My 19 year old daughter is over the hump and on the home stretch with treatment! A few weeks ago I would have said fatigue was the worst remaining symptom, but now irritability is taking the lead!
At first we were glad she was well enough to complain! I think she slept most of a year and another one she was knocked out with meds. She just completed 8 months of IV meds.
Now she is causing everyone else to be grouchy also due to her constant bickering. I imagine it could have something to do with feeling she has no control over anything in her life, so she is trying to control us. Or is it "lyme rage" or bart, which we stopped the treatment for!
I told the dr and he gave her a rx to help with the irritability a couple of months ago, but she told him she couldn't tell a difference, so he said she could stop. It has definately gotten worse now!
Another thing is she thinks we are all in the wrong and does not see anything she does as wrong. It seems to take up most of her time, constantly taking offense to everything, and pointing out everything. If you try and point out her behavior, she tears up and says self-pitying remarks.
My other kids have tried to be understanding, and we have all dealt with chronic illness pretty good. I hate to feel like we have come so far and dare I say so close to the end and this ugly "monster" is coming out.
So far I have been able to be a friend and therapist to my daughter when needed. She has weathered this lyme storm with some anxiety, and hardly any depression. In fact one misguided dr was worried that she wasn't depressed enough having been so ill for so long. Go figure. He sent her to a psychiatrist and psychologist who specialized in pain issues. They were amazed at how she was doing with all she was going through.
But it is getting so frustrating now. I also worry what damage could have been done to her brain. Is this migratory, or permenant damage?
Thanks for the opporitunity to vent! Sorry I rambled! It did help, I think I will ask her to try going back on the med she didn't think helped.
Good night, I better go to bed, so I won't be grouchy tomorrow! LOL
MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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bettyg
Unregistered
posted
momma,
you think you are making progress and then this. it's lymerage, depression, and the disease.
yes, do suggest you talk to llmd and see about increasing dosage of what she was taking or something entirely different that will work with all her meds/supplements, etc.
have you thought about getting her to ll psychologist especially if the MOOD swings continue? best wishes.
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posted
My daughter is younger than yours, but she is doing the same thing right now. I am thinking it is part of the Lyme or a coinfection.
This symptom is the only one that has really improved in my daughter by treating her Lyme. It had disappeared but it seems to be popping back up.
I hope your daughter gets better soon. It is tough on everyone when one person acts that way.
Posts: 984 | From US | Registered: Dec 2007
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
OK MOM'S,
Course this COULD just be a teenager being a TEENAGER!...LOL....
But seriously....
This is a VERY COMMON occurance
after having beaten off the baddies that have made a physiological impact on the lyme patient.
Whenever I personally came off initial abx my next relapse was mostly all psychological in nature.
I read somewhere that this is a very common occurence with this disease and has happened to many of us.
I believe I got the litterature from AnnOhio...back when I lived there.
There is also a touch of PTSD that accompanies chronic illness. This is of course something most people don't come in contact with.
The symptoms are that the patient stays continuously "on guard". Suspicious of everyone
and not too happy with anyone who contradicts anything the patient believes to be the correct way to go about mostly anything.
You might bring up "chronic illness and PTSD" on a search here or in a general search and you should get the info you're looking for.
I don't know exactly what your children are taking to curb this type of behavior however...
lexapro was the medication that balanced me out with my issues of anxiety and depression...
unfortunately I need some ativan to take whenever I get breakthru "lyme rage" or whenever I am threatened....or perceive that I am being threatened.
This medication I don't believe is prescribed for children...
but at least, one of your kids is 18, so it might be helpful.
Paxil might be better...as my niece was put on this after a different chronic disease was diagnosed for her,
(or so I was told by her mother over my insistance that she get a lyme test...oh well we try!),
Of course not even our families are always receptive to this advice! She is now an ER traveling nurse and doing quite well.
In all instances it takes many many trys and failures to come up with the correct type of psychological remedy and the proper dose.
In one of these articles about medication experimentation,
it was noted that lymies are to get child like doses of these types of medications.
The reason being was that,they often have the REVERSE affect on lymies, for some reason when given at adult/or usually prescribed doses.
I don't believe it's a permanent dammage situation to the brain or hypocampus of the brain...
however it is very difficult to erradicate any infectious disease from within the brain once it gets a foothold,
due to the blood brain barrier.
Quite possibly also something else is involved in the brain, that as yet has not been identified.
Especially where TBI's are concerned. I personally had my first ever
"panic attack"
whenever the duck first increased the level of prozak he was prescribing for me....plus....
the duck did'nt know that I had anxiety issues to go along with the depression due to my active lyme infection(of which he did'nt believe in).
So yes, it's quite common and I'm very hopeful that it isn't permanent...
cuz the brain IS a very talented organ quite capable of healing itself at times.
The dang thing of it is....we have to get the causitive agents the heck out of there, for it to heal itself,
because if we don't the damn bugs keep reinfecting new cells, which grow our new message pathways
around the dammaged parts of previously more heavily infected brain parts and synapsies(spl).
The little guys that send messages to and from the bigger parts of the brain thru biochemical electrical impulses.
I have had successes with recovering a lot of my thinking and attitudes because I have worked on taxing my brain.
This putting pressure on the brain to act as it did prior to injury helps the brain realize that it needs to find other ways around the dammaged parts.
Repitition of these taxing things would be like those puzzles that are supposed to exercise our brains to keep them young.
