rowingmom

I have been giving DD10 a phosphatidylserine/phosphatidylcholine supplement daily for a long time. We struggled to regain her speech for 4 years after her 15 month MMR vaccination - thankfully 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 - I could sing them all to you now if you would like 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 try to eat veal liver once a week, and I often give her egg yolks (no white though because we have too many autoimmune difficulties). I'm not sure if this helps or not, but it seems to make sense. A link to an article by Chris Masterjohn (Weston A Price Foundation) on choline and its effects on the methylation cycle. http://blog.cholesterol-and-health.com/2010/12/meeting-choline-requirement-eggs-organs.html

My DS15 (the healthy one) had tinea versicolor, a fungal skin infection, on his face for a couple of summers. In the winter it can have a brownish colour, but in the summer when the skin is more tanned, it appears to be white blotches. Our doctor gave us some antifungal skin cream that had some immune suppressing properties - I never used it. We have all been increasing our intake of probiotics (kefir, fermented veg, etc.) and he has not had the problem this summer. Don't know if this is what you may be observing.

This sounds like a die-off/herx reaction to me. Psych and pain symptoms show a definate ramping up several days after an Abx switch/increase for DD10 (lyme/bart). Her first (when first starting Abx) was definately the worst and put her in a wheelchair for a couple of weeks. This was before I knew anything about detoxing. Her teacher was scared to death by the anxiety attacks.

My DD10 has PANS reactions to strep and viral infections, and regressed severely with her 15 month MMR (lost speech, gross and fine motor). She has been Dx with lyme/bartonella, the LLMD thinks she has congenital lyme. I was very stressed at the time I was pregnant with her but not so with DS15. DS15 seems to have no problems.

Thank you for the info LLM. DD10 has been on 1mg daily of l-methylfolate, P-5-P, and methyl b12 for a year now. I just assummed that she would excrete any unneeded extra. The LLMD has not suggested testing levels. We will check it out.

We tried Cowden early on in DD10's treatment. She was on biaxin as well at the time. It made no difference (good or bad), so i'm thinking the lack of herx means it really was not effective for her. We did have a pronounced herx with A-Bart 20 minutes after we introduced it, so we have been sticking with that, along with A-L, rifampin and pulsed tindamax. We are up in your neck of the woods through the next week (Grand Bend). PM me if you would like to get together.

Which symptoms are you referring to, please.

Smartyjones - do you treat everything homeopathically or just strep? DD10's symptoms really took off when she started developing culture positive strep infections a couple of years ago and they seem to be held in check with combo abx for lyme/bart, but we have done no further strep testing. I will look into that, even though we don't have a baseline.

Thanks. I will have to check out the prices on that site. We use CanadaDrugs.com

We also use Nutramedix burbur and parsley, Epsom salt baths, juice from 1/2 organic lemon in a glass of water 1 or 2 times a day. I add 3-4 drops of stevia and DD10 says it tastes like lemonaide. 1 tsp metamucil (psyllium husk) once a day away from supplements/abx.

Decreasing inflammation can really help with pain and mental issues (I think this is why NSAIDS seem to work with PANDAS kids behaviour). Lyme really upregulates the Th1 (inflammatory) response, so everything we can do to decrease it has to be good. Gluten, casein and sugar are very inflammatory as are the lectins and phytates in nuts, seeds (and seed oil) and all grains - not to mention the damage they do to the gut lining (see Robb Wolfe about that). A paleo diet (see Mark's Daily Apple, Perfect Health Diet (close to paleo), Robb Wolfe Paleo Diet) helps to decrease this inflammation that our kids (and ourselves) have too much of. Paleo is not hard, in fact you pretty much get to give up baking, unless you want to do some almond flour muffins (very filling) or something. There was lots of complaining at first but we now use mashed cauliflower in place of rice or mashed potatoes, or add it to some rice or mashed sweet potato to cut the amount of glucose. I tend to follow the Perfect Health Diet which does allow more carbs in the way of white rice and sweet potatoes as well as fat from pastured ghee, whipping cream (which I dilute to make milk for Rice Chex), and pastured butter - all good sources of K2. I feel the kids need these as they are growing, and really my joints feel better if I get some too. Breakfast is usually eggs/left over meat/rice, I make almond flour pancakes a couple of times a week with berries on top. Lunch is home-made bone stock (easy to make with a slow cooker - in the evening throw in some organic chicken stock and a bunch of grassfed bones with some meat left on it - I usually use lamb - necks are great with lots of collagen) made into some kind of soup with rice or rice noodles. I also make wraps using rice paper, kind of like an uncooked spring roll, with chicken, lettuce, anything you would put in a wrap. Or just a chicken leg and some fruit or sauteed greens. Dinner is meat often wild salmon, veg, salad, fruit if needed for dessert. Ground veal or chicken liver goes into anything made with ground meat (stock here also). Rice noodles or spag. squash in place of wheat noodles/spagetti. Kale chips (made with coconut oil, not olive) are a hit. Salad dressing is home-made with olive oil, vinegar and whatever. The kids are OK with all of this. My DS16 is actually appalled at the amount of pop and crap other people eat, and we have only been at this for a couple of years. Hopefully he will stick to it when he leaves home - ha! My husband still insists on toast on the weekend and having his wraps made with flour tortillas, but that's up to him, I don't fight it. The rest of his diet is pretty healthy. I'm playing around with fermenting veg now. Yeah probiotics!

