About ready to have a nervous breakdown. My daughter has been on abx since January 09. We did
a picc line in March and she was doing so well we pulled it in July. Symptom free until September
after a tetanus/pertussis booster. Not sure if its related or not.
Been trying different combos of orals and she just keeps having horrible flareups that now seem to last longer than the good days.
I like our LLMD..I am just concerned maybe she has a very resistant strain. We treated for Bart off and on. Nightmare trying to figure out these symptoms.
She is only 15..she should being enjoying high school not sick all the time.
Sorry I'm just very depressed and can't stop crying because I am so sick of watching her be sick! Why can't it be me?
Thanks for listening..
Deb G
[ 12-14-2009, 09:32 PM: Message edited by: Deb133 ]
Posted by JOLA (Member # 23498) on :
Dear Deb, I'm so sorry to hear how sick your girl is. I know how awful this disease is for me but I'm so grateful that its me and not one of my kids. A friend of mine whose daughter has been bedridden w/this for over a year and is currently on IV down in SanFran told me they just try to find some little good thing each day. They also read and sing together and keep the thought that this will start to get better soon. I know that its hard to feel that way but sometimes forcing yourself to smile when you don't want to helps the mind and heart to heal. Try not to let this get you too down. You need to keep healthy for your baby. Hope tomorrow is better than today Joan
Posted by glm1111 (Member # 16556) on :
Soooo Very sorry Deb.
I really encourage you to look into the co-infections of parasites and worms. Some LLMDs are not aware of this and the testing is highly inaccurate. I only turned the corner after I saw the lymephotos site
and started treating with antiparasitic herbs and salt/c Willy Burgdorfer found adult Filarial Worms in the ticks he dissected.
I expelled everything pictured on lymephotos. You can type parasites and worms into the search bar here for more info. PLEASE don't ignore this,
Gael
Posted by Parisa (Member # 10526) on :
Deb,
Go ahead and have your nervous breakdown. Schedule it for after everyone goes to bed and you can have your own little pity party. Let it all out and then tomorrow put on your Lyme warrior gear and start looking into what changes need to be made.
I've been where you've been, although it's with my husband not a child. I'd look at what worked in the past and see if maybe you can't go back and possibly do it over again. Co-infections are important too.
Posted by Jane2904 (Member # 15917) on :
Hi Deb,
Hang in there. Better days are coming
Our daughter didn't make any progress until we started to treat the Bart. So far, we are almost 7 months into treating it, and many of the symptoms are better.
But not all, so maybe your daughter needs further Bart. treatment ?
Our LLMD says treatment take awhile, I guess he is right; as I thought our daughter might be symptoms free by now.
It is a long road, but your daughter will get there. She has a wonderful Mom.
Sending you big hugs from one Mom to another, Jane
Posted by Deb133 (Member # 18544) on :
Thanks Joan...I am usually so much more positive than what I'm showing tonight...
Gael...I have read many of your posts and I have always kept parasites in the back of my mind..our LLMD is all for treating for parasites even without testing...so I thought maybe over Christmas break would be a good time to treat...
Jane..I have been thinking of you alot the past few days...I've been waiting until she has a "good" day to check in with you...tonight is one of the worst nights she has had in a long time...
For the past year we have always laughed and have always found a bright spot in these gloomy days
but right about now we're both having a hard time doing that...
Thanks for listening....right now I don't know where else to turn...
Deb
Posted by jkmom (Member # 14004) on :
I went through the same thing in October. It was the worst month my daughter has had ever. She is better enough that I feel more positive now, but she is still very sick.
We changed LLMD's to a more integrative one. It is too early to say how it will work out, but so far, she is getting better instead of worse.
Can your daughter get another picc line?
I don't really have any advice. I just wanted you to know I understand. I, too, wish it were me instead of my daughter.
Posted by pab (Member # 904) on :
I know how you feel. We have been dealing with Lyme and co-infections for many years. My husband, myself, and our 2 sons are ill.
jkmom,
What treatments have helped your daughter since October?
Posted by swedish lyme sufferer (Member # 14579) on :
Hi! I am sorry for your struggles. NO VACCINES before being symptomfree for +1 year!!!!
The relapse is possibly Lyme relapse triggered by the vaccine.
This is very common.
Retreat - this is very commonly needed for lyme disease.
And NO more vaccines - no influenza vaccines - nothing -! VERY IMPORTANT!!!
BEst wishes!
Posted by merrygirl (Member # 12041) on :
has she been treated for babesia??
Posted by Deb133 (Member # 18544) on :
No treatment for babesia...today she is a little better...better than last night...describes it
like she was run over by a truck and now shes coming out of her coma...very weak...not much pain except a bit of a headache off and on.
Its like she has a big flair and then her body feels very fragile and weak for a while until it recovers from whatever it goes through...strange....
Thank you everyone...I really was in a bit of a state last night...
Deb G
Posted by sutherngrl (Member # 16270) on :
Deb, what you just described sounds so familiar. I describe my lyme almost the exact same way. Run over by a truck, feel bad a few days, then I feel better.
It is very common to have flair ups. Some ppl say every 4 weeks. I have been keeping records the last few months, and I am beginning to see a cyle of every 3 to 4 weeks where I feel my absolute worse. In between I have good days and bad.
Posted by timaca (Member # 6911) on :
Deb~ Have your daughter tested for other pathogens, such as HHV-6 and EBV (use Focus Diagnostics Lab) and enterovirus (use ARUP lab). It is possible that viruses are part of the mix too.
Best, Timaca
Posted by karenl (Member # 17753) on :
Deb,
I am so sorry for your daughter. The tetanus vaccination made me extremely sick. I avoid any vaccinations now.
Deb, I have a son at about the same age and very sick.I really understand you. Karen
Posted by Amy C (Member # 19297) on :
I can relate! I have 2 boys sick plus myself, my mom and my brother. So it is every where around here!
It's hard for me to get well because I am so focused on my boys getting well. School is sooo difficult. My youngest had a tutor and home schooled last year toward the end of the school year. He is going to school this year but misses an average of 1 day a week and is late probably the other 4 on most weeks.
Homework is very difficult too! I worked really hard and got them both 504 plans for school so they could get accomidations when needed.
I just pray there is an end in sight! They have been treating since March of this year.
I have heard many people and doctors say not to get vaccines while you have lyme. I hear it can set back your treatments. Or have heard others say they had a vaccine and then their symptoms started soon after. So if it is dormant it might wake it up so to speak.
There are alot of added ingredients like mercury and formaldehyde just to name a few. I started researching vaccines a few months ago. After most of what I have learned I probably will stay away from all vaccines from now on.
Thank goodness for sites like this so we can all be here for each other! (HUGS) Amy
Posted by daphnesmom (Member # 22267) on :
Hi Deb. I am sorry. Posted by karenl (Member # 17753) on :
Amy,
you are right. I was completely healthy when I got the tetanus vaccination but horrible fatigue started the next day. I never recovered.
I had already another vaccination problem which I did not. After hepatitis B vaccination I got a serious bowel issue. And after a flu vaccination I got a red swollen arm.
I just did not see the connection.
Posted by jenny76 (Member # 18205) on :
quote:Originally posted by timaca: Deb~ Have your daughter tested for other pathogens, such as HHV-6 and EBV (use Focus Diagnostics Lab) and enterovirus (use ARUP lab). It is possible that viruses are part of the mix too.
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