SSS

I was inspired today... took my dd8 to a 'pop star' birthday party, where she allowed a hairdresser to color and up- do her hair, put on a fancy, sparkly dress, and danced freely with her friends to loud music and strobe lights for 2 hours. I nearly burst out sobbing. This is the child who sat in preschool with selective mutism, a blank, scared face, unable to speak above a whisper. Had 1 shirt, literally, she was willing to wear for 6 months straight. Who used to run terrified of the vacuum cleaner, hair dryer, any loud noise. Who, at the beginning of kindergarten, wore the EXACT SAME outfit, every single day, for the first 21 days in a row. It was the only way I could get her to attend/out the door, without a complete and utter nervous breakdown. I washed that outfit every night, and tried not to trip on what the other moms must be thinking about me. Who would not let ANYONE touch or cut her hair, for years. So, there is hope. Keep plugging. There will be good days, there will be some success. It may not always be what you think it should look like, but keep working, and it will come. Fits and starts sometimes, too...

Furthermore, I think it's the NAC's ability to block excess GLUTAMATE in the brain the is really helping my dd right now. If you use the search function on this board, there are a lot of intelligent conversations about this subject. The ability to help her body produce more glutathione is an added benefit tho, not to be minimized. Isn't our whole goal of the genetic MTHFR testing to learn how to help the body detox more efficiently and produce more glutathione? The mother lode of the MTHFR. I'm sorry, I don't communicate well with scientific explanations- but the articles I posted are gems at it, IMO. One last comment: One might think: Heck, can't I just bypass all this testing and work, and buy a glutathione supplement instead? And, I have done this, for both my dd and myself, while treating heavy infection loads, to help, and found it beneficial. But LLM, and I'm butchering this, pointed out that no, it's much better to get the body to be able to produce it on it's own, by correcting the cogs out of place.

Here is an article that explains glutathione: http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html

We have had recent success with NAC, but years ago tried 5-HTP and it was awful.

Our Costco is carrying Organic Nutiva Coconut oil at a great price, iherb carries it, too. Big fan over here- Edited: for correct spelling of brand.

Without making this too long: my dd8 had been off all antibiotics and herbal treatments for months- successfully ended 2nd grade with a beautiful report card (and hard work.) Not 'cured', not 'perfect', she is 'she'. We had an uptick in OCD with getting stuck on topics, and while she has always picked any scab on her body, she began earnestly picking skin MOLES on her body- off, and bloody, about 7 total and going. Of course, I found this alarming- tried band-aids, positive incentive if she could stop, skin cancer conversations about Dr.s = no stopping, seemed a true compulsion. Tried an Azithromycin Z-pack = no change. Read up on Trich. and NAC- older posts from this board, and here are a few studies: http://med.stanford.edu/ism/2012/may/nac.html http://www.trich.org/treatment/NAC_Trichotillomania.html I began using a 600 mg pill 2x a day, and now PharmaNac 1x a day (900 mg) and 1 600 mg day capsule. Within 1 week, ALL of the skin/mole picking stopped, they are almost entirely healed. Too soon to tell, but it seems the repetitive thoughts are reducing. She said this morning out of the blue: I'm no longer afraid of my bedroom window, yeah, I can just lay there. She is double A1298C, and Epsom salt baths and magnesium sulfate cream massages have always been beneficial in the past. NAC may pose issues for sulfur challenged folks. However, it raises glutathione.

On the bright side, think of all the cyst busting you did- that's good! Because it's not easy! Maybe it was meant to go this way, and now you are meant to stop. When the student's ready, the teacher appears, or something like that ;-)

Strep can residue in the gut, and anal strep (sorry, but true)

I posted more on this topic on the wrong thread- the bipolar thread-- not computer savvy enough on this board to transfer- was on the way out the door.

