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» LymeNet Flash » Questions and Discussion » Medical Questions » looking for honest Lyme/ benzo feedback please

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Author Topic: looking for honest Lyme/ benzo feedback please
LSG Scott
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please tell the truth and give your benzo/Lyme feedback,

1.are you still sick after 1 or 2 plus years treatment and if so, are you on or off benzos?

2. anyone get over their Lyme and did not use benzos

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LSG Scott

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Keebler
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Some seem to manage benzodiazepine drugs okay. Some don't. Some really don't.

First, ask your LLMD about their thoughts on the subject and how to address the UNDERLYING reason for them.

My experience with several tries over the years: Benzos increased vertigo, dizziness, muscle weakness, bladder urgency and loss of bladder control.

They also increased depression and made it difficult to focus my vision. Increased fatigue tremendously - and that "hangover" effect without any prior party.

Mostly, I think even short term, low dose use damaged my EARS.

Tinnitus and HYPERACUSIS were never in my vocabulary until I tried Xanax. (Effexor also very clearly damaged my hearing and sent hyperasisis to the moon and it never improved, since 1994.)

Hyperacusis is pain, sensitivity to even normal sound.

Benzos are just not for me, at all, ever again.

But, I've found things that work so much better so I don't even miss them. Feel so much better without them.

However, if they help, with study, and if supplements with the same intent are not working for you, go with what helps as long as no side effects.

(Benzos can affect liver function so be extra vigilant about liver support and total load.)

If you let me know what you want these to do for you, I'll look through my links to find the supplement alternatives to first consider.

To get the full picture beforehand, you should also study various search results for a Google search of:

benzodiazepine+withdrawal
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Keebler
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What happens to EARS on BENZOS ?

http://www.hearinglosshelp.com/articles/benzodiazepines.htm

Beware of Benzodiazepines Nasty Time Bomb Ambushes the Unwary

May 2006 (updated June, 2006) by Neil Bauman, Ph.D.

==================================

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/24039

Topic: Looking for long term pain management

======================================

Adrenal support will help decrease anxiety:
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http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89790

Topic: NATURAL SLEEP - Links to articles & supplements

ADRENAL SUPPORT LINKS are included here.
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LSG Scott
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thanks Kebbler, but i'm off the benzos and doing fine Lyme wise too i'm just trying to see if benzos might be keeping some people here sick (they did me) so i'm hoping for some informational feedback and they can take from it what they will

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LSG Scott

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Anonymous2u
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Good topic, thanks for that info keebler. I am thinking that my lingering ear issues are withdrawal symptoms rather than herx related.

I was going off benzos (diazepam & lorazepam) and cymbalta because the benzos were no longer working and I never felt "normal" due to so many meds. I was also beginning treatment and experincing a really bad head herx from increasing the artemisinin dose. Along with the herx was tinnitus, vertigo, and balance problems. It was severe enough that I stopped the artemisin conmpletely but the ear issues have not subsided after 1.5 weeks.

I was also considering flagyl toxicity and went to a neurologist. I have had much relief from medical mj so he prescribed marinol which seems pretty good so far.

Another one I have had great results from is flexreril, it's helped so much with muscle spasticity for all but the worst neck pain. Does anyone know how flexeril works long term for dependence/tolerance?

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LSG Scott
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thanks for the feedback and it's very possible you were in benzo tolerance withdrawal, that's good info on the flexeril does it also help with dizzy? and sleep? if so that might be a good help to people getting off the benzos

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LSG Scott

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In19944
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i take 5 mg valium(smallest dose they make) and am sick but only a few months into treatment. i do know that lyme and heavy benzo withdrawal are equally terrible. what benzo were you on?
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Anonymous2u
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The flexeril is what I got when I told the Dr I was done with benzos and needed something else. It definately made going off the benzos easy and helped with muscle issues more than the benzos ever did. After 2 days on flexeril muscles that had been "locked on" for years released and did more for me than 6 months of pt before my lyme dx.

For other symptoms it helps with sleep, but not really anxiety.

I have no idea if it is ok to use long term, and there seems to be less effect over time. I am definately more interested in muscle relaxers now and would like to try skelaxin which my mother in law uses for sarcoidosis and recommended.

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MannaMe
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My husband weaned off the Lorazepam almost a year before we found out he had Lyme. He was taking it for anxiety and it did take the edge off. He was able to take the lowest therapeutic dose with no increases. He had no lasting side effects with this one.

