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Respected Contributor
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Registered: ‎01-03-2012

Re: My daughter who has chronic Lyme Disease

[ Edited ]

@LilacTree wrote:

When I got up yesterday morning, I almost tripped over my daughter who was sitting on the floor by the open front  doorway on the phone talking to 911.  She had called an ambulance because she feared she had "sepsis."  This has never happened before, although she has thought she has had sepsis for several weeks now.  I tried to remain calm and I am not sure she was even going to tell me she was going to the hospital.

 

When she hung up I asked her if she had a fever and she said no, but that she was so weak, she couldn't walk.  They came quickly and asked her dozens of questions.  I could see they were skeptical (and so could she) but they did take her to the hospital which is maybe three minutes down the highway.

 

My daughter has had chronic Lyme Disease and I have spoken about this before.  She is getting worse and has stopped going to the "Lyme" doctor because nothing he has done has helped her.

 

I immediately called her sisters to get to the hospital as quickly as possible (my one daughter lives almost 60 miles away).  I did not go because it was obvious she did not want me to, she didn't even want her sisters there, but they went anyway.

 

They did every test the ER can do, and came up with nothing (as has happened before . . . Lyme does not show up in regular hospital testing).  She does not have sepsis either (which I knew before she left . . . sepsis is the advanced form of MRSA and can be deadly if not treated in the ICU immediately).  One does not walk around with sepsis for weeks.  However, she needed to be told that. 

 

As soon as the ER doc said they were going to discharge her, her sisters had to calm her, as she really thinks she is dying.  We are going to call an infectious disease practice on Monday and get an appointment as soon as possible.  She has no confidence in them either, but she will go.  Some victims of Lyme do get better on long term sessions of IV antibiotics and she has finally agreed to try that.

 

My daughter is very sick with something, and she does test positive for borrelia burgdorferi (a Lyme titre), but after these many years feels she has many more illnesses than just that, including meningitis.  The medical community is very negative about chronic Lyme, which has also sent her into a very deep depression (which she does not acknowledge).  The ER doc said she should be treated for the Lyme, but for depression at the same time, or the treatment will not be effective.  This she repudiates, but we all know she is deeply depressed and who can blame her.  When your whole life changes from illness and no one believes you, who wouldn't get depressed?

 

NJ is slowly getting around to enacting legislation that will finally recognize chronic Lyme as an actual disease.  NY and some other states have already done it.  Thing is her COBRA from her job has run out and she's been in the process to get it through the ACA, but hasn't yet completed it, so she has no insurance.

 

We will all make sure she gets whatever treatment she needs no matter the cost.  When she came home last night, she looked so defeated, her head hanging down and barely able to walk by herself.  Her sisters helped her get into bed, and my youngest daughter is coming again today.  They will be back on Monday also, our fingers crossed that she can get an emergency appointment that day.

 

This is so heartbreaking, we all feel so helpless.  Yes, she is very negative and hard to deal with, but that is part of the disease.  She looks ten years older than she is, and feels as though she is on death's door. 

 

 

 

 I sought out an acupuncturist for some pain I had and I met a young woman who has had great results from acupuncture for Lyme disease. Has your daughter considered this?

 

 

 

 

 


 

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Registered: ‎03-25-2012

Re: My daughter who has chronic Lyme Disease


@goldensrbest wrote:

@LilacTree, I feel there is some truth in what alicedee said, your family has some serious issues, and this daughter must help herself, there has to be help for her , she seems out of balance.


@goldensrbest

Yes, of course you are right.  We have not been exactly "blessed" these past ten years.  I don't want to go into her personal history, but her divorce was a nightmare and still is.  She never talks about it anymore.  But her marriage drained her of all of her emotional strength . . . I saw it because I lived there for a while.  I don't think any of what she's going through now would have happened if all that came before it hadn't been so devastating.

Formerly Ford1224
We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Elie Wiesel 1986
Honored Contributor
Posts: 12,997
Registered: ‎03-25-2012

Re: My daughter who has chronic Lyme Disease


@alicedee wrote:

Because you put this out here I will give you my opinion....not criticism of you or your family, just what I would do in this circumstance.  

 

There seems to be a lot of enabling going on.  I would say it's time for tough love.  I would tell her she has two severe issues she is dealing with.  The Lyme disease treatment...very difficult to come up with, but we will keep pursuing it.  The other is the mental health issue...that CAN be immediately and effectively dealt with.  

 

If if she wishes to be healthier and have family support, she needs to pursue treatment for both equally serious issues.   The depression can be immediately dealt with....that should be the first step.  

 

I would not continue to put my own physical  and emotional health in jeopardy for someone who refuses to do what they need to.  Not even a child...who is an adult.  

 

As as I said, I am giving you MY opinion of what I would do.  You will have to come to your own way of dealing with it.  I do wish you both the best.  


