I need support dealing with a chronically ill 21 year old stubborn daughter who lives on the couch. I don't know how much to push, or what to do. Am I enabling her, or just being a good mom?
My daughter has been sick for 4 years. One year to get diagnosis. Positive (neuro) lyme, clinical babs and bart, viruses, even shingles. One year of orals and bad herxes. 8 months of IV rocephin and cipro and much improvement in symptoms. She continued on orals for awhile, then she quit because of side effects and she didn't think they were helping.
She is left with a 24/7 headache that has not gone away in 4 years at all. The pain level was much improved after only 2 weeks of IV's, but is still there, on average a 3 pain level compared to an average 7 pain level.
Gastroparesis, waxes and wanes. Can eat most of the time now. She does have flare ups and pain, but she had been on TPN at one time.
Urine Retention, candidate for interstem, but won't try it.
Insomnia, can't fall asleep even with the help of meds. Pain is a factor, habit of watching TV to fall asleep, and in my opinion poor sleep hygiene. She says nothing helps, so why bother.
Fatigue, too tired to exercise or go walking... Four Dr's have prescribed exercise!
Brain Fog, memory problems, math and numbers are OK, but reading comprehension and memory are horrible.
Stubborn, oh wait she was stubborn before! Here's the hard part, she in not a compliant patient. She did a great job taking care of a pic line and administering IV meds for 8 months, but hates to talk oral meds or supplements or shots.
I told her I was not taking her back to the LLMD if she wasn't going to follow Dr's orders... or she can pay.
Got to go! Thanks in advance!
Posts: 242 | From Mississippi | Registered: Oct 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
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I can't help too much, but I got Lyme when I was a young adult, and that description sounds exactly like me. It was bad!
I have gotten somewhat better with treatment, but I still would prefer to sit on the couch all day because I have no energy. And it is hard to go to bed at night. I completely understand her frustration.
I also tested positive for Lyme/babesia/bartonella, multiple other opportunistic infections.
I am just letting you know this about me so that you know that her suffering is real. If she was active before this, there is no reason why she would just sit around unless her body was forcing her to.
As for the exercise, I think it can be good if you can do it, but I have learned that for me, it is usually too much to ask. Especially when I was very very ill, it was impossible.
One thing that helps me is coffee. So when she gets up, you might want to have her start drinking a cup of coffee. It might at least get her off the couch for a few hours.
If it interferes with her sleep even more though, it might not be a good idea.
But for me, beyond the stimulating effect of caffeine, it make my blood vessels constrict, which helps pump the blood upwards to the brain, and I start to feel better.
So try the coffee. It helps me get a few things done, when nothing else will. For some reason, other caffeine products don't seem to help.
Another thing I am just now looking into is the fact that maybe I'm not getting into the deep stages of sleep, and that's why I'm so tired during the day.
A drug called Xyrem can help with this. It is the "date rape" drug, so it has a bad reputation, but for people with chronic fatigue, it can be a lifesaver. It helps them sleep DEEPLY so they wake up feeling refreshed. I am hoping to try it soon.
It isn't normal for someone so young to be so tired, and it took me awhile to realize that there are real causes behind this.
Lyme and co treatment will help, but if you can't get her to take antibiotics, at least try to perk her up, give her more energy, help her sleep better.....then maybe it will give her the boost she needs to focus on getting rid of the Lyme.
It is hard to stay on Lyme treatment when you feel THAT crappy. So anything that gives me enough energy to get through the day, I go for it.
Things like Provigil can help too, but I prefer coffee since it's cheap and legal and it works (try different brands, some work better than others. Some make me feel agitated, while others do nothing, while others provide good solid energy). It is VERY specific, which brands of coffee help me and which don't. Strange, I know.
Don't let her give up or make her think she just needs to be positive and exercise to get better. If she is anything like me, it is a real illness and you have to treat it as such to get better.
Good luck! I know how hard it is.