Wow, I'm sorry, I posted on the wrong thread, my post here was meant to be on 'Myco, how to get rid of you'

**sorry, this post is on wrong thread** I have found the new Buhner book (on Myco and Bart) quite fascinating- He states: 'The Mycoplasma's are the most complex of the Lyme co-infections, their range of actions in the body very broad. Because they scavenge so many substances there is a lot more involved in their treatment than with simpler bacteria such as Bartonella.' The take away from the Myco part of the book, for me at least, is I would heavily supplement many nutrients with this infection in order to heal (and there are examples and details in the book) Olive oil, eggs, Brazil nut, tahini, pomegranate juice, avocados, Cordyceps, fermented wheat germ.... High end multi vitamin mineral, amino acids, etc. With a child, maybe see if you can get it in somehow with a tasty blended shake drink somehow.... The book was enlightening for avenues and suggestions for dealing with the cytokine cascade (inflammation effect from particular infections)

Yes, my Father was an engineer. My neurotypical, healthy 15 1/2 yr. old son is a straight A math and science brilliant mind. My PANS dd is average/ good in Math.

I respect what Beth Maloney wrote, and value her tremendous service.

It is completely individual, I agree, and my dd never had elevated strep titers- nor repetitive throat strep infections. But, it can be a real thing, so just thought I'd FYI.

Hi- don't know if any of you got the chance to read through Buhner's new book on Mycoplasma and Bartonella, but I've spent the last few days in it and found it extremely interesting, as he details how the infections affect all the different cells and systems in the body. Myco is not our issue, I spent most of the time on the Bartonella part, researching some of his recommendations, but 1 bit about Myco he emphasized: Mycoplasma infections, especially of long duration, are first and foremost nutrient deficiency diseases. The bacteria utilizes so many nutrients from the body, replacing the nutrients is really, really important. In bold he wrote: Meat proteins are essential. There is more, but for Myco, I thought this book offered valuable information.

I don't think it's an 'only' problem, but certainly a 'real' issue. I thought I'd share this, although it is highly personal. I did some rounds of parasite treatments with my LLMD in the last few years- A famous LLMD, Dr. H from the east, recently declared 'Parasites are now the #1 co-infection' ILADS 2012 Recently, after being off all treatments for 4+ months, my own gastro issues (constipation, stomach attacks) have flared- (not gallbladder, had that checked) I went to an insurance gastro Dr. this week, for the 1st time. No, they will not talk about parasites, yeast, gut flora- He did recommend a probiotic Align which is rated the #1 probiotic for gastro issues- by the Dr.'s and people who suffer gastro issues themselves. It is only 1 strain of probiotic- I know you've had trouble with probiotics with your dd- but I would try this one- Also, I was advised and incorporated a fiber drink daily, not psysillium, but soluable fiber, and Colace. Usually I use Oxy Powder at night (capsules) for constipation. BUT- I purchased Renew Life kit ParaGone and have started - capsules of herbs and a tincture for parasite treatment. I like the 'Renew Life' brand (can be purchased from Whole Foods, or online). I am using their fiber drink as well. So yes, parasite infections are real, happen to clean people not living in 3rd world countries, and can take all nutrients from the body, and cause very difficult gastro issues. Hope she feels better soon---

EVERY single time I feed my dd yogurt with this strain, it sets off OCD. How am I so sure? Because I have done this AT LEAST 20 times. (I never give her probiotic capsules with this strain) WHY would I keep doing this, you may ask? Keep buying yogurt, feeding it 2-3 days in a row, and BOOM! round and round, relentless, on the same subject, she is taken over, bad behavior up tics, and I throw away all the rest of the yogurt, vowing never to buy it again. And yet, months later, I do. And the same thing happens. She begs for yogurt. She refuses all milk, I think: She needs the calcium/protein, surely, at this point in the game, it won't happen, I think, or maybe it's a coincidence (again and again) I write this, because this is as true for us as the sun comes up. Now, after being off antibiotics for many months, I had to put her back on Azithromycin, because she is driving me right up the wall. Miserable. Yogurt, in garbage. FYI. Maybe true for your PANS, maybe not, but it's happening here. And I'm not joking when I say I've done this 20 times.