My DD10's CD57 started out at 18 in June 2011. It went up to 27 in Jan 2012, but is now back down to 18. I think Michael Tampa had something to say about the use of CD57 values in children earlier this year. http://www.ncbi.nlm.nih.gov/pubmed/20733159 "Natural killer (NK) cells are innate immune lymphocytes that express a heterogeneous repertoire of germline-encoded receptors and undergo a distinct pattern of maturation. CD57 is a marker of terminal differentiation on human CD8(+) T cells. Very few newborn or fetal NK cells express CD57; however, the frequency of CD57-bearing NK cells increases with age."

I'm not sure about the smart part. All I can do is give you DD10's Igenex results. If the LLMD and I had this figured out, I would be so happy! DD10 began ticcing (motor/vocal)(dx probable Tourettes) in 2008 after a bite with atypical rash (non-EM). After much thinking I also realized that she had her MMR booster (our Family doctor reassured me, I was very skeptical and totally uninformed) in the summer of that year as well. She showed other PANS symptoms - rages, inability to concentrate (dx ADHD), poor executive function, urinary frequency with bed wetting, decline in fine motor skills, decline in ability to socially interact (dx Aspergers). These symptoms would wax with strep throat infections and wane with Abx treatment. After a while she was reacting to viral infections as well and with no abx treatment for those, all these symptoms became her new normal (finally dx as PANDAS, but we were told to live with it, as no treatment is available in Canada unless the patient is completely incapacitated). Before all of this happened she had displayed pretty much all of the symptoms Dr Jones lists as belonging to children born with congenital lyme (light/sound/touch sensitivity, hypotonia, low growth percentile etc.). She lost her speech and a large part of her fine motor development with her first MMR vaccination. 3 years of private speech therapy for oral apraxia and occupational therapy for motor skills had gotten her back to some level of normal. Bartonella pain symptoms began Jan 2010 after a stressful family situation. A light went off one day while I was reading this forum (I can not thank these parents enough for being so informed and for sharing their research) and I found an LLMD to treat her in NY. Her Igenex test was PCR positive for bartonella. The lyme IgM was IND for 41 kDa and the lyme IgG was IND for 34 kDa and 39 kDa, ++ for 41 kDa. Our LLMD feels she is not testing highly positive for lyme because it is most probably congenital and DD's immune system does not recognize it as foreign. DD has never had IVIG. She has had herx reactions to bactrim, biaxin, rifampin, tindamax and A-Bart. Hope that helps.

@ mar. I envy you for having luck reducing pain by going GF. We are GF/CF/SugarF Paleo (well except for GF rice chex and fermented GF oats), and that was before we started abx treatment. Only rifampin in combo with biaxin has helped DD10's shin pain. She is much improved this summer; a 35 km tandem bike ride was easy for her.

DD had an initial pronounced herx reaction to A-Bart and our LLMD was fairly certain that we could quickly move to A-Bart instead of rifampin with biaxin. No such luck. All symptoms gradually ureturned after 3 months off rifampin but still covering with A-Bart/A-L/biaxin. It took another month and a half after reintroducing rifampin to the mix to bring pain and PANS symptoms back to baseline. The only breaks we seem to get are while she on 2 to 3 abx. I am not sure how long this will take. I kind of had my heart set at 1 year, but we passed that in June.

