a terrible thing.
Thanks for letting us know, so we can lift you up in prayer.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymednva
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yes, stress is a major problem for people with psychiatric problems.
one thing i learned was that often these "kids" have somewhat arrested development that leaves them functioning socially at about the level they were when they had their first "break" or "episode."
a couple of groups that you may find helpful are NAMI (National Alliance for the Mentally Ill). www.nami.org. They have support groups for both "consumers" and family members.
They also have a good course called Family to Family that helps family members understand the various aspects of mental illness and what their family members are gong through. they also give suggested ways to deal with them.
the other group is dbsa (depression and bipolar support alliance). they also offer support groups for both "consumers" and family members.
finally, there is a terrific book called I'm not sick, I don't need help! it is written by xavier amador and is available at amazon.
the author is a clinical psychologist who also is the caregiver for is older brother who has schizophrenia.
the book has a lot of helpful suggestions on how to talk to family members and improve relationships.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Cobweb
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LMT- my heart sank just reading the title-cause I knew what was coming.
"Cutting" is like an addiction. People react to stress by trying to 'change the way they feel" whether it be alcohol, drugs, shopping. binging, or cutting.
My daughter watches Intervention every monday evening-usually it's drugs or alcohol-but it's always a life or death situation.
Most of the true life profiles are young adults-who eventually agree to go to treatment after an Intervention.
It's very heart wrenching-I've gotten hooked( ) on the show,too. Seemingly hopeless cases get turned around.
One show was even about a young woman ridiculously addicted to pain meds-prescribed at a pain clinic for arthritis. She had been diagnosed with Lyme disease, but denied the diagnosis.
She eventually made it to an addictions treatment center-where she was treated for the Lyme Disease,too.
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lymemomtooo
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thanks for all replies. Lymed, looks like some great resources..But she refuses to even go back to her therapist, a lady that she really likes.
You can only do so much with a 21 year old. She has called her therapist but has some aversion to any face to face.
Thanks Tutu, I am convinced in the power of prayer.
Optimis--I will try to do some cleaning
Webby, tell me more about this show. I have never seen it. What channel does it come on? She might watch a tv show, if she didn't think I wanted her to see it. AND you are welcome to come down if you have time. I will be there Tues and Wed.Coming back WEd night and then down again Thurs afternnon and Friday.
I am sick because I was so sure that this would never be repeated. I hope nothing else happens because I am not sure how many times we can miss death.
Two months ago, I would have said she is almost a success story. Now, I do not believe in a cure anymore.
I am taking her on vacation for a few days. Hopefully she will come back with a new perspective and my blood pressure will no longer be so high that the Dr says I am a walking stroke. I need stock in Bayer aspirin.
I just pray that other parents out there prepare for any stress that may come along for their lymie. It is hard for adults but the kids just can't see beyond the minute and think their world is ended. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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dmc
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just sending you & your daughter prayers.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Cobweb
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posted
Intervention is on Arts and Entertainment(A&E) on Monday evenings 9pm. Often two episodes in a row.
It just so happens there is a marathon going on now, Sunday Afternoon. You can watch it even if she doesn't.
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I am so sorry things have taken this turn for your and your daughter. We have similar issues with our teen daughter and it is so difficult. We had a recent episode of an attempt that left me feeling so helpless, hopeless and overwhelmed that I feel that I can barely cope myself.
I sometimes wish I could put mine in a protective bubble 24/7, so that she can't continue the self-destructive behavior. Unfortunately, life doesn't work that way. We have put as many safeguards in place as possible, but that is certainly no guarantee. It can be so scary. Don't know what we'd do without Dr. C. She's been very supportive, as always.
Anyway, I wanted to let you know that I am thinking about you and praying for you. With luck and the grace of God, maybe we will get through this and get our children to a place where they can better cope with life's difficulties. PM me if you want to talk.
Best Wishes, Suzy
Posts: 260 | From Virginia | Registered: Jul 2004
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Cobweb
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posted
The show also includes profiles of bulemics and anorexics.
Here is a website that may be helpful to you:
( I erased the site because when I clicked on it from post it went somewhere else.
I did not explore the site much, just saw it as something that deals with cutting,etc as a way of coping.
