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Sister has lost will to live, resisting food & drink - Part 2

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Posted 9/30/2016 12:06 PM (GMT -5)
LauraJK, I hesitated in saying this, but it's a ray of hope for you - as you have said, her Lyme and company symptoms are down to a manageable level you believe, so now if you can keep that much steady, and then work on getting her off the psychotropic meds, you will then be in a much better place. One step at a time.

We are here for you for support, so you can vent and express your fears/concerns!
Posted 10/2/2016 2:31 PM (GMT -5)
Deejavu-
Sorry for the delay in responding to your comment from part 1 of this thread. And thanks for your recommendations on the Jernigan formulas and Hansa Center.

As for the CNS/PNS formula, I've been just giving her the dose from the bottle (20 drops 3x/day). But, after reading Dr. Jernigan's article on ammonia being the main toxin involved with Lyme, I did some more research and found out that people with Down Syndrome (like my sister) already have a problem with ammonia accumulation. So, I guess that's why my sister's symptoms seemed so severe to us. Anyway, after reading that, I added other supplements, in addition to the CNS/PNS formula, to get the ammonia down. We've also been giving her HydroxyB12 (at least according to Dr. Klinghardt, this helps get rid of ammonia in the brain), Alpha Ketoglutaric Acid, Yucca, and Lysine (not as sure about this one, but did find some info suggesting it helps get rid of ammonia). Anyway, so far, the combo of the CNS/PNS formula with the other supplements seems to have reduced her symptoms (the buzzing, vibrating, pounding, banging, bouncing sensations and the tinnitus).

Now, another thing that has also been possibly helpful is that until a couple of days ago, my sister was on a protein poor diet, which I read somewhere was also recommended by Dr. Jernigan (I think for the same ammonia issue, since protein apparently gets converted into ammonia?). So, at least for a while, we didn't have any added ammonia coming from her diet. But now, she seems to be getting her appetite back and is more interested in eating chicken. And she's already started mentioning feeling some bouncing or slight banging, so I think this means I'll probably have to start increasing the ammonia sopping supplements. It's good to know I can increase the CNS/PNS dose--I was actually going to call them about that anyway.

Thanks for the recommendation for Silphitrin--I'll definitely look into that one as well (we are really interested in doing as much as possible to help her brain while we get her through the withdrawal from the Trazondone and Ativan). Right now, I'm just trying to get my sister transitioned from Buhner's protocol over to the Borrelogen in the ACV (given all my sister is going through right now, we just didn't want to take any chances in continuing the Buhner herbs with alcohol in the tinctures--even though the total is only about 2 tsp per day, it still makes us nervous). The only tincture I'm going to continue is Christopher's Ear Nerve, which we are doing for her tinnitus (much better now--right ear is quiet, and left ear apparently has the "soft version"). So, since alcohol is only in 20% of the tincture, it should only be 1/5 of a tsp.

Anyway, thanks again for all of your recommendations--I sure wish I stumbled in Jernigan's info on ammonia and the CNS/PNS formula earlier on in this Lyme nightmare. I'm sure it would have made things a lot easier on my sister.
Posted 10/2/2016 2:41 PM (GMT -5)
I'm so glad you are finding things that are working and helping your sister!!
Posted 10/5/2016 6:17 PM (GMT -5)
Thanks Traveler.

Unfortunately, we haven't had much luck in finding someone to help us get out of this mess with Ativan, and we are quickly losing hope that we will ever get my sister out of this nightmare.

So far, the LLMD is ignoring our calls--we left a message asking for another referral to a psychiatrist, since the first one she gave was not taking new patients.

My sister's pre-Lyme primary care doctor called us back and said we were on the right track with tapering, and gave us some other names to contact (so I guess there still some hope here)

My mother spoke w/a psychiatrist who wasn't taking new patients, but listened to my sister's situation. His stance was basically that there must be something else going on with my sister b/c these were small doses, so going cold turkey off of Trazondone after taking 50 mg nightly shouldn't have caused a problem, and the low dose of Ativan shouldn't be causing such a problem. So, his basic message was that it must be something wrong with my sister b/c these meds are safe.

