posted
My 18yo daughter is scheduled to have a central line put in next week. We've been moving toward this day for about 4 months now.
With the onset of Lyme 3 years ago she began having very infrequent panic attacks. Also some anxiety and depression. Insomnia too .
She wants to begin IV because she is tired of being sick and nothing else has worked. Ever since we scheduled the surery and treatment begin date her anxiety is through the roof.
Her LLMD Paychiatrist who manages her sleep meds recently prescribed Valium to deal with the increased anxiety. She started with Klonopin but that made the anxiety worse. So she switched to the Valium.
It seemed to help for a few days, but now she is so anxious and sensitive. She is lashing out at everyone who loves her and is alienating us all. Dad, boyfriend, sister and Mom.
I know she is scared. I know she is insecure about her line and IV. But this behavior is totally new and unlike her.
I've been trying to research if it could be a med reaction, from Lyme or what?
Anyone else have any insight or experience with these symptoms?
We've bought plane tickets and rented hotels. All non-refundable, so we can't postpone. In this mental state though I wonder how wise it is to start treatment at this intensity.
Idea? Help!!!l
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Could she talk with another kid her age, who has Lyme and central line for reassurance and info? Either someone local or via LN/internet? It's normal to have fear about it, but this sounds much more extreme.
My instinct would be to go ahead, but with as much support from others who have gone through it/are going through it, and meds as needed. I'm not offering medical advice, of course.
Maybe her LLMD knows of other young patients she might talk to? Or post on LN or local yahoo group for kids to come forward to speak with her?
Posts: 3771 | From around | Registered: Mar 2008
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Carol in PA
Frequent Contributor (5K+ posts)
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posted
Is she already taking magnesium? Low magnesium can cause depression, anxiety, insomnia, panic attacks.
Perhaps kava would help, as she is so nervous and anxious about the upcoming surgery.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
what about a bit of Lithium Ortate sp? sorry
like through amazon, 5mg..
I try it once in a while, if Valium and kavance aren't helping..There's a Kavance pm, but I found I had trouble with the 5htp or tryptophan .
Lord I hope my brain returns soon...
Hope you get what I mean..
The idea of a support group for younger patients would be great....
maybe they could even start a under 20 spot here.
somebody may know of another site..
I really don't know where I'd be without this site. That's being older and supposed to have more tools to deal with thing's..
A few of those tools need mended/medicine/joy/health/a life up and out..
3 years treatment, and so young She's in my prayers
nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
holding off won't get this better ..
It is weird . but I have noticed that a few times some of those meds seemed to do opposite of what they were helping,,
or catch up with me much later in day..
also did she by any chance start Rifampin lately...?
It lowers the effectiveness of so many other drugs... you just have to adjust others ,
just a thought...not medical advice..duh!
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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nonna05
Frequent Contributor (1K+ posts)
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posted
holding off won't get this better ..
It is weird . but I have noticed that a few times some of those meds seemed to do opposite of what they were helping,,
or catch up with me much later in day..
also did she by any chance start Rifampin lately...?
It lowers the effectiveness of so many other drugs... you just have to adjust others ,
just a thought...not medical advice..duh!
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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linky123
Frequent Contributor (1K+ posts)
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posted
Be very careful with benzos; they can be very addicting. Valium can cause severe depression in some.
I tapered off 3mg of klonopin recently; it took me eight months, titrating one drop at a time. The sx I experienced while tapering were awful. Some go through protracted withdrawal that can last for years.
The doctor who prescribed them said they were safe. Not so. I still have terrible insomnia, tinnitus, muscle pain, and anxiety since tapering. It is all improving, but very slowly.
I now believe many of the symptoms I had with lyme were exacerbated by the benzos.
I would try to find other ways to deal with your daughter's anxiety.
www.benzobuddies.org.- you can see first hand what people go through coming off this stuff.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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linky123
Frequent Contributor (1K+ posts)
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posted
I forgot to mention that some anti-depressants can help anxiety without being so addictive.
Take care.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
Hi Lymemom. I take a low dose of Valium each day for vertigo, and it has not given me emotional or mood disturbance side effects. However, I will say that in 2008 when I first really started to get extremely ill from the lyme, I went into rages that were completely uncharacteristic of me. I would lash out at everyone and was violent at times, and I am probably one of the gentler people that I know. I also became very anxious very easily and I was pretty fearless before that point in my life. I literally became afraid to leave my house at times.
It passed over time but it was very scary and I can say it wasn't me. I look back and I don't recognize that young woman. Lyme (as well as many coinfections) can absolutely be causing your daughter's emotional symptoms. I certainly hope she feels better soon. All the best, Jess.
