rowingmom
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Everything posted by rowingmom
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A question continued from the PANDAS forum this afternoon. Do his lyme and coinfection symptoms resolve with fever? Glad to hear that perhaps his immune system is gaining some ground.
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What does better when ill mean?
rowingmom replied to sandree's topic in PANS / PANDAS (Lyme included)
We are working with a LLMD (Lyme Literate Medical Doctor) that uses several herbal antibacterial and homeopathic detox remedies along with abx in our daughter's treatment for lyme and coinfections. -
What does better when ill mean?
rowingmom replied to sandree's topic in PANS / PANDAS (Lyme included)
My DD11 has PANS reactions to viral and bacterial infections, primarily caused by lyme/bartonella. Before we began treatment 1.5 years ago she would react to infection with an increase in motor ticcing, age regressive behaviour and an inability to socially interact (along with other PANDAS symptoms), unless there was a fever involved. Fever would result in a decrease in all symptoms, including bartonella long bone pain and motor ticcing. She would be out tearing around on her bike with a fever, any other time her shin pain would restrict her activity. My thought is that when fever is involved, the immune system is perhaps (at least for a while) reacting in a proper manner. DD11 doesn't often have fevers, not even during strep infections, which she is quite non reactive to. No terrible sore throat, fever, even white spots on tonsils are missing. The two times she has tested positive for strep, I have had to insist on the swab, the doctor not thinking it necessary. With treatment, her flares during infection have dramatically decreased. We also don't see the large decrease in symptoms during a fever any more either - but that could be because her symptoms have resolved to a low level. -
We avoid raw sushi, but DD11 loves the kind kind with cooked or tempura seafood - there are lots of different kinds out there. Making your own can be fun and you avoid possible cross-contamination. We also avoid yogurt, but only because it contains casein, not because of the probiotic bacteria. DD11 is on a low sugar diet, so she doesn't get to eat honey.
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Increased motor tics with abx
rowingmom replied to socalmom's topic in PANS / PANDAS (Lyme included)
I didn't know it was available uncoloured. Doubt my daughter would go for this, though you never know- she suprised me by drinking alka seltzer gold mixed in water. I'll give it a try. Need to get those bowels moving - thx A tablespoon of chia seeds in a smoothie works well too. -
For CLO, NutraSea makes a good pharmaceutical grade with lemon flavour. It doesn't taste like fish at all, but does have an oily after-feel. Coconut oil has anti-viral and anti-bacterial properties as well as being a source of energy distinct from glucose metabolism - ketones. The brain can use the ketones produced by the coconut oil in place of glucose, resulting in improved cognition in those with impaired brain glucose metabolism. There is vit A in CLO, you would have to check the label to find out how much. I don't think coconut oil contains vit A.
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I use OmegaNutrition organic coconut oil - I can get it in the health section of our grocery store, and it has no flavour or aroma. I use it in place of all other oils while cooking and baking, and if I want butter flavour, I add a little grass fed ghee and sea salt. I add a little extra to the kids' lunches while I am heating them (usually left over dinner from the night before). You can definately use a fair bit in rice, mashed potatoes, soups and casseroles. My husband puts it in his oatmeal in the morning. Coconut oil is high in salicylates, so if you have a problem with that, take it easy.
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We have not used clindamycin, sorry, but we often see an increase in symptoms, especially ticcing and emotional lability with increases or changes of abx. I think I would increase detoxing and hang in there for a few more days, as long as you are not seeing an allergic-type reaction (itchy hives).
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Increased motor tics with abx
rowingmom replied to socalmom's topic in PANS / PANDAS (Lyme included)
re: psyllium husk, we use the smooth, unflavoured, uncoloured Metamucil, mix in water and gag it down . -
Ketogenic/paleo/low-carb diet for Tourettes?
rowingmom replied to JensOfSweden's topic in Tourette Syndrome and Tics
You can also increase the amount of ketones available to the brain by supplementing the diet with coconut or MCT oil. There is a fair bit of info at PerfectHealthDiet on ketogenic diet and brain function. -
Perhaps this is why some children with unrecognized/untreated lyme and co are relapsing after IVIG. DD11 did have some symptoms of meningitis before treatment - stiff/painful neck at the base of the skull, along with asperger's type behaviours. Her bartonella pain/PANS symptoms really escalated after a stressful family incident (lots of adrenalin) - perhaps opening her BBB.
