posted
My dd10 has been experiencing lyme rages almost every day for the last two weeks. She has that wild look in her eyes with the extremely large pupils. School is starting next week and we need to get a handle on this quickly.
Please help-what can I give her to help calm this down. She is currently taking Omnicef and Biaxin.
Posts: 131 | From Nebraska | Registered: Apr 2011
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posted
I don't know. As an adult I deal with this. My LLMD is suggesting Lithium-Orotate for this. This is an over the counter supplement not to be confused with the pharmaceutical drug Lithium.
You may wish this discuss this with her LLMD. It is the worse symptom from this disease.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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surprise
Frequent Contributor (1K+ posts)
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posted
Dye free ibuprofen can help. Also a binder. Then keep bowels moving.
Hang in there, so hard, I know.
-------------------- 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
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Keebler
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posted
- Lithium-Orotate is very sedating. Anything used to calm her down could also make learning so much harder.
Toxicity may be the main problem. Toxins from lyme and also having to process the medicines - all can create a backlog of toxins and lead to all kinds of stress.
Ibuprofen caused the blood vessels to constrict that can be very hard on kidney function.
What is her liver support? Her adrenal support?
Both are necessary to help with mood reactions to the toxins. The summer heat may also just be too much for her nervous systems to handle.
Food additives can also be worse for those with lyme.
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- She may not be able to handle going back to school at this time, especially if the school is not air conditioned.
I'm thinking if this were myself, I would really need to stay away from school and figure out another plan for a couple of months, at least.
If she has ANY inner / middle ear (vestibular) symptoms, especially. Biaxin can affect that system, too.
Or maybe some classes and get a tutor or some?
The extremely large pupils are a sign that various nervous systems - & adrenals - are overwhelmed and just not able to function as they should.
Will she have a cot where she can go ANY time she feels the need to rest? That is very important that she can monitor her own needs and has a place to rest whenever needed - whenever - even if in mid-sentence if a wave of exhaustion or
being overwhelmed just hits.
Also to consider at school: chemicals from cleaning, new floor or carpet, new vinyl products, magic markers, etc.
Noise: bells, clicking of clocks, lockers, kids' movements
Lights: Fluorescent lights can be very hard for many with neurological lyme.
Just some things to consider. I hope she pulls out of this but a week is really no time at all and it's such a huge task even for an adult to turn this around in a week's time.
Good luck.
-----------------------------
If she needs a specialized education plan, rather than even mention lyme, IF she has any of these vestibular symptoms, they could help here get an adjusted schedule, etc.
VESTIBULAR SYMPTOMS - notice how so many also go along with lyme (as lyme really affects the ears) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- She might also be assessed for Bartonella. That can cause more mood problems, if I recall correctly.
The Human Side of Lyme - An Inhumane Disease of the Brain
Deliberations of a LL psychiatrist who evaluates . . . Lyme and other tick-borne diseases of the mind, sharing case histories . . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Can you back off the meds to see if it's a herx and try to detox? Hope something works that has to be so hard.
Posts: 323 | From Michigan | Registered: Sep 2006
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Carol in PA
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posted
Is your daughter getting magnesium and other minerals?
Can you give her fish oil?
Both magnesium and fish oil help all the cells to function better, and will help the liver to detoxify poisons. When the cells are working better, the person will be less irritable.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This is in the Liver Support Links posted earlier but may be helpful to post separately. Part of this is written with children in mind.
Make no mistake from the article title below, many (of not most) with lyme fall somewhere on the autism spectrum due to the way lyme affects sensory function, etc. This article is about lyme treatment and support but the title was arranged for a conference in Autism.
Page 80-82: General Detox Support -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Did you daughter possibly have a recent vaccination?
Those with lyme tend to react much more adversely so be sure to contact her LLMD before any vaccines. But, if she may have just received one in preparation for a new school year, it's just a question. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I second the suggestion to back off the antibiotics a bit. And/or maybe changing one of both of them.
For symptoms, it might be okay to use psych. meds such as Abilify or even something like Ativan short term. But long- term, that is a band-aid and not a treatment of course. (And using 1/10 or less of the suggested pedi dose at first.)
Posts: 108 | From US | Registered: Apr 2012
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posted
No recent vaccinations. Paper on Autism looks very informative. Need more time to sit and read it more carefully.
Magnesium is only in the form of Milk of Magnesium. Chronic constipation since born but that we have never been able to get a handle on despite many different meds, tests, and diets. Better than it ever has been but still not every day like it should be.
