NancyD

Interesting. Thanks for this info, Nancy. I could have our compounding pharmacy fill it for me, if need be. My DD16 just got accepted into the OCD Insititute, where they do ERP, so I will talk with their medical director, Dr. Jenike, to see if they would consider trying it there. I first heard about d-cycloserine from Dr. Storch at the IOCDF conference two years ago and became very excited about it. Turns out it had been tried on adult OCD patients more than a decade ago with some success, but then a second trial was conducted with less-meaningful clinical results, and interest in it fell away for a bit. Then Dr. Storch and his team at USF began a pediatric trial again, and the results were positive; there's a paper on it, too. The trick with DCS is that it's not commonly available in the very low doses used for ERP therapy, something like 10 to 20 mg. As a tuberculosis drug, the standard pharmacy stocks it in 200 mg. tablets! So you need either a compounding pharmacy or a teaching/university therapy center to join with you in the process. We weren't successful in our market because DCS is still considered "experimental" and the very medically conservative Midwest prefers to wait until something's been "protocol" for a decade before the community is willing to jump on-board. Meanwhile, beta-lactam antibiotics in general are being research for their glutamate modulating capabilities, so if you are unable to get DCS, it might be worth considering some of the other b-lactam alternatives.

Laura, my DD lived on digestive enzymes for years during her severe colitis. We tried so many over the years but the one I swear by is Kirkmans EnZym-Complete/DPP-IV.

Laura, I did not see this show but in response to your comment...do you remember the study I sent you recently about using the abx d-cycloserine (DCS) and ERP? "The current study re-analyzes data from a 10-session randomized controlled trial of ERP+DCS versus ERP+placebo in a sample of 22 adults with OCD. We analyzed repeated-measures mixed models with random slopes and intercepts across different intervals: sessions 1-10, 1-5, and 6-10. The results indicate that the course of ERP was 2.3 times faster over the full 10 sessions for the DCS compared to the placebo group, and nearly six times quicker in the first half of ERP. Further interpretation of the results suggests that DCS does not amplify the effects of ERP, but instead initiates treatment effects sooner in treatment." I don't know the properties of DCS but I know it is a partial agonist of the neuronal NMDA receptor for glutamate and a partial agonist at the glycine receptor. Research shows its effect on anxiety, pain, and cognition. I am really interested in this abx, particularly in relation to doing ERP.

As I recall, our script just said MTHFR DNA testing (or something like that). I don't remember seeing C677T or A1298C anywhere on the script. I could be wrong but I thought it was one test that looks for two mutations.

This is GREAT news about you and the girls, Susan. Yah!! Keep it up!! Hugs!

I have never read anything about CD57 being tied to Babesia. Would love to know where you read this. When we first started treating DD (then 15) for Lyme her CD57 was 24. We did not do this through Labcorp though -- did it through IGeneX. Over the past 19 months of treatment she has been on Azyth and Tindamax for Lyme and Biaxin/Rifampin (then switched to Doxy) for Bartonella. She has been off abx for a few months (with the exception of Augmentin XR for PANS) and she was doing well. But then she started sliding back. She had a couple of viral infections so I figured the next step would be Valtrex. We just did another CD57 (this time through Labcorp) and I figured it would be ~60. It was 20! We put her back on Azyth and will check her C4a levels. I know CD57 is not necessarily accurate but this (I believe) is indicative of a chronic infection. Just not sure what to do next. So frustrating!!!

Has she been tested for Lyme and other TBIs? This is a hallmark symptom.

It sounds like the infection has not yet cleared. Both my DD and I had hair loss -- not sure if it was from Bartonella or Lyme. But it stopped after a few months of treatment. I have been off my treatment for a few months and I am still feeling great, although I just noticed in the past week a little bit of hair in the bathtub drain, which is unusual for me. Also started getting some nose bleeds again (these stopped after starting treatment). And I am noticing brief joint stiffness. I don't know if I am imagining things -- but I am concerned that it could be coming back. I had 18 mos of treatment and have been off abx for a few months. I sure hope your DD is not relapsing but it sounds like she could be. I would talk with your LLMD as soon as possible.