Earlier his doctors had him on antidepressants to 'prevent' depression since it was taking so long for him to get better and they had no idea what was wrong! He had side effects from those meds.

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fourwinds
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One thing most doctors fail to do, when people start, having panic attacks is to check their

thyroid and all hormonal levels. (So supporting adrenals as Keebler mentioned is good advice.)

There are two different kinds of anxiety: GAD

(general anxiety disorder) and ENDOCRINE-based

anxiety (caused by an imbalance in the HPA.

Most doc's automatically think of the GAD and

give people benzo's. This can also be applicable to people who suddenly become "bi-polar" (it can actually be their thyroid/hormones)


I have taken .25 mg of Xanex for years on a PRN

basis. But find I am taking it daily with


Melatonin and a homeopathic aid to sleep.

I've had no problems with it but it is a low dosage.

Klonopin, OTOH, I took for years and had a

terrible time weaning off (and I was only on 1

mg/day). This was, though, before I became seriously ill and diagnosed with Lyme.

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LSG Scott
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manname so you are saying that,right now, he is off and done with benzos (i hope so) if not than you can't tell if there are any lasting side effects yet, not until you are off them completely for at least a few months, also any good benzo info search will clearly infom you that no dose of benzos should be taken for more than 6 weeks

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LSG Scott

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merrygirl
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I have taken lorazepam for long stretches. i have also never having an issue stopping cold turkey either. max i take 1mg tab a day, i dont think it causes any issues for me because i felt the same off. For me its a non issue
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LSG Scott
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and how long off merry girl can you stay off it ?

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LSG Scott

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MannaMe
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LSG Scott, My husband has been off benzo's for a year and 3 months now.

His doctor didn't like to have him taking it so long, but it was the only thing that helped (a little) without awful side effects. She only let him have the lowest possible dose per day and he only took 3/4 of that dose.

He is doing okay without it. Takes Relora, L theanine, and something else but I can't recall what it is right now....... to help with anxiety. Currently he isn't having so much anxiety like he used to.

He did have to wean off the Lorazepam slowly and did have withdrawal effects. Like his doctor said "You will feel like you are going crazy, but you aren't - its just the withdrawal from the drug."

He's done with benzo's and doesn't plan to ever go back on them.

BTW, he is doing lots of supporting supplements - has been for years. That's what we feel kept him from going down completely, or ending up on the 'Funny Farm'!!

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LSG Scott
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manname glad to hear it

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LSG Scott

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Healing in Santa Cruz
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I was taking Valium way before I knew I had Lyme. I had sinus surgery and after got so depressed which led me to find i was addicted.

It covered up my lyme and co symptoms and I went through hell getting off. Almost died.

Then all my Lyme symptoms reared their heads. I think the Benzo covered everything up.

I will never take that evil drug again and its still being given out. I was on very low dose.It was a nightmare for me.

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In19944
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Healing,
Absolutely. Benzo's are just like lyme. Everyones different. I had a terrible time getting off .5mg xanax/day.

I know people on 3-4 mg a day that have quit cold turkey without issues. Human body is so varied in it's tolerances.

Valium is the most mild of the benzo's too, besides ambien. Scary stuff.

I don't believe that any benzo would hinder any lyme recovery at small doses.

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nonna05
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Flexeril was great for muscle pain and a bit of help for sleep..BUT

If you have breathing problems at all ,not great to take before bed........It relaxes muscles ,thus slows breathing down ...I was On them for a year and I new when the Buggy-bug was kinda worse for whatever reason ,my breathing got worse and pain between shoulder blades.

I would up the ABX and it helped... All before Diagnosed.......Since steroid shots 2010 nothing is the same. I was able to function on meds and after done with trip to see kids or try to work , go off or down on meds and let body do it's thing.. Now only the Bug and friends are doing their thing.....

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phyl6648
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They have been a great medicine for me. I took xanax for 3 years everyday 1/4 mg three to four times a day for anxiety, before lyme dx. Then the anxiety got less and I would forget to take them before I knew it I wasn't taking any.