Unfortunately, she is not on many supplements for detoxing and support due to multiple IgE food allergies. Last year she was placed on a feeding tube and went elemental formula only due to some many known and unknown food allergies. It has been a blessing because she has thrived and gained much needed weight. Downside is we lose the benefits of all the alternative meds. No gel caps of any kind-serious pork and soy allergies. Most liquids have grape oil (allergic) or some other ingredient in them that she can not have. It is a terrible catch 22.
She already has a IEP in place. Missed 6 months of school two years ago. Been dx'd with Pandas, CVID (montly Ivig), and Eosinophilc Esophagitis. Lyme was actually the last piece of the puzzle which came in 5/11.
Now I'm stuck trying to balance everything and not doing very well. My son and I both have Bart but have been unable to treat her for it because Rifampin only comes in GelCap. The risk of anaphylasis is too high even after removing the capsule.
Some days I'm lucky if I can take care of myself let alone her and her brother.
Posts: 131 | From Nebraska | Registered: Apr 2011
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Keebler
Honored Contributor (25K+ posts)
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posted
- Oh, my. Oh, my.
You have become so well versed in all this (sadly) and I really hope many things improve for you and your family - right now.
Wish my magic wand would start working one of these days. Hope others will have some key suggestions for your daughter. Take care and just hold on, while still breathing. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I feel for you as my daughter seems to have had Lyme settle in her gut. With treatment for Lyme since December, things are greatly improving.
I am glad the elemental is helping your daughter and she is gaining weight. You may look into the SCDiet when she is ready. It's the diet we have had our daughter on for almost 6 years. It is the best thing I have ever done! Go very slowly and test each food.
We find that the diet keeps her as healthy as possible and her gut is healing now with treatment and her food allergies are greatly improving and has not needed an inhaler since last year.
Also, as far as detoxing, how about epsom salt baths? They help us tremendously.
Also, could you open a capsule of milk thistle and mix into the elemental formula if she is taking by mouth and not allergic? Milk thistle is another fav of mine. I'm sure others will have some better suggestions.
Hang in there. You are doing a great job. It's NOT easy, I know.....
-LAXlover (75% of family now has Lyme, etc)
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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posted
Would you believe my dd is allergic to ragweed so she can't have milk thistle. I'm telling ya-it has been a real up hill battle!
I quickly glanced at the SCD and I can tell that there are a lot of big conflicts with her IgE & IgG allergies. We need to just be happy if and when she gets any foods back.
Epsom salt baths & skin brushing have been our detoxing for her.
Posts: 131 | From Nebraska | Registered: Apr 2011
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Carol in PA
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posted
Epsom salt baths will provide her with magnesium, so that's good.
You could also look into magnesium oil, applied to the skin.
Would she be able to tolerate fish oil? The Omega 3's are vital to improve cell wall integrity. They reduce inflammation and provide the liver with some of the building blocks to make glutathione.
posted
Thank you for the link Carol. The OmegaBrite looks like it contains soy (tocopherols)- another allergy.
Posts: 131 | From Nebraska | Registered: Apr 2011
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posted
I am in a similar situation with allergies and esophagitis. Has she had an endoscopy to diagnose the eosinophilic esophagitis? Or is this a speculative diagnosis?
I think the rages you describe can often be caused by meds themselves. That was our experience. Assuming it was a "herx" proved not only wrong, but dangerous. Especially with your daughter's profile, I would consider taking her off one at a time to see if the rages improve. You could then try something else.
I don't know how someone with the esophageal and GI issues she had can possibly tolerate antibiotics. Another catch 22.
Posts: 108 | From US | Registered: Apr 2012
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Keebler
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posted
- Wonder if a child could use a RIFE machine? Many who can't tolerate antibiotics or for whom they did not work have found help with RIFE.
posted
Pug7-she was dx'd three years ago with EoE by local doc via Endoscopy. For the last two years she has been treated out of state by a children's hospital that is one of the top EoE hospitals. They manage her Gtube, quarterly Endoscopes, and food trials.
She has been on the same meds for over a year. If any, they need to be rotated with something else. But again her allergies come into play with what she can and cannot take. Through trial and error we have found these two to be "safe" for her.
There has been a spike in her raging after almost a year without any attacks.
Posts: 131 | From Nebraska | Registered: Apr 2011
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posted
You didn't mention if your daughter is under the care of a Lyme-literate doctor (LLMD) or maybe I missed it.
You need to get her to one a.s.a.p. if she isn't.
Perhaps contact the best Lyme pediatrician, Dr. J, and ask your physician to consult with him. I sent his contact information in a pm to you.
Posts: 8981 | From Illinois | Registered: May 2006
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Use your edit key when you click on the website above and find the word, "rage".
It is very high EPA - omega 3 - to reduce brain inflammation.
It will help, not cure (alone). However, it does come in a gel capsule which you might be able to poke open (with a pin) and apply topically to her skin.
