My daughter has been doing self mutilating again.

She has been on a 2 week herx and the endocrinologist this afternoon told me to get her to the psych ward..Well the last time, they wouldn't treat for or believe in lyme and we had trouble getting her out..So no to that one...but the psych ward is here...

One of my best friends died from chemo gone bad, or so I suspect..I was with her in the ER yesterday and we both did not think it was the end..She was only diagnosed in Sept..Live each day as if it is your last..Little did we both know yesterday...

And we have a nail biting IEP scheduled for Friday. We have been advised to get a lawyer..GReat...

Any stress buster ideas would be great, short of poison..I apologizem for my inability to help myself..I am pretty much a mess...sorry..

Other than that, you can always do what I do. Jump in the car and leave!

When the going gets tough, I am a big fan of chemical assistance. I took valium once, just for a 2 week period, and it really helped me over a very bad time. It didn't zone me out and I was completely functional.

There are some natural options, too, like theanine, chamomile, and magnesium, if you prefer to go that route. And breathing properly, silly as it sounds, has helped me enormously at times.

Are you sleeping at all? I'm wondering if you are afraid of sleeping too deeply and missing what's going on with your daughter?

Is there anyone who can take over on the home front to give you a break?

I dunno if you've ever had a Reiki treatment--it can be very calming.

Also, any of the Thin Man movies. Or The Philadelphia Story. Or Beauty and the Beast, or My Cousin Vinny. They've gotten me through some terrible nights when my husband was scarily ill.

And my question for any caretaker -- how's your own health, and especially, with all this stress, how are your adrenals doing?

Someone that might could take you daughter for an afternoon just to give you a break would be a real relief for you! And might give her someone else to talk to. Your daughter is very lucky to have a mother that cares as much as you do. Most kids are not that lucky.

I can't say I know what you are going through personally as I have no children but I do know what 2 weeks of herx from hell is and how they make someone feel!

I could just imagine how hard it is for your daughter to handle as I am a 35 year old and I don't handle the long intense herxes well either!

Two week ago I was forced to sign in a phych ward, if I didn't they would of put me into the involuntary unit (which can be hell). One has no choice in the matter. No matter what you say or do, the kangaroo court will find you guilty and will lock you up with all the other normal people.

You have no choice but to play their game, if you don't, they will make life unbearable.

There should be an inquisition to their power.

Do you known American Psychiatric Association published recently in their journal, that Republicans need phych help. They feel if anyone does not agree with their ideas and/or agenda, then that person is mentally unstable and need a phych.

While in the ward, there were two patients with the classic lyme symptoms, one with symptoms identical to mine. When I brought it up with the phych Dr, she said that their cases were entirely different than mine . They knew that I had lyme and was preaching it every second when I could. I even yelled at the Dr and the clinicians. Instead of standard 2-week stay, they kicked me out of ward; they were getting tired of listening to me and yelling.

I was always educating the nurses.

If your ever in the ER, never, Never, NEVER, give any hint on your phych problems.

It nice, relaxing and secure in the ward, but when one leaves, things go back to what they were before. Best to get help on the outside.

Better to take a hot bath.

My LLMD recommended a supplement called rhodiola, by Real World Health. It's meant to help how one handles stress. I really feel that it's made a difference.

I tried to go to to their website, but their under construction. I would email them at [email protected] and order some.

I'm sorry that this is not an immediate solution, but IMO it will definitely help in the long run.

Hang in there,
Pea

I'm sorry..this sounds like an extremely rough time.

I like the suggestions for you above, but..were you asking for psych help for your daughter?

If so, I did hear recently from another Doctor that Valium (brand name only, no generics) can be very effective in getting over these humps in the short term. Maybe just for bad herxing times..not long term..temporary.

Other than that, constant dosing in drinks of liquid ionic Magnesium throughout the day (to add up to 800mgs a day), 500mg Tyrosine in the AM,
and L-Triptophan at night, or Valerian
( these last two not while on anything like Valium, though, shouldn't mix), all these supps have helped in the longer term..but you may ned domething stronger during the really hellious times of herxing till things get better.

I would ask Docs about Valium.

You'll know if it's working if things settle down, and she is sleepy.

Please take care of you, too..I'll be thinking of you.

Please also write me if I can help in any way with the school. I didn't like the sound of one of the invitees. I can try and ask around about that type of member.

Huggs,
Mo

Another instant calmer downer is Lavender. Get a bottle of Lavender Oil at a good health food store - make sure it's the kind you can put on your skin. Put a couple drops on your finger tips and rub it around, and put a little near your ears. Every time you need an instant relaxer, just breather deep or put your hands near your face. Works wonders.

