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» LymeNet Flash » Questions and Discussion » General Support » When does this get easier???????????

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Author Topic: When does this get easier???????????
lymemomtooo
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Mom's, keep a good eye on any picc lines..Heaven forbid, I be allowed to see my daughters' but it might have been caught earlier, had I been allowed to check.

I hate these diseases!!!!!!!!! My daughter has gone backwards since the suicide attempt of 2 weeks ago and since discovering that her pen pal on the tip of Sri Lanka is probably gone...

Now today, her picc line arm was swollen and red..The nurse and Dr conferred and the line was taken out and we went to the hospital..Sure enough a blood clot...

Now an even more than before messed up child and no way to get abx to the spirocetes and friends...

Her blood sugar is off and the psych things are raging..I need a private room in Shepherd Pratt..and if her mouth and behavior doesn't improve, I don't know how I will deal with her.


Posts: 2360 | From SE PA | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
Starphoenix
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Oh, "Mom." I'm terribly sorry. I feel deeply for you and your daughter. I am sending love and prayer.

Please don't lose hope for treatment. What about other treatments, like Rife or colloidal silver? Maybe orals? And perhaps she'll be able to safely manage a PICC line again.

I had a problem with swelling and pain. I can't remember what I was told to do to prevent the clotting. A lot of help I am in this regard! I may have taken an anti-inflammatory or two and stretched it. Maybe get a second opinion?

I know it's often one step forward and ten back.

I'm with you in spirit. Please don't lose hope.

Steph


Posts: 1318 | From Shohola, PA | Registered: Apr 2002  |  IP: Logged | Report this post to a Moderator
guiney
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Hey there! I am so sory to hear of more trouble happening to you and your daughter!

I've been checking for an email from her but I didn't know all this was happening....

as I said before....Ya'll are in my prayers

Jamie

------------------


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lymemomtooo
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Thanks guys!!

To G, I do not know if she will answer you..She has not been good without this new stuff..She won't even email her teachers to get help with stuff she has missed..

Wish I could crawl into her head and do some cleaning..things are pretty screwed up in there!!!Last night during the worst of it, she had about 20 minutes where she made some pretty rough comments to me and made some horrible threats. That stuff is almost harder than all of the other symptoms. Valium was a good thing for the situation.


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kam
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I'd stay out of the line of fire. I just have in home health care for 2 hours a day.

I do better not having the people here, but know I need them here because I can't take care of things myself.

I find if they will just do their job and leave me alone I do better.

Most of them don't understand this and want to talk, ask questions, clarify things.

Maybe keep your contact with your daughter to a minimum and keep it simple.

And stay out of the line of fire!

I have a log book that I am starting with the person who is working with me right now.

I hope to communicate with her through it. I also have told her that I will either not answer or tell her I need time out.

It takes all I have to be doing whatever it is I am doing at the time. I am surprised at how quickly I become impatient and want to throw something at her.

I don't...because I know this is not how I usually am with people.

But, I was having such a rough time of it yesterday, I just told her to go home and come back in 2 days.

I wasn't feeling well enough to deal with her.

I find it helps if the person is an independent worker and doesn't need interreaction from me.

It is hard to explain. Movement, light, sound, ....can all be too much.

Just having someone doing something in the other room is too much some days.

So many things are going on with the body that it is difficult at the time to figure out what is going on. I have just learned I need to stay quiet and just keep breathing.

It makes matters worse when they do not respect this.

Having the computer to take my mind off of things helps. I don't have the noise of the TV and it is quiet.

Other times watching TV will take my mind off of it.

I don't know what your daughter is dealing with, but I can try to share what I have learned and experienced.

I also can not go out in my power chair on certain days or need to take the side streets because the noise and movement on the main street is too much.

At times, it is all I can do to deal with what is going on in my body without having someone else ask things off me or try to help.

For example: I sent the in home health care person to the store the other morning to pick up a few items when had missed the day before. I had a list. She still complicated matters. If I was well. The questions and comments would have not been a problem.

She needed to just take the list and go to the store without the questions and comments.

