posted
My Daughter has been hospitalized 4 times now for problems related to her Lyme disease.
According to her Lyme Dr., she has Lyme disease and Babesia.
A little about my daughter: She is in her mid 30's and raising my Granddaughter on her own. She doesn't have much help except for me and my husband. I live about 30 min. away from her. She is has been ill now for about 4 years.
She complains of losing her breath all of the time and it sure does appear that she is having difficulty breathing. The emergency room can find nothing wrong with her as she also complains of chest pain and has been to the ER countless times now.
She has some aches and pains, but her biggest complaint outside of the breathing and chest pain is that she feels brain damage in her head.
I have tried to be there for her along with my husband but we don't visit her much because she is always in some sort of distress and neither I or my husband can bare to stand to see her this way. We feel helpless. It breaks both of our hearts to see our little girl this way and she sees this as us not caring. She expresses to us that we are not on the same team and doesn't feel like we speak up for her when the ER won't admit her anymore.
Every time she was admitted, either me or my husband would visit her every day. The Dr.'s don't seem to understand the impact of the disease or how to help her.
So, our daughter calls us daily and she cries hysterically at times to no end. She says she is not depressed, but how can someone cry so much and not be depressed. She claims it is either neurological crying or because she is just scared and being tortured. She also states that she fears her daughter will have to grow up with either a sick mom or one that is going to die from this disease.
On top of the crying, my Daughter takes Percocet, Xanax, Klonopin, Benadryl, and some other medications that she says help take the edge of some of her suffering. My husband has said on many occasions that perhaps she needs to see a Psychiatrist and that she is withdrawling from these medications causing many of her symptoms. Our daughter claims that if she was withdrawling then taking the medication should fix her symptoms.
Whenever we try to suggest counseling or a Psychiatrist she gets so mad at both of us Stating that it's the disease. And her outbursts is called Lyme rage that she has no control over her behavior. We just find that a little hard to believe because she doesn't sound confused on the phone at all. We don't really go to her house often, but only because it's just more of what we hear on the phone and it is very upsetting for both of us.
I really want to hear from some people that can guide us into better helping out daughter. We really want to do everything we can to help her, but she insists that we appear distant and if we cared, we would be trying to help her get well and would visit her more.
There is nothing more that we can do to help her. Neither of us are doctors. She has been what her Lyme Dr. calls treatment resistant now. She has tried so many different ways to treat this and she is on her 3rd Lyme doctor.
We are both very concerned about the medication addiction.
With her permission, I joined and am writing this with her knowledge so not to go behind her back. It seems like many of you are suffering so badly and our hearts go out to all of you.
Be well and both my husband and I thank you in advance for any suggestions you may have for us.
Posts: 1 | From Florida | Registered: Aug 2011
| IP: Logged |
posted
I can tell you that Lyme rage is very real. I have never been aggressive, or depressed before Lyme. I definitely have both of these now though. I like to describe it as a similar phenomenon to rabies.
I know how hard it is to be a mom, and have Lyme. I am 35 and have a 13 year old and a 3 year old. I have had Lyme for 14 years, but was finally diagnosed in October. By the time I ways diagnosed, I was incredibly sick. Bedbound for a few months, and pretty much housebound for the last year and a half.
Lyme is very isolating. With the infection in your brain you loose touch with who you are. It creates anxiety, anger, confusion, depression, loneliness, etc. All I can say is try to be patient with her. If she freaks out on you, just ask her what you can do to help. Maybe take her daughter for her, or cook food, or come to her house and clean up. I. Think it makes all the difference if people are just willing to be with you when you are sick.
I have been seeing a therapist, and it has helped me a ton. It is relieving to just have a safe place to vent, or to cry. I had a friend sit with me, truly listen to everything I had to say about my disease, and she cried with me. This was someone I barely knew, but she cried for me and my pain. It meant a lot to me.