Well, all I now is that we had my normal sister during this Lyme nightmare until we got involved with psychotropic drugs, and now we are terrified we will never get her back. Biggest mistake of our lives
Posted 10/5/2016 6:44 PM (GMT -5)
Hi Laura,

I'm happy to hear the CNS/PNS formula is helping. It's really safe to up the dose of this botanical. I reread some of my notes and Dr. J. also gave my friend the Silphitrin along with the Neuro-Antitox to bind up the ammonia.

Because my friend's brain was so affected by the damage from 30 years of accumulating ammonia Dr. Jernigan sent her to Dr. Amen who is a brain doctor and she had fantastic results with him. My friend also had huge problems sleeping because her brain was overstimulated and Dr. Amen helped her with that too.

www.amenclinics.com/

Just a thought,
Denise
Posted 12/14/2016 12:48 PM (GMT -5)
Hi-

Just thought I would give an update. I guess my main reason for posting is to serve as a warning for others to be extremely cautious when dealing with psychotropic drugs and to stay away from Benzos--I have never seen anything so horrific in my life. I never knew it was possible for a doctor to prescribe a drug that could destroy you and make you go through absolute hell in order to get off of it.

We are now down to 1/6 of the .5 Ativan pill. Prior to Thanksgiving, we were starting to fell hopeful that we might actually survive and get my sister out of it.

We went from having her screaming and yelling all day long and asking us to get rid of her, to having calm/quiet morning and early afternoon (though still severely and suicidally depressed) and only 3-4 hours of screaming/yelling/crying. She still resists food and drink--only willing to eat ice cream and bananas, and only has one OJ with Lyme drops (so 1/3 full dose), and only one detox water w/CNS/PNS drops. She also takes 8 oz of water with homeopathic drops for mood/anxiety.

Last week, my mother was in the hospital for a couple of days (gall bladder problems) and I had to manage my sister by myself. I was able to do so and actually thought we were doing better and going to get out of this. She had a couple of "windows" (what benzo people call times when they seem like themselves again--that last time we had those, but longer for several hours, was 10/29 and 10/30).

But now things are bad again and we are losing hope. Again, I know this is a forum for Lyme and people here can't really help. I'm just posting this so people can learn from our grave mistake.

In case anyone is interested in other details, I'll post my intro post and post from today over at Benzobuddies.
Posted 12/14/2016 12:50 PM (GMT -5)
Here's the more detailed post from today over at Benzobuddies. Again, I regret the day we got started on this poison called Ativan. It's destroyed my sister and all of our lives. I never thought something from a "doctor" could be so horrific.



Hi-

Not sure anyone can help, but I thought I'd post an update on this w/d nightmare.

Here's my intro post for background: http://www.benzobuddies.org/forum/index.php?topic=167221.0 "Down Syndrome, Ativan, Side Effects, Withdrawal Nightmare"

Since that post, we managed to get down to 1/6 of the .5 Ativan pill.

Things gradually seemed to be getting better. She was no longer screaming at us all day to take her outside and kill her. She started waking up calmer and is able to stay calm until what we call the "witching hour" around 3-4 pm, which lasts until around 6/6:30. During that time, she's extremely agitated, anxious, desperate, screaming and yelling at us to take her outside and kill her. We're not sure where she got this idea about going in the backyard and dying--but she's been locked on it for a while. She's actually quite scary at that point, and we are afraid of getting attacked b/c this has happened in the past.

It settled down last week (I actually managed her on my own for a couple of days b/c my mother was at the hospital), but this week it has amped up and it's extremely scary. I've tried to diffuse the emotion a couple of times, by just getting her outside--usually once I take her out back, she stands for a few minutes on the patio and wants to come back in. But now that tactic is no longer an option b/c she refuses to put on shorts or pants.

Though we had a calm morning yesterday (actually had a "window" for a little bit, with her talking to us like her normal self), but today has already been a nightmare. She already got violent, broke a CD (she constantly listens to CDs b/c she has noise in her ear from the Lyme), then attacked my elderly father who was sitting next to her. I tried to stop her and got attacked as well.

Also, another problem we have is that since she is suicidally depressed, she resists food and water. Although we get enough food in her to keep her alive, we are struggling to get her Lyme treatment in. For that we have herbal drops that go in OJ (we already tried antibiotics and she had NO tolerance for them). We are supposed to do that 3x/day, but are only able to get it in once a day. So we are only at 1/3 the dose for Lyme treatment (which we have to maintain for 8 months in order to kill it completely). And we are also supposed to do detox waters, but she will only take one of those (5oz). The other water we get in is 4 oz. with homeopathic drops (for anxiety and depression) twice a day. So, her total fluid intake is about 21 oz. We think the only reason she is surviving such a low fluid intake is that she's willing to eat a lot of ice cream, probably around 20 oz, and we are kind of thinking that that operates like fluid once it's melted.

