posted
My daughter is being treated for Lyme (congenital) and is currently on Duracef. (All of my children have congenital Lyme, however she is the most symptomatic).
Her symptoms are mostly neurological. She has OCD tendencies, oral motor ticks, difficulty falling asleep, mood swings, tantrums, etc.
The most difficult "symptom" for me and for my other kids is her mood and her behaviors. She is basically a brat. But I know that it is not always her choice - she simply cannot control her moods. In school, she excels academically and she is able to hold it together all day. Teachers love her and she has friends.
At home, she is mean, nasty, rotten. She has tantrums that a 2 year old wouldn't have. When she is upset and if she gets a "time out" she will scream bloody murder, kicking and hitting walls. It takes a good half hour for her to calm down.
I took the recommendation of people from this forum and her LLMD and took her off of gluten about 5 months ago. I thought this was helping at first. But now I am not sure that it's helping much. However, she occasionally has gluten when she is on visits with her dad, who is not consistent with supporting this.
Should I put more effort into her diet, hoping it will really make a difference? I feel like it's not helping although at first it was.
Could milk/dairy be a culprit? Or is it just the actual disease itself that is making her so miserable?
I will take all the advice I can get. It gets to a point where I am constantly on edge waiting for her to explode.
Maybe supplements? She is on probiotics and also starting nystatin this week.
Thank you CB
Posts: 114 | From NY | Registered: Jul 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Perhaps looking into treating her for parasites which can play a MAJOR role in Lyme disease. Check out the symptom list at Humaworm and google parasite symptoms.
This possible co-infection is often overlooked even by LLMDs. PLEASE don't ignore this and also do a search on here for parasites.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
My DS7 was exactly the same until this past year. Now he is just as miserable at school as he is at home. Life is a daily challenge. He's had so many diagnoses and we have seen so many doctors. Our family life seems to revolve around his moods, despite our best efforts otherwise. Last month we saw an LLMD and started treatment. He's been on antibiotics for nearly a year for P.A.N.D.A.S. when we finally got a positive Western Blot back 2 weeks ago!
Recommendations - detox! Our LLMD is a MD and ND, and has him on several supplements (several different detox sups, omega-3, probiotics, s. boulardii, whole food supplement, anti oxidants, artemisia), as well as a combo of antibiotics and nystatin. We have huge flexibility in dosing, as his system is so extremely irritable that we are going ahead slowly as tolerated. We would not survive otherwise. We're only 1.5 months into treatment, so I don't know how this will go, but so far, so good. Maybe you could find a naturopath who could help?
Posts: 41 | From Ontario | Registered: Apr 2011
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Try going on a week vacation and see if she is better.
My daughter had terrible moods... at 7 you would have thought she was constantly PMSing... it was really terrible.
It continued for years.
I am amazed... since we left that house... she is wonderful. She actually asks how she can help. We laugh and sing and joke around... and life is pleasant.
Our house tested off the scale for toxic mold (stachybotrys) with the ERMI test from mycometrics and air testing ... since then, I have found other labs that test for half what I paid.
It is worth testing. In my experience, mold can be a huge contributor.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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I am glad to hear your daughter is doing so much better!
Is there anything you can do to a house with mold, except to move?
thx, racer
-------------------- Me - Igenex: IgM: 41IND, IgG: 39IND, 41+ but Plasmid PCR Positive Kiddo - after 1 year IV - positive Lyme culture (before IV: IgM:31,34,41,83-93 IND; IgG: 41+++, 66+) Posts: 133 | From CT | Registered: Feb 2011
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I'm not sure yet. Some say yes, some say no.
We are attempting to clean it... we have gone to extreme measures. We are using a high output ozone blaster, industrial hepa vacuum, negative air pressure air scrubber, spraying all the surfaces with a mixture of hydrogen peroxide, vinegar and boric acid and we will retest soon.
Not sure I want to test it out with our health.
My whole family was very sick. We are all greatly improved.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
THanks everyone for you responses. I have wondered specifically about the mold. I am so overwhelmed in general with everything in life (as we all are, I am sure) that the thought of dealing with mold puts me over the edge.
