NancyD

Hi EAMom, My DD21 has been on LDN for almost a year. We started at .5 mg nightly and slowly built up (over the course of many months) to 4.5 mg, then backed down to 4 mg. It has helped with sleep, OCD, and mood dysregulation. We originally started it because she was trying to do Low Dose Immunotherapy (LDI) for Lyme, strep, mold, and autologous but her body reacted negatively to the most diluted doses. We had two amazing weeks from LDI autologous, which we repeated a few times but we could not get any improvement over that. So after being on LDN for almost a year we are about to restart LDI autologous to see how it works now. From what I have heard from others, LDN works better if you are gluten and dairy free. Not sure why, but I'm guessing that would be true even if you were not taking LDN since gluten and dairy can cause inflammation. I have not seen any research about this. You need to get it compounded by a good compounding pharmacy. The cost is not that bad, depending on the pharmacy, especially is you buy 3 months at a time. I am not on this forum often so if you have any questions it may be best to PM me. Best, Nancy

If she has low B12 you don't want to use nitrous oxide (aka laughing gas)! Additionally, you don't want you to use nitrous oxide if you have: low glutathione levels MTHFR 677 homozygous or heterozygous MTHFR 1298 homozygous MTHFR 677 / 1298 Methylfolate deficiency Chronic condition/disease, such as Lyme, autism, PANDAS, IBD, etc. https://www.ncbi.nlm.nih.gov/m/pubmed/18580170/ http://anesthesiology.pubs.asahq.org/article.aspx?articleid=1922603 http://mthfr.net/nitrous-oxide-mthfr-trouble/2015/02/06/

We tried everything and what I found most helpful for my DD is Glysom, which consists of glycine, an amino acid critical for deep sleep. My DD has low levels of glycine. I pour a packet into a bottle of water and have her drink 1/2 at 8:30 pm and the other half at 11:00 pm when she takes her nighttime pills and she sleeps right through to morning. http://www.glysom.com

Just went to the pharmacy and looked at the 1000 mg, 875 mg, and 250 mg bottles. The ratio of Amox to Clav acid is very different - much higher Cav acid if you combine 875 mg and 250 mg pills. Right, that's why we're using 250mg. plain amoxicillan with 875 augmentin, to get the amoxicillan part up to 1000+ mg. Using two 500mg Augmentin pills was too much clav.-acid. Ahh, got it. Thanks Tj21.

Just went to the pharmacy and looked at the 1000 mg, 875 mg, and 250 mg bottles. The ratio of Amox to Clav acid is very different - much higher Cav acid if you combine 875 mg and 250 mg pills.

I just wrote to the mfr ... will let you know if I hear back.

TJ21, do you notice any difference not having extended release?

I heard the same thing that they may be discontinuing Augmentin XR 1000! I don't know what we're going to do either. DD20 takes a severe nosedive every time we try to stop it.

Anyone having trouble getting their Augmentin XR 1000 mg refilled? The pharmacies in MA keep telling me they are on backorder. Same with Express Scripts. I found one pharmacy with it in stock but I'm afraid they will run out soon. Has anyone heard anything about this?

Yes re Bock and TePas. Love them both. Was with Bock for 13+ years and went to TePas several times. PM me for specifics.

Anyone try Vasoactive Intestinal Peptide (VIP)? What results did you see?

LDI is still relatively new - only about 3 years. Low-Dose Allergy (LDA) Immunotherapy has been around for many years. I don't know of any PANDAS/PANS only doctors doing LDI. There are many integrative doctors who treat PANDAS/PANS children who are doing LDI. Quite a few PANDAS/PANS children are having great success with a combination of LDI strep and LDI Lyme once they hit their core dose. Treatment (either subcutaneous injection or sublingual drops) are every 7 weeks and the cost is very minimal - ~$25-$50/dose depending upon the doctor. Insurance does not cover. The trick is to start at a very diluted dose and go slow. If you have no reaction at all in about 7-14 days you can go to a lower number (less diluted dose) until you find your core dose. If the dose is not diluted enough and you flare you must wait 7 weeks for your immune system to reset itself and administer at a more diluted dose. Once you reach your core dose you administer every 7 weeks but you can give a booster (1/2 dose more diluted) in between doses. You can also administer other LDI or LDA antigens in between. There is also LDI autologous where they take your sinus drainings or stool or urine samples and mix very tiny miniscule amount with beta glucuronidase to create your own personalized antigen. We don't know how long you have to take this since it's only been around for a few years but theoretically you should be able to wean off this slowly once your immune system is balanced - perhaps do a treatment annually. Many people are having great success with LDI.