The other problem has to do with digestion. We had a major problem when she went off Trazodone (watery diarrhea) that we eventually resolved. But lately we've been having problems again and have to get about 3 bananas in a day (but it's still kind of soft and mushy--sorry for the details). At first we thought it was due to starting St. John's Wort, but we stopped that and still seem to have a problem. I guess my question is whether this could be due to withdrawal from the Ativan. Our added problem with this is that it's absolutely terrifying for her, which is another reason she often refuses food (so she won't go to the bathroom). And this is honestly NOT who my sister is---she used to be a high functioning person with Down Syndrome. She went to work on her own with public transportation, worked in the mailroom at an insurance company--she never had fears like this until we got involved with these horrible drugs.

Anyway, I guess that's where we are right now. We are actually quite desperate. We wanted to do this at home b/c we felt that going to a hospital would make things even worse--they would probably sedate her 24 hours a day and put her on anti-psychotics. And we are convinced that any additional drugs would be the end of her--she simply cannot handle pharmaceuticals. She had a bad reaction to Tamiflu (it blew out her gut and led to IBS), bad reactions to two antibiotics for Lyme, bad reaction to Trazodone (made her suicidally depressed), and a horrific reaction to Ativan (made her even more depressed, anxious, and violent)

We really don't know what to do. I think on my intro post, someone mentioned looking into the benzo wise doctors site--I think there was one up in North NJ, but we really don't even know how to get her in the car to get her there.

Not sure if there is a way out anymore. And I guess I'm kind of surprised by all of this b/c prior to Thanksgiving, it seemed like we were doing better. Mornings were calm and the "witching hour" was still manageable. I had managed to get her outside a couple of time. She even sat on the front porch with me to watch our parents raking leaves and seemed to enjoy getting some fresh air. I honestly thought we had turned a corner. And during the day, while she watched TV and listened to her CDs, she actually started to do a little dancing (she said the music made her feel like doing it) and looked a little cheerful, if only for a few minutes here or there. And then last week, when my mother was at the hospital for a couple of days (I guess a gall bladder attack), I was actually able to manage her myself, and it felt like her old self was more present and we had a few windows in the evening. Last week, I honestly thought we would get out of this, but now I'm really scared we aren't going to survive this.
Posted 12/14/2016 1:28 PM (GMT -5)
Laura, I'm so sorry your family is still struggling with the psych drug withdrawal.

"My mother spoke w/a psychiatrist who wasn't taking new patients, but listened to my sister's situation. His stance was basically that there must be something else going on with my sister b/c these were small doses, so going cold turkey off of Trazondone after taking 50 mg nightly shouldn't have caused a problem, and the low dose of Ativan shouldn't be causing such a problem. So, his basic message was that it must be something wrong with my sister b/c these meds are safe. "

I don't believe that - I was given information similar to the above...when my elderly father was dependent on Ativan and Zopiclone - in a matter of weeks this happened. It was denied by all medical professionals I spoke to...including the geriatric psychiatrist - except one Psych nurse who worked for the psychiatrist. She told me emphatically that elderly people should not be on zopiclone...ever.

You say it settled down last week...but bad again this week. It can be in cycles from the experience I had with my Dad. I remember at one point...he would have withdrawal every three days...like clockwork...

But, even knowing that...isn't much help to you. From what you're saying - someone could get hurt trying to help her...(you or your mother) and that is worrisome.
Did you look into the Valium substitution to wean her off the Ativan? Would you even be able to convince a Dr. to give her Valium to do this?

I'm so very sorry, Laura...you are a wonderful caregiver for your sister...I just wish I had something more to offer.
Posted 12/14/2016 2:04 PM (GMT -5)
Hi Laura, thank you for checking in, I've been thinking about you and your sister lately.

I can't remember how old your sister is, but does she have a monthly menopause cycle?

There have been cases where hormonal changes can become unbalanced in women with Lyme, and cause everything from deep depression to psychotic behavior. That itself can escalate or decrease in cycles.

