posted
She got it from me when I was pregnant with her. I didn't know I had it. From infancy she's had major mood problems. I remember her at 6 months old screaming and pulling her hair. When I held her arms down she pinched her legs. She was like that a lot.
Now she still has fits like that, usually over something ridiculous like not being able to find some socks she wants to wear. She hits herself, says she wants to die, cries hysterically, screams, etc. She sometimes hits her sister and even hit me today.
She's been getting worse since starting treatment two months ago. Of course, she herxes about every 4 weeks, which is now. Plus she is taking regular abx plus herbal ones (samento/banderol) and each time there is an increase she gets infinitely worse for a few days.
In the last week or so she's thrown a lot of fits over feeling like she has to pee but nothing is there. I know it's not a bladder infection. Not only would her abx treat that, but I also tested her with those test strips from the pharmacy.
I know it's Lyme in her bladder. She's had problems with frequent urination since she was a baby. I had the same thing, BAD. Like urinating, getting up and walking to the bathroom door and then turning back around because I felt like I had to go again.
Hers seems to be getting worse instead of better, but I know everything gets worse before it gets better. I want to take her to a doctor, but what are they going to say? Her llmd is far away and expensive. So if I take her to her regular pediatrician, I can just hear him saying "Huh? Lyme disease? No, that doesn't cause bladder problems. Oh and she's been on antibiotics two months? You need to stop giving them to her because she would have been cured after a couple if weeks...."
You know, same old ignorant doctor crap....So when she throws a fit and it gets physical like hitting herself or others, or uses abusive words like "I hate you, you're stupid!," what do I do? I understand her rage and lability, trust me I've been there. But as an adult, I at least had enough self control to not hurt others. I hurt myself physically, but I definitely don't want her to do that. It hurts my heart.
I can handle her fits now that I'm better, but how am I supposed to teach her that being abusive is not acceptable when she can't really control herself? Although she controls herself at school!!! What's the difference?
And what do I do about her bladder?
Posts: 107 | From Hesperia, CA | Registered: Feb 2011
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Ah, your post sounds very familiar with me!
Are you giving her anything for detox? Lots of water, lemon if possible, exercise to sweat, Epsom salt baths or Epsom cream rubbed in, milk thistle, glutathione, very high quality high count probiotics, and perhaps binders like charcoal or bentonite caps 2 hours each way from supps/meds, and make sure those bowels keep moving! Watch out for yeast overgrowth!
My daughter also has/had explosive language like this, like a verbal tourettes.
Recently had a neurotransmitter test done, she is producing excess of everything, really. Added supplement phos. serene (sp.?) see it help, but the test also recommended a special neurotransmitter supplement, which should come today.
Hang in there- it has been a long road- and no, your regular Ped. will not understand, at all.
Hope some of my suggestions may help...
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Also, there are herbal and homeopathic remedies available to also aid with detox- we do those, too.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
posted
Hi Jennifer, from reading your post the word Yeast or fungus comes to mind. Something to investigate here. Make sure the intestinal flora is as good as possible and maybe try to get some good antifungal. The antibiotix and the Lyme promote fungus. Its systemic. Peace and courage!
-------------------- "They that are whole have no need for the physician, but they that are sick: I came not to call the righteous but sinners to repentance"(Mark 2.17) Posts: 149 | From Amsterdam | Registered: Jul 2011
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Since I deal with seizures and feeling like my body is just on the brink, always about to send me flying, I can relate.
Her fits could be a kind of seizure activity from the NMDA neuro receptors being too irritated or agitated by ANY kind of stimuli,
LOW BLOOD SUGAR?
FOOD REACTION?
HYDRATED? Something as simple as a big glass of water can help me better handle stressors - sometimes.
CALMING NMDA overload:
Does she take magnesium, taurine, B-6, fish oil? These are all good to calm an overactive NMDA "wired" effect.
"Detox" efforts may be too much, or you may need more. If her body seems to be overwhelmed from any "detox" action, be sure to back off.
I prefer the liver-kidney SUPPORT approach over direct detox unless under supervision by one of the kinds of doctors with the groups below.
Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.
===========================
SENSORY OVERLOAD ?
Lights, Patterns, Action, Scents?
Do you avoid all fluorescent lights & the new "energy" light bulbs?
Note all the factors that stress those with inner ear disorders (vestibular). All these symptoms are also lyme symptoms. From my own experience, whatever I can do to make a calm environment helps my seizure stressors calm.
That includes everything from the kind of light bulbs to what goes on the wall and the fabric patterns in view.
THE HUMAN SIDE OF LYME - discusses the neuropsychiatric issues that often come with toxic infections -
[ 02-09-2012, 01:40 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
manybites
Frequent Contributor (1K+ posts)
Member # 33750
posted
I hope she does not have bart and babs as well.
My son was like that since little agresive hitting his sister.He has bartonella as well.
When I put him to treatment for babesia was horrible.HE would hide and say I HATE my life and sometimes hit me or pushing the medications.
Only in babesia treatment and bartonella he started laughing again.Blader issues I thought is bartonella.
I have bartonella and I treated Lyme with bionic from germany and was already for months to years in bart treatment.A car accident made it to come back .The blader and the gut FALL OFF I have had to wear a belt.Bartonella( and babesia) both made me have the urgency.
MY cd 57 was even high since 3 years ago at 110 and I knew from bone shin pain and tooth aces and decades of infected with bartonella that this is causing the blader issues.
As you treat lyme very posible she has bartonella and her rages becomes worst.try to detox her.
and over time that the treatment will reduce the infection it will get better.Just confort the child as much as you can .
I think the brain is already sensitive due to lyme and might posible have bartonella.