Wish there was a support group for you LMT, like Alanon is to AA.
I heard a good line on Intervention today describing the subject as "an adult with adolescent behavior."
Cutting usually starts in adolescence. A way to be in control when feeling out of control.
BTW-youngest daughter,C, is going DTO with best friend this Saturday,14th for a week!
Love and hugs, C
ps-here's another site that has a section for Family and Friends you might relate to.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I was one of those Lyme "psychiatric children" but didn't know it until I was 33!
My early 20's were really really hard esp from a psychiatric viewpoint, but I did manage to pull through with the help of my loving supportive parents...
My thoughts are with your daughter...
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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bettyg
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my dear friend, LMT
i too was hoping for a smoother road now for both of you! darn! sorry to read of the loss of 2 friends/fiance!
larkspur, were you/other other friends back then "cutters" too? i think that is what LMT is trying to understand also.
lmt has shared many personal stories with me here and another outlet; my heart just goes out to you. SHE COULDN'T HAVE A BETTER, MOVE CARING MOM THAN YOU, LMT!
my special niece, ashley, had a friend who at 13-15 became a cutter too. i went to a mental support group mentioned above, and they had someone talking about this.
i asked him why she is doing this, "she wants to kill herself; doesn't want to go on living."! that just left me speechless...
lmt, i too hope you have a support group of others going thru this that you share online with or on a 1 to 1 basis.
i'm praying for you lmt/daughter for BETTER DAYS/YEARS "SOON"! with my sincerest love, bettyg
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lymemomtooo
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thanks to all of you..
As for why they cut..I have asked. Apparently tension and frustration builds up and with cutting there is a release. It also proves to them they are still alive or can feel and control their life when they have thought they were numb.
It is a behavior that they share with one another often. My daughter had an anorexic friend that went to a hospital for a stay and came home and had learned about this behavior...She passed it along.
As for the suicide attempts, with our daughter it is always because she sees no hope. ER docs have told me that it isn't a cry for help because she has used some normally successful means. She has also never left a note and only once did she discuss wanting to die to friends. They never told us.
I can go back and remember noticing a lot of anxiety prior to each episode. She is always sharp tongued with me but more so before any attempt. She also has obsessive compulsive behavior and before an attempt this is always either much worse or she becomes a complete slob with her room.
And I agree with the comment that anyone would have trouble with what she has endured lately. We have tried to get her to talk to us or her therpist and she refuses. She keeps telling me she talks to her friends. This time she needed more.
thanks again. lmt.
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
I wasn't a cutter personally, but my roommate at the Institute was....
Seriously, I was hospitalized for depression when I was 21 for 3 months..
Never knowing it was Lyme disease that caused my psychiatric problems.
From what I know about cutting, it is r/t the need to "feel" something, and a release, like you said...
Suicide is the only option when you are living a life so devoid of joy and there is absolutely no light at the end of the tunnel. You feel you are such a burden on all around you that even those you know love you will be "better off" if you were gone..
I obviously don't know your daughter's story but I am certainly familiar with some of the psychiatric manifestations of Lyme at that age..
If you feel I could help in anyway, please let me know...
abby
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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AliG
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lmt,
I'm so sorry that you and your DD are having to go through this. I can't even imagine how awful you must feel.
Has your daughter been treated for the Bartonella-Like Organism with Levaquin? I felt the strangest release of anxiety & built-up tension when I was started on it.
I know that I have not been treated long enough yet & have been relapsing, but I recall that it was the most amazing feeling to have that feeling dissipate.
I don't know if she is being treated for her depression/anxiety but I have also found that the herb "Holy Basil" (aka-Tulsi/Tulsai) really is helpful with that.
It is an adaptogenic herb so it balances the brain chemicals, as opposed to just increasing the circulation of them.
I used a tincture of it to get off of Effexor-XR without withdrawal symptoms. I just took some every time I felt the Sx starting & within a week or so I wasn't needing it anymore.
I know they also sell it in capsules. Perhaps she might consider trying something like that.
Does she have any pets that she is very close to? I remember, when I was young feeling that my parents would be better off without me. Perhaps I was angry with them for not being able to just make everything "all better"?