Just wondering if the hormone relationship has been looked into.
Posted 12/15/2016 2:17 AM (GMT -5)
Laura as my twin has been in and out of psych hospitals six times before being properly diagnosed with lyme believe me it DOES get better. But it really is slow. Both my twin and my best friend have gone through some hellish times in psych drug withdrawal. Believe me when we first started through this journey my twin had been put on and taken off thirty psychiatric drugs within two years, among them benzos (klonopin and ativan), antipsychotics, mood stabilizers, and they even put her poor brain through electroconvulsive therapy and ketamine (which made her hallucinate horribly). At first we thought her brain was perhaps forever doomed and that the psychiatrists had messed it up beyond hope. She went through a horrid effexor withdrawal for months and her body started wasting and she kept getting electrical zapping in her brain and all sorts of strange symptoms and severe suicidality and hormone deficiencies. Time is what helped more than anything with withdrawal. Now that shes off all psych meds and on antibiotics, all her withdrawal symptoms are completely gone and the antibiotics have taken away her emotionality, suicidality, rage, mood swings, all within a few months. Please know that this will pass benzos are notoriously the SLOWEST drugs to get off of, extremely slow to get off of. Also ativan made me super super super sick when i took it four years ago i thought i was gna go psychotic it made my depression and anxiety so bad. There is a very talented llmd who collaborates a lot with dr crj in ny and she is a neurologist and psychiatrist and she specializes in lyme and tick borne illnesses specifically in the brain. According to her, psychiatric meds most often (note most often but there are exceptions) work poorly on lyme patients and often cause more problems than solutions. Buhner and her collaborator Dr. CRJ say the same thing as well. Please take it one day at a time, your sisters brain will bounce back but it needs a lot of time to overcome the tolerance.
Posted 12/17/2016 10:50 AM (GMT -5)
Girlie- Thanks so much for your thoughts. I totally agree with you on not buying into what these doctors say--it's just another reason to stay away from them. I think you are right about the withdrawal going in waves. It's hard for us to know whether we are going forward or backward on a daily basis (yesterday, she was calm in the morning, and today she is screaming at us to please get rid of her). It's really only after 3 months that we can look back and say that we have made progress. But it's really back and forth day to day--we kind of have to look for overall patterns. Right now we are just in survival mode, trying to get through the day. And trying to keep my sister and us from getting hurt. And trying to keep myself and parents alive (all of us have health problems, and the stress is honestly killing us).

On the valium substitution, right now that's not even a possibility-- we don't have a doctor, and can't get my sister out the door. Right now, we are just thinking that if we somehow survive the next three months, then we should be able to get out of this.


JulyMorning- Thanks for your thoughts on our situation. My sister is 40-years-old. I honestly don't know what's going on with her hormonally--I think the LLMD checked out her levels and she was not in menopause. Right now, it's not possible for us to look into anything beyond trying to get her through withdrawal from the poisonous Ativan.


JennyDancingFish- Thank you so much for sharing your twin and friend have been through with these horrible benzos. It really helps to know others have gotten through this and gotten their brains back. This has truly been the most terrifying experience of my life. The stress is relentless. I'm so terrified for my sister and my family. We are all hanging by a thread. My mother has already been to the hospital twice since we began the withdrawal process. And she had already lost a ton of weight from the stress of going through this Lyme nightmare with my sister. If anything happens to my mother, I honestly don't know how I can do this alone (my father only helps minimally). And what you said about time being what helps with withdrawal, well that's what we are hanging onto--we are just focused on surviving each day, with that hope that 3 months from now, we will be in a better place and she won't be suffering so much. And that's what everyone at benzobuddies says--time is ultimately what heals.

This has truly been the greatest mistake of our lives. What is so upsetting too is that by early July we finally figured out an herbal protocol, diet, and detox plan that was working--we knew that if we just stuck with it, we would get out of the Lyme nightmare. But now that we are caught up in the drug withdrawal nightmare, we can't even do it--we are only at 1/3 treatment dose. And now, when she gets strange symptoms, it's hard to know what's what. Though we tend to assume most new symptoms are from the withdrawal (kind of like new waves of symptoms as we keep gradually dropping the dose), we are never completely certain.
Posted 12/17/2016 12:42 PM (GMT -5)
Laura, I'm so very sorry for what you and your family are going through. I was addicted to Benzo's as well and used Benzobuddies for help in getting off of them as well. It's a good group.