Posts: 4590 | From Midwest | Registered: Jun 2008
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randibear
Honored Contributor (10K+ posts)
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what about a psychiatrist? i know it sounds bad, but it might help.
also, i hated exercise but when i got the heart news, i thought that's it.
is there a park nearby or something? even walking in walmart might help.
is she interesting in reading, computers?
i hate to see her waste her life.
maybe somebody else can help.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
ugh, I can't even imagine the pain, frustration and fear you must have. If it were me and my daughter, I'd probably seek out a counselor to help me deal with my own feelings and a plan that I could stick to to help my daughter. I imagine that your experience would be very similar to other people taking care of other ill family members in that regard. And, maybe she would benefit from hearing stories of other young people who have survived and thrived after illnesses.
If it weren't for my kids I'd be a lump on the couch and vascilate wildly between laying like that for days and then being more motivated for treatment. At 21 I was in school and a workaholic and never imagined myself being so accepting of myself not being that way. Looking back, I would never have been able to be as productive as I was with how I feel now. And, I have no desire to be that way, again, not only because it is unrealistic for me, but not what I want for my kids. I am already imagining and visualizing how my life will be when I'm well. One day your daughter will be better than now. What will she do then? Not that she needs to do anything about it, now, but just visualizing something, anything, may be of help to her (and you). I do Vision Boards, which are basically collages of pictures and words I cut out of catalogues or magazines to reflect something I want in my life. Maybe if you sat down and did one, your daughter might want to do one, too??
Treatments are tiring. Done the sleep hygeine thing over and over and that did nothing for me, too, so I understand her abandonment of it. She didn't even have a chance to get to know herself b/f she got sick, so this has all got to be awfully confusing for her (what's her and what's the illness). Try to find ways to get her to see herself beyond the illness (collages are great for that, too). Look through old picture books, videos, talk about topics other than the illness (a little, I'm usually too tired to talk too much).
Good luck and take care.
Posts: 252 | From New York | Registered: Apr 2010
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sutherngrl
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Hey Mommak! I hope you know who this is. I just sent you an email today and I live in your neighborhood....hint, hint!
I sure was hoping to hear that she was doing much better by now.
I can totally see your predicament. And I can totally see how easy it is for her to be discouraged. Sometimes you do just want to say "whats the point".
Sounds like she has become depressed. And being chronically ill sure has a way of making that happen. It is one of the most stressful things a person can endure.
First of all you are a great mom!!! It would be very hard to be the mother of a lyme patient.
My opinion is that she does need to get off the couch. Sounds like she is physically able to do so and she needs at least some amount of exercise, even if its just taking short walks everyday, or doing a couple of simple chores.
What is her vitamin D level? I ask because since getting mine up into the upper range of normal, my fatigue has improved somewhat. I still have it, but have more good days now. My doc says normal and optimal are two different things. Its best if it can be up around 70 or 80. I had to take prescription D to get mine up that high.
Another thing my doc has mentioned is re-conditioning the body. It is a very serious part of recovery. But it has to take place. And it won't happen on the sofa.
He says being ill for a long time is like being in a body cast. Even when the bacterial load has been reduced, the body has a long way to go to return to normal. It won't happen over night, more like a year or two.
Maybe it would do her good for us to get together again like we use to. It does help to be around other ppl that are going through the same thing. I would be glad to have lunch with you guys again soon or to just come over and talk.
I am sort of dealing with how to start to recondition my body right now. For I too have been living on the sofa for a very long time.
There is a fine line as to how much I can do before I realize I have overdone it and taken a step back. But then you just have to rest a day or two and start again. It sounds like she and I are both at about the same place.
My symptoms have improved, but then I take a step backwards and it really is so very discouraging. I can see why she has an attitude. Its like crawling out of a very deep dark hole.
Let me know if you guys want to get together sometimes. Not that I can do magic or anything; but I can at least relate.
posted
As a mom of sick kids...one who is a girl close in age to your daughter who has been sick for more than 3 years, my bet is that you're a good mom.
My girl sounds a lot like your daughter...over a year to diagnose tick-borne disease, dx'ed before that with viruses and treated with numerous antivirals, when Lyme was dx'ed, went through a few protocols, including IV rocephin for months. She was later dx'ed with babesia and treated for that too.
She takes a lot of supps and vitamins in addition to the abx, but it has been a rollercoaster ride. She can be OK for a few days, then crash for two weeks. It's a constant up and down, which is very frustrating.
