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Hello, There is an article in the Fall 2015 issue of the trade magazine "Biosupply Trends" that summarizes PANDAS/PANS/CANS and provides highlights of some small studies that looked at efficacy of tonsil/adenoid removal versus antibiotic treatment. Interesting. Jump to page 48. http://www.bstquarterly.com/emagazine/currentissue/

I can't take any credit for the petition, just passing along the information.

I forgot to point out to everyone that 25000 signatures are needed by Feb 10 and we are only about 15% of the way there as of today. If you want to get the White House engaged on the issue of Lyme disease, sign the petition and ask your friends & family to do the same.

Well done Hopeny! I forgot to point out to everyone that 25000 signatures are needed by Feb 10 and we are only about 15% of the way there as of today. If you want to get the White House engaged on the issue of Lyme disease, sign the petition and ask your friends & family to do the same.

The petition may be found here: https://petitions.wh...isease/Pj9jG0pX. The language of the petition is as follows: we petition the obama administration to: Reform the Infectious Disease Society of America Treatment Guidelines for Lyme Disease Lyme disease is at epidemic levels, posing a significant threat to public health. Lyme can lead to chronic and debilitating effects if not properly treated. Lyme is leaving masses of people in progressive states of illness and financial ruin. The Infectious Diseases Society of America's treatment guidelines are to blame, they promote the idea that Lyme is a simple, rare illness that is easily cured with 30 days of antibiotics. This is not true. Insurance companies are denying payments for medications even when deemed medically necessary after 30 days. Doctors who treat Lyme patients are being investigated and prosecuted for not conforming to such guidelines. Please sign this petition to reform IDSA guidelines and allow doctors NOT Insurance companies, to decide what is medically necessary.

The petition may be found here: https://petitions.whitehouse.gov/petition/reform-infectious-disease-society-america-treatment-guidelines-lyme-disease/Pj9jG0pX. The language of the petition is as follows: we petition the obama administration to: Reform the Infectious Disease Society of America Treatment Guidelines for Lyme Disease Lyme disease is at epidemic levels, posing a significant threat to public health. Lyme can lead to chronic and debilitating effects if not properly treated. Lyme is leaving masses of people in progressive states of illness and financial ruin. The Infectious Diseases Society of America's treatment guidelines are to blame, they promote the idea that Lyme is a simple, rare illness that is easily cured with 30 days of antibiotics. This is not true. Insurance companies are denying payments for medications even when deemed medically necessary after 30 days. Doctors who treat Lyme patients are being investigated and prosecuted for not conforming to such guidelines. Please sign this petition to reform IDSA guidelines and allow doctors NOT Insurance companies, to decide what is medically necessary.

Hi tpotter, no we haven't felt the need. Our Pediatric LLMD likes to keep the protocol as simple as possible, with as few "extras" as possible. DS10 takes Burbur, parsley, multivitamin, cod liver oil, vitamin c, and a probiotic as well as methylb12 and methyl folate (the latter 2 are to address a single MTHFR 677 mutation). We also opt to throw in the occasional Epsom salt bath for good measure (for detox). So far it seems to be enough and DS continues to recover while on his pulse antibiotic treatment. Our LLMD runs safety labs every 3 weeks to check metabolic/liver function, which is very reassuring as the parent I can tell you!

Hi Hopeny, Yes, our DS10 takes Burbur, 15 drops per day. We initiated it with the blessing of our LLMD. It's for detoxification. He started taking it when he was 9 and weighed about 70 pounds. He takes Nutramedix Parsley as well, also for detox and our LLMD approves of that as well.