I really don't know. I DO know that I realized that my pets wouldn't have understood why I left them and felt terrible about thinking of doing that to them.
That was enough to keep me from trying anything until I grew older & gained a different perspective of life.
If she doesn't already have a pet, perhaps you could interest her in one? Maybe that could help provide a distraction from her focus when she feels overwhelmed.
If she needs release caused by inflicting pain on herself, perhaps she could try using other means. Driving your body to excess through a torturous dance clas, gym workout or by running or swimming are some effective means to vent frustration.
I realize that those things can sometimes seem impossible for someone with Lyme, but when overwhelmed by obsessive focus, I think they are much safer than cutting oneself.
Reflecting on my life, I think it's highly likely that dancing afforded me the opportunity to grow up. At times when I felt like I had no one to turn to, I was able to escape my reality by focusing on my dance.
I am so sorry that you and others are going through these terrible struggles with your children.
I'll keep you and your daughter in my prayers. I pray that you are able to find some way to help her that she will agree to.
hugs & prayers, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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I can't even begin to tell you how sorry I am!! The worst part is no matter what I say; it really doesn't make thinks much easier, does it!??
Can I tell you though that I have been through, and still going through what you are.
My oldest son, 24, was diagnosed with schizophrenia when he was 18. He has tryed to committ suicide 3 times! Like your daughter, he was also very serious. It is never a 'cry for help', he has always hidden the evidence of what method he's used. SO I REALLY, REALLY UNDERSTAND YOUR FRUSTRATION, SENCE OF HELPLESSNESS AND SADDNESS!!!
My younger son, 14, was just diagnosed with Lyme in Jan. 08, and he has MANY psyciatric symptoms. He has been suicidal, so much anxiety, depression, dx with bi-polar and cannot handle any type of stress. It is a constant struggle helping him, while watching for signs that he may hurt himself.
I TOO BELIEVE VERY STRONGLEY IN THE POWER OF PRAYER, AND I WILL CONTINULLY PRAY FOR YOU ALL!
I know that you have sooo much on your mind, but would you mind sharing your daughters story with me??
How long and what type of infections? What type and how long has she been on treatment?? Also, what doctor's does she see??
There is another VERY wonderful women on this forum, DANSMOM. She has much experience with everything you're dealing with right now. If you have never spoke with her, please do.
Just a side note; there was one thing that seemed to help my older son. Is there any type of program that she can volunteer for in counsling other young adults??
I know that may sound silly, but if they can kinda turn their situation around-----her helping others, instead of her feeling like just must get help; it gives them a sence of 'purpose'. If she can show someone else the light at the end of the tunnel, ( you know it's much easier to show some light to someone else, than it is for ourselves!) then she will start to see it without even realizing it.
Just a thought. God bless you!!!
Many prayers
Posts: 351 | From Georgia | Registered: Feb 2008
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What to say other then I hurt for you. You and your family are in my prayers....
I'm glad that you started this thread though.....because it is sooooooo important to not let your guard down....but also know that you can't be with them 24/7...
my daughter suffers......illness, pain, sadness.ups and downs for so many years.....she's good when she takes her meds..but when SHE DECIDEDS she dosen't need them anymore to soon....she spirals down fast...
Even though she has never tried or said anything about hurting herself..I fear that...I know she suffers...I feel her pain.... she is soooo young and just wants to be a "normal" 21year old...she tries so hard to be "normal"....I hurt for her....
As mother's all we can do is keep our eyes and ears open...and PRAY... ....
you are doing a great job...you are a great mother...your daughter is lucky to have you...and I'm sure you do everything possible to help her........... with you by her side she will get better....
you are more then welcome to PM me....our daughters are both 21....its supposed to be a great time in their lives....
thoughts and prayers...and more thoughts are with you.... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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bettyg
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posted
hi lmt,
dansmom was mentioned above, and here is how you can pm her......
click on directory at top above now go to left hand side to 1st area where you can type a name in
dansmom and click enter
should bring up her profile; go to upper right side and send her a PM from there.
hope you 2 can get together since you are walking in each other's shoes!
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posted
Hi LMT, I am so very sorry to hear this!! Yet another trip to duck camp. She really got a double whammy first with the friend's accident and then the fiance!!!
