norcalmom
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I haven't read this all yet - or listened to the video - but he's usually on target and easy to understand. http://articles.mercola.com/sites/articles/archive/2013/01/13/mercury-detoxification-protocol.aspx?e_cid=20130113_SNL_Art_1
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I agree that that Lyme can cause it. Cunningham has already said that Lyme infection will make Cam K and antineuonals go way up (and anecdotally I think I recall hearing at one point that the Lyme folks were higher that Pandas kids...but can't verify that). And of everything we read, infection of various types need to be fully treated for IVIG to fully take care of things. Notice I didn't say "work". Because my son had an underlying infection, and had IVIG twice, and he got ALOT better. Not 100%. But he has never gotten as bad as prior to the first IVIG. I consider those two IVIG's to have worked. If I think of all the anecdotal evidence I've heard over the years I know a number of "very" sudden onset kids - were set off by an extremely stressful or unusual event, not all of them, but enough to make me think it supports the BBB adrenaline theory. They had strep too of course, but I think these are the folks with the kids that can pin point the minute there kid became ill. Personally I think the pandas was there at a low level already, and with the quick opening of the BBB - "sudden onset". A very small leak becomes a burst damn. And I feel like the little Dutch boy with his finger in the hole!
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I think its failure of the BBB. Drittan Agalliu is writtng a paper (acording to his web page bio) about failure of tight junctions of the BBB in mice in state of infection. He's presented these findings at two of the last conferences, including the one he hosted. He researches BBB junctions in stroke victims, and became involved after being asked if he would look at the BBB in mice that got infections (strep). The SYMPTOMS are due to the excess of autoanitbodies (so removing them, via PEX will remove symptoms). IVIG will also reset and correct them. The CAUSE of the excess autoantibodies - in my opinion - is the failure of the BBB. The immune system will make more and more autoantibodies as long as it is finding the antigen - these autoantibodies are found in normal kids, but in half the amount as our kids. Why are our kids higher? Because the immune system works on a feedback loop. It LEARNS to make antibodies based upon what it finds. If your junctions in the BBB are tight - these antibodies can't get in in to find neuronal tissue. If the BBB is "leaking", the antibodies get into the brain, and find their target, and send signals back to make more antibodies for this target. Heres the catch 22 - the BBB opens up from adrenaline. We've all see the dialated pupils, the look of fight or flight present in our kids eyes, nightmare and anxiety.... Once the BBB opens, the auto-antibodies attack basil ganglia causing that fear response our kids have - which releases MORE adrenaline ...Which opens the BBB.... I think we may be able to break the kids into two groups. Kids who's BBB is open, but not normal. They get IVIG or PEX, and they get better. Removing the autoantibodies stops the catch 22. The feedback loop is broken and the BBB closes. As long as the child does not get infection moving forward - and even if they do as long as the infection is properly treated in a time manner they will be OK, but may be prone to pandas relapse - because their immune system has already had a taste of neuronal tissue and will be quick to generate more anti-neuronals as soon as the BBB has even the most modest leak. And The Chronic leakers - damaged BBB or chronically leaking BBB due to infection - or other abnormality. Those kids do not get better, or relapse after IVIG or PEX. Why are they "leaking"? Do they still have the intial infection? Infection of the actual BBB? Possibly damage to the BBB? Inflamation in the body that is effecting the BBB (from an infection elsewhere?) Maybe they are making auto-antibodies against their BBB.