We visited NYC in July (also as part of a medical trip) with DS's age 7 and 9. It was fabulous! We stayed in midtown at the Belvedere. http://www.belvederehotelnyc.com/. (DH found a great deal somewhere on the internet.) There is a TON of stuff to do in NYC with kids. I suggest getting some books on visiting NYC with kids from your library (Frommers has a good one). Some highlights for our family: Central Park (huge playground at Columbus Circle, sailboat pond - you can rent your own miniature boats to sail - fun!), Statue of Liberty (we went early in the morning to avoid the long lines; kids enjoyed seeing it up close from the ground - it was closed for renovations - and there is a good free audio tour for kids and adults which they enjoyed), seeing the nighttime lights at Times Square (and taking a spin on the indoor ferris wheel at Toys R Us which is right there), the Empire State Building (go at night for short lines and a stunning view of the city!), the American Museum of Natural History, The Met ("pay as you will" - don't feel you need to pay full price if you're just going to breeze through quickly with the kiddos), and the LEGO store at Rockefeller Center plaza. NYC does have a bed bug problem, but we were able to find a clean room by screening hotels using www.bedbugregistry.com before making a reservation ourselves. I also recommend just doing a google search of the hotel you are considering + bed bugs to see if anything comes up on any other travel sites such as Trip Adviosor. Then inspect your room yourself right when you get there to make sure it's clean. We do this no matter where we are traveling. Enjoy!

I can't speak for Dr. K, but Dr. T (NJ) tests for other triggers. Have you looked into Lyme yet? I know some out there feel it is overdiagnosed and I do not want to lead your thread down a controversial path, but for my DS, it appears that Lyme/coinfections are definitely his issue, not strep. Wish someone had told me to check for it with a good Lyme doc and IGeneX testing years ago when this all started.

We separate doctor appointments from blood draws. We go to the doctor appointment, get the test order slip, and then get the draw done on a different day. It helps to be able to tell doctor-weary DS9 that the doctor visit is just a "talking appointment". Good for you in taking the next step to help your child get well. It's not easy for DS (or you), but you are doing the right thing! Press on!

My DS9 has his first appointment scheduled at Jemsek Specialty Clinic in a few weeks. He is scheduled with Tara Fox, CNP, who I am told sees all the pediatric patients. If you have have worked with Dr. Jemsek's clinic, especially Tara Fox, please PM me with your experience - good or bad. We are traveling from out of state because we want to see one of the best and it's important to me that it be worthwhile. Your candor is appreciated and your comments will be kept confidential. Thanks!

I am about halfway through it. While it is very interesting, I haven't yet read anything that makes me say "ah ha!". It's a scientist's look at how infection affects generations of people. The assertions are solidly backed up with summaries of laboratory studies and retrospective analysis of survivors of challenging times (e.g., famine). Glad I was able to borrow it from the library as it is not a 'must-have' for the home library, IMHO. Not finding any practical, ready-to-apply Information, but still very interesting! In case you haven't heard about it already, the author of the book, Paul Patterson, participated in a discussion with Beth Maloney (Saving Sammy). I haven't listened to it yet, but it's possible you could hit the highlights of his book by listening to their discussion. I'm sure you could find a link to the audio archive on the Internet somewhere.

landamom, just PMed you.

Thanks for the advice about the KPU. Will bring it up during the F/U appt. OK, gang, so I now have possession of chlorella, sublingual methyl-B12, P-5-P form of B6, and L-methyl folate. What now? I know I need to go slow with them. Do I start them one at a time and if so, does it matter which one I start with? Feeling more like a newb all the time...

One you may look at is "Matrix Minerals" from BioPure. Liquid to add to juice/water. My son took this while on an anti-viral med. because it was know to deplete minerals. Have you done the 'Docters Data' hair test to see if vitamins are being absorbed by your child (also measures heavy metals being expelled thru the hair)? Thank you for the reply. I didn't find a product by that name on the BioPure website. Did you mean Golden Minerals perhaps? http://www.biopureeurope.com/catalogsearch/result/?q=matrix+minerals&name=matrix+minerals&x=0&y=0&order=relevance&dir=desc Our doc ordered a mineral analysis hair test from Omegatech / King James Medical Laboratory. It didn't test vitamins.