@alicedee

I tried the "tough love" approach (which looks so silly coming from me).  All she said was if I can't handle it she will leave.  She has absolutely nowhere to go and very little money. I know I could never abandon her.  Her sisters have tiny little apartments and no place to put her, but they help as much as they can.

Formerly Ford1224
We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Elie Wiesel 1986
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Re: My daughter who has chronic Lyme Disease


@LilacTree wrote:

@goldensrbest wrote:

@LilacTree, I feel there is some truth in what alicedee said, your family has some serious issues, and this daughter must help herself, there has to be help for her , she seems out of balance.


@goldensrbest

Yes, of course you are right.  We have not been exactly "blessed" these past ten years.  I don't want to go into her personal history, but her divorce was a nightmare and still is.  She never talks about it anymore.  But her marriage drained her of all of her emotional strength . . . I saw it because I lived there for a while.  I don't think any of what she's going through now would have happened if all that came before it hadn't been so devastating.


Your a kind person , but she needs to help herself,  it isn't doing her any good, just laying around ,and what ever happened years ago,she should be pass that,she needs mental help.

When you lose some one you L~O~V~E, that Memory of them, becomes a TREASURE.
Honored Contributor
Posts: 16,162
Registered: ‎03-10-2010

Re: My daughter who has chronic Lyme Disease

Tough love is not easy, but she must help herself,making excuses for her ,only making it worse for her.

When you lose some one you L~O~V~E, that Memory of them, becomes a TREASURE.
Honored Contributor
Posts: 14,139
Registered: ‎01-02-2011

Re: My daughter who has chronic Lyme Disease

Lilac, is there anyway you can talk to a counselor on your own to get some advice and a different perspective on how to interact with your daughter.  Right now you are just spinning your wheels:/

Esteemed Contributor
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Registered: ‎11-15-2011

Re: My daughter who has chronic Lyme Disease

@LilacTree At the risk of being crucified, I would like to look at this from another angle.

 

I had a friend who got Lyme Disease and had many of the same symptoms you have mentioned.  Her husband (who appeared so good to her in public) actually destroyed her mentally.  She began failing at work and they suggested she go to counciling and she did but the end result was devastating!

 

Also, as  you know, I was in the hospital a week in Feb, week in March, week in April and 15 days in August.  My being sedendary so much caused extreme weekness.  It's been 6 months and some days my legs feel like they are going to just buckle.  I went to the Doctor yesterday and she said it is all perfectly normal from the lack of activity.

 

That "weakness" feeling is nothing I have ever experienced before.  Some days I feel like you could blow me over with a breath.  I am not light headed, I am light bodied, unsteady and it is scary.  It was explained to me that it is simply my body trying so hard to heal and build strength beyond it's limit.  

 

I know your daughter is often bedridden.  Her muscles are probably so atrophic that she feels much that same way.  You just feel like you are not really there, it is just happening.  You walk and it's like you are floating.  Weird, I know, but very real.

If she feels anything similiar to that, I understand it.  You just simply feel like you can't move!

 

Try to get her to do some physical and occupational therapy.  I remember them putting satin, so they would slide easily) boots on me to get me just to move my legs, just move them, anyway just move after I was in an automobile acident.  Just moving your pillow, lifting a glass to drink, even the least movement helps.  

 

I wish you and her the best.  Once you get so weak it is so difficult to bounce back.  Yesterday, I was told to give it a year and I am in good health.  Had surgery for a one time problem but have no other health problems.  I take a water pill to control HBP.  I can imagine how difficult it must be for her not being that healthy.  Don't give up hope!

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Re: My daughter who has chronic Lyme Disease


@cherry wrote:

About all they have done for my niece is give her pain meds. She was on oxycontin for a while ,and  her new Dr stopped it. But now she is taking some type of morphine, so I am not sure that is any better, but I'm no Dr


@cherry

Cherry, what is her medical issue?  Of course you don't have to disclose that.

Formerly Ford1224
We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Elie Wiesel 1986
Honored Contributor
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Registered: ‎03-25-2012

Re: My daughter who has chronic Lyme Disease

@Zhills

Yes, I do remember your post.  You sound as though you are feeling better . . . I hope I'm right about that.

 

Thing is we are the blind leading the blind here.  My main symptom, aside from chronic pain, is severe exhaustion many days.  I drink a lot of adult Pedialyte which does help a little. 

 

She has always been able to drive, but I'm not sure now that she will be safe doing that.  I haven't driven in over five years and don't feel I would be safe on the road, or anyone else on the road with me.

 

We have a lot of "stuff" to figure out.

Formerly Ford1224
We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Elie Wiesel 1986
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Registered: ‎05-15-2016

Re: My daughter who has chronic Lyme Disease

Does she want to get better as much as you want her to or is she somewhat invested in being sick?