I have a daughter who's had lyme, bartonella, and babesiosis for the past 8 years. She's now 13 and was once again bitten by a nymph deer tick in Nov 2006.
Within 2 weeks she became suicidal, began cutting herself, couldn't do her school work due to memory, concentration, and comprehension problems, slept 22 hours a day, had violent mood swings, was deeply depressed (already on meds for that but it stopped helping), went into unprovoked rages, hurt others, acted totally out of character including doing things without thinking about the consequences, just totally seemed to have a complete dark side evolve. Like a split personality, only her "normal" self was totally gone.
I slept with her to make sure she wouldn't hurt herself. She didn't care about anyone or anything. She was just so destructive, especially to herself. Tore our family apart. My husband and I almost committed her to a psychiatric hospital.
She's been seeing a lyme doc all this time, but was on zithromax and mepron for babesiosis and bartonella, nothing more. The doc we see now switched her to doxycycline in August and within 3 weeks I had my sweet girl back! Unbelievable transformation!
Now, he says he will only give her doxy for the next month, then he's going to take her off the med! I can't believe he's going to do that. She had a SPECT scan in 2001 (normal) and again in March 2007 (abnormal), so I know the lyme is in her brain.
We used to see different lyme docs and they agreed that you should continue meds until all symptoms are gone, then 3 more months before stopping. She still has memory, concentration, comprehension, and cognitive problems.
My entire family has this horrible disease and many co-infections. I know when I go off my meds it takes twice or three times as long before I begin to feel well enough to even function.
Does anyone have any idea how long she should stay on the doxycycline and won't the lyme become immune to it if he takes her off too soon? I'm scared to death to go backwards with her. She's lost so much time in her life and if she has the personality change again, I'm so afraid she'll commit suicide. I don't think he fully understands the mess our family was in and what a living nightmare it was.
I know it was all the lyme stuff making her like that because she wouldn't just do a 360 in less than a month.
Has anyone else had an experience like this? To have neuropsych symptoms and then take meds for 3 months, then have them taken away? If yes, how did you do?
Thanks for any input you can give me.
Posts: 56 | From Downingtown, PA | Registered: Jun 2007
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posted
It sounds too soon to me. Is there another Lyme doc you can consult for a second opinion?
Posts: 991 | From California | Registered: Feb 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Ditto all the advice above!!
I think this is an emergency situation calling for a top LLMD, such as the best there is on the east coast, no less.
Your child's life is at stake, particularly if her situation is that dire that you fear she might commit suicide and if her SPECT shows dramatic changes.
If that were my child I would have her on an IV line so fast someone's head would be spinning around.
Whether she liked it or not (and it's unlikely that she would!!!)
The promising news is that children DO recover much more rapidly and completely than adults IF they get good, I mean GOOD, treatment.
You're a wonderful mom for keeping such an eagle-eye on her and keeping her in bed with you. Keep fighting for her, you're on the right track!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Princess- It appears to me that you might need to find a different doc. There are lyme-literate docs that specialize in kids with lyme. I seem to recall that some docs think doxy isn't best for kids, for example. For babesia the usual treatment in atovaquone ('mepron' or 'malarone') and/or the herb artimesia anua (or it's extract, artimisinin). I really hope she feels better soon! DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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posted
In my opinion the Doxy may be working on Bartonella which can sometimes be killed off in 3 months. The mood swings and all the pscyh stuff seems more like Bart symptoms to me.
Different strains of Bart respond to different meds -- the Doxy might work where the Zith might not. But if she still has Bart she will probably need to add in Rifampin at some point as well.
I would suggest doing the bloodslide test for $250 from the Fry lab to see if she still has Bart or Babs and then you will know what to treat.
It is unlikely the Lyme is gone, but Lyme by itself is much easier to treat than with all the coinfections on board.
Good luck and keep fighting for your child. She is lucky to have you.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Thank you everyone for your advice and thoughts. Thanks you especially for the kind for the kind words regarding me as a mom. It's very reassuring that I'm doing all I can for her and to have support from others, especially when my own family is rarely in my corner.
I will find someone else to take her to. This doc was going to put her in IV but decided to try the oral doxy first because her western blot was negative.
He said he needed a postive western blot AND the positive SPECT scan before the insurance would cover the cost of an IV. She, my hubby and myself were totally ready to go for it again.
She had an IV back in 2000 and did a 360, only slower, but when they pulled her PICC line, she crashed and stayed there until this last tick bite which sent her spiraling down farther.
This doc says she doesn't have babesiosis or bartonella anymore, even though her tests keep coming up positive. Don't get that.
I pray a lot and trust God will help things to work out. But with the drastic transformation I agree she shouldn't stop the doxy, not yet.
Thank you all very much again for your support and opinions. I will continue to fight for the doxy.
Posts: 56 | From Downingtown, PA | Registered: Jun 2007
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posted
This doc says she doesn't have babesiosis or bartonella anymore, even though her tests keep coming up positive. Don't get that. ======================
Good grief!
If she gets back on IV, be SURE she is put on orals as a follow up. Stopping IV with no orals to follow up with is a recipe for relapse... and disaster.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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tailz
Unregistered
posted
If she uses a cell phone - or even a cordless phone - get rid of it. Antibiotics are only a temporary solution to a much more serious problem - chronic EMF exposure destroys the immune system and gives these bugs the edge.
Read 'Currents of Death' by Paul Brodeur and 'Cell Towers - Modern Convenience? or Environmental Hazard? by B. Blake Levitt. If you read these two books, you'll understand why I believe EMFs cause chronic infections, including Lyme.
Check your property for a transformer, too - another possible EMF source. A lot of people here think I'm nuts, but if you are sick enough, you'll consider it.
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bettyg
Unregistered
posted
mom,
please send me a private message giving me your docs full name, city/state. i'll check my 2 lists to see if they are on APPROVED list or not!
what other large cities do you have close to you? show 4-5 with closest firST, AND I'LL SEND YOU MORE!!
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posted
I am so sorry you and your daughter are going through this and I agree with all the others above that you seem to need to consider changing doctors.
I have a teenage daughter with Lyme as well and I can identify with the joy you feel when the treatment is working and you have your sweet girl back..
.and the sheer terror and even rage you feel when your doctor decides to abandon treatment that's working...it feels like the bottom has fallen out of your world.
Please look for a good LLMD...and God Bless you and your family
Elle
Posts: 217 | From New Jersey | Registered: Apr 2007
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