I found that I couldn't just jump off that last bit - I think I was a bit lower in dosage, but it was the same issues. I was using trazodone for sleep, and could no longer sleep more than 3 hours a night- on or off of it. I managed to wean myself down to a very small amount, even though I wasn't sleeping, and then had to transition over to another drug (Ambien -has bnezo-like actions in the brain) for about 2 months, then I transitioned over to using tryptophan. Tryptophan is working great for me and no addiction to worry about.

I'm not suggesting that you just stop the Ativan, but maybe if you can find another drug that has similar actions, switch her to that, then find a natural alternative to switch her to from there? Just a thought. I sure wasn't able to just wean off of the first Benzo, but the switch to another made it possible for me to come off of it safely and then another switch later to get me off of the second drug.

No matter what you choose to do, know that we think of you and your sister and mom frequently and welcome you here to help release some tension and to get some frustration off your chest. We want to help provide some support for you and your sister as we can.

((((((((((HUGS!!!))))))))))
Posted 12/17/2016 1:44 PM (GMT -5)
Laura - I understand about looking back - you see some improvements...but not day to day.

That is what makes it so difficult. My Dad would have regress...and I would be confused as to what to do to help him...stay the course...or let him have a dose of the benzo...so he would feel better.

In the end...he did slowly get better over time and was weaned off ..but then relapsed...I truly believe that he was given benzos in the care home...which put him back to having withdrawal symptoms. I do know of one time it happened...when he was scheduled for a CT scan...they gave hime one. and that's all it takes.
My father was never agitated/worried about scans...so no reason to give him one...

I didn't realize that the nurses had them at their station...and were allowed to give them to patients...when they felt it was necessary.

So, I admire you for keeping her at home...and not taking her to a facility for her to be 'managed' by people who really don't understand. I just hope the rest of your family's health doesn't suffer too much...

(((hugs)))
Posted 4/11/2017 8:05 AM (GMT -5)
Well, it looks like it's over for us.

Things have gotten extremely bad within the past week or so, though we have been on the same dose of Ativan (less than 1/16) for over a month.

My sister is still suicidally depressed (she begs us every day to take her outside and kill her), and she's extremely anxious/terrified. (Please bear in mind, she used to be a highly functional and independent person with Down syndrome-she worked for an insurance company in the mailroom for 18 years, took public transportation to her job, and participated in a number of sports with Special Olympics). Now, she is for some reason terrified of going to the bathroom (#2), probably b/c of the occasional diarrhea she experienced with the withdrawal process. In the past few days, the violence has escalated and we can't manage her. She attacked me three times yesterday.

This morning she woke up screaming at us to open the door and take her outside and kill her. She hasn't stopped screaming. And she attacked us about three times already, and it took all three of us (my elderly father, mother, and me) to stop her.
So, this is what getting involved with Ativan has done to us. We tried to do the withdrawal on our own, but it's no longer manageable. So now, we feel we have no choice but to go to the hospital (she's too dangerous now--she tried to bite me three times in the past two days). I'm sure going to the hospital will be the end for my sister--I'm sure they will drug her, probably complicate the withdrawal process, and I doubt we will ever get her sweet, happy, cheerful self back. We can't leave her alone in the hospital, so it looks like my elderly mother and I will have to take shifts living at the hospital (my mother already has high blood pressure, and I wouldn't be surprised if the next step in this never-ending nightmare gives her a heart attack).

I know everyone else here is suffering with Lyme and there is really nothing anyone can do for us now. In prescribing Ativan, that LLMD ruined our lives--we now know it was contraindicated for someone in my sister's condition and should never have been prescribed. I just hope everyone can learn from our mistake--we trusted our doctor and she destroyed us.
Posted 4/11/2017 9:44 AM (GMT -5)
I'm so so very sorry, Laura!! What a bad place to be in. My heart just breaks for you and your family. While I have not experienced this myself, I have experienced doctor incompetence on a lower level with my FIL when he was alive and had Alzheimer's at the end of his life. By the time I left the doctors office, there was no doubt how I felt about them and the treatment they gave to him.

