NancyD

Hi Kara, Yes, sounds like you may have done auriculotherapy. It's a little ball that goes in a specific spot in the ear and stays in for ~2 weeks. I found someone next town over from you who does it and he takes all insurance. I think we may try it with my DD. It's supposed to help with anxiety. It can't hurt. Nancy

Eileen, I know these are not great options but I would steer clear of using nitrous oxide as it can be problemsome for children with underlying immune conditions. "Nitrous oxide depletes the B12/folate system and deactivates methionine synthase, which is an enzyme that catalyzes the conversion of homocysteine and methyltetrahydrofolate to methionine and tetrahydrofolate. Such a deactivation in a patient with a defect in the MTHFR (methylenetetrahydrofolate reductase) gene, which is associated with diminished enzyme activity, could result in increased homocysteine levels, increased oxidative stress, and activated NMDA glutamate receptors. All of these could contribute to inflammation; additionally, nitrous oxide also may cause hematologic problems, neuropathy, and neurotoxic effects.". http://autism.com/fam_AnesthesiaandtheAutisticchild.asp I wish I had some suggestions for you but I wanted to alert you to the potential problems of nitrous oxide. When my DD was scoped last we used propofol and she did well with that. I would hate to have to resort to general anesthesia for cavities, but you can't NOT do the procedure either. This summer my DD will have to have all 4 wisdom teeth out and I will insist on using propofol again.

I don't know either, but I agree with Laura's hypothesis. We had a similar problem with D3 a few years ago. DD's D levels were catastrophically low at 7 but every time we put her on D3 she seemed to get worse. Of course, this was before we started treatment for Lyme/Bartonella, MycoP, KPU, and methylation issues. We had no choice but to give her 50,000 IUs of D3 for a few months and we pushed through it. Since then we lowered her D3 dose to 10,000 IUs and added high doses of C, as well as B1, B3, B6, 5-MTHF, magnesium, zinc picconlinate, etc. and we no longer have the same problems with D3. Just make sure the pills are dye free -- dyes can exacerbate the symptoms for so many kids.

Has anyone tried this? I have been reading about it and it looks interesting. Would love to hear from anyone who has tried it.

We have been going to him for over 9 years -- he diagnosed my DD16's PANDAS, Lyme, and Bartonella, as well as my Lyme and Bartonella. He treats PANDAS with abx, HD IVIg (available at his office), supplements, etc. He was supportive of our doing plasmapheresis. He's a great integrative MD and has many years experience diagnosing and treating PANDAS, Lyme, and other TBIs. He will do full immune workup, check vitamin/mineral levels, do some genetic testing as needed, check for bacterial and viral infections, test for toxins, etc. Feel free to PM me if you have any questions.

I also highly recommend Kenneth Bock, MD, who is in Rhinebeck, NY.

Our MD prescribed 10 mg for DD16. http://www.anaturalhealingcenter.com/documents/Thorne/monos/5mthf_mono_11.4.pdf "Dosage of 5-MTHF varies depending on the clinical condition. For lowering homocysteine, daily doses up to 5 mg are generally used. The most common therapeutic dose is in the range of 1-3 mg daily. Doses greater than 10 mg per day of folic acid have been used in conditions such as cervical dysplasia, and up to 50 mg daily of 5-MTHF has been used in neuropsychiatric conditions." Deplin comes in 8 mg and higher. Unfortunately you cannot get Deplin dye free though, so we use Thorne 5-MTHF, which come in 1000 mcg, 5 mg, and 10 mg.

I give my DD16 10 mg.

I agree with using magnesium Glycinate and keeping it away from any abx. I give Mag Glycinate the same time I give probiotics (mid day and before bed). Try to start working in Epsom salts baths before bed (they are so calming) as well as metatonin XR (low dose is best). Also consider ibuprofen 3x/day until things start to calm down. There are also different types of tea that can have a very calming effect. Other things you can try: Niacin (vitamin B3) is a natural tranquilizer. Pyridoxine (vitamin B6) is critical in the production of neurotransmitters that prevent anxiety. Also, try L-theanine, which is involved in the formation of the calming neurotransmitter, gamma amino butyric acid (GABA). It also naturally stimulates the release of serotonin and dopamine. Remove dyes and additives from diet. Avoid sugar and caffeine. Turn off wireless and electronics at night. Just a few suggestions. So glad to hear the magnesium is working!