DD10 (70 lbs) is also taking biaxin (250mg BID)/rifampin (150mg BID). She has been taking these for about a year now for lyme/bart, and we added pulsed tindamax a couple of months ago. Whenever she is on the combination she does well. Pain resolves, and PANS reactions subside. Whenever one or the other is removed and covered with herbal/homeopathy (A-Bart, A-L) for longer than two months everything returns. It seems as though both are required. Thanks Red for the article links. I will be heading to the LLMD with those.

Sole pain was also one of my daughter's symptoms although she did test PCR positive for bartonella. Rifampin got rid of it, but now with pulsing tindamax it is back. It comes and goes, appearing especially when she has been exercising heavily. Her pain only lasts for 1/2 hour at a time and then it is gone again.

The only itching problems we had were due to hives resulting from an allergy to bactrim. The itching cleared as soon as we withdrew that Abx. DD10 was switched to biaxin instead and hasn't had any itching problems since.

For DD10 penicillin intially given for strep (before lyme/bart diagnosis) decreased PANDAS symptoms for 7 to 10 days. After that the PANDAS symptoms returned while on Penicillin. After lyme/bart diagnosis, biaxin (she had an allergic to bactrim) decreased pain, anxiety attacks, tingling extemeties, hot flashes, ADHD, urinary frequency, but not motor/vocal tics. The addition of rifampin (150mg BID) to the biaxin (250mg BID) resolved ticcing and other symptoms after about 1 month. After 3 months of biaxin/rifampin, rifampin was discontinued. Biaxin/A-Bart/A-L (without rifampin) resulted in a return of most symptoms, especially motor/vocal ticcing after 2 months. Rifampin was restarted and all symptoms were again better with biaxin/rifampin/A-Bart/A-L. 3 months later biaxin was discontinued, rifampin and tindamax were pulsed (3 days tindamax (250mg BID)/4 days rifampin (150mg BID) with continuous A-Bart/A/L. This resulted in a return of motor/vocal ticcing and ADHD after 1 month. Biaxin was added back daily (250mg BID) and symptoms are again slowly clearing up after 1 month. Whether the return of symptoms with the discontinuation of biaxin and the addition of tindamax were due to a herx from the tindamax or the removal of biaxin, I am not sure. We have been addressing biofilms since day one.

How has your DS10 been doing since then, has he been able to hold his own? Glad the surgery helped.

That's great! I never thought to ask our LLMD what to do should DS or DH get bitten. I do have quite a stock of tindamax at the moment.

Hugs from here too. My daughter has made some friends at the CBT program she belongs to. They do group as well as one-on-one therapy. The children seem a little more understanding about meltdowns there.

Unfortunately Canadian doctors are not permitted to Rx long term Abx - they risk having their licence pulled by their provincial College of Physicians and Surgeons. For that reason we seek treatment for lyme/bartonella/PANS across the border. You may be able to educate your doctor, but his hands are tied when it comes to abx.

DD10 started treatment for lyme (bactrim/biaxin/supplements) in May 2011, and added rifampin for bartonella in July 2011. Her motor/vocal tics had declined to almost non-existant after a month on rifampin. Our LLMD discontinued rifampin in Oct 2011 and tried to cover bart with herbals, but all DD's bart symptoms had returned (including motor/vocal tics) by Jan 2012. Two weeks after re-introducing rifampin in Jan 2012 tics had again resolved. When we started pulsing tindamax in the beginning of May DD's tics would increase on the "on" days and resolve a couple of days afterwards (looked like a herx). These cycles have flattened out now (after a month) and we do not see any more ramping of symptoms. Her OCD (quite minor - drawing stick figures over and over) seems to wax and wane with her tics. When she is having problems with ticcing she also has trouble with OCD and Aspergerish symptoms - inability to figure out social cues or nuances of speech, rage etc.

We are happy too, although she did not really mind them at the time - they just seemed to be part of who she was. Looking back, she was pretty out of it at that time. Her rash was a single 1" diameter smooth red rash with a thin dark red border. There was a dark mark at the center, but we found no insect attached. My DH and I assumed a spider bite because we "knew" that lyme produced an EM rash. I think you can find a picture of this atypical rash (which is actually pretty typical) on Dr Jones' website. Look on the left hand side of the home page for rashes.