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PANDAS a topic at AAP convention!
rowingmom replied to T_Anna's topic in PANS / PANDAS (Lyme included)
@ ChrissyD - Good for you!!! Perhaps that will cause someone to stop and think, if just for a moment. -
My mom (a nurse) used to give us "spring tonic" every year. Sometimes the neighbour kids would come over for some too. I found out a while ago that it was actually an intestinal dewormer added to Tang. What was in it, I don't know. I don't think these types of intestinal worms are passed to the baby during development, and really only cause malnutrition in the host, which I suppose could effect the growth of a fetus. I believe other types of parasites, protozoa etc., can be passed on congenitally.
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That is so dissapointing anbout the Samento/A Bart. I decided to try the C with the magnesium to see what happens. I know D feeds Borrelia too, and she has had a great response on that. I hope you can get your DD off the abx soon too, I hope we all can I know, but perhaps her overall bacterial load was too high at the time. I have a feeling we will be trying again!
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So glad you kept at it until you found another piece to the puzzle! What a wonderful Mom!! Don't be discouraged if treatment takes a while. Everything you address with respect to methylation, detoxing, proper diet will help. Our LLMD allows us to use herbal protocols along with abx - hit them from all directions and don't let up. We have been treating bart for 1.5 years, and have now switched to a protocol that addresses lyme/bart/protozoan infections (even though DD11 tested positive only for bart, and IND for lyme) and are finally doing really well. DD11 is happy most of the time. She interacts appropriately with her peers. Rages and frustration are disappearing at a rapid rate. It is so nice to finally see your beautiful child emerge from all the pain and mental anguish these infections cause. Also good to see that you have several good doctors working for your son.
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Our biofilm protocol is 1 Bolouke and 1 Interfase (KlaireLabs) 2x daily on an empty stomach 30 - 45 minutes before the next meal. I know her stomach is empty in the morning, but not sure about the afternoon supplementation. We are not doing any kind of chelation. Parasites that infect humans probably require many of the same nutrients that we do. If they didn't, they would be looking elsewhere for proper living conditions. To me, it doesn't make sense to try to starve lyme and co of the nutrients that we need to survive. Bartonella requires oxygen....
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Increased motor tics with abx
rowingmom replied to socalmom's topic in PANS / PANDAS (Lyme included)
Oh yes, and we take milk thisle and use bioactive whey protein in smoothies as well. Here is an explanation of how NAC and glutamate is used in the production of glutathione in the brain: http://evolutionarypsychiatry.blogspot.ca/2012/06/glutathione-we-loves-it-nac-and-autism.html. Perhaps this is the reason why some with OCD and ticcing find NAC to be useful. -
Increased motor tics with abx
rowingmom replied to socalmom's topic in PANS / PANDAS (Lyme included)
Since detox involves pretty much everything you put in your body, here goes: Our LLMD uses FuturePlex antitox homeopathic detox drops: kdny-drn, deep antitox, lmph-drn, M-12 brain, lvr-drn as well as NutraMedix pinella and burbur detox twice daily in water taken with other supplements. We use fresh lemon juice in water sweetened with stevia at least once a day, epsom salt soaks at least 3x weekly, 1 tsp psyllium husk every other day to keep everything moving, along with chia seeds in smoothies which works well for this too. We are addressing the MTHFR deletion with methylated B6, methyl B12 and l-methylfolate. We also supplement with liposomal glutathione (2x daily), NAC and l-glutamine (every other day). We will be testing for KPU shortly. We try to keep inflammation to a minimum with DaVinci Enz-Flame and Lutimax pediatric powder once daily, along with a gluten free, very low casein diet (~80% paleo) with lots of green leafy and cruciferous vegetables - low on the nightshades. 2000iu Vit D/day. Japanese knotweed and ALA also. We try to keep pesticide contamination low by using organic leafy greens, apples, and potatoes (when we eat them) and basmati rice from N. California to decrease arsenic load. Organic grass-fed ghee, coconut oil and olive oil for fats. Organic eggs, NZ lamb for protein with good fat (and bone stock with the bones/marrow). Any other sources of protein are low fat because CFAO animals are fed large amounts of inflammatory omega 6 fatty acid-containing grains. We don't eat legumes - see Robb Wolfe Paleo Diet for great explanations of how many different foods can negatively effect intestinal permeability. We eat fermented vegetables a couple of times a week, and coconut milk kefir in smoothies a couple of times as well. DD11 gets 100 billion probiotic cultures/day divided in two. Oh, and just to make everyone think I'm really nuts, I turn off the electricity to her bedroom at night . -
Ask your doctor for his/her thoughts on supplementing magnesium. A couple of months ago when it appeared that DD11's new pulsing protocol was helping with most symptoms, but that shin pain kept reoccurring with exertion, our LLMD increased vitamin C to 3000 mg/day, magnesium to 300 mg/day and calcium to 300 mg/day. DD11 has had definate improvement in long bone pain, but I am not sure if it is due to the continuation of the abx protocol or her increased intake of vit C and minerals. I know many LLMD's don't suggest supplementing with magnesium or other substances required by borrelia (ie glucosamine) in order to starve and weaken the bacteria. There is another hypothesis out there (which Buhner mentions in his book as well) that, as parasites, lyme and co. must extract everything they need from our bodies, resulting in deficiency symptoms, weakening us and rendering us incapable of mounting a healthy immune response. We have to be healthy to fight the infections. Our LLMD suggests supplementing with minerals even while we are on a biofilm protocol of InterFase and Boluoke. 1 year ago, after about 5 months of treatment we tried to withdraw biaxin (for lyme) and replace it with samento/banderol, while continuing rifampin (for bart). A pretty much total relapse resulted after 2 months. DD11 (10 at the time) had no problem with the herbs (no herx) but they didn't help much either. Perhaps her load was too high. After that, biaxin/rifampin were resumed, and Byron White A-L and A-Bart were started. She had a significant herx with those and we had to ease way back and ramp up slowly. After a couple of months with biaxin/rifampin/A-L/A-Bart the LLMD tried to discontinue rifampin to see if A-Bart would deter the bartonella, but we ended up with another relapse after 2 months. Can't wait to be able to cut back on abx!
