posted
As some of you know my 14 year old daughter has been sick for some time (going on 6 years now.) Local docs and hospitals have found nothing wrong with her except for one doc mentioning she had a "borderline" Lyme test from Imugen. I did some research and got her an appointment with a Pediatric Lyme doc in CT. Our visit with him was wonderful as he and his staff were so caring and knowledgable. Some of her blood work results have come in and it seems she is positive for Lyme although I've not actually seen the numbers/bands. I was told over the phone that both the IGG and IGM were positive with several bands showing up significantly 4 +'s on the 31 band. This is all Greek to me but I am trying to learn and digest all the new information.
She is also positive for Mycoplasma Fermentans.
The doctor has prescribed Zithromax, Mepron, Bactrim and Florinef (for her NMH). What a HUGE ammount of drugs!!!!
My daughter is so happy to have a diagnosis. She went from a healthy and vibrant preteen who was on all the after school sports teams to a sad, irritable young woman who cannot make it trhough a full day of school and is exempt from PE due to illness. She is excited to start meds and get better. She has hope and for that I am so greatful!
I will be starting her on the meds tomorrow morning and I admit I am a bit nervous about it. She's never taken any kind of medicine besides over the counter stuff in her life!
I just wanted to share the results and will post more as I find out more. Thanks to everyone who's helped and supported us in the past.
-------------------- ~Kristina~ Posts: 173 | From Long Island ~ New York | Registered: Mar 2003
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Cobweb
Unregistered
posted
Hi Stardantzer- For both my daughter and myself-whenever starting new meds our LLMD first of all has us begin with one at a time-so if there is a reaction it's easier to identify what is causing the problem.
Also for my daughter, age 15, her meds are ramped up more slowly than mine, usually over a week's time to help her smaller body adjust.
So I would be cautious about starting all those meds at once and at their full dose.
Also I do not start new meds on the weekend- again so it is easier to reach the doctor should there be questions or reactions.
Monday is a good day because then you have a full week to work out any problems.
Well I'm glad and sad at the same time that your daughter has a diagnosis-it is a relief though to finally know what's up.
As some of you know my 14 year old daughter has been sick for some time (going on 6 years now.)
Local docs and hospitals have found nothing wrong with her except for one doc mentioning she had a "borderline" Lyme test from Imugen.
I did some research and got her an appointment with a Pediatric Lyme doc in CT. Our visit with him was wonderful as he and his staff were so caring and knowledgable.
Some of her blood work results have come in and it seems she is positive for Lyme although I've not actually seen the numbers/bands.
I was told over the phone that both the IGG and IGM were positive with several bands showing up significantly 4 +'s on the 31 band.
This is all Greek to me but I am trying to learn and digest all the new information.
She is also positive for Mycoplasma Fermentans. **********************************************
The doctor has prescribed Zithromax, Mepron, Bactrim and Florinef (for her NMH). What a HUGE ammount of drugs!!!!
My daughter is so happy to have a diagnosis. She went from a healthy and vibrant preteen who was on all the after school sports teams to a sad, irritable young woman who cannot make it trhough a full day of school.
She is exempt from PE due to illness. She is excited to start meds and get better. She has hope and for that I am so greatful!
I will be starting her on the meds tomorrow morning and I admit I am a bit nervous about it. She's never taken any kind of medicine besides over the counter stuff in her life!
I just wanted to share the results and will post more as I find out more. Thanks to everyone who's helped and supported us in the past.
Happy to read you finally have some correct diagnosis to work with! Best wishes to her/you/family as you all go down the lyme journey pathway. Bettyg
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
And please be sure your daughter is also taking a good strong acidophilus, not just yoghurt.
Be sure it is one you keep in the fridge and which has live cultures in it.
Antibiotics kill off the good bacteria in your gut and let nasty yeast flourish and cause yeast infection that can become systemic.
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
What I do now is have four excellent quality cold type probiotics and I alternate them and take up to 8 every day.
Plus soy yogurt (can't tolerate dairy yogurt anymore, probably from over-use).
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Stardantzer,
Welcome to the board. I'm sorry you've got to be here.
Looks like we're in the same boat. My almost 14 yo dd was just diagnosed last week. She hasn't started treatment yet.
I got Lyme in June and started treatment almost immediately.
Dd has had this longer than me; she has neuro problems, a seizure-like movement disorder, horribly painful head, neck, back, spinal cord?, hips, and knees. She's also had some digestive disorder that looked like gut paralysis, but I think it's resolving. She's been in 5-9 on the pain scale all this week. Nothing eliminates her pain.
She looks good & puts on a happy face when we're away from home, so no one realizes the pain she's in. She's been out of school for a month.