Posts: 651 | From ct | Registered: Sep 2011
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posted
I agree with linky. Stay away from benzos if at all possible. I experienced the exact same thing as linky did when withdrawing from klonopin. It was horrific. I threw plates across the room and was in such severe pain. Very uncharacteristic of me. Those meds may be helfpful in the short-term, but in the long run can cause major problems.
Posts: 618 | From NC | Registered: Oct 2009
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posted
Hubby just got the lecture yesterday about benzos. He has had 4 ER visits within a week. Hubby's LLMD has told him in the past and we both tend to agree that benzo's are the least of his problems to be worrying about right now.
Anyway these meds are no fun but sometimes are necessary. Just need to be aware of the potential side effects and make dose changes either up or down slowly.
I would suggest taking lots of brain antioxidants such as vitamin C and pycnogenol (pine bark extract).
The meds do not make hubby sleepy -- except when the ER does stupid things like give him 8 mg of IV Ativan within 1 1/2 hours -- that happened a couple of months ago and he had problems waking up the next morning.
It is hard to tell the symptoms of benzo withdrawal from babesia if your daughter has that illness. Sweating and nausea and vomiting and dizziness are daily symptoms hubby has but can get worse after an ER visit if they overdo the IV Ativan. And headaches may or may not be part of the picture.
If hubby gets too much IV Ativan within a short period of time he can become angry and irritable for a short period of time.
Unfortunately seizure meds just do not work for hubby and IV Ativan is just about the only med that will control his dry heaves and vomiting and seizure like shaking and myocolonus and movement disorder symptoms when his brain is too inflamed or his hypoperfusion is acting up.
He had a tox screen on Tuesday during his ER visit that no one can explain. I had given him 2 mg of IV Ativan within a couple of hours before he got to the ER and the test did not detect any benzos. So we can't figure out if he is just metabolizing it super fast or if for some reason his liver is not converting the drug like it should be.
And mixing benzos with sleep meds or any other psychotropic drug can lead to potential issues. Any med that changes your brain chemistry can have unexpected interactions.
Yesterday hubby ended up getting IV Ativan, oral valium, IV versad, IV benadryl, IV phenergan and IV morphine at the ER. Needless to say today he is in bed trying to sleep off all those drugs. I skipped his IV Rocephin dose this morning to give his brain a chance to calm down. For him for some reason this time around on IV's his zithromax at night puts him to sleep but the rocephin just creates more brain issues.
Sorry your daughter is worried about the IV but really it is not that big of a deal once you get used to the idea.
Hubby tried klonipin once or twice in the past but it was just too strong for him and caused too many mood issues.
Good luck with the IV.
Bea Seibert
P.S. Noona makes a good point about rifampin. After hubby got the strange tox screen results his LLMD suggested stopping his rifampin for now -- he had already cut it from 300 mg to 150 mg recently. But the IV Ativan still was not effective yesterday so I don't think that it was a med interaction in his case.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
It depends how much valium she's on. If it's 5-10 mg/day. I doubt benzo's have anything to do with her behavior.
Benzo's are necessary for some with seizures. Some still have to function and cannot risk a seizure while driving or working. Valium is the slowest metabolizing one too, with the least rebound anxiety.
Link, that is a massive amount of klonopin. I think the danger of benzo's lie in larger doses. Even half that would put anyone down and cause major addiction and mental issues.
I think LymeMom's daughter prob just wants to be a teenage girl without the illness and baggage that lyme brings.
Rage/anxiety is normal. Please do whatever you can to make sure she goes through with this and gets the IV..She'll thank you someday.
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
The md that helped me taper off klonopin usually puts his pts on an equivalent amount of valium to taper.
Valium has a longer half life, so helps ease withdrawal in some. I became so depressed on valium I was non-functional. Couldn't eat, drink or sleep and got scary thin.
Ended up in the ER needing IVs to rehydrate.
I corresponded with several people on the benzo forum who had similar experiences with valium.
You don't have to take 3mg to be addicted to klonopin. This drug is so insidious, you can get hooked on much less.
Also worth mentioning, benzo-wise doctors are just as hard (if not harder) to find as a good llmd. Had to go out-of-state to find someone willing to help me.
Just like lyme, the medical community is just as willfully ignorant about benzo use.
Yes, benzos are useful for some situations, but they are way over-prescribed in most cases.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
I'm so sorry you guys are going through this so close to leaving, my gut tells me "droid" is right. This is a very stressful time for all of you. Teenagers even without all this stress are sometimes completely out of control.
BUT, you're her mom, if everything feels wrong, trust your gut.
Sending love and prayers for all of you! Call anytime.
