rowingmom

We are really finding that ticcing is a result of toxin buildup. I would try to increase detox with epsom salt baths, and magnesium supplements. I would investigate supplementing to help the methylation/detox cycle along. I would support liver function with herbs like milk thistle, and address inflammation with supplements like fish oil/cod liver oil and curcumin. DD11 is pulsing combo abx on the weekends right now. She is now handling the pulse well (during the first three we really saw a tic/symptom flare right away), but mid-week some tics and emotional lability are resurfacing. These are resolved with increased detox - beyond her normal daily detox routine - for a day. Check out the search function for detox, methylation, inflammation. There is a lot of great information on these forums. Definately keep up the probiotics.

When we dose abx through the day, I end up waking DD11 before I go to bed to get a few probiotics into her. They then have all night to proliferate.

Most of DD11's more severe pain was due to bartonella - long bone (shin and forearm), pick-like skull pain, and especially pain in the bottoms of her feet. Rifampin/biaxin cleared these significantly and fairly quickly too. She didn't have the extreme herx that she had when we first started treating lyme with bactrim and then biaxin. We added rifampin several months later, and she just seemed to improve on it. It took at least a month on rifampin to really decrease her motor/vocal ticcing though.

I have been giving DD11 a phosphatidylserine/phosphatidylcholine supplement daily for a long time. We struggled to regain her speech for 4 years after her 15 month MMR vaccination. Our speech therapist was able to use the PROMPT method to retrain her loss of motor control over her facial muscles, but she never sang. No nursery rhymes or children's songs or anything, despite my playing them endlessly on car rides and at home. There was some mention of using phosphatidylserine with children suffering from oral apraxia (to help rebuild the myelin sheath, I think), so I thought I would give it a try. The day after she started the supplement she sang for the first time, perhaps a coincidence, IDK. We stopped phosphatidylserine a few years ago, but I started again with lyme/bart/babesia/PANS treatment (NaturalFactors PS 100, not too pricey at iHerb). Our LLMD just added in phosphatidylcholine (AllergyResearchGroup 385mg) as well.

I really don't have any experience at add, but try searching "convergence" in the forums at the top right hand corner of this page. There has been some discussion lately on PANS kids with convergence insufficiency (eyes not focusing properly) and trouble reading smaller print. Your description just rung a bell.

Even before DD11 was tested, and was subsequently found to be positive for a heterozygous deletion, our LLMD started her on the methylated forms of B6 (P-5-P, we use Klaire Labs 30mg 3x/week), folate (L-methylfolate, we use ProThera 1000ug 3x/week), methyl B12 (sublingual 1000 ug 2x/day), as well as liposomal glutathione (Essential Nutraceuticals 250mg 2x/day). We were taking P5P and L-methylfolate daily at these dosages, but I cut back to 3x weekly after some mention of the possibility of over-methylation reactions on the Lyme forum. I also supplement myself, my DH and DS with the methylated b vitamins 3x weekly. I have noticed an improved mood in all of us.

Yes, I too thought your daughter was doing better as well. Are you ramping too fast on the Abilify? Most of these kids do better on the smallest doses and have problems with larger ones.

PM'ed you.

Can I ask the name of the drops you are using. Thanks. I am in Ontario, Canada. We use Natures Harmony - Sleep Tight Liquid Melatonin. 3 mg / dropper full. We use 2 drops, so probably not much. It needs to be refridgerated.

I wonder if your son is having a die-off every time you reintroduce the azith, and that the toxins are increasing his ticcing. My DD11 sees the same increase in ticcing and other symptoms when we pulse tindamax for 3 days every weekend, with her other abx remaining at treatment dose. Her tics ramp up for the first two days and then decline for the rest of the week until the next pulse. The fact that the ticcing dies down while he is still taking azith (for the last 2 days of the pulse) makes me think that he is not reacting to the abx, but to die-off toxins.

Just thinking since DD11 has PANS/lyme - or spirochetes hiding in joints/nervous system?

Oh, dear. DD11 was on biaxin/rifampin for 8.5 months and seemed to do well with this combo - better than she has ever been since bitten in 2008. Her ticcing did not subside until we added rifampin. We have now completely switched to mino/azith/malarone (for babesia although she tests negative, and has had no herx to this combo) and she is the best she has ever been. Shin pain almost gone, ticcing gone, happy, compliant, well spoken. The kid I have always known she was. There now I am jinxed. LLMD told me at our last visit that mino and azith may help to rebuild myelin.