I have been reading an incredible book called" How to be Sick". It is not really about being sick, but more about how to be when you are sick. It has helped me change my perspective on what my illness has done in my life, and how to find enjoyment and peace amidst all my suffering.
I also take a natural antidepressant called Stabillium, and within 1 week, I was no longer having suicidal thoughts, and in another week I was not crying all day.
It is a very long, slow, painful recovery. She needs help, love, compassion, and support. This forum is a great place for that. Only another Lyme patient can REALLY understand. But you can still be there and give her the love that only a mother can give.
And one other thing, I think that emergency rooms and hospitals will not give her the help she needs, unfortunately. Maybe there is one somewhere, but I have heard story after story of people being turned away, criticized, yelled at, and even worse for mentioning that they have Lyme.
Have you watched Under Our Skin? It is a documentary about Lyme disease, and is on Netflix right now for instant watching. Be prepared, it is very sad, but very informing.
Good luck, she is lucky to have parents willing to ask the questions. Many here do not even have that.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
| IP: Logged |
posted
I agree, you should watch Under Our Skin. It is available on Netfilx.
Everything she says was the case with my own illness. She NEEDS you. If it hurts you to see her that way, imagine how bad it is for her! She needs your help. She doesn't know how to ask for it or what she needs.
My husband and children were there for me. My dad was there for me. My mother was not. Not only that she didn't believe me or make any effort to understand (I'm not comparing you to her, you are making a great effort to understand just by posting here). My mother had breast cancer. I did not ask her for a copy of her mammogram to make her prove she was having the problems she was claiming to have. You have to go by what she's saying.
It sounds like she needs to get to a better Lyme doctor. If she's just seeing a regular infectious disease doctor, that won't work. She needs a Lyme specialist (LLMD).
And the rage. It's hard. It's embarrassing. And you have no control over it. A pyschiatrist can't help, only treating the infection can. Or maybe he could help her with the emotional part ..... And the crying is related to the infection. I was never depressed through treatment, but cried a lot.
I am well today. It was a brutal fight and I was sick for years. Hang in there with her. I commend you for taking the time to try to understand her better.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
Sometimes when it is the hardest to be around someone is when they need you the most.
Sometimes when the crying starts, there is nothing better than a pair of arms around you from someone who loves you.
And sometimes the hardest part of being a mom to someone with this disease is that they need to talk it out and they need mom to listen, if at all possible. It is a tough disease on everyone involved.
It is very difficult to wrap the mind around. This disease changes us and we have no control. My heart goes out to her. Please support her with any means you can.
God bless
Posts: 33 | From PA | Registered: Jul 2011
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Don't suggest a psychiatrist or counseling again. That makes lyme patients very angry because many of us have been told by many doctors for years that our problems were psychiatric when they were really lyme disease.
So, suggesting these types of things will make a lyme patient go ballistic. It makes them think you don't believe they have a physical disease, lyme and babesiosis in her case.
Lyme disease infects the brain and can cause all manner of mental symptoms, imitating many psychiatric illnesses. But, the true cause of the problem is an infection with the lyme bacteria.
Babesiosis causes what is known as "air hunger" and can make the patient extremely afraid because they feel like they cannot get enough air. So, your daughter is a typical lyme patient for feeling the need to go to the ER. And, it is also typical that the ER treats the lyme patient as a psychiatric case and humiliates them and definitely does not treat them in any way.
As you can see, this is a terrible illness to have because you are often humiliated by the medical profession and not helped by them. So, a lyme patient can become very sensitive to being humiliated and not helped by family and friends.
Florida has very, very few good lyme doctors from what I hear. If you or your daughter are interested in who I believe is the best lyme doctor in Florida, just let me know.
Your daughter is really suffering and the key to getting her back to health is the very best lyme doctor she can afford. If you offer to help pay for a visit to a good lyme doctor, that will go far in your relationship with your daughter. It shows that you believe she has lyme and not a psychiatric problem, that you want to help her, and that you believe the best way to help her is to help her pay for excellent medical care for lyme disease.
