NancyD

I love it! I have been giving DD high doses of Querciplex (quercetin and bromelein) for many years. I take it too now since being diagnosed with Lyme/Bartonella. Helps with inflammation and also works as a natural anti-histamine.

Ours got MUCH WORSE with puberty. Sorry!

Kara, Unfortunately we have not yet found the underlying cause of my DD's anxiety/OCD. We have treated PANDAS/PANS for years with abx, supplements, and IVIg. All the other symptoms (rages, tics, sleep problems, etc) are gone. And we have treated for Lyme and Bartonella for the past two years and MTHFR for the past year. The joint pain/stiffness is gone, as well as the fatigue and other Lyme symptoms. Her moods are much more regulated thanks to L-methylfolate. I'm thinking the anxiety/OCD may be tied to either MTHFR or Bartonella and we still have more things to try, like Leucovorin instead of L-methylfolate, and putting her back on Rifampin for a longer period of time. What eventually helped the cutting, binge eating, and restricting of food, as well as her OCD and social anxiety was spending 3 months at OCDI/McLean where she got the most AMAZING help with ERP and mindfulness techniques. I think they literally saved her life! And insurance covered most of it. :-) Nancy

My DD16 cut for a couple of years. She did other forms of self-mutilation during this period as well. It's been over 6 months since she has done it. It's definitely tied to her anxiety/OCD.

I wish I could remember but it's been too many years and I only keep financial and insurance records for 7 years. I'm sorry I can't be more help on this.

For my DD, who also had very low levels, two years of monthly glutathione IVs healed her severe colitis completely and allowed her to eat foods she could never eat before (gluten, dairy, soy, etc.). This was 10 years ago and it helped her immune system enormously. We used to travel 8 hours each month to get these IVs. Although we don't drive there as often now as we have been doing many consults by phone, we still try to get an IV glutathione as often as we can. DD is also homozygous for 677 and has Lyme, Bartonella, and MycoP. BCBS used to cover these IVs (out of network, so 80% of customary rates). We haven't had BCBS in years and just switched back so it will be interesting to see if they still cover it.

Could be due to underlying infections. We use Adrenal Essence supplements to support adrenals.

I have been off all abx for Lyme and Bartonella for months and so far I feel great. I thought I was slipping at one point (sore heel again) and tried A-Bart challenge but saw nothing after getting up to 20 drops. My D levels are up around 65 and all tests are within normal range. I have not yet done anything for my heterozygous 677 MTHFR. My DD16 (LYME, Bartonella, PANDAS, homozygous 677 MTHFR) is still battling severe anxiety/OCD (her only symptom left). We CANNOT seem to find the key to unlock this. VERY frustrating since it's so debilitating for her. She is still on Augmentin XR and Azith, but off the other abx. Thankfully she has not had an active infection or exacerbation in a very LONG time. Although her anti-DNASE B levels have been elevated lately. Rages, tics, joint pain, and other symptoms have been gone for over 2 years so we are very grateful for that. She just spent 3 mos at OCD Institute/McLean and did very intensive ERP and other therapeutic work there. It's a FANTASTIC program!! Now that she's back home we will focus on MTHFR (try Leucovorin) and then double back to A-Bart challenge. We'll check glutamate, homocysteine, and other levels this month.

Wow...that's great progress...congrats Kara!!! :-)

My DD16 takes 10 mg L-methylfolate by Metabolic Maintenance. She is homozygous 677 MTHFR. We took her off it for a week about a month ago because we were switching DD to Leucovorin (didn't think L-Methylfolate was helping) and wanted to see what she was like without anything since we titrated up so very slowly. Within a few days DD became very moody and more anxious. Clearly the L-Methylfolate was helping so we put her back on it. I may still switch her to Leucovorin to see the difference but this time I will make an immediate switch. DD takes B12 nasal spray as well as B1, B2, B3, and B6 supplements.

I will PM you.

I would also like to add -- for those who have difficulty taking D3 -- it can cause a herx-like reaction. It did with my daughter every time I tried to give it to her. We just had to work our way through it. Ibuprofen helped. WOW -- 10,000!! what were her levels when you first had them checked? do you do other treatments/supplements or do you find the most benefit from vit D? did you see a benefit right away?