My daughter also has insomnia, since the beginning of the illness, which doesn't help. She has tried many things too...herbal and prescription, but the thing that seems to help the most is trazadone, which she recently started.
The fact that your daughter got shingles indicates her immune system needs to be built up. There are a lot of things out there that address this. After all the reading I've done, I've come to the conclusion that Lyme and coinfections dismantle the immune system, and we need to build it back up.
Don't know much about gastroperisis, but my other kid has severe abdominal pain b/c of Lyme and Bart. A doc is helping her with meds for the pain that aren't narcotic. PM me if you want more details.
Don't know anything about interstem either and have never heard of it. But if your daughter is retaining urine, maybe she could drink cranberry juice instead of other beverages to avoid UTIs.
As far as the exercise, yes, it's a good thing, but how the heck can anyone expect a kid who has been so sick for years and in pain to do it?
The extent of the exercise my daughter gets is now doing things like wiping down a counter or loading the dishwasher or folding a load of laundry. This sounds minor, but compared to being bedridden, it's a huge step. Our kids have to walk before they can run.
IMO it is unrealistic for any physician to expect someone who has been so sick to just start exercising. One thing you might consider is requesting a physical therapy evaluation.
Cognitive issues are a huge part of Lyme. My kids have suffered tremendously from this. Born smart, and still smart, but now so affected by cognitive issues and so sick that they're homebound and tutored at home.
The fact that your daughter is stubborn isn't a bad thing! That trait could very well be the factor that drives her to seek good health.
Who can blame her at this point for being non-compliant? It sounds like she was very diligent for awhile, but then just said ***. It really sucks to be young and sick and to take the meds and do what the docs say and still be sick!
Please don't tell her you won't take her back to the LLMD. She has been already been through so much. As a mother, I understand your frustration, believe me. But we have to be 100% behind our kids and advocate on their behalf. If we don't, no one else will.
Keep an open dialogue with her. Ask her what she thinks of the LLMD (there are a few that leave something to be desired).
Encourage her to reach out to young people around her own age who are similarly afflicted. Counseling also might be good for her to vent her feelings and frustrations.
If you want more info about anything, PM me.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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sutherngrl
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Alana said "the fact that your daughter is stubborn isn't a bad thing"!
I agree! You pretty much gotta be stubborn to deal with LD. So thank goodness she is! It will most likely be the thing that pulls her through.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I'm sure that this must be very hard for both of you. One thing to keep in mind is that even when you know something is good for her (excercise etc.) you really can't make that decision for her and your longer term goal is to keep a good relationship going with her.
I know its frustrating to want to help and not be able to get her to do things that are good for her, but since she's pretty much an adult, it will probably be better to just be there for her without trying too hard to influence her. It will also take some of the stress off you if you don't feel that you are responsible for making her do things.
It's really hard to know when to push and when to step back for young adults that age, and of course illness complicates it. Some sort of support for you as a caregiver might be helpful -counseling for her if she'll go would be good, and if not, maybe counseling for you would help you to figure out how to deal with a difficult situation.
I know when I was at my sickest I was just grateful that my husband didn't ask me to do anything and just made sure I had good food and he took over the things that needed to be done (well mostly!). I know there was a time when I couldn't have done much, and even more of a problem, I didn't care. Lyme can really rob you of any motivation to do anything, to see anyone, and it can interfere with your ability to plan anything. I needed time to get physically better before I cared enough to do anything.
I wish you the best on this. (And, by the way, I sympathize with the frustrations of raising a stubborn child - my son, who is in his early twenties, and doesn't have lyme, is so stubborn I could tell you stories about that that are so funny (though they weren't at the time) they would have tears running down your cheeks - so I do get what its like to deal with a kid who's stubborn.)
Posts: 34 | From Saratoga Springs, NY | Registered: Jun 2008
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Hoosiers51
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I wouldn't necessarily assume she is depressed...she might just be really sick! Maybe it isn't her stubborness, maybe it is just the fact that she is very ill, and feels the meds she was on really weren't helping enough. (maybe she needed different meds for Lyme than the ones she was on, or maybe her condition is complicated by coinfections, other conditions, etc)
Have you asked her if she thinks she is depressed? What does she say?