Then came lyme and after a few years the ENT I was seeing put me back on them due to vertigo I only took as needed .. After yrs of trying to figure out what was wrong with me I finally got a lyme dx and was given xanax 1/4 mg three to four times a day and I take them everyday , have for about 5 years.. Now, I probably won't ever be off them but all I can say is they have been a good drug for me.. and they help with my ear ringing.
I would love to be off all meds... but at my age and with lyme doubt if I ever will be. If it had not been for xanax when I first started abx and my anxiety went through the roof I probably wouldn't have made it..
Yes, we are all different and No, I do not want to be on this drug but the time hasn't come for me to even consider trying doing without it..

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gigimac
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I don't really understand the statement, benzo's are just like lyme?

Everyone is different.
I have taken flexeril, but everytime I take it, I have weird sensations and paralyzed dreams. It did not seem to relax my muscles at all.


My valium helps me alot, it really helps with the internal shaking sensation I get and the anxiety.

I do know that I will have to deal with the pain of tapering off one day ( I know it's not fun, cause I have done it before) but for now, it really helps.

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In19944
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gigi, I mispoke. Benzo withdrawal is very similar to Lyme. That's what I meant. Valium makes my tremors more tolerable.
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gigimac
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oh, ok that makes more sense, In19944! Yes, I agree benzo withdrawal can feel alot like lyme.
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Beagle
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Oh boy, I've been taking 2 adivan at night forever, and have added 2 more each afternoon due to severe immobilizing anxiety since I became dibilitated from TKR immediately followed by a multitude of TBI'S Taking over my body once the immune systme was compromised with botched surgery. I can't get through a day without it now. Sure sounds like more bad news here.

Beagle

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LSG Scott
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benzo withdrawls are just like Lyme and that's why if you can, get them out of the picture! because you can be on them ie(still taking them) and enter tolerance withdrawal,

now this can make getting better a very confusing ordeal as after some good and long Lyme Treatment, your Lyme load might be way down but without knowing it, you enter tolerance withdrawal, get some new or return of old symptoms and think oh-no my Lyme is getting worse, BUT if it's not the Lyme, well, now Your screwed because your Lyme doc knows nothing about how bad Benzos are, in fact he probably prescribed them to you, he will keep treating and you will stay sick, that is why it is better not haveing them in this confusing mix.

i asked for feedback to see how many people took them and got better,

because how many times have you heard a friend of friend type story about people having Lyme, had good Lyme treatment and there fine now, i believe these success storys exist, i just bet they didn't have benzos in the mix

i lived this horrible scenario above and when i finally found out i was in tolerance withdrawal i got off C/T (warning don't go cold turkey it can kill you!) i was lucky, i endured 6 months of withdrawal hell but i'm much better know,

so i just feel compelled to tell everybody to remember that you need to be your on heath advocate about everything, not just Lyme

god bless and enjoy the holidays guys

Scott

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LSG Scott

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dian
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great thoughts on this topic Scot and you too enjoy the holidays.

LINDA

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Jennifer70
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Im on flexeril, for joint pain....and .5 mg xanax for anxiety- both which i cut in half, and take before going to bed..otherwise Im up all night in pain and anxiety. I used to use it prn for anxiety attacks..but i notice I dont sleep well unless i take it at night.

I've been thinking about trying an alternative to help me get good rest, and calm me down at night, my anxiety is ok during the day...it's worse at night for some reason.

I have been treated almost a year. And I think I'm doing better than I have been previously. Im walking 40 min a day now and Im able to get through the day with much less pain.

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Psalm 119:50
My comfort in my suffering is this: Your promise preserves my life.

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Keebler
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In the ILADS Conference replay today,

Dr. N said that DHEA cut her anxiety instantly. You might check out this website and the books she recommends:

http://lisanagy.com

At Amazon, search for Jefferies book: SAFE USED OF HYDROCORTISONE
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LSG Scott
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yes Lyme gave me anxiety too and first 1.5 years of Lyme and benzos i too was much better but then over several months there after it all seemed to get bad again slowly, for what seemed no reason I thought it was the Lyme getting worse while i was in treatment but it wasn't, this can happen, but for me, it wasn't the Lyme, it was the same low dose benzo and my body becoming tolerant too it. See story above

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LSG Scott

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MannaMe
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You need to watch out with DHEA...... taking TOO much can cause anxiety!
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nonna05
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how do you know when it's tolerance withdrawl???

What tells you...I read up but I guess still a ditz about it.

The valium was for crying jags and nuscle spasms.
some days a couple some a few ,,there have been a few days with none
Was to sick to do anything but bathroom and didn't take anything. That means water and food also. about 8 time since this took on a mean and nasty turn.

