posted
My daughter has been in treatment since February. After starting treatment she got sicker than she had been before her diagnosis.
She has Lyme, Babs, Bart and Erlichea C. She has had infections for 10 years and completely broke down physically last fall. After going to many docs including a prestigious ID Duck who all diagnosed her with depression and teenage anxiety, she finally got diagnosed, correctly.
When she was first diagnosed I was so happy to finally know what it was and was hopeful her recovery would be fast and complete.
Then when she began treatment she got so much sicker and I began to get educated about Lyme and realized that it would be a long haul and that it could be years for her to be well.
Those of you who have supported us along the way know how sick she's been and all of the struggles she has been going through. She's a year behind in school and was stuck in her bed pretty much 24/7 for the past eighteen months.
She's still not in school, and she's still sick. But the great news is she has made notable progress! She has been able to go out with friends on the weekends hasn't totally crashed afterwards. This is huge improvement for the girl who couldn't walk from her bedroom to the kitchen without a rest or without having to lay on the floor half way to her destination.
She hasn't had a migraine in almost a month. She has gone out with friends for the last 3 weekends in a row. She is doing her homework. She is relucantly helping around the house (teenagers). She is smiling more and I can see her former self beginning to shine through again.
I know she's not there yet, but I know she'll get there. I wanted to share her success and progress because I know how scary it is to begin treatment and not feel like it's helping month after month.
If it wasn't for my family here at Lymenet I know I wouldn't have been able to get her half as far as I have. Thank you everyone for your continued support, encouragement and knowledge.
Together, we'll make it! Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
That is so encouraging to hear.Thanks nice to hear some good news...
Posts: 72 | From illinois/wisconsin | Registered: Sep 2010
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Congrats to your daughter!!!
This actually sounds a LOT like where I am right now....where your daughter is now, and how far she's come. I got sick in high school, and it was literally overnight (sudden onset).
I was the worst right in the beginning of the illness, but just never got better the whole time I was undiagnosed. There was over a year where I was too ill to care for myself at all. That entire year is a blur in my memory.
Many times, stopping on the floor to sleep, exactly like what you are describing. Like I would need to rest while trying to get out of my PJ's. I slept a lot. Had migraines, light and sound sensitivity, very ill. People thought I was having an emotional breakdown, but I kept insisting I was sick with something.
Anyways, I am much better now, but still not fully healed. There have been ups and downs. I am married, and can do some household chores (husband does the rest). I can go out socially about once a week. I can go on little errands with my husband. My personality, like you said for your daughter, is coming back.
Since your daughter's situation sounds pretty similar to mine, I was wondering if she saw much progress with babesia treatment. So far, I feel like those are the drugs that have not yet given me any results (the babesia drugs like Mepron, Malarone). Just wondering.
I tested positive for Lyme/bart henselae/babesia, but no erlichia.
Best of luck to you! I am sure your daughter will continue to get even better, and I'm sure she has a bright future!
Oh, the other thing that is helping me, is I had a sleep study that showed mild/moderate (borderline) obstructive sleep apnea, so a CPAP machine is helping my stamina, but not fixing my need to oversleep yet. And I feel Low Dose Naltrexone helped my immune system.
The other piece of advise I have for you, is to not let your daughter get vaccines, even when she is doing much better. I had a DPT vaccine when I was doing a little bit better, for college, and it caused me a horrible relapse. There has gotta be a way to get out of those, but I didn't try to get out of it.
My flu shot one year went fine, while sick, but that DPT was horrendous and I had to dig my way out of the hole after that.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Speaking of vaccines..... I wonder how much of my daughters illness has been caused exacerbated by vaccines through the years and if her 'boosters' at 14 helped take her down.
She had so darn many ear infections from age 1-6 that in my ignorance of trying to help her I vaccinated her with everything I could.
I also believe that the reason she is so sick from Lyme and Co now is #1 it took 10 years to diagnose her and #2 she was on abx for ear infections off/on for the first 8 years of her life.
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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yes now I know how bad vaccines are for a compromised immune system it will never happen agin.
I am not positive thats what caused her relapse BUT a few hours after she started feeling really weird and just plain awful. That cleared but 10 days later her horrible symptoms were all coming back.
LLMD is very suspect that the vaccine had ALOT to do with it.
Deb g
Posts: 499 | From Malta, NY | Registered: Dec 2008
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Great news!!! So happy to hear!!
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Fantastic!!
What are her meds if you don't mind me asking?
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Great News!
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
So overjoyed for you!!! Thank you so much for keeping us updated, you're right it really helps keep our spirits up. Praying for her continued recovery.
Posts: 219 | From pacific nw | Registered: Jun 2009
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posted
Wishing her continued success.......wonderful news!
Posts: 648 | From northeast | Registered: Feb 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Deb, yes, that is probably the vaccine.
For me, I knew it was bad within about 15-20 min of getting the vaccine. I was barely home from the health clinic, when I was on the couch, feeling a strange heaviness coming over me, like I was coming down with something creepy (didn't feel like an infection, it felt like heaviness). I could tell even then that whatever was happening was going to be horrific and not go away overnight, because it was so bad, I couldn't just get up and walk around. I was down for the count, like someone injected me with a poison.
So if anyone is worried.....if you were gonna go through what I went through, you'd know the first day.
But like I said (I think?), I had had a flu shot previously and that went fine. My theory is that there's something about the DPT that's bad news....some kind of insane toxin, or it causes some kind of immune stimulation that is too much.
I would be less inclined to believe it was a toxin, because you'd think your body would detox it and that's that. But this caused a full-on relapse for me.
Posts: 4590 | From Midwest | Registered: Jun 2008
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