We are still here for your support though, please don't forget that. I will pray for the best possible outcome for you and your family.
Posted 4/11/2017 10:06 AM (GMT -5)
Traveler-

Thanks so much for your support. The only help we've gotten since Lyme started was from this forum. Nobody else has helped us. They've only made things worse. The whole Down syndrome community has abandoned us (they've known her for 35 years). My sister has been so depressed and lonely. For a while she had been asking for mail, and we felt so bad that there was none, that we ended up sending her fake cards from her DS friends, their parents, and former coaches.

There have been more attacks since my initial post this morning--and she hasn't relented in screaming for us to open the door (since 7:30, now 11 am)
Posted 4/11/2017 10:22 AM (GMT -5)
I do hope that you can get her "settled" somewhere soon. I simply can't imagine what you and your family are going through - I"m so so very sorry!

It's always amazing to me that when it really gets hard, everyone in a person's life can leave. It's happened to me a few times now, and it never fails that I'm surprised that even (so-and-so) left, but they do. It's heartbreaking and I'm so very sorry that your family has had to deal with this. There simply is no excuse in my eyes.

I think that you and your family did the right thing by sending her those cards and notes - it's hard for me to understand and accept, how much harder for your sister?? Again, my deepest sympathies for all that you are going through, and my utmost admiration that you and your family stand so steadfastly beside your sister!! You are proof that there are good people in this world still!

As I said, please do still see us as support for you and your sister, if we can be of any help there. When Lyme enters a person's life, the rules all seem to change.

(((((((((((((((HUGS!!!!)))))))))))))))
Posted 4/11/2017 10:28 AM (GMT -5)
Oh my Laura, my heart breaks reading your post. How lucky your sister is to have you loving her.

I know this is horrible for you to watch and that tugs again at my heart.

Prayers being said for you and for the entire family.
Posted 4/11/2017 10:57 AM (GMT -5)
My so sorry for all you and your family are going through. You are in my prayers.
Posted 4/11/2017 1:48 PM (GMT -5)
Laura, I am so very sorry. I always think about you and your sister and wonder how it's been going, fearing your sister is not getting well like we all hoped, as I know we would have heard from you.

I wish there was a clinic with drs. experienced in at least dealing with easing a Down's syndrome person down from ativan without overmedicating in the other direction or traumatizing her.

21st century, could humanity still be so cruel?


I wish we could do more, feeling pretty helpless here. Your family is over due for a break, a little blessing. I'm going to pray that where ever you have to take her, they know what they are doing.
Posted 4/11/2017 8:06 PM (GMT -5)
Dear Ms Laura,

I will keep you, your sister, and your family in my prayers. Please believe dark time will end and it will pass. Please be strong for you, your sister, and your family.

Wishing things will be better for you, all, soon.
Posted 4/11/2017 8:45 PM (GMT -5)
OMG- I just got back from the hospital

This is turning into a horrific nightmare. The doctors completely dismissed what we (father, mother, me- who is a PhD. Clinical psychologist) said, which was that my sister had NO EMOTIONAL problems until we got involved with these psychotropic drugs.

The arrogant psychiatrist and staff told me "we are confident this is NOT withdrawal" b/c you don't get withdrawal for such a low dose.

They were misconstruing everything we said to make it seem like it wasn't the drugs, it was just my sister. They would NOT let us leave. They gave us something Visteral? and said it was NOT a psychotropic drug (b/c we said we did not want that), then someone slipped and said it was, so I Have to research this.

We were given no indication until it was TOO LATE that they would not let my sister leave---she is now involuntarily committed. We said we had to get her out of there b/c we need to continue her Lyme treatment. They told my mother she could stay over night (I WAS THERE, I HEARD IT), now they are telling us she has to go (I am home w/my father, my mother is franticly trying to stay. Okay, update, they are letting my mother stay, as long as my sister doesn't get out of control (as if my sister's mother would upset her--these people are INSANE). How dare they threaten to make a MR person's legal guardian leave. My sister cannot advocate for herself!!

They insisted it wasn't withdrawal, but then indicated they specialize in this and seemed to suggest they could handle the withdrawal and that the doctor would give the appropriate dose. I then realized we were being scammed, and that it was their intent to make her do a cold turkey withdrawal. We were absolutely panicked, my father raced home, grabbed our Ativan cuts, and we had to smuggle them in. We are hoping my mother will be able to give it to her tonight--otherwise, when she goes crazy, they'll just tell us she's psychotic and needs an anti-psychotic.