But I hate saying that because every once in a while somethings improve for a bit.

So your saying you basically had a drug in you that kept you down like LD symptoms???? Otherwise you were actually well????

Reason for the Season...,Nonna

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nonna05
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also does this mean those on antidepressants have the same issue
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merrygirl
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I have been off benzos years at a time, most recenly while pregnant. But i have a lot of severe anxiety pre lyme so its important to have benzos available.

For me benzos, and various psych drugs have saved my life more than once. So for me they are a tool and sort of a bandaid until i get rid of lyme stuff.


So they can be invaluable to some.

I also am curious about withdawls that last 6 months. Is that even possible? I have had withdrawls before from other things like pain meds nd it didnt last 6 months.. please explain

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LSG Scott
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oh yes it is very possible and also very sad that more people don't realize the fire there playing with here is a great link that touches on it and some you tube horror stories

http://www.benzo.org.uk/ashpws.htm

http://youtu.be/Rgor1qyvqh0

http://youtu.be/AqjhJQZh8pk

http://youtu.be/dLx-i2g0uB8

http://youtu.be/95wMyWzHDFs

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LSG Scott

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LSG Scott
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Q. do those on antidepressants have the same issue??

A. no they don't down regulate the gaba receptors in your brain like benzos do

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LSG Scott

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LSG Scott
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do you actually think I'm making this stuff up ??
because believe me, i have much better things to do than that.

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LSG Scott

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desertlily
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My brain is so mushy right now, but I'm so glad I found this post, and thank you to whoever posted about the benzo buddies site (I looked, but couldn't find who wrote it). This is something that has been a concern for me for awhile, I wish my brain was clearer, I would explain more, but just wanted to say thanks! [Smile]

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Susan

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nonna05
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Don't think making up anything. Trying to understand how you knew/how it felt/ when you know////I keep asking Dr's about this kind of thing and just told need to be on it for now.

I don't want to hinder my road to wellness . So am trying to understand the FEELING"S/Symptom's of how you would know...


Did you just decided one day this stuff is the problem ,not the other??? It seems like there needed to be an event of some kind or lack there of....

My brother went of meds, including bensos, cold turkey and it almost killed him then.. He did just recently die at 52 with a lot of similar symptoms....couldn't pay and get to doctor. When he could at beginning got run around. Then thought had to just fight it out naturally.

Thus my interest is most sincere. Just not grasping how you figured it out, what you felt, and what was process from there... Also did any MD help?? Thank you, Nonna

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LSG Scott
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hey Nonna first i want to say i'm sorry for the loss of your brother,

i figured it was the benzos from people like me telling me about them and when i complained about my derealization getting worse someone told me it was a well known benzo withdrawal symptom, it also was a symptom that came on after benzo use,

((( wow checkout a post from this benzo ignorant fool, me!,from back in May of 2010
looking back it speaks volumes and has tolerance withdrawal written all over it,

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/94629?#000000

if i only knew then, reading this post,i just had a wow moment, it could have been the wake up call i needed but no, they who responded were as benzo foolish as me at the time, so i suffered with that confusion for another 10 more months )))


finally armed with some benzo info, i did a lot of self awareness and noticed that if i upped my benzos dose,
i felt so much better and the d/real stuff went away,

that told me i was clearly in tolerance w/d

and after seeing/learning how bad they are for you and your brain i didn't want to just up and up the dose on them to feel better, i knew this would be a brick wall i would keep running into over and over again, so i got off them, and it was real tough but i'm glad i did,
i don't feel like i might not make it anymore,and now i don't have to worry what's what anymore.

just to remind you, doing cold turkey can be very very dangerous. good luck

--------------------
LSG Scott

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jwall
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Benzos were the worst thing that ever happened to me...and I was only on a baby dose for 3 weeks! I tried to come off cold turkey b/c that is what my Dr. told me to do and I just about died. I definitely was sick right before going on benzos (with Lyme, didn't know it), but my list of symptoms were ear pain, stiff neck, tingling/burning in my spine, and my right leg went weak.

After using klonopin for 3 weeks and coming off quickly, I had severe and constant muscle twitching, derealization (so bad, it gave me panic attacks), depersonalization (I would look in the mirror and not think the person looking back was me - horrific!), SEVERE pain in my brain and spine, severe all over body pain, severe hyperacusis and tinnitus, severe crying spells and mood swings, major balance problems, severe ataxia, the list goes on and on. Notice how I always say 'severe.'