Though I do think you should definitely explore depression very thoroughly as a cause.
But please be open to the fact that it might not be depression at all! When I was very sick, I just sat on the couch all day because I was too sick to do anything else!
Luckily now, I am well enough to be online, cook things now and then, and go places every once in awhile. Getting better slowly.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I agree with Hoosiers51........I am a wife a mom of 2and up until 9 months ago a busy RN....and I spent alot of time on the sofa......
this disease will do that............she may just be really sick..............the fatigue can be overwhelming compunded by the sleep problems...and to be honest to have social(even your mom) interaction is difficult......
sometimes its easier to be on your own...........than to have to converse...........
i honestly think unless you live it you dont know it............good luck
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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posted
My daughter is only 12 but she is a couch potato, too. It looks like she could do more than she does and she doesn't do everything the doctor tells her to. It is a struggle knowing how much to push her.
Her doctor wants her to eat meat and she is a dedicated vegetarian. (We are not.) She has tried so many things over the years and she still isn't better so she doesn't feel eating meat will help her either.
A few months ago, she was feeling better and did get up and do more, even getting together with friends. She also usually goes down the stairs sitting down and she walked down for a while. Now, probably because she is back on abx, she is back on the couch again.
Because she did do more for a while, I believe she would do more if she could. My husband thinks she could do it now if she wanted to.
We have been told she needs to exercise. I agree it would be best. But if she can't even walk down the stairs, how is she going to exercise?
I talk to a LL therapist about all of this, which helps. This therapist had Lyme herself and now counsels people with Lyme and their families. PM me if you want her name. I do it over the phone since I am too far from her.
Posts: 984 | From US | Registered: Dec 2007
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kgg
Frequent Contributor (1K+ posts)
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posted
You are a good mom to be asking this question. It is the same one I ask. I agree with jkmom. I have found that if he could, he would.
Like you daughter, my 22 yr old son has tried every treatment and no improvement lasts. Now the doc wants him to go gluten free. He has already tried that with another doctor and it did not make a bit of difference. So he wonders, why bother? He likes his wheat!
Last winter we found out that he has adrenal fatigue. And after all the health professionals kept telling him to exercise, his doc said with adrenal fatigue you can't exercise!! My son thought... "DUH!!"
Hang in there MOM. Consider yourself hugged. And give your daughter a hug from us lymies.
BTW, stubbornness turns into perseverance eventually. A good trait to have.
Best, Karen
Posts: 1685 | From Maine | Registered: Jun 2004
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posted
Thanks everyone for sure great words of advice! I knew I turned to the right place for support!
Sutherngrl: Great to hear from you. I got your email while writing that post! God works in mysterious ways! I will definately get in touch, and we should get together. I don't think anyone has ever checked her Vitamin D level. She doesn't get any from milk!
Hoosiers51: She doesn't like the taste or smell of coffee, but is addicted to sweet tea. I agree with you, I don't think the caffeine boost is the same! She has really cut back trying to limit sugars though.
LLMD gave her provigil but she didn't think it made any difference. Her sleep Dr who is a psychiatrist specializing in sleep disorders, wanted to try a stimulant in the daytime, but her heart dr said no, resting heart rate too high already, heart muscle out of shape.
I think this sleep dr is going very slowly through the drug list. It might help if she asks for a drug, we'll definately check into the "date rape" drug. High doses of meds that should put an elephant to sleep leave her awake, she just wants someone to knock her out. He said her sleep study was fine, but I still don't think she can be getting ENOUGH deep sleep. Maybe average is not enough!
She did have issues with fainting when rising, and the blood pressure changes in different positions. This was pretty much aleviated when she started pushing fluids. She was dehydrated and malnurished, no wonder!
kgg: She just went through adrenal testing (weight gain) and everything was in the normal range. Too bad she really liked the endocrinologist, and would probably have done anything he asked!
AlanaSuzanne: I never liked roller coasters much! The ups and downs does make this illness frustating! I have tried to hook my daughter up with people I have met with lyme, even some her age, but she never has tried. She was shy before and taking the first step is hard anyway.