Generally, Nystatin is very well tolerated however for many kids it is not as effective as some of the other anti-fungals (Diflucan, amphotericin, etc). Nystatin is fairly mild -- side effects can range from itching and irritation to diarrhea and stomach pain -- though I don't know anyone who has had a bad reaction to Nystatin.

N-Acetyl Cysteine (NAC) is an amino acid that increases intracellular glutathione at the cellular level. (Glutathione is one of the body's most important natural antioxidants and detoxifiers.) NAC helps to boost the immune system, chelate heavy metals, break up mucus, and is a glutamate modulator that that can be effective for addictions and obsessive/compulsive behaviors. When taking NAC it is recommended that you take 2-3x as much vitamin C at the same time. Dosage is based on weight. My DD16 takes 1200 mg bid of NAC and 2500 mg bid of vitamin C. Like any supplement it is recommended that you start with low dose and titrate slowly.

Have you tried NAC, magnesium, ibuprofen, and Epsom salts baths? Have you tested for Bartonella, KPU, and MTHFR gene?

Whoever you go with make sure he tests for tick-borne infections (Lyme, Bartonella, Babesia, Ehrlicliosis), mycoP, and viral infections (EBV, HVV6, etc.). It's important to do that (and treat) before proceeding with T&A, IVIg, pheresis, etc. Otherwise the PANDAS exacerbations will keep coming back.

We saw an ENT several years ago at Mass Eye & Ear who has performed T&A on children with PANDAS. But, he needed to see documented history of strep throat infections and we did not have that as my DD's strep was in her sinuses and elsewhere. PM me on Monday and I will be happy to dig for his name.

Dr. Longpre in Newburyport does ERP and he takes BCBS.

Just one word of caution re Deplin. Deplin has dye in it. You cannot get it dye free. Thorne's 5-MTHF is a good alternative and it comes in 10 mg capsules, dye free.

Eating really healthy is critical to recovering from Lyme and TBIs, as is supplementing with vitamins and minerals. I don't know of any multi-vitamin that will give you everything you need. Perhaps others may know of a good one. I will soon be switching to a "vitamin pack" instead of individual vitamins, but I am nearing the end of my treatment and will continue to take additional supplements to support my immune system and adrenals.

I was on Doxy for 16 months but also on Tindamax and Rifampin. Have been off abx completely now for a few weeks. So far I'm feeling great but have completely changed my diet (high protein, lots of fruits and veggies high in antioxidants, no simple carbs or dairy, all organic) and am still taking supplements. I did lots of detoxing. So far, no back sliding. At the onset my Dr. said I would be on abx for at least a year.

Many people here on this forum take either Augmentin XR or Azyth for PANDAS. For PANDAS and MycoP you might be better off with Azyth. My DD takes Augmentin XR and Azyth (as well as Tindamax and other abx) but we are also treating Lyme/Bartonella in addition to PANDAS/MycoP.

Hi Susan. I'm SO SORRY to hear you are having such a rough time!! Slowing down the treatment sounds like a good plan. I personally don't like using heating pads -- I would rather use those Thermacare pads. However, as I say that it dawned on me...I'm sitting in my car on my heated seat, which I use all winter long.

I highly recommend Kenneth Bock, MD in Rhinebeck, NY. Or Steven Bock, MD (also in Rhinebeck, NY). They do integrative medicine.

When we had BCBS PPO 80% of customary costs were covered for office visit and lab tests. But not more "alternative" treatments like glutathione IV. Our current insurance does not cover any of it. I would like to go back to BCBS.

Laura, Querciplex consists of Quercitin (333 mg) and Bromelein (100 mg). Quercitin is powerful antioxidant, natural anti-histimine, and anti-inflammatory. Bromelein is an anti-inflammatory. We tried SAMe briefly but the timing was not right so I pulled it for the time being. Will have to go back and try it again soon. At the time I thought it might be making DD's anxiety/OCD worse. Are you doing anything to support adrenals? That could help with energy. Also, what about B12?

Interesting, although a very small study. DD's neutrophil count in 2009/2010 was consistently low. Have to look at more recent test results.

Laura, I absolutely love Transfer Factor. We have been using 4Life for many years (and now we also use Research Nutritionals Transfer Factor LymPlus). Transfer Factor Classic and Querciplex are two supplements I could not be without. I find it makes a huge difference in being able to prevent or reduce infections. We take up to 3 Transfer Factor Classic pills bid. Same with Querciplex. Nancy