Thank you for posting this and letting us explain what it is like to be a lyme patient. Also, I want to tell you that I got rid of lyme disease and babesiosis and another disease called bartonella. These are the 3 diseases the tick (which I never saw) gave me.
I got rid of these diseases by finally finding a lyme doctor who knew enough to cure me. It was my 3rd lyme doctor.
The doc is the key to getting rid of this absolutely horrendous disease. I can't stress that enough.
Many doctors treat lyme disease, but only a few know enough to get rid of it for a person.
If you are willing to read about lyme disease, the best document is the Dr. Burrascano Lyme Treatment Guidelines. It is found here:
It is a difficult read because it was written for doctors. You can take a look at pages 9-10 to see a list of lyme symptoms. You will see many psychiatric symptoms listed.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
I have it. Everything your daughter has emotionally I've been dealing with daily. My family doesn't know what to do so they back off. Unless one of them was to get this dreaded bug they can never understand the consequences.
You see the truth is "To know Lyme is to live Lyme". You honestly can't understand it if you don't have it. It affect's every thing that is normal to a regular person. And when it's in the brain and nervous system it's Game Over!
The brain doesn't function well. Neurotransmitters are affected. Inadequate hormones functioning, thyroid, inflamed brain syndrome. The list goes on and on with LD.
Your daughter will soon enough come to realize that doctors in the ER aren't trained in there schooling on how to treat LD and co-infections. It's just not in the medical books.
Personally I wouldn't be concern with addiction. If she needs Percocet, Xanax, Klonopin, Benadryl, and some other medications let her take it. Keep in mind that these are band-aids and she need them. When she finally gets her bacteria loads down, neurotoxins, and gets control over this disease she will need less and less of these type meds.
The panic, anxiety, over-emotional state of mind with this disease is horrific. Your just not right. It's hard to explain this feeling. I've been sick since 2006 and it wasn't until 2010 that I finally started leaving the house a bit to shop late night.
I'm still sick but better. Your daughter may have to follow a pulse antibiotic regime. She has to detox properly. Follow Dr B's guidelines and get her the supplements that she need's to help fight.
Read up on Dr. Robert C. Bransfield, MD on Lyme aggression, etc. here are some links:
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
| IP: Logged |
posted
Some very good advice has been given. One other thought I have is that you might try to go to a support group meeting once or twice, either with your daughter or by yourselves. Maybe that will help you understand the situation. Don't know where you are in FL and not all support groups are created equal, so it would be good to go to one that really is on top of this disease.
Since I don't know which group to recommend, you might start with phone calls to see which are still active and sound like they might be helpful to you, before traveling any distance.
Here is a list of support groups. May not be up to date.
posted
I will be 40 next month. I have 2 elementary age kids and a very supportive husband. I have been sick for 2 years. I was a stay at home mom before I got sick and still am. My symptoms are almost completely physical. Severe arthritis which means I can't drive, need help walking etc. My neuro symptoms are very minor. My parents live 40 min away. Even with all the help from my husband, one of my parents still comes to my house 5 days a week. They pick up my kids from school, clean house, do laundry, dishes, mow the lawn, all the things I can't do and the things my husband can't get to because he is working and taking care of me. They drive me to doctor appointments and watch my kids while I sit and get my IVs.
I'm not suggesting you can or should be doing all of these things for your daughter. And I don't want to sound like I'm judging you. This is a hard disease to deal with, for everyone, you, her and the grandchild. I cannot imagine how hard it is for you to be around her when she is raging. I just wanted to give a little insight into possible ways you could help if you choose to. I don't know how my family would be functioning right now without my parent's help.
Posts: 707 | From Colorado | Registered: Jul 2010
| IP: Logged |
posted
Good for you for coming here. You must really care about your daughter if you take the time to try to understand something that is straining your relationship.