I am so sorry you are getting whammied with so much stuff all at once, and am very sorry for the loss of your friend. Keep her memory in your heart always, and she will never be lost to you.

Our thoughts are with you.
p.s. Greenpea, we must have the same LLMD! Real World Health - I stop by there frequently to pick up my stuff in person. Guess I'm lucky to live so close.

My daughter has been unable to eat for a few months due to GI pain and slow metabolism after an SSRI. I have been trying to get her help since May.

When we got there, the "kangaroo court" all ganged up on us and said her eating problems (and headache) were psych. disorders. They misinterpreted facts, and fit everything into theier nice neat box that doesn't really fit reality.

To make matters worse, we had problems w/endocrinology and our own endo., who had said he would be around to support us, took off for Singapore! The night nurse tried to give her 8.8 units instead of .8 (would've been fatal, lucky I was awake) . Second day she started vomitting and ran really low, so they told me I did not manage her safely (I told them it was the nausea that lowered her blood sugars) and they didn't even look at another day! Her control is usually great.

They gave me an ultimatum: don't touch the insulin pump or both of us should leave the hospital. We said we would leave, and then the evil doc said, in front of my daughter, that he was calling DSS (Dept. of Social Services) on me.

This is so preposterous! I spend more time parenting than these docs spend on medicine. I'm not only stressed by my daughter's illness, her stress after this trauma, and now I'm waiting for a phone call from the state social workers!

Instead of focusing on my daughter's health, I have had to do all kinds of defensive stuff legally.

Right now, I can barely tell I have Lyme because my whole body is so wired that
my paresthesias are almost camouflaged.

Sometimes a tiny piece of xanax has helped me, but right now I can barely swallow!

I will get to the health food store, to try some things tomorrow..Everything here is closed tonight and I just got back from waiting 2 hours to vote.

From listening to Marnie, I do have Mg so will hit it tonight before I try to sleep..And sleep is something I do not do well when she is so messed up..

Who knows what comes first, the diseases, the herx or the out of control blood sugars..But when she gets messed up it isn't pretty and we have Valium but try to force a strong 17 year old to take what she doesn't want and it is dangerous..

I do think I will check in with the local Doc tomorrow for something for myself..I have never taken anything but think I may need something for a few days..He tried to tell me I needed something a few weeks ago, but I told him off....He is an old friend so maybe he was right.

Hey, andie here sending you and your daughter love and compassion.

I know you have been battling this horrible neuro/psych stuff with your daughter for awhile. Also her diabetes, neurotoxin, lyme and bart. !!!!!

I'm so sorry you are in a bad place right now.

I can't believe the psych/hosp won't coordinate the psych component with her Lyme/Bart meds!!!

I know I'm probably preaching to the choir here right now but:

IMHO
and the opinion of my LLMDs up here, the first order of business is gaining control the runaway train with psych meds if you can

Because:

The Lyme/Bart isn't going anywhere soon.

And anyway, how the heck are ya gonna make it to tomorrow? Am I right?

I did a "search" and saw that you were tx for the lyme and bartonella and that at one time she had been on effexor, risperdal and ???.

At that time she was also having a very tough time. It was thought the effexor (anti depressant) might be partially responsible?

Forgive me; what abx is she currently on and what psych meds?

I think in September she was on Zoloft 2x @ day for the ocd, risperdal for the nightmares and valium as needed?

Now this is just my humble opinion, but from living in the "psych ward" myself, do you think the zoloft could have triggered another episode?

What psych combo has stopped the rampages best for you in the past?

You may recall that we have also been living in this special hell with little JC (he's 6).

I haven't been able to post for awhile because we've spent the last couple weeks trying to keep him somewhat safe and stable.

Besides his initial presentation with worsening cognitive symptoms (Major ADHD, autistic, tourettes, ocd) the abx psych herx on rocephin drove a new onset psychotic/manic bi polar path through his brain; so he's basically stuck in mixed/rapid cycling episodes that last for hours or days.

Hopefully, some day they will fade away with enough of the right abx, but in the meantime....they aren't strong enough to catch up with the damagethat's happening to his brain with every episode.

Our Psych works with LLMDs Dr F and J up here in NY/CT.

I fought that diagnosis because it hurts so bad but like it or not, our LLMDs basically say we need to treat those symptoms, no matter where they came from.

We have been trying out various psych meds so he can function but ANYTHING that is even remotely activating(ie; anti-depressants, stimulant) is so incredibly agitating to his frontal lobe damage that he goes POSTAL. INSTANT PSYCHOSIS.