For me, it made everything SO much worse. I know now I had lyme with the stiff neck and confusion, etc., but those symptoms were a walk in the park compared to the withdrawal I felt from klonopin.

After 3 years of being off, I STILL have major issues and am getting worried I have permanent damage. Most of my severe symptoms have lessened in intensity though over time. I did just come off neurontin though which my LLMD put me on b/c he would not treat me otherwise...and I think neurontin acts similarly to klonopin.

I felt that neurontin was keeping me sick, so I decided to come off (which was not easy, but MUCH easier than klonopin) and I'm determined to give myself 1 year without any antiseizure drugs!

I have been in lyme treatment for 16 months, 10 months on IV. I am getting better, but very far from being healthy normal person.

The hard part is I'm in so much pain everyday. It is hard to live with.

I try to warn people all the time of benzo use b/c so many LLMDs put their patients on this drug b/c it does help at first. I truly believe Lyme doctors don't understand the connection b/w benzo tolerance withdrawal and lyme symptoms.

You're right, it does cause a lot of confusion.

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phyl6648
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Gee, so confusing .. Benzo's are the only thing that has helped me. I do have GAD and benzo is what the doctor ordered. Have tried antidepressants but couldn't tolerate.

If the darn drug helps why even thing of going off.. At may age 69 I probably will be on them the rest of my life , good or bad that is the way it is..

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outerspace1226
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I think there is a few things here..If you are on benzo's, the important thing is to not increase whatever dosage you are at. Also, there is a difference between benzo's.

Xanax is out of your system in 3-4 hrs, valium can stay in for weeks. Klonopin is somewhere in between.

To get off of them, it takes a while of disciplined tapering. I was on Xanax for 3 years and weened off over the period of a yr and a half.

It's possible to get off but it's also necessary for some to take. I'd say if your on a benzo, get on a slow melting one that doesn't make you insane after it wears off. Valium would be the key one. In small disciplined doses. And never increase.

BTW..Ambien is a benzo as well.

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LSG Scott
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outerspace please go back up top of this tread and read Keeblers fisrt link about the ears in this thread,in fact, EVERYONE! here should read what Keebler found, it is a exellent very truthful tell it like it is link (good job Keebler as excpected) about benzos and you will see there is no good dose amount

in fact your instructions are an ideal way to set up tolerance withdraw, please don't take offense to this but with a little research you will find this to be true

--------------------
LSG Scott

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outerspace1226
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That article reiterates exactly what I said. The Ashton method(read at the bottom) is the recommended way to get off benzo's. Her method is VALIUM substitution for any xanax, klonopin, ativan addiction, then eventually nothing.

This article is also citing a person on 3mg of xanax/day. That is equivalent to 60 mg of valium. That is a LOT. Here is the conversion chart.

http://www.pharmer.org/forum/discussion-prescription-and-otc-meds/benzo-comparison-chart

I'm saying that it's a lot easier to titrate valium than any other benzo and it's also slower absorbing.

I'm saying this with experience because I have successfully come off benzo's and know what hell it can be. Valium tapering is the most successful method of quitting benzo's.

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LSG Scott
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ok sorry, i thought you were saying that benzos are fine long term as long as you never up your low dose, sorry for the confusion. I do still Have Lyme you know lol.

--------------------
LSG Scott

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phyl6648
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Been on the same about of xanax for over 5 years, never upped.. Tried one valium and it put me in lala land what a horrible feeling.. Klonopin was way to strong.. I take 1/4 mg xanax 4 times a day if needed.. Like I said I was on them once for about 3 years and didn't have any problems getting off .. Now if the time ever comes that I don't need them my body will tell me and I will slowly forget to take them and if that time never comes I am thankful I have the drug.. So few things help tolerate lyme. I am so proud of those of you that have been able to come off the darn things..
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gigimac
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I just want to add that while coming off of antidepressants is probably not as physically dangerous as benzos it is still unbelievably miserable.

Especially if you go cold turkey. My doctor never explained that to me. He just gave them to me as if I were asking for candy without any info. I was 16 at the time and thought it would help my social anxiety. I had a rude awakening when I just stopped taking Paxil.

It could be possible to decrease an antidepressant and begin feeling horrible while thinking it is lyme related.

Anyway just thought I would throw that out there.

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