Yes certainly enough to send anyone over the edge. And I know what you mean, I see my girls who both have bart not developed the coping skills when frustrated or angry. I asked my 15 yr old why she always hits something and hurts her hand? - I know the answer........
I hope that with you 2 going a way for a bit that it will help both of you de-stress and start to recover.
Write when you can!!!
Love & hugs!!
Gail
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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Clarissa
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Firstly, please accept my sincerest sympathy to yours and your daughter's tragic plight with this horrific disease.
My Lyme & Coinfections have been primarily emotional/mental and I've suffered since I was a child (I'll be 40 in July).
Anyway, I'd like to bring up what AliG mentioned about Bartonella. Lyme treatment did alleviate most (if not ALL of my physical symptoms) but it did NOT alleviate all of my mental issues:
It wasn't until they found my Bartonella (JUST last Aug 2007) and treating it that THESE symptoms, my achilles' heal symptoms listed above started to resolve.
I truly think that Bart is the "mean brain" coinfection. I am now in the calm after the storm and, for the first time in my life, I don't feel manic or frenetic. It's almost scary...but in a good way.
It might be something to pursue to give your daughter more long-term relief. The Bart herxing is very tough so she'd have to be highly medicated (I was on 150 mg Luvox and approx 8 1 mg of xanax DAILY) while treating. The herxes are like emotional tidal waves.
I'm happy to say that my treatment lasted 5 mos and I've been off abx for 3 mos and am down to 2 xanax a day.
One day at a time. I'll pray for you and your dear daughter.
lymemomtooo
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Member # 5396
posted
WE just got back this evening. Thanks for all of your posts.
As many of you know there is no magic potion to end this pain. She has figured that out already.
For her history, I can't remember who asked now. We live within a 1/4 mile of remnants of an old farm house and barn. It is behind our elem school and is farmed but the farmer has let all go wild. It is normally surrounded by a livestock crop, such as corn.
My daughter was always an outdoor lover and would go to this old farm and try to sit in the exact spots that the deer had bedded down the night before. She would come home peppered with the deer ticks.
She also raised fancy European Mice for a few months and attempted to also catch and tame many wild ones. She has been bitten by the wild ones many times.
She also has popped an engorged tick and taken a direct hit in the eye with the blood.
She also brought a stray cat home with fleas. So bart could have been from that or the ticks.
There is even the possibility that her mother passed along some of this junk to her before birth. I attempt to have my head in the sand with that part.
She has been in wilderness areas at Assateague and other places on the shore.
Her exposure to the damn ticks has been abundant. She never had a EM rash until just a couple of years ago.
She is currently 21 and started having some withdrawal symptoms in late elem school. The guidance counselor suggested we get some counseling for her since she had always been fun-loving and outgoing.
We took her to a family practice dr that was highly recommended to us. DUCK...He started her on Prozac and kept upping the dose thinking she would be better I had a zombie and have never gotten her completely back.
Her ELISA and WB are never CDC positive. So in the stupid believe what the DUCK says years, we struggled from one psychiatrist to another to help her.
We rarely found anything that worked for even a short period. She was also given drugs that are no longer given to children and there was a time that she had more than one of these at a time.
She also developed type I diabetes. Her endocrinologist never will say that Lyme is a player in this. But I am convinced that Lyme caused it.
She saw no hope for a better life and her friends abandoned her. She went thru portions of school with no friends, or she was too ill to even attend.
She started cutting herself and has attempted suicide at least 17 times. Seh has been at some of the best juvenile psych facilities in the mid atlantic with no postive results.
She has an outstanding LLMD. I consider her our Angel..She has gone thru Hell with us and still keeps trying. There have been times when my daughter has been horrid to her. I thank God for her hanging in there with us. She is always trying something new if we are not making progress.
We have also been fortunate to have received the help from a great support group leader. I actually have since gotten info from 4 different groups. What would we do without them?
However our daughter is her own worst enemy and has been non compliant many times. Her reasoning ability is not what it should be and she only sees pain and suffering and little hope so she goes for what she thinks is her only solution.
One Lyme literate Psych was helpful but we still needed more. Finally it was obvious that her cognitive skills were going down hill very fast so we took her to a brain damaged clinic and have had a year on meds that seem to work and more controlled diet and supplements that help the healing.