They arrogantly REFUSED to hear what we all said: that my sister had NO EMOTIONAL problems until we got involved w/these psychotropic drugs. The psychiatrist didn't understand ANYTHING we were saying. They are forcing us to have a Devel Disabled evaluation, which is fine, but then the guy said maybe she needs some behavior modification training, when we said over and over again, my sister was a high functioning, independent person w/Down Syndrome, that she held a part time job for 18 years and took public transportation by herself to her job.

And the staff were increasingly RUDE to me, b/c I was NOT believing what they said.

So, now tonight, I have to print out lots of information backing up our claims (side effects, info on withdrawal, etc). Oh, GOD what a freaking NIGHTMARE.

Then, the crazy psychiatrist asks me " how long has she had auditory hallucinations" and I said they are NOT hallucination, it's TINNITUS. It's from the Lyme.

Also, my parents are my sister's legal guardian, but they said that that doesn't apply to psychiatric treatment, so they apparently can override my parents wishes and do whatever they want to my MR sister who cannot advocate for herself. So, my father had to quickly call the lawyer to help us.

These people are the crazy ones!! I was taught this in one of my abnormal psych classes--there was a study that proved these psychiatrists were biased to see even NORMAL behavior as mental illness. I saw this today--he was misconstruing everything I said. And he took NO NOTES, so how is he to remembered our detailed sequence of events.

OMG, I can't believe what's happening, but I expected b/c I've seen the horror stories online--these doctors always say it wasn't the drug. Then they get a customer for life.
Posted 4/11/2017 8:54 PM (GMT -5)
I think our only hope is this special needs/DDD evaluation--we have to make our case that there is NO DOUBT this is from the drug. Ugh!! I'm so freaking outraged!!

Also, we let my sister bring her CD player w/headphones, which she wears to cover up the ears, but they wouldn't let her have it b/c it's a "danger" (she wears them all the time here and has NEVER tried to choke herself) . We had to race home get a battery operated radio/CD player w/out headphones. They had NO COMPASSION for the fact that she had noise in her ears.

Our biggest mistake was to describe her has "suicidally depressed" --we only meant this in that she's severely depressed and sometimes says she wants to die. They refused to listen to me, a Clinical psychologist, when I repeatedly said that she's like other severely depressed people who sometimes say they want to die, but make no attempt or plan. She's never attempted to hurt herself.

OMG, I'm so terrified. Some on this forum warned, that we will lose control and it's happening. They are NOT LISTENING to us.

I even made sure to mention that the LLMD (psychiatrist didn't know what that was) told us not to go to the hospital (initially, until she bailed when we had problems with Ativan she never warned us about) b/c they would just assume her symptoms meant she was crazy, instead of that she has Lyme--and I could see that ***** was trying to imply that when he referred to her tinnitus as "auditory hallucinations" Then he was grilling us for when her last psychiatric evaluation was. OMG, these *****s are so arrogant. It was the doctors and these drugs that got us into this nightmare in the first place
Posted 4/11/2017 9:13 PM (GMT -5)
What a nightmare!! I'm so so very sorry you all got caught up with uneducated people!

I have talked with a couple of Lyme patients that ended up in a Psych ward, and just from what they said they went through, I know it's no place for a Lyme patient!!

I hope your Dad got a hold of that lawyer and can get your sister back out of there, and quickly!! Know that many of us here will be praying (or whatever their choice of sending support) for you and your family. I so wish there was something WE could do to help out!!
Posted 4/11/2017 10:10 PM (GMT -5)
Thank you Traveler. Please pray for us.

I'm probably going to be up all night printing out info on the horrors of these drugs.

I think my main points will be that

1. my sister is genetically different
2. she has a documented history of not tolerating pharmaceuticals
3. there have been no studies on withdrawal from a low dose of Ativan that was started immediately after cold-turkey withdrawal from Trazodone in a patient with Lyme (so don't tell me this is NOT withdrawal from Ativan)


Oh, also, this arrogant psychiatrist quizzed us about the Ativan dose and basically tried to make us feel that we were in the WRONG for not taking it as prescribed (4times a day) and only taking it at night. DO you freaking realize the hell we would be in if she was on 4 times the dose!?!?!??

PLEASE PRAY FOR US---the people on this forum are the only ones who have helped
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