I got sick at age 20. I had to quit my job and school, which led to me moving back in with my mother. (Every independent 20 year old's dream! No....)
When I first starting having symptoms my mother was concerned about me. She saw the physical manifestations of my illness and worried about its unknown cause.
Although my doctors could always see I was sick, they struggled to find WHY.
I would say it was when I was nearing 2 years of being ill that her doubt came in. (She has since said that she never doubted that I HAD been sick, but thought I was dwelling on an illness that had passed and that my symptoms were were caused by my mind believing I wasn't better.)
This is when she started telling me I needed to get a job. She was SO angry because I guess in her eyes I was wasting my life.
It wasn't long after that when she suggested to me that I get counseling (which she did offer to pay for) saying that maybe traumas from my past were the only real problem. Maybe I wasn't over some things.. maybe I was (unknowingly?) MAKING MYSELF SICK.
I can't describe how those words hurt me.
I couldn't walk out of the house. I couldn't BATHE myself. Some days I was lucky to be able to be able to prop my head up to watch tv. And forget reading a book, my arms were too weak to hold one!
So, how could someone think I was doing this to myself?
I didn't know it was possible to be THAT alone. I had unbearable physical pain, I was devastated about losing the life I wanted to be living.. and I was completely alone with it all.
So, that's where we WERE. It has now been 5.5 years since I first got sick(I'm doing MUCH better now.. and plan to improve more and more with time!)
Six months ago my mother tearfully apologized for how she treated me when I was first ill, and for not BELIEVING me all along.
How we got there? I think the biggest change for us was that I let her in.
I gave her literature on lyme. I had her go with me to all of my appointments with my llmd. I tried to help her understand.
Truth is you will NEVER understand being chronically ill unless you have been. Even more, you can't understand the special difficulties of lyme without having had it.
I think posting here is an excellent first step. Use the search feature to learn about specific things you are unable to understand.
If you can gain knowledge on the illness and hear her doctor (only a good LLMD!) talk about where she is at, then I think compassion for your daughter will follow.
Then if you can see in your daughter that she is truly doing EVERYTHING in her power to get well (llmd treatment, diet, detoxing, exercise, herbs, alternative therapies etc.), being around her when she isn't so easy to be around should be easier for you.
Good luck to you! I hope you both find what you need for every kind of healing!
(Sorry for length.. This was something that was close to my heart.)
Posts: 60 | From MO | Registered: Jul 2010
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
yes-i think it is so wonderful for you to come here
i've been here a long time and i don't remember that happeneing before
you have gotten some good advice-its hard for me to type cuz of arthrits but i will say a few things and email you my phone number
the book cure unknown really helped me and others understand and it helped me not believe i was crazy when so many said i was-it might help your daughter if she hasn't read it and it will help you understand
also you might want to at least skin over dr burrascanos guidelines
you say she is on 3rd lyme doc
all lyme docs tx a little differently cuz noone knows a for sure cure yet
i usually encourage ppl to stay with and llmd at least 3 yrs unless really awful things are happeneing
we are brought up to think 10 days of abx and we will be better
lyme is so much more complicated than that ans it often takes a llmd longer to figure out the patient . trial and error is used...and for now it is ok.
so maybe she needs to stick with an llmd longer.
but please...keep loving and supporting her. there is figting this disease and then there is the the lonliness when your friends and family and regular docs don't believe you are sick.
stay with her. love her and your grand child. bless you.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I hope you listen to everyone's advice and accept their help to find a good LLMD (Lyme Literate Medical Doctor) for your daughter. She will not have any chance of recovery if she is not being properly treated.
Babesia causes us to feel short of oxygen which is why your daughter is gasping for air. Babesia infects the red blood cells so this is a real issue, not psychiatric.
All of the infections can affect the brain. We break up our sentences on this forum so those of us with severe neuro problems can follow the train of thought better.