He couldn't even handle Tenex, (the mildest of anit-hypertensives)which only reduces inflammation and increases blood flow.

Tenex is theoretically a good thing for lyme adhd and does wonders for some folks...

We've got him on risperdal to try to stop the psychosis and started him on rifampin for the bart. Still on the rocephin iv and
zith.

Right now he's basically cycled down to agitated hypomania and out of it with autistic-like behaviors and totally disabling add; he wanders around not knowing what's going on ; needs one on one all the time.

Every time we try to add something to help him come out of it a little he goes postal.

I know the usual meds seem to have weird responses in the Lyme brain but have heard from our Psych LLMDs that they've had good success with atypical antipsychotics. Just a thought. This whole thing is trial and error, I know... we're still in the woods ourselves.

Re: the self mutilating; I saw some anecdotal stuff that the risperdal is also good for that and slows down the wildfire rages. Also see:Naltrexone/Revea for same.

For the ocd it seems we're stuck with some kind of serotonin booster which is gonna be an ssri or maybe anafranil. Maybe ifyou add a stabalizer or more risperdal to the mix she won't flip?

As for the IEP; can you put it off till you can catch your breath and geta lawyer? Or maybe you need to do it ASAP?

In either event, MO is the one in the know re that stuff. She just apparently did some amazing stuff for Ryan so you might want to check with her with specifics.

As she so aptly put it, some of us out here are living parallel lives.

I am feeling for you tonight Lymemomtoo. Email me, I send you my phone # and we can commiserate and share tips.

I know I could use em.

All my love to you Lymemomtoo

love,
andie & JC

PS: I'm also so sorry about your friend...
and that you're having to go through such a rough time.

So...

I second all the above mentioned opinions:

I vote for hot baths and valiums all around for everybody who has to live in the psych ward!!

OKay, okay... if we HAVE to go herbal...

I love:

Sleepytime Extra with honey

a hot lavendar bath

a supplement called "Kava Oasis" for supercritical calming (New Chapter). Works in about 20 minutes. Kinda Valium Lite.

And those machines that make ocean wave sounds or heartbeat sounds in the background are good to go to sleep to; they kinds make your heartrate slow down to match the rhythm.

nitey, nite sweetie

love,

To Lyddie, God you know this too well...so does Andie, Jodie and Mo..We all know Hell...

To GP, Julie, Stacey, Cat, etc. thanks so much for also taking time to help..

Andie thanks for the suggestions on some of the psych stuff.I am convinced that Dr. V.S. is my angel and we will get it right, but the diabetes makes it so much worse as Lyddie also knows..One will not be in control if the other is off..

I will not go near the hospital unless there is a life threatening wound..I know we would be in jeopardy of her being locked away.

As for psych drugs, since she was misdiagmosed for 5 or 6 years, she has had most of them out there, including the ones kids are not supposed to take.Sometimes two of the do not use ones at a time. I do feel fortunate that she is still alive. We also went thru 3 non lyme literate psych's until we were fortunate enough to find Va.

We also wasted money at John's Hopkins..They know mice have chronic lyme but can't seem to understand people with it. I recently heard that there was one of their Drs at Green Spring Station that was helping but do not try the psych dept..

To Alex, so sorry you have gone thru this..I agree with you, there are probably undiagnosed lyme patients in every psych ward. We have dealt with 3 and none of them were ll. I think many of the Drs there are in the right place themselves!!

Dr. A. C. in Pa has told me it is a herx situation and would get better..Just have to keep her safe until.?????

I again have to "fess us" to Marnie, that the Mg did help me last night..She is very wise..Just wish I could understand all of the chemistry and physiology of it and this disease. Wish those classes hadn't been at 8am and that I had more gray matter.

I will add all of you and yours to my prayers..I pray things improve soon for all of us and our children..It is very hard being a mom and not being able to heal the wounds..There may be some things worse, but to me this is pretty devastating..

My heart goes out to you, your daughter, and the sudden loss of your close friend yesterday!

I also recommend praying for help to whoever you believe in, to carry you during the times now that are so bad for you.

Prayer has really help me overcome things similar but not exactly the same as your problems.

I also liked the suggestion of playing the funniest videos making you laugh so hard, you cry. Laughter even at inappropriate times sure helps us deal with what we are going thru.

My heart goes out to you, your daughter, and the sudden loss of your close friend yesterday!

I also recommend praying for help to whoever you believe in, to carry you during the times now that are so bad for you.

Prayer has really help me overcome things similar but not exactly the same as your problems.

I also liked the suggestion of playing the funniest videos making you laugh so hard, you cry. Laughter even at inappropriate times sure helps us deal with what we are going thru.