The active form of B6 that I know of is P-5-P and this is what I look for in a supplement. For a child, 25mg would be on the high side and if you chose to supplement, I would start at a lower dose and build up only if you saw no negative effects (which would take weeks to show up). The one condition that would change my advice -kinda - is if your son has KPU (aka pyroluria). This is a genetic condition that causes you to pee away your zinc and B6 before the body can use it. My son has it and my daughter is borderline for it. In our case, both kids started at 19mg of P-5-P. My DD stayed there. My DS worked up to 75 mg over a period of months. I'd suggest you read up on KPU and ask your doctor about testing for it. I can send you articles if you're interested or you can search the forum for info. LLM - good point about the KPU. It's been on the back burner for a while but needs to move to the front soon. For the P-5-P, can you recommend a supp for a 9 year old who doesn't swallow pills? Thanks much! Newb

Rowingmom, just curious how you're giving these supps these days. We are getting on the MTHFR train (DS9 has single mutation C677) and I am in the process of choosing products. Unfortunately, our doc isn't too much help with specifics

Thank you so much everyone for the useful and helpful replies. We are back home after some extended travel and I am now finding the time to research and attempt to choose some products to try. Makes my head spin! I am zeroing in on a chlorella supp to start with (leaning towards Health Force Chlorella Manna powder). Also considering adding arabinogalactin, though I haven't chosen a specific product yet). Need to ID the correct products for B12, folate, B6 (thanks a ton, LLM, for clarifying that for me and sending the link for your DD's supp). Will consider the detox drink down the road once we get things rolling a bit more and see how everything is tolerated. Also need to look into that sockeye salmon in lieu of the arctic cod liver oil DS already takes. I am looking for a good kid's mineral supplement that doesn't include a bunch of stuff we need to avoid (such as folic acid and the B12 which we need to give separately because we need the methyl forms of them due to DS's single MTHFR C677 mutation). Can anyone recommend a good mineral supplement for kids?

Thanks! We talked about them at our first vist and doctor was pleased that we give cod liver oil. We use children's DHA soft gels, made from 100% arctic cod livers. DS gets 252 mg total Omega 3s (82 EFA, 125 DHA, 45 mg 'other Omega-3s") per day. Does this suffice or is the more to it?Newb

Thanks so much, one and all for your responses, resources, and encouragement. We saw the doctor again yesterday (the one that I mentioned in my previous post; still not convinced he's a true LLMD, but he seemed very comfortable discussing detox, etc.). For whatever it's worth, and in case it may help others who read this thread in the future, these are my notes about supporting DS's healing (this is what the doctor said, I haven't had a chance to research any of this on my own yet or buy any of the products mentioned here): DS has a single C677 MTHFR mutation. Add Methyl-B6 (25 mg per day), Methyl-B12 (1 mg per day), and Methyl-Folic Acid (1 mg per day). Kirkmann makes products specifically for kids. DS's Reverse T3 is a little high, though still in the acceptable range according to Labcorp.Doctor like to see T3 below 3. It could be the gut. The higher the T3, the lower the metabolism. Watch this for now. Could consider adding iodine, 1 drop (12.5 mg) per day such as lugol soluiton or kelp drops. He doesn't necessarily need this, however. DS's magnesium measures a little 'lowish', though still within Labsorps acceptable range. Options: epsom salt baths, magnesium glycinate (available in pill, powder, and liquids forms), "Calm" powder @100mg. Aluminum: high end of acceptable. Get rid of grandma's old cooking pot that we use, check toothpaste and toss it if aluminum is an ingredient. Consider a powdered complete mineral product to toss in with the fruit smoothie I make for DS daily. Kirkmann makes one specifically for kids. This will also help push the metals. This could be done in lieu of the magnesium supplementation mentioned above. Chlorella (green algae) in any amount (a couple of drops is fine), doctor claims the high concentration of chlorophyl takes the toxins out of the body. Cemento drops a.k.a. 'Cat's Claw' - most common herb used to treat Lyme. Nutramedix makes a good one. Use 10 drops. Parsley & Burbur - same as mentioned in previous posts. Arabinoglalactin - powdered soluble & insoluble fiber. Also said that it's fine to just stay with the ground flax seed that I already toss into the daily smoothie. The important thing is to include plenty of fiber. Emphasize fresh fruits & veggies. So those are my notes. Any reactions from anyone, either positive or negative? Newb