I have felt like I have dementia. Before treatment, I was easily confused and could not complete my thoughts or calculate anything. My IQ literally plummeted 40 points. I known of someone with a master's degree that could not read at a second grade level.
This is a vicious disease. I agree that your daughter needs you. Beside being there for moral support, it would be great if you could read up on lyme disease and make sure she gets to a good doctor. I recommend the book Cure Unknown by Pam Weintraub. This and the documentary Under Our Skin will open your eyes.
One more very important thing for you to know is that when she gets treatment her symptoms will worsen! All of her symptoms will be magnified as the pathogens die off and flood the body with toxins. It gets better but it takes time. They say treatment is a marathon, not a sprint.
You and your daughter are very fortunate to have found this site. The online lyme community literally saved my life.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
hello concerned mother, first let me tell you how amazing it is for you to try and understand your daughter's illness, especially since not many people do -and there's so much misinformation out there that you really have to be your own detective/teacher. you're daughter appreciates like nothing else that you are there for her--even though she may not be able to show it sometimes.
I feel so much for your daughter. I feel so lucky (on my good days)that i know what this disease does-- because for a while i felt like the way i acted and thought were completely under my control, therefore i felt tons of guilt and hatred for myself because i could never seem to get myself to be like everyone else, make myself the person i wanted to be. little did i know i had no control. my brain and nervous system were/is very very sick.
i didnt feel well so often, i would call my mom and cry and cry, i was in a constant state of anxiety and this uncomfortable cant sit still cant be productive. everything in my life was black or white. one extreme to the next. i had major paranoia people didnt like me and talked about me--this stopped me from going to class.
i was constantly tired, had headaches, my back hurt, my hands shook, i had no executive thinking (i went from A to B and when i got to C i would forget what A was.) a bad memory,acne,irritability, easily frustrated,dark circles under my eyes, a reactive irrational personality, i wanted to be isolated by myself, disappear-
i also, like your daughter,have this horrible rage,'episodes' i call them (especially right before my period!). its like this tension builds up in me and i have to release it somehow. I yell at people i cry inconsolably, im a scary helpless, anything could set me off- someone chewing, a person on tv, i tripped over a shoe. and the most recent--i got the wrong iced tea at the store. the screaming yelling physical and emotional abuse, when that is over the profound depression guilt hopelessness creeps in. its a horrible thing for anyone to experience. after these episodes im drained,almost like a seizure.
these rage episodes are despite the following psych meds-- zoloft lamictal namenda trazadone
i think when in this state --when something happens, your brain takes it in and it goes through all of these channels to analyze and put what happened into perspective and such and then you react. I feel like my with my lyme brain that crucial middle part is missing and my brain sees and reacts with no filter. almost like i
i believe all of the meds your daughter is taking are addictive. I recommend she see a Lyme Literate Neuro-psychiatrist. I'm seeing one in NJ who changed my life. he thinks its important to treat your psychiatric symptoms before treating lyme so you can clear your mind because lyme causes such a skewed perpective. i have an appointment for the end of the month to see a LLMD. I am excited to get my life back.
i apologize if this is a little scrambled, but my brain is still scrambled. if you have anything you would like to discuss in more detail, please message me.
your daughter should visit this site. I know for me coming here makes me understand that I'm not alone. I've actually printed out a couple of posts. people say the most inspiring things sometimes, i take those out when im feeling bad. I hope your daughter feels better soon. It's a tough road, but i do believe we'll get there.
Posts: 60 | From central nj | Registered: Feb 2011
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
It's the disease causing all the crying, the odd perspective on things, anger, etc....
I do and say things that I later look back on and wish I could erase...things I never really meant, just they popped out in the midst of me being upset about something. I hate it. But there's nothing I can do about it until this darn disease is treated sufficiently to get the bugs out of my brain.
Some things do help me though:
Counseling for anger management, and now for anxiety has proven to be beneficial if you find a good counselor.