I do this with vitamin E capsules sometimes for sunburns, though real aloe gel is even better and I do have two aloe plants (we live in FL).
The large pupils = what happens when a child is on Ritalin too.
Dilated pupils is also linked to autism.
Been there....dilated pupils + ADHD + autism + (my son).
When out in the sunlight, to protect her eyes, blue-blocker sunglasses would be helpful too.
Though the interplay of the neurotransmitters is extremely complex! And VERY VERY difficult to re-balance.
How is her homocysteine level, B12 level, vitamin D level, cholesterol level?
Since the MTHFR gene defect is relatively common, it would be beneficial to know if she has that genetic defect which prevents persons from metabolizing folic acid to its
USEFUL FORM.
The reason I mention cholesterol is because researchers just found a link between LOW cholesterol and autism.
My son's cholesterol level has been as low as 86 (total!). Not good and not healthy. He becomes depressed when it drops and has to load up on eggs for a few days (over easy to prevent the destruction of MANY beneficial nutrients in the yolk).
Yes, lithium may indeed help, but is so darned hard to balance because we need so little of that mineral.
The antibody she needed was/is IgG1k...the K = kappa, light chain. It impacts IgE Fc!
Yes, there is an expensive man-made version of IgG1k that is used for moderate - severe asthma when all else fails.
When considering drugs/supplements, it maybe beneficial to look at topical applications (like Mg is available in a patch or can be applied topically for example) and B6 is available sublingual (as is B12)...under the tongue for very fast absorption...if needed.
We DO absorb things thru our skin.
Strange as it may sound, there are "cooling helmets" to reduce brain inflammation.
Some motorcycle helmets trigger cooling if the rider gets into an accident...to buy time.
Maybe get off or change meds. Detox. Fish oil, olive oil, olive leaf extract...maybe juice and add olive leaf extract and aloe vera juice to it. Infrared Sauna. Talk to your doc or get a second opinion.
Posts: 697 | From CA | Registered: Dec 2011
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tick battler
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posted
Hi - so sorry you are going through this with your daughter - I can relate - my three kids have had similar issues in the past. I have been researching PANDAS for one of my boys and recall reading that the enlarged pupils can be from that.
My children have recently been dealing with strep and we have never ever had such wild behavior and rages in my daughter, who is 5. I know bartonella can cause them as well but just wanted to mention the strep possibility in case she is having a PANDAS issue.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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lpkayak
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posted
NEMOM
who told you this or how did you find out?
"Would you believe my dd is allergic to ragweed so she can't have milk thistle."
i am so allergic to ragweed that when they skin tested me i went into anaphlactic shock. i take milk-thistle all the time. no one ever said not to
i am wondering how your daugheter is doing.
when my daughter was 7-12 or so she had awful rages. i never thought to medicate. i dont know how we survived it. but she mostly did it around me-not at school.
she is almost 30 now-doing well in many areas but still has some issues with mood. i dont know what to tellyou except you are not alone and good luck
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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MichaelTampa
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posted
quote:Originally posted by Keebler: - Fluorescent lights can be very hard for many with neurological lyme. Good luck.
Just to add to this thought, when I had rages, some were triggered from fluorescent lights while others were triggered from wireless signals (such as from cellphones, routers, ...).
Another possibility to particularly keep in mind for kids is reaction to strep, mycoplasma, or other infection, which could be an infection the child has, or could be just from exposure to someone who is carrying this infection, even if asymptomatic. (For more info, google PANDAS, pediatric autoimmune neuropsychiatric disorder associated with strep.)
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
Have you used a compounding pharmacy at all?
Posts: 108 | From US | Registered: Apr 2012
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momlyme
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Member # 27775
posted
My daughter had terrible rages. She was that way all of her life. Like a ticking time bomb.
Getting her out of the house we were living in that had toxic mold was step one... getting the toxins out of her was step 2. She did not have Lyme or Bart... but had terrible allergies and asthma.
Look for the link at the bottom of that page: "Asthma and Allergies Disappear."
-------------------- 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
I hate to bring this into the realm of possibility, but it is possible that an antipsychotic such as Abilify might help. If your child can tolerate it, that is.
In our experience, you only need to take it once and it has a long lasting effect. Abilify has a long half life. It seems to heal agitation in the brain in a way that gives relief for weeks or months, even with just one or two doses.
There are other similar meds with shorter half lives too, which could work for acute rages versus a longer term mood disorder. Risperdal for instance.
I am not a fan of big Pharma but these meds really can do wonders. And sometimes it is good to treat symptoms regardless of whether the cause is Lyme or something else.
Posts: 108 | From US | Registered: Apr 2012
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