No, not donor antibodies. LDI is a form of immune desensitization that combines an enzyme called beta glucuronidase with minuscule amounts of antigens relevant to your medical condition. The enzyme makes T-cells pay attention to the antigen, down-regulating the immune response to that allergen. The Lyme mix contains over 70 strains of pathogens - dead antigens mixed together with sterile water and combined with beta-glucuronidase prior to administration. They are in highly diluted concentrations - different concentrations are given depending on the sensitivity of the patient. A dilution of 6C would be a 1,000,000,000,000 dilution of the antigen. The higher the number, the more diluted the concentration. LDI is also used for strep, yeast, mold, mycoplasma, foods, chemicals, and environmental allergens.

Sounds a lot like Low-Dose Immunotherapy (LDI). There is one for strep, Lyme and co-infections, etc.

It's supposed to help break down carbs and reduce cravings. DD tried it but didn't notice any difference so we stopped.

I'm also looking to change my water source. But I'm going to stop the bottled water delivery service and purchase a Berkey, a gravity-fed water filtration system. It gets top ratings.

After testing 2 drops of D3 (2000 IUs) between my DD's toes she had the exact same reaction as when she takes it orally: very psychotic-like behavior. I have come to the conclusion that D is increasing her dopamine levels, which is already excessively high. To counter its effect (D has a very long half-life), I increased her GABA and added a small dose of taurine. This helped a lot. Will never try D with her again! 😱

I would start low and build up slowly to see what works best for your DS. I give my DD19 500 mg (capsules) three times daily. But I started with 250 mg once daily in evening and then built up from there. I also give my DD high doses of magnesium glycinate in evening to help relax her (also keeps her stools moving) and some Glysom, which is pure glycine. I put that in her bottled water. Glycine also helps with REM sleep.

He may have an imbalance between Glutamate and GABA, something common with PANDAS/PANS. Have you tried giving him pure GABA? An increase in Glutamate could be affecting his processing speed and memory. GABA has worked like a dream (pun intended) for my DD. Really helped get her into REM sleep and calm her down.

Sorry Monarchat, but it's been a year or two since my DD was on Azith. I was anal about checking before hand to make sure everything is dye-free and titanium dioxide-free as both ingredients make my DD psychotic. We got it from Rite Aid prior to moving and getting it from CVS.

The first time my DD had low IGG levels we were approved quickly for immunodeficiency. But after that we used the dx Selective Antibody Deficiency and got approved for IVIG a few different times. And when our primary commercial insurance provider didn't cover DD's secondary insurance through Medicaid approved. Medicaid can be a lifesaver and well worth the added cost for kids with disabilities! Have you tested anti-pneumococcal antibodies (14 serotypes)?

Cobygurl, that is GREAT NEWS! 16c should be his core dose. The number of good days should increase with each core dose. Your son's next dose should be exactly 7 weeks from the date of the first dose. You could try a booster at 16.5c or 17c, which is 50 and 100x more diluted respectively, to get you through until the next dose but not 16c. The goal is not to increase your dosage but to find your core dose and stick with that. You may, however, have to tweak your core dose moving forward depending upon how he does. If he starts to flare you may have to go to 16.5c or 17c for a core dose. And if you see no improvement after the second dose you may want to increase to 15.5 or 15c. This is awesome news...you should be very pleased!

Never had a problem getting them from CVS dye-free.

Whether a flare or improvement I always noticed within 48 hours with my DD but for some it can take longer. Keep us posted on how you do with the LDI. Good luck!

High levels of D can causing herxing from Lyme. My DD was hospitalized a few years ago taking high doses - her levels were catastrophically low. She became very violent and psychotic-like. You may want to start low and slow and see how that goes. Currently, we are administering 2 drops of liquid D3 (2000 IUs) between her toes. We started out with one drop every other day and are building up slowly to 5 drops daily. I'm not sure how much is being absorbed into her body but it's better than nothing. Eventually we will try one drop orally.