I think my daughter as well as the other teens that are suffering, can only see the here and now and know that life sucks...They can't get past this and think beyond it. SOOOOOOOo unfortunately, we all must be vigilent to keep them as safe as possible.
I have slept in her room, outside her room, etc. I have removed as many dangerous things as possible but at 21, or even younger, she was able to go to the store and buy all sorts of things that were dangerous.
YOu must think way outside of the box if you have a teen suffering.
And I will admit that I thought nothing wrong with her throwing up a few times. I got her some pepto bismol...Never again..Straight to the ER with anything unusual for no reason.
I don't remember who mentioned Bart but i am sure it is a major player. She was only on Levaquin for a brief period and started having some tendon pain. I think it is really the major out of her mind player. WE did go months a few years ago with her having nightly episodes of violence to herself and others. She was so ill that if she wasn't suicidal, or raging or homicidal that she would crawl into a fetal position and rock and cry.
Quiet crys at first then out of her mind things. It was as bad as any sci/fi or what you might envision at an old world institution. I think the Bart was the cause but the meds intensified all of this. Her herxs are suicide attempts.
We have not had this raging for a couple of years.
As for pets, she has had many and then she looses interest and her OCD is so bad she won't touch them. I now care for a newt, two of her cats, a parakeet, and she also has 11 hamsters, a fish and a ferret. SOOOOOOOOOO I am not for more pets right now. When she is ok, she can take care of the ferret and the hamsters..But if she is off a little, she will not clean up the cages or her room.
Sorry for the novelette. HOpe I have answered some of the questions. Gotta go and try to finish unpacking the car. A storm got in the way earlier.
I think she is better but will not let down my guard. Thanks again for all of the support.
Posts: 2360 | From SE PA | Registered: Mar 2004
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Clarissa
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Lymemomtooo,
I'm rendered speechless. You've gone down every path and left no stone unturned.
All I can say is that YOU are an Angel and the best mother any child could have.
I'll pray for your dear daughter as it's tremendously, extremely, tears-in-my-eyes SO SAD to me.
Sooooooo unnecessary. Damn TBD's suck!! It just totally bums me out to put it mildly.
Lots of healing thoughts and great admiration your way.
posted
Thanks for sharing your (and your daughter's) story- You are both in my thoughts and prayers..
Earlier I mentioned I had a lot of neuropsych lyme related issues my whole life too, until the neuro lyme caught up with the rest of my body 5 years ago!
To be honest, for me the physical lyme manifestions are more bearable than the neuropsych stuff - I am so sorry your daughter has been in so much pain.
Anyway, from reading your above post I might see the same LLMD you take your daughter to (?Dr. C in C-ville)
She has never given up on me either, and has saved my life at least twice.
Regardless if it is the same LLMD or not , it sounds like you are in good hands.
Stay strong and know you are doing everything you can.
Abby
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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bettyg
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lmt, sending you all my love, concerns, and prayers for better DAYS/YEARS ahead for you and your beloved daughter!
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posted
LMT, I think you are right, the young teens and young adults can only see that their lives suck. They want so desperately to be doing normal things and just can't.
I think a lot of it is that they have no control over their own bodies or lives. It's sad.
I have a 17 yr old that has been sick since she was 14 and it is hard for me dealing with all this. I know it is even harder on her.
Thank you for posting, makes me not feel so alone.
Sending prayers for your daughter, you and all the other families dealing with this dreadful disease.
Posts: 41 | From Warfordsburg,PA | Registered: May 2007
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lymemomtooo
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Member # 5396
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I again thank you for kind words and support and I also hope and pray for healing for all of you.
Lark, yes, you know our Angel. She has gone the extra mile always. She was calling us to check on my daughter..But we were already on the way to see the ER Duck.
hugs to all. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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Shosty
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posted
My 18 year-old daughter is having similar issues. Also has had type 1 diabetes since age 4. Has your daughter thought of harming herself by giving herself too much insulin? Is she on a pump? If she goes in the hospital, who manages her diabetes (a pedi hospital around here almost killed or daughter by mixing up the decimal point, so we are scared of hospitals!).