I do need to have another talk about going to the LLMD with her. She has mentioned she wants to go back. It is a long trip that is hard on our family, and all her medical bills have us overextended already. I just get frustrated going and she thinks she can decide to just not take the meds.
Everyone else I would like to comment on your posts individually, but will try to cover some of the questions below. Thank you for your support and hugs!
I guess one reason I am so frustrated now is that she hasn't really made any progress in the last year. She actually thought she would go to community college, but has had trouble getting to class regularly. She enrolled in one online class, but never even logged on and gave it a try.
I know she is not happy just sitting on the couch, and perhaps is at a loss as to how to change things. She and I both have been to theraphy. Her therapist actually has been diagnosed with lyme also! She kept missing appointments and I don't think she was getting much out of it except a friend to talk to. (which was good but expensive)
I should be thankful she has one friend. It's mostly a one sided relationship though. She's always there for the girl when she needs a friend...
Depression is a curious word. I think she is apathetic now, just giving up. She has been on antidepressants almost since day one of illness, since some can help headaches. One former Dr thought something was wrong with her because she was so sick and was not depressed, maybe her illness was fueled by my attention? (guess he didn't notice she was taking antidepressants) He ordered a psych exam in the hospital and it was OK.
She's seen a psychiatrist who specializes in patients with chronic pain, not much help. The former pain management Dr sent her to a psychologist who specializes in chronic pain patients, my daughter thought relaxation techniques were no help when her pain was already at constant high levels. She even tried hypnosis. Social Security sent her to a few others before denying her claim.
She just stopped taking antidepressnats about a month ago. Neurologist is trying another drug because she had gained 50 lbs in a year. (That would make me depressed) I don't think she is depressed now, but I have seen moodiness and hopelessness before.
It is great to hear from others in the same boat. I had just left my psychiatrist's office when I posted the first post. I think she doesn't quite understand the whole picture and wants me to expect more of my daughter. I know if I push too much.. You know one step forward, three steps back. Or over do it one day and you pay for it a week!
I guess I will have to figure how to break down babysteps into even smaller increments!
Truthfully this is probably fueled by my healthy 15 year old receiving awards at the end of the school year and talking about her future... My 21 year old was very intelligent and driven before, even got academic scholarships based on tests she took before becoming ill. But ended up dropping out becuase she was too sick.
I don't want to grieve or accept the "death" of the child that once was, and give into the fear that she may never improve. This is what I think she has done! If I don't fight for her when she is down, who will!
Thanks for letting me vent and for your help and support! It means a lot!
Posts: 242 | From Mississippi | Registered: Oct 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If the psychiatrist is not ILADS-educated and completely Lyme Literate and also well versed in other tick-borne infections (especially bartonella), she can do more harm than good for your daughter. Some discussion about that here:
Deliberations of a psychiatrist who evaluates and possibly diagnoses Lyme and other tick-borne diseases of the mind, sharing case histories . . .
==============
Besides toxic infection, liver stress and damaged adrenal function, there are many other reasons someone may feel the need to be still. Vestibular damage is common with lyme. Your daughter may be having trouble with ears and that can affect every other function of the body.
Topic: To everyone with cardiac symptoms please read !
=================
Also, porphyria can cause psychiatric symptoms. Be sure to see the "Secondary Porphyria" link. Porphyria can be the result of the liver not being able to metabolize toxins.
PORPHYRIA Thread -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You mentioned weight gain. For lyme patients, that is most often directly related to the HPA axis damage.
This book is specific to lyme and other chronic stealth infections. The author discusses the endocrine connection and effects of STRESS on a person with such infections. You can read customer reviews and look inside the book at this link to its page at Amazon.
The Potbelly Syndrome: How Common Germs Cause Obesity, Diabetes, And Heart Disease (Paperback) - 2005
by Russell Farris and Per Marin, MD, PhD
Remember that lyme really messes up the HPA axis (Hypothalamus/pituitary/adrenal network). The pituitary has much to do with weight/growth. Mess up any part of the endocrine system and other parts suffer, too.
This book does not offer so much about what to do - other than that infections MUST be adequately treated - for as long as that takes.
. . . It seems likely that these bacterial species could serve as biological indicators of a developing overweight condition.
