rowingmom

Ingredients in PureEncapsulations AI formula: each vegetarian capsule contains: quercetin175 mg. turmeric (Curcuma longa) extract (root)150 mg. (standardized to contain 95% curcuminoids) bromelain (2,400 GDU/gram)200 mg. ginger (Zingiber officinale) extract (root)100 mg. (standardized to contain 5% gingerols) ascorbyl palmitate (fat-soluble vitamin C)14 mg. To me this looks like more of an anti-inflammatory supplement, I'm not sure how it would work to boost the body's own NK cells and immunoglobulins, although PureEncapsulations do make good supplements and our own LLMD frequently uses them. Garlic can boost NK cell production, and according to Stephen Buhner (lyme/coinfection herbalist) ginger has similar properties, although not as pronounced. To boost the immune system, our LLMD wanted us to try Virapress (bovine immunoglobulins), which I tried on myself before dosing DD. The response to 4 drops was pretty swift and negative, producing large amounts of inflammation (body pain, flu-like symptoms) for me. The Th1 cytokine pathway is inflammatory and you would expect this type of response if it is being overstimulated. So that was out. Buhner believes that treatment for immune suppressing infections (lyme/co fall in that catagory) needs to include immune modulating/inhancing herbs, at least in low doses, to allow the body to react in a more effective manner. I think your doctor is trying to do this as well. Buhner suggests astragalus, but only in very low doses, for chronic infection. Higher doses can be good for an initial acute infection. After having gone through pretty much the same reaction dosing myself with high doses of astragalus that I did with Virapress (our infections are chronic), we are now using 1 500mg capsule mon, wed, fri. An interesting article on astragalus: http://www.alive.com/articles/view/20510/astragalus_the_immune_warrior Buhner also suggests cordyceps for those who can't tolerate any amount of astragalus. For us, anything that was capable of producing bacterial die-off resulted in increased ticcing (until toxins could be eliminated). This includes boosting of immune response.

She doesn't have many fevers, but enough for me to make the association. Maybe 1 every 1.5 years.

If your son is only functioning at 70% at home, I would think he still has significant impairment. DD's emotional lability is always the first to come and last to go during a flare. If this is also the case with your son, he may still be having some difficulty regulating himself. DD knows what is expected of her (after years of CBT) for pretty much any given situation that might crop up, but is unable to put this knowledge into action when she is functioning below about 85%. If your son is still having self regulation difficulties, your telling him that he is out of his "episode" may make him feel out of control. I don't think our kids are ever really finished dealing with this. DD knows when she is herxing from changes in her herbal protocols. It could be a big burden for a child, still in treatment, to be told that he is good now and shouldn't be having symptoms or emotions that are not under his control. Our daughter is on an IEP which includes being accommodated for social behaviours out of the norm. She hasn't had to use these accommodations for the last 2 years, but they are still in place and the school knows to expect them at any time. I will give the teacher a heads up if I see things are ramping, but that is it. I have never told them that accomodations could be removed, and I think teachers will be aware of daily ups and downs, accommodating when needs be. DD is fully aware of her IEP, what it contains and how the accommodations help her. Her IEP doesn't include everyone being "especially nice", it includes removal from class for sensory issues during testing, extra time allotted for work/testing or reminders/removal for behaviour. When she was flaring she appreciated all of this help. When she is not flaring the teachers do not accommodate. We try not to let nastiness happen at home either. It is hard when they are ramping and discipline will often result in an outburst. Now that she is functioning at a higher level, talking back is still not tolerated, and will result in priviledge removal after one reminder .

I have always associated our daughter's ticcing with bacterial die-off, either caused by her immune system (before treatment), or by abx (during treatment). I chart symptoms levels (1-10) against treatment protocol daily and found that in the beginning ticcing would wax with any infection. It would then wane. During episodes of fever her ticcing (along with other PANS) symptoms would resolve greatly, only to reappear 2-3 days after the fever had diminished (fever causes bacterial die-off). She has never produced many fever reactions though. During treatment treatment I would observe an increase in ticcing within 1-3 days of changes in abx protocol or dosage, which I associate with a herxheimer (die-off) reaction. It would generally take 3-4 days for her to work through these as her body gradually detoxed. Her worst ticcing correlated with the use of tindamax (a known antibiotic for cystic forms) which we ended up having to pulse because there was no herx resolution. With pulsing she was able to detox during off days and get back to a good baseline. GrapefruitSeedExtract had the same effect, whether due to bacterial or yeast die-off, or by the blockage of cytochrome P450 in the liver (like the statin/grapefruit interaction), I don't know. I found anti-inflammatory herbs to be helpful with herx reactions (ticcing or emotional lability). We use Japanese knotweed at higher dosages (1/2 tsp tincture or decoction TID and liposomal curcumin). Some here use ibuprofen. If you are not seeing resolution of PANS-associated ticcing it may be because your child has difficulty getting rid of built-up toxins (produced either by die-off, or other assaults - heavy metals, pesticides, etc.). Many here have found MTHFR anomalies in their children which can block the function of the methylation cycle. These deletions need to be addressed with proper supplementation or perhaps dietary restrictions (in the case of sulpher intolerances). Detox protocols may be necessary as well to allow the body to either grab onto the toxins in the intestine (charcoals or clay), or to keep the bowels working at a good rate, moving toxins out with BMs and not allowing them to be resorbed through the mucosa (psyllium husk). Search the archives for information on these topics. Our daughter was offered klonopin, but we have never used it. I think it would have obscured my observations on the effects of her various abx/herbal protocols. Many here do find need to use medications to help their children function, so that call would is yours. Be careful of psych meds bacause many children here have a very low tolerance for them.