When she returned, I told her I was not doing well and that I would see her Thursday.

She had trouble switching gears and started with the questions and comments again. She just needed to say I am sorry you are not doing well and I'll see you on Thursday.

Keep it simple. Everyone deals with this differently.

I would just stay out of the line of fire. I wouldn't be around for those 20 minutes of abuse.


Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
kam
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I had my PICC line removed recently and have been off of abx.

It is OK.

My doc sent orals for me to take. I just haven't started in on them because I am pretty out of it and I too had thoughts of ending it while on the meds before.

I wonder how the young ones deal with this. I know how difficult it is for me and I use to teach anger management. HA!

Now, I need it!


Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
lymemomtooo
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Kam,thanks..I am also sorry that you are going thru this hell..Perhaps 2005 will be a productive year for advances in treatment and cure..I pray!! lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
Linda LD
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lymemomtoo,

I may be stating the obvious (I'm new at this). Has anyone checked her thyroid?

My doc said as the body tries to kill the bacteria it sometimes attacks itself--producing an autoimmune--one possiblility being thyroid disease. Also, Hashimotos is a disease of teenage girls.

Have your doc check her:
TSH
T3
T4
and check for
Hashimotos antibodies.

MAKE doc check them ALL! Also go to Mary Shomans aboutthyroid.com to make sure your daughter's numbers are within exceptable ranges.

I was hyper as a teen and Linda Blair had nothing on me. Hormones can be very powerful. It took 20 years to get diagnosed only after my twin sister begged a doc to touch her neck.

One in five women have thyroid disease and half are undiagnosed. The older you get the more likely you are to get it. Stress makes it worse.

If her numbers look o.k. take your daughters temperature every morning before she gets up. If her temperature is consistantly below 98.6 then she has Wilson's thyroid syndrom and needs to be treat despite what her "numbers" are.

I'm sorry if I am stating the obvious.

Thanks,
Linda

[This message has been edited by Linda LD (edited 05 January 2005).]


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lymesux
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Lm2,
I am soooo sorry for what you and your daughter are going thru. My heart breaks for you.

I'm going thru alot with my kids and can so understand how hard it is but not sure I could begin to understand all you are going thru.

My best wishes to you both.


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lymemomtooo
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Linda, she gets regular thyroid checks, but not sure if the Hashimotos or not..She also has juvenile diabetes and between her endocrinologist, her llmd and gp..She is always being tested for many things.

B..thanks for the wishes..I continue to hope she will some day be well..And that there is a cure for this crap...Hug those babies and get them well before they are almost 18..It may be a mess soon when she determines she can make her own choices, since she wants to die..


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Mo
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Damned Bugs!!!!!!!!!!!!!!!!!

I hate them with every fiber of my being.

It's THEM talking, not her..though I know all too well how hard it is to see that when your child tells you they want to see you die a horrific death, "Shut up you
[email protected]%&$!*!!", throw things at you, and attempt suicide..try and jump out of moving cars, run away, ect, ect, ect..

I've seen it all from the gentlest of creatures God ever created. Our own little exorcisms we have here.

Doc Jones told me a six year old, with Lyme and Bartonella..who proceeded to rip apart the office in a matter of minutes..

Stopped and cried and said "Mommy, I can't help it..I have bugs in my brain"

Out of the mouths of babes, there you have it.

The older ones have a much harder time making that distinction even for a moment, and if they do, cannot articulate it.

LymeMomToo..

..can you access the other arm or a port?

My son did not stop this, it got much worse off abx, and though I know abx are by no means the perfect tool, it's all we've got to hoope to get this down to levels where we can figure out the rest of the maze.

For my son it took months of IV, with high doses of Rifampin (Bartonella is almost ALWAYS a part of this psych disorder!!!!), and terrible Herxheimers before we put two days together where it didn't happen..

Then three, then a week, and finally it was over.

NOTHING else worked. Many other side complications resolved with this as well.

How long has she been treated with IV to date?

Perhaps re-initiation will do some killing at this point that will not cause the same mega Herxing now.