Of even greater interest, and the subject of future research, is the possibility that oral bacteria may participate in the pathology that leads to obesity. . . .
========================
ADRENAL SUPPORT --------------------
Cordyceps is recommend here:
This is included in Burrascano's Guidelines, but you may want to be able to refer to it separately, too:
Curcumin Prevents Some Stress-Related Changes (By CP Staff)
Excerpts:
A recently published study investigated the effects of curcumin, a constituent of the botanical turmeric, on changes in cognition and memory caused by stress. . . .
. . . In this new study, researchers investigated the effect of curcumin supplementation on stress-induced learning defects in mice. . . .
. . . In addition, curcumin reversed the stress-induced increase in the levels of serum corticosterone, the primary hormone secreted during the stress response. . . .
. . . The researchers concluded, ``Thus, curcumin may be an effective therapeutic for learning and memory disturbances as was seen within these stress models, and
its neuroprotective effect was mediated in part by normalizing the corticosterone response, resulting in down-regulating of the phosphorylated calcium/calmodulin kinase II and glutamate receptor levels.'' -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Someone above mentioned the issue of getting enough protein.
Protein helps our bodies make glutathione and that helps the liver detox . . . protein's amino acids help our brain, our hearts, our muscles, etc.
Taurine (found mostly in muscle meats) is vital, too. Vegetarians and vegans should consider supplementing taurine, as well as B-12 and L-Carnitine. -------------------
THE REQUIREMENTS OF PROTEIN & AMINO ACID DURING ACUTE & CHRONIC INFECTION . . .
- 20 pages
Anura V. Kurpad - Institute of Population Health & Clinical Research, Bangalore, India 129. Indian J Med Res 124, August 2006, pp 129-148.
Excerpt:
" . . . In general, the amount of EXTRA protein that would appear to be needed is of the order of 20-25 per cent of the recommended intake, for most infections. . . ."
- Full -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Seeing others in this film who make it (and those who don't) can instill the sense of importance in addressing infection - and help refresh commitment to the process. It took the park ranger over 3 years to really get better. So, that gives hope.
DVD is $35. and worth every penny. It explains a lot. During May, two for one. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- With most other matters, it's hard to know what is going on and if it's the wisdom of her body holding her back (and with at 24/7 headache, brain swelling could be a good reason to take it easy) . . .
however, I'm with you on it being very poor sleep hygiene to fall asleep with TV. You are the parents on this one. It's your TV, your house. I would physically remove the TV. Cut the circuit breaker to her room if needed. Maybe the whole family would like to put the TV in storage for a month.
I had the best quality of healing when I've been without a TV.
You could share some articles regarding the science of this. Or suggest she research it but you are clearly aware of the dangers. You keep her from other dangers, the TV should be no different.
Lights need to be out at a certain time or the brain simply cannot do what it needs to do for sleep.
ALL electronics need to be UNPLUGGED in the bedroom. No cell phones charging in the room . . . even alarm clocks should not be at the head of the bed but as far away as possible. Only RED lights should be on the alarm clock. Only RED night lights. Any light from outside should be kept out with heavy curtains, etc.
A sleep mask can help, too. If she can't sleep, anyway, soft music from across the room - and her imagination can be her entertainment. She can go anywhere in her mind, with her eyes closed. She can paint all sorts of pictures or design all sorts of fashions, textiles, architecture in her mind.
She can walk anywhere, engage in any sport or adventure, and generally put herself in any movie she wants. With her eyes closed, in the dark, snuggled in bed. She would still have a vast array of options.
Topic: NATURAL SLEEP - Links to articles & supplements
=================
Another thought: Has she tried a GLUTEN-FREE diet? That helps tremendously to reduce pain. Here, again, you are the mom. You buy the food. You could go gluten-free without her even realizing it. But, ultimately, it's also her responsibility.
Many LLMDs require their patients to be gluten-free. It's that important - at least to give it a good go of a couple months to see if it helps.
Although, forgive me as now I recall you saying she has Gastroparesis. Her Gastroparesis doctor probably already has her on a gluten-free diet.
===================
If she has troubles with tolerating pharmaceuticals, even with good liver support in place, there are some complementary protocols - and also RIFE machine to consider.