Two years ago, when she was having one exacerbation after another, her levels were catastrophically low at 4. It has taken a long time to get them up over 60. At that time we also discovered DD had Lyme, Bartonella, and homozygous c677t MTHFR in addition to PANDAS. We stopped doing IVIg and added two more abx (rotating different abx over two years). She is on many different supplements to support her organs and immune system and aid in detoxification (C, D3, E, Bs, omega 3, milk thistle, NAC, Querciplex, transfer factor Tri-factor, transfer factor LymPlus, alpha Lipoic acid, curcumin, adrenal essence, L-Carnitine, Theralac, melatonin, magnesium Glycinate, zinc Picolinate, L-methylfolate, B12 nasal spray). And now she is down to only 2 abx (Augmentin XR and Axith) and an anti-fungal, amphotericin B. I would say high doses of D3 is one of the more important things we have done, in addition to treating the other underlying infections with abx and reducing the inflammation. Prior to that we could not keep DD in remission for more than a year (and we were thrilled with that). Now, her PANDAS has been in remission for 2 1/2 years. The only remaining symptom left is anxiety/OCD, which has been impossible to eradicate. I think it is due to either Bartonella or MTHFR and we still have a few treatments left to try. In answer to your question, no, we did not see a benefit right away from D. It was a slow process. Plus, DD had a LOT of inflammation. I too had low levels of D (in the 20s) and started taking 5000 IUs D3 two years ago. That is when I also discovered that I had Lyme and Bartonella as well and began treatments. I have been off all abx for 6 months now and am feeling great. I still take 5000 IUs D3 plus other supplements to support my immune system and organs. My D levels are also ~65. WOW -- 10,000!! what were her levels when you first had them checked? do you do other treatments/supplements or do you find the most benefit from vit D? did you see a benefit right away?

I find my DD is much healthier and has far fewer neurological issues if her levels are above 60. She takes 10,000 IUs per day.

Vitamin D may have some anti-inflammatory and immune-modulating properties. Some studies have pointed to this, although I don't know if there is conclusive evidence. I'm not sure how much 400 IUs would help as that is extremely low dose. Have you checked levels? Be sure to give D3.

Sure, I did. Only physical symptoms. Whereas DD16 had both physical and neuro symptoms.

http://www.sciencedaily.com/releases/2012/09/120914080642.htm

From what I understand oral is no where near as effective as IV glutathione. My DD did monthly glutathione IVs when she was very young and it completely cleared up her severe colitis. She had been on a highly restrictive diet -- her gut was extremely sensitive to gluten, dairy, soy, and ultimately rice (which made things difficult since her diet was mostly rice based). After two years of monthly IVs she was able to eat almost anything. The IV push is only about 10 minutes long and the IV drip (which my DD prefers) is about 20 minutes long. I think we will go back to doing glutathione IVs (perhaps once every 2 or 3 months) to boost her immune system. Glutathione IV was one treatment that has always had an amazing effect! Thankfully they are not that expensive.

Our Integrative MD prescribed 3000 mg for DD16...of course titrating very slowly. For a while we gave her 3@600 mg in am and 2@600 mg in pm, but then I felt she was better at 1200 mg bid so she has been at that dose for a long time.

We too have seen Bart rash come and go over the months.

The first few times I got so fatigued I had to lay down and sleep for a few hours, although this was early on (right after starting abx for Lyme).

Would she be able to handle ear plugs? Some you can't even feel in the ears, although she's probably very hyper sensitive. http://www.earplugstore.com/sleeping-ear-plugs.html

For us, it was no problem getting accommodations for MCAS (our state tests), but for PSATs we were denied any accommodations (and all we asked for was additional time). We have to appeal again this year. I have letters from doctors and clinicians but I don't know if it's going to be enough. Just because you have an IEP does not mean you will get any accommodations for PSATs or SATs. Very different than state or regional tests.

I had foot pain for 30+ years. Also had flat feet and a heel spur. I had expensive orthotics made for me, used a foot brace at night to stretch my foot, did PT, and finally had two surgeries (one for plantar fasciitis and one for the heel spur). Everything helped the foot pain for a while (even the surgeries) but the pain kept coming back... Until finally I was diagnosed with, and treated for, Bartonella 2 years ago. I, too, had 3 negative Bartonella tests. It was only after treatment with Doxy and Rifampin that the foot pain FINALLY went away. While I don't regret doing the orthotics, learning how to wear comfortable shoes, using the foot brace at night, and PT, I do regret having done 2 surgeries (with up to a year of recuperation for each surgery). If only I knew the foot pain was due to Bartonella and could be treated with abx! I now have nerve damage in my foot from having the heel spur removed. The point I'm trying to make is -- don't ignore the foot pain and don't rule out Bartonella just because you got a negative on the PCR test. If I had just listened to my podiatrist I would never have finally discovered the real cause of my foot pain.

Norcalmom, That does sound like herxing to me. My Bartonella herxing included terrible headaches on top of my head, night sweats, difficulty sleeping, and increased foot pain. What helped my herxing was: 1. Dry sauna 3x per week 2. 30-minute Epsom salts baths 3x per week 3. Drinking LOTS of water throughout the day (w-lemon) 4. Ibuprofen 3x per day 5. Milk Thistle 6. Alpha Lipoic Acid 7. LOTS of sleep Others may have other suggestions that work for them. Nancy P.S. Almost forgot to mention diet, which can REALLY help to minimize inflammation. I have found that eliminating gluten (and in fact most carbs), dairy, and sugar have helped TREMENDOUSLY. I eat mostly organic raw vegetables (rainbow of colors), fruits high in anti-oxidants, raw nuts and seeds, salmon, eggs, etc. (meat only once a week).