Thank you for all the responses so far. Keep them coming, please I just ordered the burbur and parsley, and now, more questions from the newb. 1. Do I need to also add a binder such as charcoal? If the answer is yes, what binders work with a kiddo who doesn't swallow pills? 2. Does it matter what time of day I give the lemon water, burbur and parsley? If I work up to SF mom's detox drink, does it matter when that is given? Thanks all, you're the best!

Hello, My PANS DS9 recently started treatment for Lyme, Erlichia, and MycoP following positive IGeneX tests and climbing MycoP IgG numbers (MycoP testing from Labcorp). DS's first episode was in Feb08 (tics). He is taking Augmentin in AM & PM and Azithromycin in the AM. He also takes VSL3 probiotic in the afternoon. Other daily supps are 10g Inositol, 1g Taurine, 1 tsp cod liver oil, and 600IU vit C. We are presently managing herx symptoms short-term with Motrin 3x daily, but will not use it more than 1-2 weeks at a time because we want to protect his liver. Dr B is the prescribing doc for the ABX & probiotics. We also checked in with Dr T to get his buy-in on the treatment plan. From my reading here on this board, I know that detox is critical to healing. None of the docs we are working with seem to be able to advise about detox. So far, I have started a detox bath of 2:1 epsom salt and baking soda. I would like to do more for him. DS is allergic to ragweed, so milk thistle is not an option. [Edited to add: DS will not swallow pills yet.] Questions from this detox newb: 1. I would like to start lemon water as well. What is the effective proportion of lemon juice to water? So far I have sliced a lemon and squeezed a couple of slices into a glass of ice water for him, but I suspect this is too dilute. I have read 1/2 lemon in some places, 1 whole lemon in others. It needs to be palatable and not too hard on his teeth enamel however. Does it matter if the water is warm or cold? How many servings per day? 2. I read the post from SF mom about her detox drink here: http://www.latitudes...showtopic=18090 but I am concerned about starting this without consulting with a doctor. Before we had the IGeneX results, we had one appt with a wholistic doc who is supposedly an LLMD, but I am still forming my opinion about him (trust issues from so many doctors over the years!), so I feel a little stuck. Am I being a wimp about this? Is this the type of detox stuff people do with or without a doctor? So, what to do & how to get started? Is there a good thorough "detox playbook" out there that anyone can refer me to? Your help is so appreciated!

A million thanks to all who posted here on this topic. Learning much from you all. LLM - what are the 'seratonin related behaviors' you spoke if? We have noted that DS seems to flare in the spring when the weather warms, the days are longer and we spend a lot of time outside following the long, dark winter as well as when we return from a mid-winter vacation in sunny FL. I have had a nagging hunch that it had something to do with seratonin levels spiking (and suddenly falling off as in the case of the mid-winter vacation), but I never had anything to back it up, nor did I know how to check if my hunch was correct. I wonder if this could be another piece of the puzzle.

Today I received Labcorp test results by mail from our doc's office. DS9's results show: C677T Single mutation (A1298C mutation is negative). Vitamin B12 tested at 527 pg/mL (ref: 211-946). Folate (folic acid), Serum tested at 16.7 ng/mL (ref: >3.0) Homocysteine was not tested. Our followup appt with this doc to go over results isn't until the end of the month. What I am wondering is "now what"? Since DS's folate levels check out fine, does it naturally/automatically follow that his homocysteine levels are also fine? What questions should I be asking and should I be asking for more tests? We have our first appointment with Dr. B (CT) in mid-July. Will Dr. B be able to advise us concerning these results? Thanks all!