If she wants to give up there may be other protocols to consider. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
My 20 year old daughter has been suffering for years. I try everything to get her to eat regularly and take her meds. I guess all I have to add to the other folks is that my daughter has terrible irritabiltly.
Some people think she is stubborn but we have talked and it is just some weird thing that happens to her. She doesn't want to be lazy or *****y but she can't seem to control it.
I have learned to ignore the snappy attitude, continue to feed her and once in a while, when she has a clear day, she apologizes for her attitude.
For years I yelled and we fought and struggled. She barely passed high school, yet she is brilliant, 28 on the ACT. It wasn't until I found out I had Lyme that I got her tested and sure enough it was positive.
I regret being so short with her, dragging her to counselors and using antidepressants when now I know it was always the lyme. Please be patient.
My daughter has been under llmd care since Sept. 2009. She is now on rocephine and meprone. We have a long road ahead but I keep trying to remind her that she is in there and when she gets better this will all be over.
She will want to be happy, have friends, do things like other kids. She has tried college twice but the learning problems are just too much, especially reading and writing.
She now tries one class at a time and we hope to move it up to more soon. Hang in there.
Posts: 303 | From green bay, wi | Registered: Mar 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sometimes the irritability response to others may be that all vibration hurts. It literally HURTS to have someone talk at all, or move, or breathe. The skin holds lots of neuro cells and inflammation alone can make the skin hurt from the excess force of someone's voice. But our bones conduct sound and that can be just like a huge megaphone system to our ears.
For anyone with snarky behavior, it may help to sit down and break down exactly why - is it actually physical or is an attitude adjustment needed? It can be hard to know. Conversation is so important to the relationship.
I've never been a mom but I have seen kids who can be snarky just for its own sake. And, while I can't understand why anyone would be snarky on purpose, I have had to cut people off mid-sentence (or hang up on a phone call) as often just their voice hurts every fiber of my body.
I can be perceived as snarky when I'm just trying to prevent a seizure - or the nausea is taking over from the sensory overload. I'm not snarky TO someone but certainly can't connect in a harmonious fashion, either, and that can still feel like a slap in the face to whoever is on the other end of the conversation.
Please go up to the Tinnitus Thread and see all the links there about ears. In addition to vertigo and Hyperacusis, there is a condition called SCD (a hole or break in an inner ear bone) that makes this much worse. And most ear doctors don't even know about that.
And the same irritability issues can be from chemical sensitivities. The slightest stress can be too much for the brain. The porphyria thread covers that. -
[ 05-15-2010, 07:21 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Remember, " irritated" here is not about attitude. It's an actual irritation of the nerve fibers or the sense organs. Just like kerosene would irritate skin. It's not attitude, it's a nerve overload. -----------------------
" . . . Lyme patients can be easily irritated by anyone just walking into the same room even though eye contact is never made or words exchanged.
Low threshold exasperation in unexpected circumstances is not uncommon. . . ." -
[ 05-15-2010, 07:23 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Low vitamin d3 contributes to fatigue. Read on Dr. Hollick of the BU vitamin D clinic.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Chances are a young girl would get up if she felt well enough to do so. From the sound of it, she's not the problem. She does sound like she has psychiatric symptoms which are worsening the condition, but that's very common in Lyme Disease and associated infections.
Pushing likely won't help. If proper treatment either has not been established, or she simply isn't responding well to treatment, there isn't much you can do but keep searching for an answer. The answer won't be found "getting out" "going for a walk" or other cliche advice given to Lyme Patients.
Think back to who this girl was prior to infection, then compare and contrast. You'll likely find more understanding and compassion in the ongoing losses and symptoms she continues to endure.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
As far as the TV goes, she probably relies on the only thing that seems to help. Poor habit or not - with Lyme, sometimes the worst habits are the only ones which bring even minor relief.
Now, if another method can be found, great, but I wouldn't go changing her pattern without offering alternatives which actually work.
As far as sleep, give one of the Benzo's a shot. If nothing else works, that's the place to go. Better to have a chemical dependency and have some slight improvements in sleep and symptoms than to go without. Ativan is given in hospitals like candy. Try a low dose, see how she responds.