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Environmental Allergies - Best Treatment?
rowingmom replied to Spartan32's topic in Tourette Syndrome and Tics
Robb Wolfe (Paleo Diet) has a good anti-autoimmune, anti-inflammatory diet as well. -
Increased motor tics with abx
rowingmom replied to socalmom's topic in PANS / PANDAS (Lyme included)
DD11 also had this reaction to changed/increased abx. 3 months of biaxin/rifampin cleared them up significantly, but it was a very gradual decline. With a change of protocol we began pulsing tindamax with continual biaxin/rifampin which resulted in an increase in ticcing for the first two days of the three day tindamax pulse. Her ticcing would then decrease somewhat, but not to the original baseline. After 3 months of this all of her symptoms had shown a cyclical and constant increase. My feeling is that she was unable to detox properly after successive tindamax pulses while still on continuous biaxin/rifampin. At the moment she is pulsing all of her abx (tindamax, malarone, azith, mino, plaquinel) for three days on and then 4 days with no abx, but lots of detoxing and probiotics. For the first couple of pulses her ticcing, motor and vocal, went through the roof - new tics, many at the same time. She could not read her blinking, head jerking and mouth stretching tics were so bad. This would occur within 2 hours of the first dose (dosing BID), but would start to decline by the third day, even while still on abx. Her ticcing and other PANS symptoms would then resolve, pretty much back to a new low baseline during the next 4 days, to ramp again with the start of the next pulse. With each successive pulse her flare has decreased and her baseline is now almost at 0. She now only has some minor emotional lability at the start of pulsing (no ticcing) and made it though a major viral infection just before Christmas with no increase in symptoms. I think now that her body has time to eliminate toxins between pulses, we are seeing some real resolution to ticcing that I think was due to toxin overload. -
Do not lose hope. You have not been addressing your daughter's infections for very long - it really does take a while to find the proper treatment for lyme and coinfections, and to allow it to work. Our LLMD feels that DD11's PANS/vocal/motor ticcing symptoms will clear with coinfection treatment. For her, treatment for bartonella reduced them drastically, treatment for protozoan infections (babesia, toxoplasma etc.) has resulted in almost complete remission (still a little shin pain while tearing up hills after sledding down). We are currently pulsing combo abx 3 days/week. The book is probably worth it if it can give your daughter some tools to help cope with her OCD/ticcing. My daughter is attending weekly group behaviour therapy sessions. She is helped there to understand when she is losing control (raging, frustration etc.) and how to better deal with her feelings and reactions.
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loud vocal tics again, need some urgent help!
rowingmom replied to croatian mum's topic in PANS / PANDAS (Lyme included)
So your doctor doesn't think probiotics are necessary with abx? -
Need Vit. D3 in 5000 & 10,000 units
rowingmom replied to MamaOnAMission's topic in PANS / PANDAS (Lyme included)
We use NaturalFactors D3 drops containing 1000iu per drop. -
Here is a informative forum thread regarding KPU: http://www.latitudes.org/forums/index.php?showtopic=18657&st=0&p=147727&hl=kpu&fromsearch=1entry147727 We have not tested for it and I am hesitant to supplement too much zinc if we don't need it, because of the way it interacts with copper. This will be one of the tests I talk to the LLMD about at DD11's next appointment.