rowingmom

Have you tested for KPU?

Deleted. Sorry.

In our case abx triggers a die-off, the toxins from which produce ticcing, both motor and vocal. My DD11 is pulsing abx for lyme/bartonella for 3 days on/4 days off per week. For the first day of the pulse her ticcing increases significantly, but then declines (while still on abx) as we increase detoxing protocols (mostly using epsom salt baths). By the end of the 3 day pulse her ticcing has resolved and does not reemerge until the beginning of the next pulse. She gets about 150 billion probiotic cultures/day both on and off of the abx. We do not address yeast growth other than using probiotics. I don't think that yeast could be producing her symptoms as soon as 5 hours after first administration of antibiotic and resolving on no other changes but an increase in detoxing.

Not to derail this post but we are also seeing big improvements after 1.5 months on a pulsed antibiotic protocol.

All great until you get to the end: "PANDAS It has been proposed that an autoimmune response after a streptococcal infection may result in obsessive-compulsive disorder or tics in some children. This concept, known as PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections), is controversial, and the current evidence suggests that it should be considered a yet-unproven hypothesis. Until a causal relationship has been established between PANDAS and GAS infections, routine laboratory testing for GAS is not recommended to diagnose this disorder, and long-term prophylaxis or immunoregulatory therapy is not recommended." Thanks, AHA!

Also please check out Consumer Reports on the arsenic content of rice (especially brown, even organic).

Those tongue lashings (from both the family doctor and pediatrician) were very uncomfortable, and left me seriously questioning whether or not I was doing the right thing. But looking back after 1.5 years of treatment (including behaviour therapy), DD11 is very improved. She is HAPPY. I doubt whether dosing ritilan and clonopin would have had the same effect. I handled it by politely saying "thank you" and walking out. There was little sense in trying to educate them. Wish we Canadians could find some helpful pediatricians.

We specifically treated bartonella for 1 year with rifampin/biaxin (BW herbals and homeopathic detox added to that mix) and for the last 3 months of that, added pulsed tindamax. Throughout that time DD11's symptoms were still there, although mostly in the background. Shin pain would return during exertion - dancing class, or while running in gym class. Low level emotional lability and a general negative outlook remained. Rages declined (maybe 4/week), as well as fatigue and most of her motor/vocal tics (which would only flare if she caught any viral or bacterial infection). Symptoms would gradually return if either rifampin or biaxin were removed or exchanged for an herbal protocol. It took about 3 months of rifampin/biaxin before her pain/ticcing/emotional symptoms gradually started to decline to a new baseline. We began treatment in June 2011, so her worst period was during the summer. I am sure being at the cottage with friends, swimming etc. probably distracted all of us from the worst of it. After a year of that our LLMD has decided to treat any protozoan/parasitic infections that may not have shown up during testing (ie babesia, toxoplasma etc.) with 3days on/4days off pulses of malarone/azithromycin/tindamax/minocycline. For the first 2 pulses she had symptom flares (expecially evident with emotional lability and motor ticcing) for the first two days of the pulse, things started to resolve by the third, and were great during the rest of the week. Now she has a little emotional lability at the beginning of the pulse but no increase in other symptoms. I can say for the first time that DD11 is HAPPY. Her executive function is very much better. She dances with very little pain and her other symptoms are 98% resolved. She even made it through a nasty cold last week with no ramping of symptoms (and that was through a pulse as well). There, now that I have jinxed myself, the LLMD wants her to complete another 1.5 months of pulsing (with no reported herxing) before we begin removing abx from the protocol. I have no idea what will happen then.

I'm pretty sure "Ozimom" states in her signature line that she is from Australia. You might try PM'ing her. I hope your daughter is doing alright.

We overcame severe oral apraxia (which began with 15 month MMR vaccination) after 4 years of intensive PROMPT therapy. DD11 still had the age regressive/innapropriate social behaviour, ADHD and tendancies toward OCD, sound/light/touch sensitivities, motor planning/executive function difficulties that led to her "high functioning ASD" DX. She has made leaps and bounds since beginning treatment. Obviously not ASD....(unless you call ASD a group of symptoms caused by a genetic/congenital predisposition to infection(s) and an inability of the immune/detox systems to handle the result).

Here it is: Drjoneskids.com

DD11 gets 140 billion plus fermented vegetable 3x weekly. We have never had C. diff or yeast problems, but I feel it's better to be over-enthusiastic with probiotics, especially since we have not had problems with them. Some do, unfortunately.

Just my 2 cents. Because she is showing symptoms, I would treat. Like Fixit said, because you have caught it relatively early on, it may not take long to make her feel better. I think if she wasn't symptomatic, I would still treat with herbals. I plan to keep DD11 on a long term herbal protocol if/when she is finished with abx.