I am going through a pretty horrible divorce and am now a single mom of four kids. I am a teacher and getting ready to go back to school, I have lyme and co's, and two of my kids are currently in treatment for lyme. Thankfully I am so much better than I was back when I was diagnosed in 2008, but still have some pretty bad days.
I guess all of this makes me just want to figure out what I can do to help my daughter, with the least amount of effort (lol). Her moods/tantrums/meltdowns really make the days rough.
Tonight at bedtime, she completely broke down, sobbing hysterically, saying " I don't feel good!!!" until falling asleep. This was after telling me and her sibling how much she hates us.
I will certainly take all of your posts and see what I can do for her. Thank you!!!
Posts: 114 | From NY | Registered: Jul 2011
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
You said your daughter has tics. Magnesium can help this.
posted
We have had mood swings with our 5 year old daughter too- for her it is Bartonella causing emotional outbursts. We step up treatment for bartonella and her moods disappear. She has also been gluten and dairy free.
Posts: 174 | From UK | Registered: Oct 2009
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posted
Treatment has been chosen by her LLMD for her particular case, she also has ehrlichiosis, so is tailored for her needs. We have used amoxicillin, azithromycin, A-Bart, Golden Thread Supreme and Cumanda all at different times. She is presently on A-Bart and Cumanda, we have just increased doses and she is herxing again after nearly 2 years of treatment. She had plateaued on antibiotics, so now she is on herbs.
Posts: 174 | From UK | Registered: Oct 2009
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posted
My 5yr old daughter used to have these outbursts. She would hit me and kick me and scream and cry every time she couldn't get her own way.
This was one reason I had her tested in the 1st place. She has bart, babs and Lyme. I strongly agree that the bart was causing this symptom. She did zith and bactrim for 4 months and no more rage. She def has her 5yr old moments, but not like it used to be. She is only on bar-1 and bab-1 now, we will see how she does.
Good luck
Posts: 908 | From Albany | Registered: Nov 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
It does sound like bartonella rage especially with the ticks. It is such a nasty infection. I just hated the way I felt and the slightest thing would set me off. Nerves are raw. Does she have trouble sleeping?
I hope you can find out what it is and help her.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
It sounds for me like excess of toxins, from herxes or other reasons.
I feel that omega 3 supplementation, mineral supplementation, enyzymes and clhorella could help considerably. I gave bear garlic tincture to my daughter while she was fighting lyme.
Posts: 6199 | From Brussels | Registered: Oct 2007
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I'm confused...she can hold it together at school just fine, but not at home?
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
My daughter has mycoplasma and babs in her CNS. One of her practitioners has recommended no dairy and more specifically no artificial colors. Look at labels and do not let your child have any artifical coloring. Do some research on Google and you'll find that these are pretty much non-existent in the UK.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
It sounds like you are describing my son. He is now ten and has been on treatment for three weeks. I am keeping my fingers crossed that we see improvement eventually.
The greatest improvement for us was when we discovered that my son has reactive hypoglycemia. I found that my son would be terrible after eating sugar and I had no control over what he got his hands on at school. After school he was a monster until he ate something. Also, he would go crazy searching for sugar. He was like an addict. I burrowed a meter from a friend and began taking his blood sugar. At times it was dangerously low. He had a glucose tolerance test that confirmed the diagnosis. Since we learned how to avoid the low blood sugar we have had great results. Of course we still have many neuro symptoms but the violent outburst have decreased dramatically.
I know you have so many suggestions it is difficult to know where to start. Just take it one step at a time. I wish you the best of luck. I know how hard it can be. At least you know about the Lyme and are treating it at a young age.
Posts: 55 | From Kingwood, TX | Registered: May 2011
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posted
200 mg of Zen by Allergy Research seems to help my daughter with her moods. Of course check with your doctor, to see if it mixes well with whatever else she is taking.
Posts: 26 | From BKNY | Registered: Aug 2009
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posted
You've received a great number of useful suggestions. I don't know if this will help, but it's worth a try. Read www.thehumansideoflyme.net.
Dr. S is a Lyme-literate psychiatrist who has had firsthand experience with Lyme. Click on the upper right-hand corner where it says "E-mail me" and ask her about your situation. Perhaps she can give you some recommendations.
Posts: 8981 | From Illinois | Registered: May 2006
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