Researchers are finding a whole lot of the returning Gulf War Vets that have head and brain
injuries due to the IED's they come in contact with, are having drammatic success at retraining
the dammaged portions of the brains that have left these kids paralyzed and malfunctioning
personality wise as well as speach and movement etc...However it does take time....and repitition....
READING THE NEWSPAPER IS NOT GOING TO DO IT!
You and your cheldren need to go beyond where they should be in school and MAKE their brains work harder....
so the brain will realize that it needs to grow more "wires and leads etc{synapse's}"
to the places of the brain that are being asked to perform normally.
A good way to test if your kids have some dammage in the area's that control emotional
behavior would be to possibly go backwards in time actually and see if there may be some
missing memories of when they might have learned to cope with people around them.
There may be "GAPS" in there memory "codeing" that went along with the years that they learned certain things besides coping behavior...
like reading levels...or math or a sports or even television programs of certain years...
Do you understand what I might be talking about?
Or do you need a little more definition of what I'm talking about? Because sometimes I don't explain myself to well on this medium.
The kids also have to be told over and over again that this is common and it's NOT REALLY THEM....
AND IT WILL GET BETTER....I can PROMISE!
You and your hubby and or other kids have to be patient as well,
realizing that these behavior patterns are NOT REALLY HER/HIM!
Anyway....I hope this helps ya....
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Yes Betty, I will definately talk to her llmd again. I try to be quiet and let her be the adult patient as much as I can now she's feeling better, but sometimes I have to speak up.
I would like to take her to a psychologist, probably our whole family! I thought they could help with the chronic illness thing, but have doubts about understanding lyme!
jkmom, this makes me believe it could be a co-infection. I think bart symptom lists shows irritability as a symptom. She started new oral abx when she stopped the IV abx.
She has had a main symptom of head pain on her occipital nerves. The abx have helped with that, but I wonder if the buggers are now in a different part of her brain. Also are the oral abx crossing the BBB?
Hey Tonyz! Thanks for posting! Yeah, we kind of skipped many of the teenage problems because my dd was too sick. Maybe we're making up for that now! Actually I have a 13 year old who is making sure we don't miss any of those "joys"!
I can't wait to search PTSD. I never thought of that... My mom was worried about me, now that dd is doing better, becuase she has seen PTSD hit caregivers after the fact. I can tell you the stress hormones are working!
Also even though my dd has neuro lyme and head pain was one of the worst symptoms, (and gastroparesis) she hasn't had too bad a time with the neurological and psychological symptoms yet. She had them, they just weren't the worst symptoms. I was wondering if they were just making the rounds.
Glad to hear from others who have had worsening of these type symptoms after treatment. Never would have guessed that one.
Funny you mention taxing the brain... Actually I guess she is trying to work into it gradually. Now she is taking one class at community college. She still does need accomodations though. She wanted to take more, but was afraid of relapse and of overdoing it. She had to withdraw from college last fall.
She is also helping me with office work, even accounting and clerical work. We've come a long way!!! I feel silly complaining of irritability after what we've been through.
I knew you guys would understand and thank you for all your comments!
Much love, MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Well here is my take on it. I too have been becoming more and more irritable lately and then tearing up and actually crying afterwards. My poor husband!!!
I think that after all this time of life basically being nothing but illness 24/7 how do you begin to live a normal life again?
You feel so much frustration which is probably the cause of the irratability; yet there is so much fear at least under the surface, of facing what real life is like, which brings out the tears.
I think there is so much psychology going on that I couldn't begin to scratch the surface; but I can so relate.
My LLMD told me that having a chronic illness is the most stressful thing in your life and I think that includes the part where you start to break away from it. After a while you only know how to be ill.
I think returning to normal will take at least 6 months to a year after you finally feel good. This is another thing my LLMD has mentioned.
I feel so much for your daughter, but also for the family. I know my poor husband doesn't know what to do with me; and I don't know what to do with me either.
Just give it time. You have come this far and you will make it some more. Think in terms of a year from now, your child will finally find "normalcy" again.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Sthrngirl, It has been said(written somewhere) that a year without symptoms is the gold standard for diagnosing the illnesses are eradicated.
However, as we all know....(except the IDSA)...these illnesses can and do often go into
hiding or an asymptomatic morphed form. Only to re-emerge due either to naturally occurring
lowered auto-immune system or hastened by the introduction of steroidal or non-steroidal anti
inflammation (immuno-suppresant) medications unilaterally prescribed for pain and or arthritis.
I believe, that after my bout with infantile parallysis, back in 54. The family,
ole country type of doctor at the time, shooting penicillin into my behind until the
fever broke and I could walk again pushed my infection(whatever it was-I suspect lyme fever)
into remission or a morphed form that lay dormant in me for years, with only minor and of course (supposedly unrelated) symptoms.
This one year time sequence was probably what your llmd was referring to.
Also, it's a little strange that you are still having crying jags....
I experienced these way EARLY ON with my most recent either re-infection or steroidal
interference in 97 just prior to diagnosis and for a short time(a year or so)after my first IV abx.
I hope it's something else for you....like just your woman type hormones...but it could be interference of the bugs in your thyroid gland system. The heck of it is. Very little shows up on blood tests whenever these boogers get into our thyroid system.
Good luck zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
lymie tonie z, I have only been in treatment for 4 months and ill for 2 and 1/2 years. Don't know where you get the one year of treatment from.
Also my LLMD happens to believe that 3 months symptom free off antibiotics and you are cured. He doesn't happen to think the buggers stay alive with proper treatment. If you become ill years later, then you were bitten again; or you did not recieve the proper treatment.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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