Also sending prayers and good thoughts throughout this procedure----

We also use a lot of organic coconut oil with cooking- I also have some Lauriciden monolaurin pellets I started taking again. Interesting about the iodine...

The Diflucan is dosed according to weight/prescription. I happen to love Diflucan, and took 150 mg a day, and weigh about 100 pounds. Make sure you have liver support on board (like milk thistle) Nystatin never did anything for me, personally. High count, quality probiotics need to be added (given at least 3 hours from Diflucan) Diet is key: Can't expect the yeast/fungi infection to get better or stay gone if sugar items/high carbs are still being eaten regulary.

Transfer Factors can help. I took Reserched Nutritionals multi- immune transfer factors during treatment- Recently, had blood work done, (been off antibiotics and herbs 4 months now) and my WBC was just under normal- surprised me, they were never low during treatment. But I am feeling run down (been pushing it/overdoing) and yeast has cropped back up (got lazy on diet- yeesh) So bought some RN transfer factor (without mushroom) for immune system help. Have also heard the 4life brand is good, but I trust the Researched Nutritionals brand to be clean.

Also sending prayers and good thoughts your way--- I have heard the Galaxy test is good, I used to read a Bartonella board that had a highly esteemed Dr. who seemed to have Bartonella as his focus, and used Galaxy labs. I believe it requires off antibiotics, and 3 blood draws in 1 week. Also, Fry labs does blood smears looking for Bart. Hang in there- more good thoughts your way for resolution and recovery for your son. P.S. I did personally get a positive Bartonella test through Igenex.

Nervousmummy, how are YOU? Do you feel like 10 weeks of Amoxicillin cured your Lyme? Did you ever get tested or looked at the symptoms for Bartonella? You matter too, you know.

I didn't read all the replies, but we had to pay cash for 2 high dose IVIG's when my dd was 6- We went through Coram Healthcare Centers (chain of infusion centers across the US) Our prescribing Dr. oversaw the directions (prescription) by telephone- directly- pharmacist at the center. Coram Dr. and nurses do these all day- totally set up - extremely kid friendly, AND, 20 minutes from our house so my dd could sleep in her own bed and not have to travel. Total cost for both IVIG's (high dose, administered over 2 days, with steroid, Benedryl, nursing staff, etc.) About $8,000. I think she weighed 42-45 pounds at the time. Our treating PANS Dr. was a DAN! Dr. who did not have an infusion center, but has a caseload of PANS patients. I do not believe Dr. K from Chicago will write the script for you to get IVIG from another area. We still had to pay our treating PAN Dr.s hourly fee's on top, of course.

I know we are talking about treating the infections on this thread, but what led me to pay cash for 2 high dose IVIG's, administered 6 weeks apart, was the very real component of 'PANS' that was the 'Exorcist Rage Episodes' Before our IVIG's, it was this issue that scared me senseless. If I was home alone when these rage episodes occurred, my dd was out of her body and mind, and I came very close to calling an ambulance more than once. I instead called my 77 year old father-in-law who lives retired in the same town to rush over ASAP. At the same time, my dd would suddenly start walking lines in a busy parking lot, then take off running through traffic. I would catch her, man handle her somehow into a car seat, her physically fighting me, just waiting for police to show up that someone was sure to have called. After this happened twice, I refused to leave the house with her without another adult. Shortly after, we did HD-IVIG. I was desperate to somehow re-set her immune system to stop this. (We had high PANDAS range Cunningham results) I won't go into detail about what IVIG's did and didn't 'fix', or the fact that what some things were 'fixed' wore off when the IVIG wore off (6 weeks later) BUT, after our IVIG's, I never had a rage episode with her again where I was about to call an ambulance, because she was so far gone I thought brain damage might be occurring, or I was scared for our safety. Nor did I ever have her run off from me again, her having left her senses.