She must show her line. Though, my son was thriteen, so I could still get that with lots of verbal conditioning (he tried to pull mine out once though LoL), I often think if he was older, we would not have had the access to his. I have always done his dressing changes..a miracle he let me, really.

If/when it's right to go alternative, my only suggestion would be to contact Bev (Orion) ..look up her posts on ozone therapy.

She has a daughter about your girls age who was very ill. I find her experiences with ozone sauna worth looking deeply into.

Thinking of you often..

Mo

[This message has been edited by Mo (edited 05 January 2005).]


Posts: 8337 | From the other shore | Registered: Jul 2002  |  IP: Logged | Report this post to a Moderator
lymemomtooo
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Thanks Mo..I know you have also been in the trenches..Sorry..But comforting in some weird way to know I am not alone.

We are to do a periphial line on Monday and pulse Rocephin Mon-Thurs for the next 2 weeks and then probably go for a new picc.

The real pit of all of this is I have a less than a month to get her mind better..She will be 18 and swears she will then do as she pleases, not that it doesn't happen now..

She has thoughts of divorcing us and going to Florida..Thinks it will be better there than here.Let's see, all things provided and she doesn't lift a finger except to sterilize her room and bathroom..Mom does everything and Dad pays for everything..

She has no means of support and poor health, and has po'ed most friends. Think I need a drug induced coma for a few years to get her brain thru this..lymemomtooo

[This message has been edited by lymemomtooo (edited 06 January 2005).]


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Barrie
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I noticed you mentioned Shepard Pratt, are you in MD? I am in Forest Hill. I am a lyme mom too, with a fourteen year old daughter who is having a set back but, nothing like what you are dealing with. I would love for my daughter to be able to IM/email another teen with lyme. When you mix lyme with the hormones of a teenager, it isn't pretty. My daughter is playing catch up on everything she missed the last three years. We were almost healthy and back to being a "normal" teenager. She was even off the AB for four weeks. Now, the old familar joint pain is back. So, she is back on the antibiotics. But, she was doing great before this set back. I know there were days that I would just cry thinking that our lives would never ever be close to normal again.I would ask her dr, when will she ever get better. But, she did. She was back in the real world. I now wonder how much longer she will be on AB? I am so sorry to read all that you and your daughter are going through.I know how this is all consuming. My thoughts are with you and your family. I hope you see some improvement soon.
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lymemomtooo
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Barrie, I just put a note on your post..

We live in Delta..

There is a support group that meets at Highland Presbyterian Church(Technically Street, Md) on the 2nd Thurs..You may know about this but if not, it is only about 15 minutes or less from Forest Hill.. Mtgs start at 7:30 and this month(the 13th) will be about controlling ticks on your property.Our leader's mail is [email protected] for additional info.

Highland is pretty epidemic and I know of a lady that is fairly sure she got lyme at the 4-H camp..She was collecting greens for Christmas decorations there.

Also a psycholigist the my daughter sees lives in the St.Anne development and has a daughter that had the ER rash and has been treated..

Think this area is getting pretty bad,just many Ducks do not know about it or what to do.

I wonder if this is not a life long struggle to keep symptoms under control..You may never be able to let your guard down..

It has been recommended that we see the Dr in Ct. but are very pleased with the ones we currently have, they are top notch also. We also have been advised to additionally seek the help of a Dr. at Columbia so may look into that option.

Good luck, if I can be of any help, please let me know..lymemomtooo


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griswoldgirl
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My heart goes out to you taking care of your daughter, how old is she? I am glad that she has you to take care of her though.

there a lot of us that do not have that luxury and are alone in this literally. I hope she knows how greatful she should be--if she doesn't now-when she is well she will.

I read about he make a wish foundation--I hope there is something they can do for her. On oprah's website she also is accepting entries to win red carpet treats.

As far as when does it get easier???????????// I just do not know--my life has been one mishap after another for a so many years now that I have literally reached the numb stage. I do not like it but do not know how to handle it anyother way at times.

email me anytime if you would like

hang in there

Cathy


Posts: 192 | From Myrtle Beach, SC | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
   

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