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Problem WAS custom probiotics
norcalmom replied to MamaOnAMission's topic in PANS / PANDAS (Lyme included)
We've swithced to one with Saccharomycese Boulardii (irs a yeast) in it,after reading about how well that particular strain guards against C-Diff (which I fear because of all the antibiotics). ITs called Primal Defence Ultra and is a broad spectrum high does adult probiotic. It takes a little while to get used to - I take one once and a while and I get a bit of stomach/gas pain, but DS is used to it. That particular brand may be too much for your child to start with, but may want to look for the Sacc. Boulardii - more into on that here: http://www.mayoclinic.com/health/c-difficile/DS00736/DSECTION=treatments-and-drugs He used to take only yum yum dophilous by Jarrow Formulas. Its a chewable tablet that tastes like candy. He loved those - sometimes still give him those. What I liked about those was I could give him antibiotic with breakfast, and he would eat the tabs at snack time in his lunch box. Here is a place that sells them on line. I bought mine from Whole Foods. http://www.vitacost.com/productResults.aspx?ntk=products&Ntt=jarrow%20formulas%20yum-yum%20dophilus&csrc=PPCADW-jarrow_formulas_yumyum_dophilus&refcd=GO000000515241223s_jarrow_formulas_yumHXyum_dophilus&tsacr=24637475051&mtp=sZ1YavB2y|pcrid|24637475051|mt|b&gclid=CIqq6-G_2bQCFQmCQgodA1QAXw -
FYI- In the Mouse Model - they don't just give the mice the antibodies (or autoantibodies) They also give the mice a form of epinephrine - a stress hormone similar to adrenaline - to OPEN THE BBB. Without that the experiment does not work. Because antibodies are too large to cross the BBB. But we also know from Cunninham's research that the CNS fluid of pandas kids contains these autoantibodies - so somehow, they are crossing the BBB. The mouse model actual points to TWO causes for pandas - autoantibodies and a "leaking" BBB. I didn't really consider how important that second part was until I saw Mady Horning present her mouse study in person. A light bulb went for me. The way the immune system works - if it finds an antigen - it will keep asking for more and more of the antibody to that antigen. With our kids, it seems it keeps finding the antigen (their neuronal tissue) so it keeps making more and more of the autoantibody. But how and why is the BBB opening? Some research suggests that recurrent infection and chronic infections for some unknown reason, cause the BBB to break down. Its is not, as far as I know, "just" inflamation - but I think is impacted by the inflamatory response, makes it worse, which is why anti inflamatories help somewhat. Can the actual infection also cross into the brain? I think that would present as more typical - menningitis. But, who knows? I do know for sure that the autoantibodies are crossing over. I would think that Swedo checked the CNS for the strep bacteria (and I'm sure she is in this study). MS is an autoimmune disease that seems similar - here is wiki page on the BBB and its reference to MS "Multiple sclerosis (MS) is considered to be an auto-immune and neurodegenerative disorder in which the immune system attacks the myelin that protects and electrically insulates the neurons of the central and peripheral nervous systems. Normally, a person's nervous system would be inaccessible to the white blood cells due to the blood–brain barrier. However, magnetic resonance imaging has shown that when a person is undergoing an MS "attack," the blood–brain barrier has broken down in a section of the brain or spinal cord, allowing white blood cells called T lymphocytes to cross over and attack the myelin. It has sometimes been suggested that, rather than being a disease of the immune system, MS is a disease of the blood–brain barrier.[21] A recent study suggests that the weakening of the blood–brain barrier is a result of a disturbance in the endothelial cells on the inside of the blood vessel, due to which the production of the protein P-glycoprotein is not working well.[citation needed] There are currently active investigations into treatments for a compromised blood–brain barrier. It is believed that oxidative stress plays an important role into the breakdown of the barrier. Anti-oxidants such as lipoic acid may be able to stabilize a weakening blood–brain barrier.[22]"
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Vitamin D always makes me sick
norcalmom replied to MamaOnAMission's topic in PANS / PANDAS (Lyme included)
recent article on Vit D and interplay with clacium and Vit K2. Also, Vit D is what enables your body to use calcium, and its Fat soluable - so try to take it with some fats. Ironicaly my DS had to pick an element for science and draw it, and research it, which is how I found that out - he picked Calcium. good luck. Here is article on vit D and the vit K. I just saw this a few days ago. Very interesting. http://articles.mercola.com/sites/articles/archive/2012/12/16/vitamin-k2.aspx?e_cid=20121216_SNL_Art_1 -
I'm sorry to hear about this after so much improvement. It sounds basic - but have you tried 3 days of Advil - dosing every 4-6 hours? I have found jumping on the Advil at the first sign of pandas symtoms very helpful in shortening/lessening symptoms. DS no longer has long exacerbations - but will still have a few days of irritabiity and some tics when he gets a cold. I don't know if it is because we're finally making headway with the chronic infection, or if its because I always give him at least a day of Advil when I even THINK something maybe happening. If it continues, I'd consider a short round of steroids - or a highly anti-inflamatory diet for a few weeks.
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Parasites increase dopamine and seratonin production
norcalmom replied to LNN's topic in PANS / PANDAS (Lyme included)
Freaky. But you are right. There is SUCH a huge gap between research, and facts found in nature and what doctors are willing to "believe". The Medical system is backwards thinking. -
DSs lated a long time and required steroids, and even after steroids - would become nauseas if I missed a does of Advil in the middle of the night (day 10 I thought it might be safe to finally not wake him up - and he had not worke me up yet...) - so keep up the Advil every 4-6hours for several days if they have migraines or nausea. lots of water of course.
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There is a lot of research on Vit D3 and another autoimmune disease - that is also beleived to have a very key component related to the Blood Brain Barrier. Multiple Sclerosis. Google it. Below is an excerpt from Permutter blog in 2011. And here more info a friend of mine with MS forwarded to me. http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=6706 ___________________________________________ In trying to unravel this relationship, scientists concluded that perhaps living farther away from the equator might relate to MS risk because of a lack of sunshine. It is known that sunshine has a role to play in immune function, so scientists thought that perhaps a lack of sun exposure during winter made people more susceptible to the disease. But one other connection to sun exposure began to emerge. It is known that one of the key physiological events triggered by sun exposure is the body's production of vitamin D. Interestingly, research clearly demonstrated that MS patients have remarkably lower levels of vitamin D compared to non-afflicted individuals. NOTE: Vitamin D can be toxic in large doses. People with MS should be aware of these findings, but should also discuss them with their neurologist. These findings dovetailed nicely with the newly emerging reports expanding the understanding of the role of vitamin D in human physiology, not just for bone health, but as a key player in immune function as well. To put the idea of vitamin D's relationship to MS to the test, researchers in Toronto -- led by Jodie Burton, M.D. -- studied 49 MS patients for one year. Twenty-five of the patients received vitamin D in a dosage increasing up to 40,000 units daily, which was then reduced over the one-year period. The control group was given no vitamin D supplementation. The results of their study, published in a recent issue of the journal Neurology, were astounding. The group receiving the vitamin D demonstrated a remarkable 41 percent reduction in new MS events, a figure that markedly exceeds what is claimed by the standard drug treatment discussed above. What's more, the treatment group actually demonstrated improvement in physical function, a finding not seen in the control group.There were no meaningful side effects in the group receiving the vitamin D treatment and researchers demonstrated that blood calcium levels remained perfectly normal throughout the test, even at the very highest dosages of vitamin D. This was an important part of the study since concern has been raised that high vitamin D levels might increase blood calcium levels. The authors reported: We have demonstrated that vitamin D intake well above current recommendations and (vitamin D) levels well beyond the physiologic range, do not expose patients with MS to adverse biochemical or clinical events. Compared to a control group whose intake of vitamin D generally exceeded North American recommendations, only those on the treatment regimen had evidence of immunologic effects. As a practicing neurologist actively treating patients with this sometimes-devastating disease, this new report has clearly offered a potentially new and powerful tool for my toolbox. Vitamin D is incredibly inexpensive, and, according to this report, safe and powerfully effective as well. Clearly we will need to see more research to confirm these findings, but what a breath of fresh air it is that such a wonderful gift might be available at the health food store, or even from the good old sun itself.
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Question re: underlying infections
norcalmom replied to Hayley's topic in PANS / PANDAS (Lyme included)
I thought the NIMH study strickly eliminated anyone with other infections - STREP only. Do they know that your child tested positive for both Lyme and MycoP? -
looks like it falls into the mitochondiral - sppports all kinds of cells group. Here are a couple things wikipeida says about it - Metabolism Phosphatidylserine is biosynthesized in the body by condensing the amino acid serine with CDP[disambiguation needed]-activated phosphatidic acid.[15] It is also an important precursor of phosphatidylethanolamine and phosphatidylcholine, although in animals the pathway to generate phosphatidylcholine from phosphatidylserine only operates in the liver.[16] Memory and cognition Early studies of phosphatidylserine distilled the chemical from bovine brain. Modern studies and commercially available products are made from soybeans, because of concerns about mad cow disease. The fatty acids attached to the serine in the soy product are not identical to those in the bovine product, which is also impure. Preliminary studies in rats indicate that the soy product is at least as effective as that of bovine origin.[2][3] Later clinical trials in humans found that "a daily supplement of S-PS (soybean derived PS) does not affect memory or other cognitive functions in older individuals with memory complaints."[4] On May 13, 2003, the U.S. Food and Drug Administration stated "based on its evaluation of the totality of the publicly available scientific evidence, the agency concludes that there is not significant scientific agreement among qualified experts that a relationship exists between phosphatidylserine and reduced risk of dementia or cognitive dysfunction." FDA also stated "of the 10 intervention studies that formed the basis of FDA's evaluation, all were seriously flawed or limited in their reliability in one or more ways." It concludes that "most of the evidence does not support a relationship between phosphatidylserine and reduced risk of dementia or cognitive dysfunction, and that the evidence that does support such a relationship is very limited and preliminary." FDA gave "qualified health claim" status to phosphatidylserine, stating that, "Consumption of phosphatidylserine may reduce the risk of dementia in the elderly" and "Consumption of phosphatidylserine may reduce the risk of cognitive dysfunction in the elderly."[5] [edit]Sports nutrition Phosphatidylserine has been demonstrated to speed up recovery, prevent muscle soreness, improve well-being, and might possess ergogenic properties in athletes involved in cycling, weight training and endurance running. Soy-PS, in a dose dependent manner (400 mg), has been reported to be an effective supplement for combating exercise-induced stress by blunting the exercise-induced increase in cortisol levels.[6] PS supplementation promotes a desirable hormonal balance for athletes and might attenuate the physiological deterioration that accompanies overtraining and/or overstretching.[7] In recent studies, PS has been shown to enhance mood in a cohort of young people during mental stress and to improve accuracy during tee-off by increasing the stress resistance of golfers.[8] [edit]Attention-deficit hyperactivity disorder First pilot studies indicate that PS supplementation might be beneficial for children with attention-deficit hyperactivity disorder.[9][10] [edit]Safety Traditionally, PS supplements were derived from bovine cortex (BC-PS); however, due to the potential transfer of infectious diseases, soy-derived PS (S-PS) has been established as a potential safe alternative. Soy-derived PS is Generally Recognized As Safe (GRAS) and is a safe nutritional supplement for older persons if taken up to a dosage of 200 mg three times daily.[11] Phosphatidylserine has been shown to reduce specific immune response in mice.[12][13] [edit]Dietary sources PS can be found in meat, but is most abundant in the brain and in innards such as liver and kidney. Only small amounts of PS can be found in dairy products or in vegetables, with the exception of white beans.
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Mom psitive for mycoplasma pneumonia
norcalmom replied to colleenrn's topic in PANS / PANDAS (Lyme included)
You should watch your IgG - if it is going up (significantly, like a hundred points or more) then you have an active infection. If your IgM is posistive you obviously have an active infection BUT WHAT THE DOCS SEEM TO NOT KNOW FOR SOME REASON IS THAT IF YOUR IGG IS POSITIVE YOU NEED TO RETEST IT TO SEE IT IT IS GOING UP, STAYING SAME, OR GOING DOWN... Because after a while your body doesn't make the IgM anymore - that goes for repeat mycoP infections or chronic mycoP infections. For someone reason they all seem to learn the same (erroneous) thing in medical school - that the IgM needs to be positive. Not true. And, Our kids seem to have almost a different version of this entirely - they don't have coughing lung infections at all. And, from what I keep seeing - they can't get rid of it with azithromycin or broad based antibiotics. Need to be tartgeted. From what I keep reading - Azith may help if you have a cough ("typical" atypical pneumonia- mycoplamsa), but once it is systemic, you need something to target it specifically. Doxy is in the class of drugs that will do this. There are others. Azith, penicillin, augmenting are not. I don't know about treating yourself. I've not tested myself for it yet. I guess I better. I've no symptoms at all, but since I know DS is positive I should make sure I'm neg. Good luck - retest your IgG, give it 4 months or so. -
Can't afford doryx/ have you tried generic?
norcalmom replied to MamaOnAMission's topic in PANS / PANDAS (Lyme included)
I think that the only differences is stomache issues. Doryx has sun senstitivity and the same age warning since it is doxycycline, its just in a time release formula, and that is easier on the gut to take than plain Doxycycline. "DORYX (Doxycycline Hyclate Delayed-Release Tablets, USP), for oral administration, contain specially coated pellets of doxycycline hyclate, a broad-spectrum antibiotic synthetically derived from oxytetracycline, in a delayed-release formulation for oral administration." And now there is a another (generic) brand that is doing timed-release of Doxycycline (so generic Doryx) , and should work just as well since it is also esentially doxycycline in a formula that is timed release. FYI - event he Doryx is hard on your stomach, so most people take it with food. My DS will call home from school at 11:00 am if he didn't get enough breakfast with his morning does of Doryx! -
Can't afford doryx/ have you tried generic?
norcalmom replied to MamaOnAMission's topic in PANS / PANDAS (Lyme included)
I heard that you can now get the generic. I've not tried it yet, but probably will since even with insurance coverage the Doryx is expensive. I'm assuming you've tried plain old Doxycycline and your daughter's stomache could not tolerate it? Here is a link to it. It may even be an imporovment to the original Doryx formula, since they have had years since the Doryx was under patent protection to work on improving what was there - you never know. Its listed as equivalent, but "may have different inactive ingredients". Please let us know how it goes. Its should also result int he Doryx price coming down a little - since they now finally have some competition. -
Personally, I would go to Dr K, and to a LLMD. There is a list of labs to hunt for infections pinned at the top of the board - Lyme and Co-infections and I would highly recommend you get some mycoplasma testing done - which any doctor can do for you. IgG and IgM. If IgM positive - you have it for sure, and its probably a fairly recent infection. If IgM is negative - and IgG positive, you probably have an active infection (your doctor will tell you otherwise - ignore them), and get the IgG test done again in 3 or 4 months - to see if it is going up. That indicates you have a chronic infection (IgM eventually goes done in chronic infection - but the IgG conftinues to rise). Get a basic immune panel - IgG, IgM, IgA - the 4 IgG subclasses, and strep pnemonaie titer panel. I'd also get some lydococaine (or equivalent - it is a prescription numbing cream) to numb both of the inner elbows prior to having labs done. Nothing worse than a PANS kid with needle phobia...and one bad poke is all it takes! There are ALOT of kids with PANS - but didn't have a postive strep titer. IVIG really helped my son a lot. He had tics, and rage, and still has some OCD that is triggered by me. I'd say IVIG got him about 70-80% better, but he would start to slide back after viruses (not as bad as before) we did two IVIGs - before finding out he had a chronic mycoplasma infection! He had NO physical symptoms of mycoplasma, and he did not have IgM positive - three doctors had to eat crow because when we tested it again and saw the IgG going up (significantly) they all agreed he had an active infection. And, he had been on full does azithromycin for months before -. So, that antibitoice did NOTHING to combat the mycoplasma - although I have to say when he went on azith originally I saw him get much, much better in first couple weeks. And for a few months, I thought we would be one of the lucky ones that didn't need IVIG...wishful thinking. My son just started a homeopathic treatment too. I am coming at this from the opposite end that you started with - we started with antibiotics, then IVIG, then stronger antibiotics (combined with herbs for mycoplasma) and now brining in homeopathy. I almost gave myself a nervous breakdown prior to first IVIG - for no reason. I know its a little scary, but after I saw how much netter he got, I knew when he started to slide back 8 months later I would not wait for things to hit rock bottom again. I wish I had not waited so long to get the first one. I think you don't know how bad it is sometimes because it becomes your norm, and we forget what truely normal is. DS is not there yet - but he continues to get better - IVIG gave him a hug bump. I don't know how many years it shaved off this process, or if it would even be possible to get where we are today without it. That was our experience. I wish you the best with your son and getting him healthy whatever treatment you choose.
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This isn't Doctor Shopping, you are looking for a pandas specialist. So, if you are speaking with a doctor - its fair to ask - How many children have you treated with this disorder. How have you treated them and how did they respond? Do you have some current research I can read on this disorder? What types of studies are being done right now on this disorder. If they can't answer any of those questions satisfactorily - you are dealing with a person that doesn't know anything about what your child has. Probably knows less than you. Certainly can't tell the difference between PANS and many other disorders - because they've never seen it before. If there are no pandas speciialists in your area, then you are looking for peditrician willing to work with a pandas (or PANS) specialist - like an LLMD (I would considerer an LLMD a PANS specialist)... There is a lot to know with these kids, and most of us have been to a number of other doctors first - because it is a diagnosis of "elimination" so you often have to see some specialists to rule out other disorders - esspecially neurological ones if your child has neurological symptoms. And, if those docs don't dx you - that is OK - becasue they knwo VERY little about the disorder in the vast majority of cases. They probably don't even know how littel they know, and also probably feel that they should be able to diagnose the disorder - so they may atempt to - without the proper testing and resources. The pediatricians themselves don't have time to become a pans speciialist for the most part. There is too much too know. They have about 15 minutes per appointment, and lots of other common disorders they need to know about. Unfortunately our SYSTEM has put these docs in this position. There is no affirmative statement from a guiding group on how to diagnose and treat - and there is this word "controversy" that surrounds this disorder - and opinions on both sides. Unless you read all the research (and between the lines of all the research) and then form your own opinion - and even then it is difficult because the research is misleading. Take for example Ed Kaplan's paper on tic and OCD exacerbation. He found no correllation between strep infection and exaerbations in Pandas dx kids vs "traditional" tourettes and OCD kids. It was a large study. They guy runs a WHO strep lab - only one in the US. Its a fair study - but - I can think of many reasons why the study is misleading. First, why not choose "normal" kids as the control group rather than kids with tourettes and OCD? And - the pandas kids were all very quick to get antibitotics (or were on prophylactic)...and many pandas kids react to much more than strep (viruses and stresss)- there was no accounting for that....the list goes on. And the pandas kids don't have to actually culture positive to react - they just need to have an immune response to have a flair - and he was only looking for active strep infection via ASO and culture...the list goes on, and he discloses alot of this himself at the end of this paper - but the truth is the pediattirican don't see this. They don't read the fine print at the end of the paper and take into account how it may bias the study. The MODEL is wrong - we need PANS / PANDAS specialist. Like a lot of other disorders. You need a doctor that is the most up to date ont he latest reasearch. Most peds are horribly out of date. A doctor that syas they don't "believe" in something without reading ALL the research - not just the abstract - not just the words "rare and controversy" and even that the treatment is SSRI and CBT ( because that IS currently the treatment recommended by the NIH !) You need a doc that understands that we are in the early part of this "learning curve" and is willing to take what is known via research - and via anecdotal evidence (like the fact that several these docs have been treating with IVIG and PEX for over 10 years and have hundreds of success stories - and a long list of test looking for various infections that your ped is never going to run!). All the Peds need to know is who to refer you to...They need to know a few signs that indicate pans - and the names and phone numbers of who you should call next. They shouldn't even attempt to diagnose it - or differentiate it between garden variety OCD and tourettes - its nearly impossible to do at this point in time (until there are some definatvie blood tests) Sorry for my rant. It isn't our job to train or convince the doctors. LEt the market speak for itself. Take you kid to a specialist, or a doctory that is trying to get up to speed on becoming a specialist.
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I just came across these very interesting articles on the Lyme board. One shows OCD (over grooming "trich mice") cured by bone marrow transplant. And the other is research on gilial cells in mice and autism spectrum disorders. Very good articles - I hope this nobel winning scientist is on the pans researchers radar! They could do a lot together. Thanks for posting Panlym- _________________________________________________________ Hi all, I came across a research article relating microglial activation and autism by nobel prize winner Dr Mario Capecchi. It helps us understand how infections can cause BBB disruption and cause a lot of autoimmune diseases including autism,lyme,pandas,ms...... http://esciencenews....s.immune.defect Also the website https://www.stopcallingitautism.org/ has a lot of information regarding this and their treatment protocol to stop the neuro inflammation which is the cause for a lot of our kid's problems. I hope this helps. Panlym
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I and my husband get the flu shots to reduce exposure for DS. We have never reacted. You can also look into what the predictions for the virulence of this years flu season will be like - and then decide.
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Interesting research that can help us
norcalmom replied to panlym's topic in PANS / PANDAS (Lyme included)
These are great articles. I'm going to post over on the pandas board too. Thanks for sharing them! -
Defence of long-term abx and abx resistance
norcalmom replied to kos_mom's topic in PANS / PANDAS (Lyme included)
heres what wikapedia has to say: http://en.wikipedia.org/wiki/Antibiotic_resistance and I read a book on it a while back. just go to amazon and search on "antibiotic resistance", I read the most basic I could find, as I was (am) more interested in how resistance may develop and affect and individual (my son) than protecting an entire community. you can get a ton of scholarly articles by googling it as well. Its also an argument of what is pans - is it auto immune, or is it an active infection - and - what is the mechanism in the antibiotic that is working. Many antibiotics have other properties - like azithromycin for example. It was originally developed to be an anti-inflammatory. Perhaps it is the anti-inflamatroy property that we see as effecting our kids. Also, some kids may have active/chronic/or recurrent infections...some may not. And antibiotics also have immune modulating properties (beyond killing off bacteria) that is not fully understood. There are people studying it... I don't think this is helpful in making any arguments, but may help in understanding what the arguements for not prescribing them may be. I believe that immune deficiency is another reason that antibitoics are routinely prescribed - either CVID or PID. I heard talk of this ar a recent Immune Defeciency Foundation patient meeting. BTW - what I learned in reading my book was the a low does is what you want to avoid to avoid resistance being created in an individual. So, for me, I stopped the "prophylactic does" and moved to full strength. (via our LLMD - who are not afraid to give scripts if there is any evidence.. at all... of any...possible infection... of any kind) -
Developmental Pediatrician doesn't believe in PANDAS!
norcalmom replied to Tattoomom's topic in PANS / PANDAS (Lyme included)
couple thoughts- - I found a long time ago I don' have the personal energy to convert docs to my way of thinking. Find a new doctor. Its not worth your time. We need a top down approach for most docs. -If you insist on trying to convert you doctor - move the argument to an immune argument, not strep. The pandas controvery exists because of the S in pandas - because it is almost impossible to link the disorder to strep - and all the papers involving strep are being disputed hotly. The informaiton on reserach studies on mice, and the brain, and antineuronal anitbodies is stronger. Let Swedo try to prove the link to strep. This is not done in other auttoimmune diseases - they just say - "here is the condition, here are markers (test) that assist with dx of the condition, here are several things that probaly contribute to it statistically, (viruses, eposes, genes, toxins, other immune conditions) and here is some treatment found helpful for it. They don't care about what causes (well the do at the very basic research level, but only inthat it may help them with treatment, most admit they cannot stop the trigger - like a virus - from occurring, so they focus on what it does to the cell and how to block or enhance function that has gone wrong). And we are WAY behind these other conditions - we should floow their example and focus on what works as treatments. Esspecially since its probable more than one thing. For expample I read interesting statistic on MS (or was it Lupus?) that 99.9 perconet of a sample group tested had had EBV (I think that was the virus) ...but that only 70% of normal people had had EBV (its VERY common, just like strep)- now can you prove that EBV caused the condition - no - but somehow it is statistically linked to the condition. AND there are other factors statistically linked to the condition as well. I think we will find our kids are the same. Sorry for my rant... -
If your child has strep throat - I don't think Doryx or Doxy would be the antibiotic of choice. Doxy is usually used for other infections that are without cell walls, like Mycoplasma and Lyme. so, if your pandas child has those types of infections, then yes, it will be helpful. For strep? I dunno - from what I've read there are other classes of antibiotics that are more effective agaisnt strep.