Focus on detox drops and give the child probiotics.
The ND gave my son Clorella and fish oil.
Posts: 1379 | From disable | Registered: Aug 2011
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Search Google: d-Mannose, child+bladder
Also some foods, beverages & additives can irritate the bladder. You can Google for those. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
I was never tested for bartonella because of the cost. Based on what I've read I do believe I had that too. So it would make sense that she'd have it too. I didn't know it caused bladder problems though. Actually, my bladder was the first thing to get better when I started treatment, which is why I'm a bit baffled by hers getting worse.
Posts: 107 | From Hesperia, CA | Registered: Feb 2011
| IP: Logged |
Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
I am so sorry you are going thru this. Parenting is hard enough when everyone is well.
Lyme is so kind that it sometimes can present it differently in other people. With your bladder getting better doesn't mean her body will react the same way. It could, but Lyme is so special - UGH
You are am amazing person and mom going thru all of this - just hold on to what I do - It will get better......
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Look into D-Mannose for bladder problems. The reviews at iHerb.com are pretty good for it. http://www.iherb.com/D-Mannose
. You said, "From infancy she's had major mood problems. I remember her at 6 months old screaming and pulling her hair."
I wonder, was she having headaches too? I know of a woman, who as soon as she could talk at age two, told her mother that her head hurt.
What is she getting for liver support. Magnesium Foods high in magnesium, like almonds, almond butter, beans, bean soup, baked beans Fish oil Silymarin (milk thistle) Cruciferous vegetables, like broccoli, cauliflower
Many people here have noticed that headaches and other symptoms improved when they took liver support supplements.
This reduces inflammation and improves blood circulation to the brain, improving brain function. There are other brands with a very high EPA ratio also.
p.s. I forgot to say that glutathione might help. The web sites for children with Autism have information about this.
[ 02-10-2012, 01:00 AM: Message edited by: Carol in PA ]
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
posted
Jennifer: I would try something that my doctor put me on several months ago. It is called the GAPS diet. The mood symptoms you are mentioning could be candida etc poisoning her body and thus, she has these terrible mood swings. Does she tend to crave starchy foods and the like... this is very typical with kids nowadays but also those that have gut disbiosis. I think those of us treating lyme have gut disbiosis just because of all the stuff we are bombarding our systems with-- For me, it was huge.
Gapsdiet.com. It is written by a brilliant doctor out of the UK and I think you may find some relief here. I think it is worth a try. I will tell you the diet is not easy... but I feel so much better on it and for the first time, I am making real strides-- The books is written very well and explains what I tried to above in very explicit helpful ways. I hope this may be a resource for you. My GP's office ordered it here because they have seen how well I am doing... We will have to see about my doc in NY Best-
Posts: 859 | From Southeast | Registered: Mar 2011
| IP: Logged |
posted
I should add above that this diet balances your blood sugar-- I was hypoglycemic and pre diabetic and my sugar has gotten to 74 now. It was at 100.
Gut and Psychology Syndrome - Dr. Natasha Campbell-McBride
"Gut and Psychology Syndrome reveals the true connection between nutrition and brain function. Written by a neurologist and practicing nutritionist it is a no holds barred investigation into the real facts behind why todays generation of children have the highest incidence of learning disabilities and behavioral disorders ever. Reviewers have praised it for its wealth of information and advice. Presented in a style that will benefit both parents and practitioners, this book is definitely one to read and keep for reference."
Posts: 859 | From Southeast | Registered: Mar 2011
| IP: Logged |
jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Sometimes pain and/or urgency frequency for kids is a yeast infection. Probiotics will help.
We put Florastor for Kids in 8 oz water bottles for my 8 yr old. She can drink it right after all the meds she takes.
Try to get her to walk everyday for 30 minutes straight to help flush out her lymphs. This will help will drainage and any toxins she is accumulating.
Good luck.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
| IP: Logged |
posted
I can totally relate! My three daughters have Lyme and coninfections gotten in utero, before I knew I had tick born disease. ... very difficult infants.... to say our lives are challenging is an understatement. My husband also in tx.
In addition to other symptoms, two of them have had significant rage issues, and one has had bladder issues in the past. After a long treatment history and many battle scars, I am sure the rage is bartonella.
After years of Lyme tx, my daughter's bladder issues seem much better. My own IC is finally starting to resolve - I think it just takes time and finding the right Lyme/Bartonella tx.
Detoxing really does seem to help. With my youngest, I give her liposomal glutathione (I use Essential Pro) and she's back to reasonably calm within the hour.
Other detox strategies that have worked include: one whole lemon squeezed into water (with some stevia or sugar for flavor), AlkaSeltzer Gold, Activated charcoal. They sound weird but they really can work wonders. I mix the lemon water with the AlkaSeltzer Gold (and stevia) to make fizzy lemonade.
Of course, getting the patient to take the meds when in a rage is another issue.
My husband's bartonella rage has been brought to it's knees by A-Bart, thank the lord. His social anxiety is gone too, go figure.
Trying to set behavior standards is really tricky, and I still struggle here. Truly it is the bartonella/lyme taking over, so I try not to overreact - but my instinct is to punish bad behavior so its a rocky road, right? My girls also behave great at school, and save it all up for me!!
I am also trying to get into the GAPS diet for my family - the book is (relatively) fascinating. Gut and Psychology Syndrome.
In my experience, avoid the regular doctors. As much as I want them to be a part of the treatment picture, their igorance, rush to judgement and condescending attitudes prevent it.
Getting by one day at a time... Best of luck....
Posts: 6 | From Mass | Registered: Oct 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Best-
Printer-friendly view of this topic