<3
Posts: 219 | From pacific nw | Registered: Jun 2009
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posted
Thank you everyone for the support and thoughtful feedback. I really appreciate it.
Many good ideas. The benzo is only short term. The plan is to give her whatever she needs to be in a good place both physically and emotionally.
It was a difficult decision to put her on them. She is in counseling, has a good LLMD to manage the psych issues and her LLMD in DC is top-notch. Her life has been really difficult for the past 3 years.
The anxiety is new. It's scary. But I can also understand where it's coming from. She is stuck. Has been for 3 years. All of her friends are going off to their first year of college and she is stuck in bed. The only chance she has for a life is This Silver Bullett. She's pinning all of her hopes of getting a full life on this treatment.
But jeez it's hard! Scary too! Praying that once the surgery is over and she's got a routine with the IV that this anxiety will be a thing of the past. That the treatment will put her on the road to recovery.
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
lymemom, it is completely understandable why your daughter is so upset and anxious. I cannot imagine being a teenager with this illness, it is bad enough as a grown woman. Please keep us posted on your daughter's progress, and let her know she is free to message me at anytime. I have dealt with some major anxiety and depression since getting really sick, stuff I never had when I was healthy, and if she needs to talk to someone to know she isnt alone, I would be more than willing to do so.
All the best to you. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Hey just ran across this on Lyme ass. of Penn
posted
Still agree with linky. I was a on a baby dose of medicine - ativan first for just ONE week baby dose and then swithced to klonopin baby dose for just THREE weeks.
Withdrawal was severe for me and extremely painful. It has lasted 3 years now. I am sick with Lyme, but benzos caused way more issues/symptoms than the Lyme ever did. My muscle twitches still bother me to this day and this was NOT a Lyme symptom to begin with for me. Same with severe muscle stiffness. It all depends on who you are, your body chemistry, how YOUR body reacts to these meds.
She is a young girl. She may be sensitive to the se meds like I was. I believe there is no need for benzos and if the anxiety is NEW, there is a very good chance it is rebound anxiety from the meds.
I became severly depressed on these meds too. They are CNS depressants. Everything became BLAH for me. I cried for days and days on these meds and could not figure out what happened. it was the medicine altering my brain chemistry.
I feel very passionate about this because I know I went through and I feel like people think these meds can do no harm, but the reality is they can be extremely life altering. Not for everyone, but for a percentage.
Even the pamphlet that comes with the benzos says "NOT TO BE TAKEN LONG TERM" my brain was reliant on it after one month.
I'm pretty sure I have the same LLMD in DC as your daughter. I have been through the whole IV protocol and was on it for 10 months. I was terribly ill the entire time. I refused the benzos when they were suggested and I managed to get through.
I am starting to feel MUCH better lately and I can say I'm so relieved I don't have to worry about weaning or withdrawing from any of those meds!!!
LDN has been WAY more effective for this illness than any benzo or neurontin. It increases endorphins in the brain, creates a happier mood, boosts the immune system, and has helped me become a more social person again. It has helped with my pain.
Perhaps you should look into LDN for your daughter instead.
Posts: 618 | From NC | Registered: Oct 2009
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posted
That's true with LDN. Start at 1 mg and then move up very slowly to 4.5 mg. I had trouble sleeping for a few days and once I stabilized on a dose, I slept just fine.
I feel like how I used to feel when I was younger and much more social. I wanted to be around people and enjoyed going out. Probably also because I'm not in nearly as much pain.
I'm really sorry your daughter is going through this,especially while other girls are going off to college. I can imagine what she must be feeling.
I am doing better with the DC Dr. and started getting even better when I added another local integrative Dr.
Posts: 618 | From NC | Registered: Oct 2009
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i found this thread in a search on "daughters and lyme" cuz i am going thru something with my 28yo daughter who has had lyme her whole life(imo-altho she and docs said she was fine after 2 years tx when she was 10)
i cant speak to the meds you are dealing with
but this behavior:
"She is lashing out at everyone who loves her and is alienating us all. Dad, boyfriend, sister and Mom. "
unfortuneatly is very familiar to me and others in our family. she has 3 brothers and many others in her life she hs hurt...never in the name of lyme tho because she denies she has it.
counseling has not worked. when she asks for help she refuses every suggestion.
i hope your experience is short-lived and improves dramatically with tx...it seems this is something permanent with my daughter.
years ago i described the sx to dr jones and he said it was the lyme. many other issues she has i know others blame on lyme.
good luck to you...i would push for tx. i did that with all of mine...and most who see them would think they are doing well. but i see the residual stuff...and wonder how long this nightmare will go on.
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