Supportive Mom and Husband. I couldn't do this without their support. Even when my Mom desperately wants to do something to help me, I just say I need a shoulder and an ear, and she's usually more than willing to listen. This is very helpful because it helps me sort through the feelings and thoughts that are a big jumble in my head so that they aren't so overwhelming or confusing.
Adequate nutrition. Low blood sugar can make Lyme rage and other Lyme/coinfection-related emotional symptoms much, much worse. Eating protein-rich snacks every 2 hours between meals, and limiting sugar intake can be helpful for stabilizing blood sugar levels.
I hope this helps some... I commend you, like the others, for coming here to learn and understand as much as you can, that is wonderful - keep it up - keep coming back here for information and support, and encourage your daughter to come here too because she needs the support also.
Take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Ways to help your daughter and feel less helpless in the face of this terrible disease:
1. Learn about Lyme. Ask questions. Your daughter, in spite of multiple brain infections, has obviously educated herself about her illness. She describes her symptoms with incredible accuracy and knows they are due to her infections.
You need to understand this, as well. She does not need to be treated for her "addictions" or her attitude. She needs to be treated for her infections and neurotoxins.
2. Believe that she really is as sick as she says. She is actually sicker. We all have some degree of denial about how sick we really are.
(One of the reasons why there is almost no research on chronic Babesia is that the infected lab animals die of the acute infection. When your daughter says she is scared she is going to die, she is not exaggerating. I spent an entire year thinking I was dying. I was treating for Lyme and Babesia. Since nobody believed me, I sat around by myself reading obituaries. I was 39.)
3. Tell her to join Lymenet and vent here! We understand! We would also like to know how her treatment is going.
"Treatment resistance" is doctor-speak for "I don't know what to do with you anymore." It is BS. These infections are not showing signs of antibiotic resistance. They are just very, very difficult to treat. She MUST have an experienced Lyme doc who has gotten many patients well.
Most of us require years of multiple antibiotics and supportive therapies. I promise you she has more than Lyme and Babesia. The vast majority of us also have Bartonella, another common tick-borne infection.
We also have opportunistic infections. When the immune system and the blood-brain barrier are compromised, common infections move into our brains and thrive. Some of these may require treatment.
4. Respect her as an intelligent woman and mother. We are infantalized and dismissed by the medical system. It is infuriating and terrifying, especially when you are in the ER. (It is also sexist.) Please stick up for her.
And find a way to comfort her when she says she's scared that her daughter will only know her as a sick mom. ALL of the moms on Lymenet feel that way. They want to participate in their kids' lives, not watch from the couch.
We are fun, social, intelligent, educated people who are sidetracked by illness. We want to be seen that way, not as the attention-seeking addicts and liars that the culture would like to characterize us as. That thinking is arrogant and insulting. We are sick of it.
5. Do all of the things you would do for a sick friend or family member: childcare, grocery shopping and errands, cleaning and laundry, cooking.
6. Drive your daughter to doctor's appointments.
7. Attend doctors' appointments with her and take notes. Infected brains make for terrible memories!
8. Remind her that you love her and will not abandon her. Most of our friends and families dismiss our suffering. Some outright abandon us. Lyme is a disease of unbearable isolation.
9. Enjoy "Lyme friendly" activities with your daughter and granddaugher. Dinner at home and a movie on the couch are popular choices!
10. Do not let her give up on treatment. Remission is possible. You just have to work for it. She is in the fight for her life. Respect that. Actually, be in awe of that. We are all fighting for our lives, in a system that would rather we "behaved" and accepted our sick and limited lives. Tell your daughter, "Not a chance! As long as you are fighting for yourself, I will fight with you!" (She'll probably cry.)
11. Practice self-care. Caregiving is hard, both physically and emotionally. And grow. We are all faced with challenges in life. So much of life is about how we respond to them.
My best to you and your daughter. You can get through this.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Razz]](tongue.gif)
if you have anything you would like to discuss in more detail, please message me.
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic