JuliaFaith

Very interesting article on connection between strep and dopamine. Explains a lot of behaviors. Thank you so much for sharing!

We are using 'Chlorhexidine' as a swish and spit 2xday. Ds swishes for minimum 30 seconds. Best to do after eating and before bed so it stays in mouth. The reasoning behind the xylitol gum is that it is on the mouth for so long. Other rinses may not have as much effect per doctor. Jenniferg-- Azith abx did not kill the strep which tested positive and is the same kind as you find in throat.

Our doctor is doing an MRT (post PTSD study) with patients right now. Following closely. Have a margarita for me too! Good vibes your way! :-)

jenniferg--My son was on Azith for 1 month before testing positive for the strep in mouth, hence the mouthwash.

Worrieddadandmom-- we have had a lot of job changes/situations in a very short period of time. Hope that does not happen to your family. Our practitioners are reeling from all the changes! Our employers plans, three so far this year, and a few last year, had increasing deductibles and costs. We already pay for most costs out of pocket anyway (naturopathic drs.). Some have said as competition increases possibly costs may go down. We just had two new companies join our state recently. Will wait and see. Only a few are controlling the most profits in our country (just read 'The Crash of 2016) unfortunately. We will hope for the best.

On phone so excuse typing. Kayanne--swabbed cheek/teeth 4nikki-this is when I am glad we did tonsillectomy Mayzoo--thank you for the toothpaste/mouthwash ideas! Just the one strain of strep that the swab tests (per our Dr.) can be found in a few places. There are several strains.

3Bmom--Love your information and articles. Thank you for sharing. Personally, we have benefited from both side of the medical arena, however, some of what I learn about 'big pharma' makes me wonder where the 'best care of humans' seems to be missing from the equation. Worrieddadnmom--So sorry your insurance costs are so high, can totally relate. We have had both "obamacare" insurance and 'thru a job' insurance and the job insurance has been increasing at an alarming rate right along with the 'Obamacare'. Also, there are others in our area that have not been able to afford health insurance (and they work full time) and now can. This saves us (as taxpayers) a huge amount because these individuals would use the emergency room for health care before, which is obviously very costly. There are always two sides to these issues.

Just had ds's weekly appt. for Neurofeedback at MD's. During our short discussion, I mentioned that someone on this forum had found strep in their child's mouth (thank you!). It was her that discovered it! Such a small world. She said that she has a couple of patients that have been like my son, PANDA symptoms seem to linger and not go away completely. My son had strep show up positive for the first time ever, 3 months ago in her office. She treated him with Abx but some "brain" symptoms have lingered. Now today, we have this conversation, so she tests his mouth. He is positive for Strep! She tested mine and it is negative. His father just started using the mouthwash (prescription) a week ago for mouth surgery tomorrow. Son says he has started feeling a little better in the last week...seeing a pattern here. Dr. prescribed the mouthwash (Chlorhexidine Gluconate) for 4 weeks for son. Xylitol gum was recommended as well. Asked that dh continue to take his for another 3 weeks. Will be so interesting to see the results. Dr. is thinking that maybe strep in the core cause of son's PANDAS and that strep may just be hiding in unusual places in those that are testing negative in the throat. This, after I have been saying, for 4 years, that strep is not his trigger!!! Wow! :-)

Two years later, after Valtrex, Valcyte, homepathy, naturopathy, my son ended up doing GCMAF which got him out of the viral symptoms. They do have some new products that may be easier to take than the shots we did. www.gcmaf.eu Six months out from treatment and he is holding steady at a new,much higher baseline. Will be interesting to see his blood work we just did.

Asked our MD about the CBD and she said that some do not see results until 2 months down the road (but said "try it!"). Our ND also recommended that we try it. Both said that it can help the 'brain to heal.' We are trying some from a private source. Waiting to see how it goes. Went up to 4 drops 2xday at one point but I believe it was making ds feel too sleepy. He thought he was starting to feel like the beginning of PANS (scary). Now we are down to 2 drops 2xday (this source is much stronger than the Bluebird company). His appetite had increased a lot but now seems to be slowing down a bit. Definitely a paradoxical shift in thinking.

Rowingmom--Great to hear about the Japanese knotweed! Found this article (study on mice by the government) that may answer your questions on CBD: http://www.cancer.gov/cancertopics/pdq/cam/cannabis/healthprofessional/page4 "Cannabinoids may also contribute to pain modulation through an anti-inflammatory mechanism; a CB2 effect with cannabinoids acting on mast cell receptors to attenuate the release of inflammatory agents, such as histamine and serotonin, and on keratinocytes to enhance the release of analgesic opioids has been described.[35-37] "

jduffner--PM'd you

We did GCMAF and it was the best treatment for my son at the time. It mainly targets virus(es) and immune system. We addressed bacterial/fungal stuff before trying it and treatment was pretty short for us. He is holding steady at a new, higher, base-line now for ~5 months so far, and seeing changes in how he responds to past triggers in a better way. PM me if you want any additional information.

Not much time to answer, but definitely agree with anti-parasitic treatment (it usually includes worms). Because of experience with anti-fungal would think about doing an ERMI on home or look into possible 'mold.' No one wants to do this but can help significantly with healing. Also, hoping you are doing some kind of oil (fish/primrose etc.) for inflammation, and addressing detox (chlorella etc.) as you are killing off a lot at once. We take 1 capsule a day of activated charcoal (when ill) at bedtime which also helps mop up toxins and gets rid of them (can remove vitamins/minerals so make sure getting some of those in as well). Good to see you have some great doctors!

This article struck me as very important, not only because my family has had several concussions but from the perspective of brain injury and how our body reacts to it seems to also cover PANDA??. Title of Article: "If You Give a Mouse a Concussion". Here is a thumbnail of what happens: -A mild brain injury occurs (concussion or PANDAS?) -Impact damages blood vessels lining the skull, causing some to burst or leak. -The body responds, partly, by producing molecules called ROS, which mistake the injury for the intrusion of a foreign body. -The ROS (useful for fighting bacteria infections) swarm around the injury and instead of healing cause damage by tearing up the glial limitans, the thin membrane separating the brain from tthe fluids around it. -Fluid carrying ROS from the damaged blood vessels leak through the new holes in the membrane and come into contact with brain tissue, destroying it. Anyway, the point of the research is applying glutathione immediately after the concussion, through the skull, reduced brain tissue damage by nearly 70%! Wonder if there is a cream glutathione? Would be interesting to try applying to the outer skull at the beginning of a PANDAS flair and see what happens. Can definitely see why this is a supplement often prescribed.

Page 18-22 of this article includes a discussion among two doctors at a 'Summit' about the use of CBD. Very interesting. http://www.betterhealthguy.com/images/stories/PDF/THRiiiVE%20Summit%2011%20Notes.pdf

http://it-takes-time.com/toxic-mold-basics/

My ds16 is taking Hydroxyine at night to help with sleep and it is an antihistamine. He says that it helps. We did lower dosage to 1/2 tab (very small to begin with) because he was feeling too sleepy the next day.

3bmom--Our doctor had us read Dr. Shoemakers book (cannot find it to give you title although I think he has a newer one out now). She called and had a discussion with Dr. S in regards to our case and probably other cases. She treated us a bit differently but did use some of Dr. S's protocol and some of the tests. It must have worked because my whole family is feeling pretty good. Not sure if our house has an ERMI under '2' but we have done all the remediation that we know of, but have not done a final ERMI (our last ERMI was ~50% lower than the first. This was before our last remediation so we figured it must be pretty low now.). On Dr. Shoemaker's website, I believe he lists which practioners have been trained in his protocol (not a lot). It seems any doctor could run some of the blood tests though, and have some insight based on this presentation and/or training. Wish you had a doctor more open to looking into this. Maybe you could keep looking for an integrative MD or ND that could address just this issue (the harm would be that you like them too much and cannot go anywhere else like in our case!)? What I found interesting on the slides is that the mold spores are not always the problem, but the dust particles they leave behind.

My ND also said that melatonin helps with stomach issues. Not sure why or how but it helped.

Mold was an issue with my son and detoxing from it and remediating our house was definitely part of the solution for his healing. We did almost all of these tests and they supported our doctors' muscle-testing findings that mold was an issue. Love this chart because of the explanation along side each test. Below this page is the entire slide show on the presentation: http://www.slideshare.net/keithberndtson/mold-toxicity-syndrome-cirs

Prayers and healing thoughts your way!

You may want to join the GCMAF fb site. When I was on the FB site there were some children that were having really great results or others not as much. The moderator, at the time (I am no longer part of the site), seemed to have doubts about the bravo being as effective as the gcmaf just because of lack of trials etc. You have to sign up to join the site and then wait to be welcomed which took 3-5 days, I believe. If you decide to do the bravo, many on this forum may benefit greatly from your experience. Best healing wishes!

http://pubs.acs.org/doi/pdf/10.1021/es405022f

This article is interesting-thank you sharing! The genetically engineered part makes me a bit nervous though, after reading much on GE foods and our health. For comparison purposes: The www.gcmaf.eu is something the body produces itself (blood product) and it is supposed to do some similar things. My son did the treatment and has had better health and we are hoping to continue to see even more positive results. It was ~$1600 for 6 months of treatment (not inexpensive) but is supposed to last a lifetime (for some anyway). His baseline is much higher now than before the treatment and, knock on wood, is holding steady for 5 months now. Before this treatment, the longest he held steady was 6 weeks after taking Valcyte.