Also, reading a good book before sleep helps the body turn down, but turning down is nearly impossible with Lyme unless a sleep aid "that actually works" is given.
Otherwise, it's torture to put a Lyme patient in the dark and just expect them to fall into a "good" sleep pattern.
Changing patterns will take months, not minutes. Even one change at a time can be overwhelming, so she ought to choose when she's ready. I really wouldn't push. Doctors can recommend all the exercise they want, but if she's not well, it's best to side on caution and just trust her when she says so.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I'm 31, congenital lymie, but got tick souped up after a tick in '03. Been as sick as your daughter sounds for about 3yr, just coming out of being THAT fatigued, etc. in the last 6mo or so.
I also know what it's like to have a years-long headache. Mine developed sometime shortly after the tick and didn't get any real relief until I was first put on pain meds. Unfortunely that only lasted a couple of doses before my body got used to the amount of codeine.
Over the last 2yr of treatment my headache has gotten way better overall, but for awhile there (just before and prob. a year aor so after treatment), there seemed to be no stopping it. it would vary from a 3 or 4 on a good day to a 15 on a bad day. No kidding. I thought my brain was literally breaking.
Anyway. I wanted to say that I also had horrible probs geting to sleep, even with "elephant doses" as my doc would say. We tried several different meds, and I was like your daughter... I just wanted to be knocked out. Seriously. I wished I could be put in a coma or something. Too, I worried about if I ever needed surgery for some reason would THOSE meds even knock me out? I am still scared that they would only paralyze me, and not actually put me to sleep. *shudder*
What finally started tipping the scales toward getting to sleep without being up for 36-48 hr first, was Xanax combined with Trazadone. I had to take 1mg of Xanax along with 150mg of trazadone.
That was finallhy getting me to sleep within about 45min to an hour of taking it. Hallelulah!
That was last fall, and once I was able to really start catching up on SLEEP, the abx and all seemed to be able to do their job better and I've been getting better and better since about March (had to start treating babesia to see real improvement).
I'm still nowhere near as active as I need to be, but I agree with most people here... that's part and parcel of this disease. I'd been bedridden for over a year, then like your daughter (not bedridden, but zero energy or motivation) for another year or so.
I felt so useless and horrible (depression was also a huge part) and still do a lot of times, because while finally, finally, finally I am motivated and WANT to get up and do things and even have a little energy to start, I don't have enough to keep going.
In March I couldn't even fold a load of laundry at one sitting. A couple of weeks ago, I was able to keep laundry going all day, I just sat and read or watched tv unless I was folding/hanging.
When I first was dx'ed and started tx, I was real good about takng all my supplements on time (someone generally had to wake me up every 2hr if I was sleeping, though), but the last year I've basically given up on them. I barely have been able to 'keep the faith' enough to take my prescriptions.
My doc also talked about giving me a stimulant in the ams to help me wake back up. I've mostly been sleeping 14-16hrs and I guess he thinks I could (in theory) do with a little less now if I could just wake up. Alarms, phones, etc don't wake me. I just flat don't hear them after taking the xanax and traz.
I asked him how that would work since I don't hear the alarm to get up at a decent hour and he said somebody would have to wake me up and get me to take the stimulant... not wait until I woke up on my own.
He didn't prescribe it, though, because I have so many other scripts right now, and he's having issues w/ the med board. I think he'd rather have me see a GP to get the stimulant added in.
I worry about my heart, though, like your daughter. I've had elevated heart rate (and many other heart symptoms) since that tick bite. It scares me to think what that might do to the overall picture.
Don't have any other advice for you really, just to keep loving your daughter and keep encouraging her to stay in treatment. Sounds like the right combo of meds still eludes her. =(
I'm praying for her and hope to hear good news soon! =)
Smurfy
Posts: 155 | From Texas | Registered: Oct 2007
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posted
Thank you all for your replies and support! I will try to reply more later, but was so touched by the response I wanted to thank you!
I am also the mom of 3 healthy children (Thank God), and work full time. (Not really if you count all the time I miss work for Dr appts etc!) Anyway I stay busy but will find time soon to reply!
Posts: 242 | From Mississippi | Registered: Oct 2006
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