Yikes! I think Christianmom means 1 mg - 1000ug. DD11 takes this every other day (per LLMD) for heterzygous A1298C, along with 30 mg P-5-P, 2000 ug sublingual B12 daily and 500 mg liposomal glutathione daily. 1 gram seems like a lot!

LLM - you had mentioned trying Neuroprotek. Did that help in any way. We have been using Lutimax, and DD11 is showing perhaps a little improvement from it, although I should probably use it twice a day.

LLM - Do you use BH4, or have you tried it and what were the results? I have noticed it mentioned on a couple of autism forums, but no real discussion. Our LLMD also suggested DMG, but I saw a couple of postings somewhere about it reacting with nitrates (lots in vegetables)and possibly causing carcinogenic compounds. A wading I will go. Thanks.

Our LLMD has been treating DD11 with P-5-P B6 (30mg 3x/week), methyl B12 sublingual (1000ug BID), liposomal glutathione (250mg BID), and l-methylfolate (1000ug 3x/week). She started DD11 on these supplements when we began treatment with her. The LLMD was not surprised about the mutation and did not change the supplementation after the test came back positive.

I think I would start with very low doses and ramp up the supplementation slowly. This would allow her immune system time to adjust. If it is causing herxing, back off a little and wait a while until the next increase. Dr Mercola's site suggests some type of tanning bed to increase D3, but you would have to search for the info there, I don't remember exactly.

There are lots of viruses going around and it may not be bacterial. DD11 had a huge sore throat last night and we had to cancel Girl Guides. She had an epsom salt bath instead. I dosed her with zinc, vit C and ColdFx and she was almost better today. We are between pulses and I thought "should I start pulsing early?", but decided against it. It's so easy to put your mind in overdrive, isn't it? Have fun in NY!

The increased ticcing so soon after the start of abx would point to a herxheimer reaction to me. DD11's herx reactions have always included increased, and at the beginning of treatment extremely increased, ticcing. Along with the increased ticcing, her PANS symptoms show an increase as well. She is 1.5 years into lyme/bart treatment and we are pulsing her abx 3 days every week. By the second day her tics are back, but by the third are resolving. We really up the detox protocols when we pulse. She also takes 125 billion probiotic cultures every day. Really read the archives for this forum. There is lots of info on symptoms, detoxing and methylation support. Joint pain is a symptom of lyme. I'm glad you did get a positive lyme result and can now find a doctor who can help. Mainstream doctors really know nothing about this infection and it's ability to cause autoimmune neuological symptoms. This lyme/pandas/pitand forum is a great place to be.

DD11's allergic reaction was typical. Itchy hives covering her body. If your daughter is not having adverse reactions to Culturelle, maybe try to give her a little at noon as well. I forget, have you tried a little melatonin in the evenings?

Me again. DD11 had her biggest dieoff with bactrim at the beginning of treatment for lyme/bart. She then developed an allergic reaction to it and we had to switch to biaxin. She didn't really start making gains until we added rifampin to biaxin to go after bartonella. After a couple of months on biaxin/rifampin her motor/vocal tics and "stuck" behaviour (drawing the same picture over and over, watching the same video over and over) started disappearing. She was on some combo of: Biaxin/rifampin plaquinel/tindamax ByronWhite herbals (A-L, A-Bart) Buhner herbals (Japanese knotweed, cats claw, sida actua, teasel, garlic) methylation supplements including liposomal glutathione and methylated b vitamins Inflammation supplements (curcumin, Enz-Flame) homeo detox and Epsom salt baths Transfer factors/Astragalus/ColdFX phosphatidylserine/phosphatidylcholine Cod Liver Oil Vit D/Vit C 125 billion probiotic cultures/day and fermented veg 3x week. wheat free and milk free for a year, but there was a plateau in improvement . We are now treating for babesia, which did not appear positive on testing, but which may kill other unknown parasites as well (toxoplasmosis and other protozoans) with pulsed azithromycin/minocycline/tindamax/plaquinel (3 days/week). She has been doing really well on combination abx and seems to need a combo of some sort for improvement, plus a lot of extra support for the immune/detox systems.

If you are thinking of adding more probiotics, you do have a good window starting at about noon. We give probiotics twice a day. Different strains each time. So glad to hear your daughter is doing better. My daughter would spend a lot of time watching Disney Princess videos if I let her. Fortunately she is at a point where she will actually stop when I ask her to, without having much of a meltdown. Keep it up, you are doing a good job!

I'm not a MTHFR geek, only a regular geek, but a pinned version of your article on the forum would be a wonderful resource for many of us. You have explained so much through your blog postings, thanks for being a great researcher.

We also had good luck with a rifampin/biaxin combo. Ticcing disappeared almost completely as did OCD. DD11 was taking it for bartonella.