Wonderful, Wonderful news! Isn't it so good to find the beautiful child hidden under all that pain. I am so happy for you getting a glimpse of your real daughter, and happy for your daughter for having a mother that keeps on trying.

ADHD is one of DD11's Dx as well. We declined ritalin because of her motor/vocal ticcing. All of her PANS symptoms, as well as an inability to concentrate and a real decline in executive function, wax and wane with viral infections.

We have been able to significantly decrease DD11's melatonin with lyme/bart treatment. She is taking B12 shots 3x a week but we still use a little melatonin. We use the drops, not the dissolving pills, and we are down to 2 drops in the evening. We have tried going without, but DD says she sleeps better with a drop or 2. I'm not sure if this may be placebo effect.

Great article! Thanks for sharing.

Just a thought - if you give melatonin at too high a dosage, sleep will come quickly, but you will not stay asleep through the night. It would perhaps be better to give a smaller dosage (1mg perhaps) along with an XR version to cover later waking.

The daughter (who presents with autism, PANDAS) referred to in this blog was diagnosed with PANDAS by Dr K. http://www.regardingcaroline.com/tightrope.html Abx were used for a short time, but treatment has moved onto an herbal protocol: "Here's what we use now: Goldenseal (GS) -- 500 mg, 5x per day Oil of Oregano (OoO) -- 3 softgels per day Berberine complex -- 200 mg, 4x per day As needed if bacteria symptoms increase: Neem Plus -- 1/2 cap, 4x per day Alimed -- 1-2 drops per day As needed for acute illness only: Olive Leaf Extract (OlLE) -- 200 mg, 4x per day Elderberry -- 1/2 cap 3x per day (both are pure encapsulations)"

This sounds a little late into the game for herxing, unless you have started something recently. DD11 usually has her herxes within a week to 10 days of adding/switching to something new. Just my thought - perhaps toxins have been slowly building and more detox would help.

A couple of great websites are Mark's Daily Apple and Robb Wolf's Paleo Diet. A good search engine for paleo recipes is Chowstalker. Low carb GF/CF isn't really limiting, although you need to change your perception of what real food is. Good for you for discovering how to improve your health.

I am so glad to hear of some success!! You will definately need probiotics on a long-term abx protocol, and detox to help with die-off reactions. Keep at it, your daughter is so lucky to have a Mom like you - one that doesn't give up, even when the going gets tough!

DD11 gets this rash mostly on her chest, trunk and upper back, perhaps every 3-4 months. I have been sick with a sore throat for a couple of weeks, although I am recovering now, and she developed the rash about 1 week ago - it has pretty much faded now. Darned if she ever has it when we have a doctors appointment - we see the LLMD again in 2 weeks. She has not been sick, although she did have a bit of an emotional lability flare at the same time as the rash. All of her other symptoms are at a good baseline. At the moment she is taking azithromycin/minocycline/malarone.

Sorry, but I think I would say New Years is Jan 1. Perhaps he is talking about the days of the week. Just to make you feel better, my normal 16yo son asked me today when Halloween was, Oct 30 or 31?

Just my thought - I think calf cramping is sometimes due to mineral inbalance (magnesium, calcium, potassium) - whole body muscle pain (as in flu-like) is a symptom of lyme, but I'm not sure about cramping. According to Buhner, lyme bacteria require magnesium which is why so many with lyme show deficiencies. The body also needs a good amout of magnesium for muscles to function optimally. Buhner realizes that some LLMDs suggest no supplementation with nutrients that feed spirochetes in order to weaken them, but this also weakens the body's ability to combat the infection and heal. The parasitic spirochetes will find nutrients (magnesium, glucosamine, etc.) where ever they can get them, and will still be removing them long after the body has ceased to function properly. My thought (and Buhner's and our LLMD as well) is to supplement and strengthen the body by replacing the nutrients that have been parasitised and to attack and weaken the bacteria using other means, Abx, herbs etc. IMHO. I would start lower. Have you tried Epsom salt baths - a way to increase Mag. that might not be so harsh, and most find it detoxing and soothing.

Could you please elaborate on the very, VERY slow weaning protocol. Thanks so much. We have tried several times to reduce multiple Abx combos down to one Abx with herbal support, but ticcing has broken through each time after a couple of months.