Our daughter was on antibiotics for a couple of years, but had to stop. The combo of abx and diabetes caused a lot of yeast, and other GI problems that follow from that.
Seven years ago, she developed a psychosis while on tetracycline. Otherwise, she has been stable, but had a lot of physical problems and pain.
This past year, her senior year in high school, has been a nightmare. Depression, anxiety, panic attacks and very bad body dysmorphic disorder, a body image problem w/obsessive thoughts, that has a high rate of suicide. She sometimes gets violent, throwing things, and also punching herself to the point of bruises.
We have tried therapy, which she now refuses, hypnosis, supplements like 5 HTP and theanine.
How do you actually know that your daughter's psych. problems are from Lyme or Bartonella?
I keep thinking we should look at our daughter's Lyme again, despite the problems with antibiotics. But then again, maybe I need to accept that she has a recent-onset psychiatric illness, that isn't going away soon. I doubt that antibiotics will do anything, since I see no herx or other change when she does go on them for something else.
The sad thing is, she has been ill with physical problems of many different kinds (asthma,migraines, diabetes, orthopedic problems, seizures, daily headache, very painful endometriosis, hypothyroidism, fluid retention syndrome) and was finally physically quite well, except for low cortisol after all that pain. And now, the psych. stuff has arrived, when we thought she might finally have a good year.
There is no decent help out there. I'm sure many of you know the feeling.
She is supposed to be headed to an Ivy League college, but I just want to make sure she is alive! People come up to congratulate me all the time, and it is awful. They have no idea.
Sorry for all the kids- and parents- going through this. I hope your crisis passes. Let us know if you find anything that works.
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lymemomtooo
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Member # 5396
posted
Shosty, I just lost a long reply. Sorry. I am too brain dead to recreate it. So here goes another one.
My daughter has everything you mentioned plus a few more. We had some genetic testing and testing for mold and she has it all. Plus a virus.Plus now 5 or 6 psych codes. She also has the cursed gene that lets one get a systemic mold infection and also the gene that doesn't allow you to detox very well.
Two llmds have told us that the bartonella was more likely causing the rages and violent episodes. Our daughter has both Lyme and Bart. Lyme was treated at great lengths but she was often non compliant and she has never had a killer treatment for Bart. Her herxs are suicide attempts and a try at Levaquin was damaging to her tendons. Nothing else has been tried yet .
I can only suggest that you go out of your way to remove everything dangerous in her environment and then rack your brain for things you may have forgotten...But it is almost impossible for you to keep older children from gaining access to dangererous things. They can go to the store and buy them.
I did have a bottle of Valium in my pocket at all times in case of emergency. It is not a great pick for regular use but it has helped save life in a couple of instances and it can diffuse a horrible sitution within minutes.
Attempt to get her as well as possible before sending her off to college.
And if she is like my daughter, she is not happy with her caregiver. So try to overlook any mean junk that is flung your way.
I am no Dr but I have heard enough on the boards of children with Lyme that then were also diagnosed with diabetes to feel that there is a direct relationship from one to the other. The bacteria loves sugar and also their can be a domino effect from damage to the immune system. Not sure if it is the chicken or the egg, but ticks are to blame.
May you continue to have the strength to fight this and to get her well. The tick borne crap is bad enough but with the diabetes and high blood sugars, the deck is stacked against us. hugs, lmt
ps.just reread your post and realized I had missed the things that work. The only psych meds that have helped are cymbalta and abilify. She also takes a variety of supplements for brain health and is supposed to be on the south beach diet. Hope this helps.
Posts: 2360 | From SE PA | Registered: Mar 2004
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bettyg
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posted
my heart goes out to you both; thanks LMT, for sharing your wealth of personal knowledge with this othe mom walking in YOUR shoes!
may you 2 keep in touch! may God provide you with the guidance and a "miracle" taking this completely away from her system where she wants to live; not commit suicide!!
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![[group hug]](graemlins/grouphug.gif)
![[Razz]](tongue.gif)
) on the show,too. Seemingly hopeless cases get turned around.![[Smile]](smile.gif)
![[kiss]](graemlins/kissing.gif)
![[Frown]](frown.gif)
I can't even imagine how awful you must feel. 
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