I almost had a mental breakdown last week. No one gets in a hurry to do try to identify the damage that's been done so we can treat it.
I don't have any advice...just keep in touch for support. You need it. We all do.
Nancy
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Kristina/Nancy I am so sorry that your daughter is so ill..These diseases are Hell..I also agree with Cobweb that it is better to go slow at first with a child..
However Dr.J. is the expert.. But make sure that you ramp up quickly and kill it off..We were very late to treat our daughter and she was not well by 18 and has been very non -compliant and is very dangerous at times ...So get your daughter well asap.
Also these diseases take a horrible toll on parents, family members and your support group..Try to find time for you and keep yourself healthy..
I can honestly say that I have lost the person I used to be since we have fought this Hell for so long. Sending plenty of hugs..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Kristina,
Is she tolerating the meds alright? Have you started with one med at a time?
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Kristina,
I was bitten when I lived on Long Island when I was 12. How I wish we knew about that pediatrician in CT back then. It took 17 years for a diagnosis.
You really are working with a doctor who is incredibly well respected in the Lyme community.
I hope your daughter is handling the medications well.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Just wanted to pop in with a quick update. I did start her on one med at a time although that is not what the doc recommended. She was taking the Bactrim twice a day and into Day 3 she became violently sick to her stomach with pain and diarrhea. The doctors office called me about something else and while on the phone they suggested Julia stop the meds for now until her tummy is better. She is really, really unhappy about stopping so soon into things but I told her I was sure she's be able to start right up again, maybe on a different abx. I am not sure if the Bactrim is for the Lyme or the Mycoplasma. Either way she's bummed to not be able to continue taking it.
Thank you all for the help and support. I've not been online much lately. My older daughter is making me a Grandma in December so I've been helping her out with things too, on top of trying to keep the Lyme fort down with my younger one.
-------------------- ~Kristina~ Posts: 173 | From Long Island ~ New York | Registered: Mar 2003
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posted
Just another update. Julia has been off the Bactrim for a coupole days now but is continuing with stomach pains and severe diarrhea. We have a phone consult with her doctor this evening so hopefully he will have some idea on how to help this.
She hasn't been in school all week between feeling miserable and now the tummy problems....
-------------------- ~Kristina~ Posts: 173 | From Long Island ~ New York | Registered: Mar 2003
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posted
Well the LLMD in CT called and suggests Julia stay off the Bactrim and when her stomach is better she can start the Zithro. We're going on more than a week with this diarrhea and pain. Could a couple days of Bactrim really upset her stomach so much?
-------------------- ~Kristina~ Posts: 173 | From Long Island ~ New York | Registered: Mar 2003
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi,
I am wondering if she might have a flu bug.??
The kids and I were sick last week. All were nauseated and my daughter did throw up.
I think it is going around.
Hope things are going better. I guess it is a good thing that you didn't give her all that stuff at once!
I understand so many abx's at once can seem daunting - but in the early stages of treatment in kids, this has proven effective among the Docs who treat this way.
- some members on the list believe strongly in only taking one drug at a time, taking breaks on their own initiative, or they get these instructions from their Docs -- ect, ect ..
but - in making the committment to work with an LLMD, you really ought to consider taking the medications as directed, and calling the office when/if problems arise on the prescribed regimen.
NOT to say in this case that had to do with the stomach stuff, I'm certainly not qualified to judge that -- but in general, different Docs work at this differently. Some prescribe multiple abx's from the get go, with the intention to begin straight away with multi-faceted address - some introduce one at a time, but then, the drugs are chosen in light of that approach and the illness condition.
Some want you backing off meds at the first sign of trouble, others make that call based on the circumstances at the time on an individual basis, and sometimes the call is to stay on through a Herxheimer. I do not believe there is any one approach that fits all.
In this case determining which drug to start with if it is suggested you do one at a time, would be nearly impossible for you to determine, as all these infections are intertwined for your daughter right now. Sometimes, taking one at a time can cause more problems than taking all of them together - having to do with the balance (or imbalance) of the infectious load.
The Bactrim is likely for the Mycoplasma - Just my guess on the stomach; if flu big is ruled out, and certainly based on the timing - it is not umcommon for kids to have a bacterial load in the GI tract that can flare in a Herxheimer type reaction once the abx is introduced.
best, Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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The doctors office called me about something else and while on the phone they suggested Julia stop the meds for now until her tummy is better. She is really, really unhappy about stopping so soon into things but I told her I was sure she's be able to start right up again, maybe on a different abx. I am not sure if the Bactrim is for the Lyme or the Mycoplasma. Either way she's bummed to not be able to continue taking it.
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