DD is pretty much ticcing-only as well. Her only OCD issue was drawing the same picture over and over whenever she would draw. I assumed it was due to a lack of imagination . She did however have other behavioural issues: ADHD, rages etc. The whole gamut of PANS symptoms: http://latitudes.org/downloads/pandas_pans_scale.pdf Here is a good explanation of ticcing: http://www.mayoclinic.com/health/tourette-syndrome/DS00541/DSECTION=symptoms It has a premonitory sensation associated with it. If your child can explain how he feels he may mention this to you. DD explained it as a feeling that would tickle her, but go away for a while once she performed the tic. Your mention of a dancing motion made me think of possible Sydenham's chorea.

I took a look back through DDs records. Oh, dear. Her AST has always been higher than ALT, although within normal ranges. The only time ALT has been higher than AST was when we first started treatment and she was Rxed bactrim, which she ended up developing an allergic reaction to. At that point both were higher than normal. After we changed abx and started taking milk thistle both measures came back down, but the inversion came back as well. Sorry, I'm no help at all. Our LLMD just seems satisfied that both are now within range and have been there since the initial blip. She didn't mention about an inversion. Keep us updated.

She didn't say. She only mentioned that the study would be released "early next year".

I always end up saying "lyme" when I'm really talking about the whole package - coinfections too. Bartonella, babesia, ehrlichia, mycoplasma. You need to at least take a look for these. They can cause real problems, but most doctors don't think to check for them. They just assume if lyme is not positive, that coinfections will not be present. This is a false assumption.

No we haven't done the test, but please keep us updated if you decide to have it done.

I really don't think the presence or absence of lyme is important, and the results from the ELISA and WB are often negative because of immune supression. I think the coinfections are the cause of the larger problems. I would find a specialist to clinically diagnose and make suggestions on coinfection testing.

Lyme (or other spirochetes) infection, alzheimer's disease, and inflammation: http://canlyme.com/2013/01/28/lyme-disease-alzheimers-disease-and-inflamation-the-relationship/

Find an ILADS trained LLMD. Someone here may give you a suggestion, or head over to the ILADS website for a referral. They will clinically diagnose and then suggest the tests they think would be helpful. There are different endemic infections depending on the area in which you live. Our LLMD knew right away that DDs PANS was caused by her bartonella infection. I couldn't believe she knew anything about PANS/PANDAS. These doctors understand. But not everything as I stated above. Be your own inflammation and methylation researcher.

LLM - You were the one that brought me to the lyme (well actually bartonella) conclusion. I was a blubbering mess, I cried for three days straight. Everyone told me I was nuts (PCP, Pediatrician, Ped Psych, family). Then I found a LLMD. But you know, if it hadn't been your constant harping on MTHFR, I never would have realized how important this is to the whole picture. I think these deletions are part of the reason why our children react to, and can't recover from, these infections the way other people do - That and the whole 38 vaccinations before 10 years of age that make a horrible assault in the kids immune systems. Some LLMDs don't address methylation or address it properly. They just throw a bunch of methylated Bs at it thinking the more the merrier. And the constant harping by other mom's here on the importance of anti-inflammatories. This was a critical part of DDs healing, completely ignored by our LLMD. I know people who have had bullseye rashes and are fine. People who have gotten acute bartonella and recovered with a couple weeks of abx. These infections are effecting our kids differently for some reason.

When lyme was first discovering in Lyme, CT, it was because of the autoimmune arthritis (JA) it was producing in the children there.

Are you addressing methylation to improve detox efficiency? I'm not sure Dr J is up on that. DD had no trouble with multiple combo abx until we got to the cyst buster tindamax. She was able to detox through all the combos with proper support for her methylation defect and lots of probiotics. This included biaxin/rifampin/A-Bart, biaxin/rifampin/plaquinel/A-Bart and azith/mino/plaquinel/malarone/A-Bart. If you go down to one abx, make sure not to use rifampin alone as bacteria can build up resistance to it quickly if used as monotherapy. When we added the cyst buster she was no longer able to do this. It didn't work to pulse tindamax while keeping the other abx continuously in place. PANS symptoms just ramped and ramped with no let up. We ended up having to pulse everything (3 days on 4 off) allowing detox to progress unimpeded on the off days. This would bring her back to baseline by the end of the off period. Then each successive herx would be smaller and smaller, each time getting to a better and better baseline. When she no longer herxed with the pulsed cyst-buster and other abx combined we weaned. She has been in remission since April 2013.

Opinion? I'm afraid you already know what I am going to say . Strep is not positive. No infection (??) on any level. Unless you have done proper testing for ALL coinfections, especially bartonella and the mycoplasmas which are multispecies and ubiquitous, including a clinical diagnosis done by someone who understands the clinical signs of these infections, you can't possibly say there is NO infection. Bartonella is well known in lyme circles to create psychological disturbance, raging, bipolar cycling. DD had every one of your son's symptoms. They have resolved. You can't say antibiotics don't work because they each address different infections and the different types of each infection (cyst form, extra-cellular form, acellular/intracellular form). Most people only delve into lyme and the coinfections when they are desperate. No one believes them, psych meds don't help or make things worse, there is no where to turn. The only logical choice you have is to THOROUGHLY investigate this possibility before you give up. You ask every mother on here that has gone down the lyme path what they went through before they would even consider lyme. All because of the negative attitudes held by main-stream medicine towards this disease. You are not crazy. But the NIH and IDSA wants you to believe you (and your child) are. No one jumps on the lyme bandwagon without going through agony first. And when you come out the other side, you realize that mainstream medicine doesn't hold all the answers. That you have to become your own advocate, even with the LLMDs. You can put your trust in no one doctor to find all the answers to your child's problems. That perhaps herbals and other alternatives, also denegrated by the mainstream, might offer you hope. DD's illness has been a life-changing, attitude changing, paradigm changer for me. Nothing I believed about mainstream medicine do I still hold as true. The diets they tell us to eat, the meds they tell us to take.....NOTHING. In my opinion, addressing detox/methylation and inflammation while treating lyme/coinfections is paramount in our kids. The infections cause brain inflammation and herxing also does. Our children seem to be especially sensitive to this and can go downhill quickly with abx if these two important issues are ignored. There, I am done .

(Just my thoughts): And infection based.

She didn't say which lyme tests were run or how the results were interpreted. Dr C, the interviewer didn"t ask.

An interesting statement by Dr Cunningham; that of 900 children she is following in her present study, approx. 70 have tested positive for lyme. These lyme infected children also showed elevated antibody titers against all 4 of the neuronal antigens Moleculera tests. She said the report will be out early next year.

Dr Cunningham is speaking now.

http://ilads.org/lyme_programs/sandiego/ilads-livestreaming.php

Which tests did Dr T test for? I don't think he is known as being lyme literate, I'm just wondering if he used the proper tests and whether he then read the results properly. I only ask because when you mention bronchial involvement along with very low ferritin levels, babesia comes to mind. http://hubpages.com/hub/Lyme-Disease-And-Babesia-Steps-To-Take-To-Help-Beat-Them You should suspect Babesia if: You have – or strongly suspect you have – Lyme Disease. The onset of your Lyme symptoms was severe. You have low iron or ferritin levels: Babesia ‘feeds’ on iron and can deplete your store. (but low iron or ferritin by itself does NOT indicate infection – only use this as an indication if you also have a tick-borne illness). If you have a tick-borne illness and one of your symptoms is breathing difficulties. This is a complex symptom, because Lyme Disease itself can cause breathing difficulties, and also low iron levels from any cause can cause ‘air hunger’ – the feeling that you cannot take a deep enough breath.

Sorry, abx - antibiotics. Lyme and the coinfections are just something to perhaps investigate and keep in mind. I know it is a lot to wrap your head around. Just please keep the list for later referral if need be. Our daughter was born in 2001 with light, touch and sound sensitivities. The PANS/PANDAS symptoms didn't show up until 2008, and her lyme/bartonella pain and other symptoms didn't show up until 2011. It was a progression. Just know that if you are not finding improvement with any given treatment, you don't have to stop there. You don't have to take "no" for an answer from our Canadian doctors. There is help out there. If I had followed our family doctor's advice of "all she needs is ritalin, klonopin and a good spanking", we wouldn't be where we are now .

I would stay with the protocol your doctor has suggested. Sometimes things take a while to settle down after supplement/abx changes. I really wouldn't do anything without asking your doctor. So glad you are seeing some improvement!

I always associate DD's ticcing with die-off, caused either by the immune system or abx, and the resulting build-up of toxins. As she is allowed to detox, ticcing resolves. We ended up having to pulse tindamax for just that reason - she was unable to detox with continuous use and ticcing just kept getting worse and worse.