Sadly, this is true of so many doctors. Traditional medicine has let so many of us down the wrong path. Or they dropped us altogether because our kids are much too complex. That is why many on this forum (including myself) have chosen to go with an integrative doctor. They look at the whole picture (and body). And they try to treat the underlying causes.

Welcome Linda. I'm sorry you have to be here but you are in good hands with this forum. I don't think it's ever too late! But, I highly recommend that you save yourself a lot of heartache and wasted years and go see one of the top PANDAS experts or an LLMD who treats PANDAS. If only I had access to experts like these years ago! My DD's rages started at age 2 following impetigo. PANDAS was not diagnosed until age 7 and by then her rages were daily (up to 3 hours apiece) and violent. Antibiotics stopped the rages within 48 hours and we had a couple of good years with a few blips in between. But in the prepubescent and teen years it got progressively worse and the good times were few and far between. A change in antibiotics, high doses of vitamin D3 (she had catastrohpically low levels), and IVIg infusions literally saved her life. Although my DD was very complex (severe colitis and moderate ASD when she was young and later diagnosed with Lyme, Bartonella, MycoP, deviant MTHFR gene, KPU, etc.), I don't think we would be anywhere near where we are now without antibiotics. She is 16 now and her cotitis is completely healed, she is no longer on the autism spectrum, her PANDAS has been in remission for 2 years, and we are nearing the end of her Lyme/Bartonella/MycoP treatment. We are still treating her methylation issues and KPU and we still have to treat underlying viral infections (HHV-6), but her rages are a thing of the past. They prevented us from going anywhere for years. It's been two years since her last violent rage. Although we are still trying to get to the route of her anxiety and OCD, we are a far cry from where we were. Life is so much calmer. Try and nip it now with guns blazing before it gets worse. And be sure to rule out other underlying bacterial and viral infections (e.g., Lyme, Bartonella, Babesia, Ehrlicliosis, MycoP, CMV, EBV, HHV-6, etc.) that will prevent PANDAS from going into (or staying in) remission.

Cleaning chemicals can make tics worse.

I'm referring to absorption from a supplement.

Two years ago, when my DD's neurological symptoms were at their worst and she was getting one skin infection after another, we discovered her D levels were catastrophically low at 4. We put her on 10,000 IUs D3 daily and she has been on that ever since. Then 18 mos ago we discovered she had Lyme/Bartonella/MycoP so we started treatment for that. Six months ago we discovered she had a deviation in the MTHFR gene and deficiency in zinc (most likely KPU) so we started treatment for this. She is nearing the end of her Lyme/Bartonella/MycoP treatment -- now off all abx except Augmentin XR for PANDAS, which has been in remission for 2 years. Next we will treat any underlying viral infections (e.g., HVV6). Although her D levels have increased over time to 45 we are having great difficulty getting it any higher. I am guessing it is absorption issue but I do believe getting D3 levels up has been critical to DD's recovery process.

Yes, definitely a different story. I live near Plum Island and they have signs posted on the beach to be careful of ticks.

Count me in too. Will send you a PM.

Kara, I had tingling and numbness in my hands and arms about 3 months after starting doxy. I saw it as a herx and it did go away after a while.

All supplements are prescribed by our integrative MD.

My DD16 would love to take only 10 supplements a day! She takes 57 supplements per day: 2 Omega 3, 1 vit E, 6 Querciplex, 2 Curcummin, 3 Milk Thistle, 2 Alpha Lipoic Acid, 5 vit C, 2 vit D3, 2 L-Carnitine, 2 Theralac, 1 5-MTHF, 4 Zinc Picconlinate, 2 vit B1, 2 vit B2, 4 vit B6, 2 Manganese, 4 NAC, 2 Magnesium Glycinate, 2 Transfer Factor Tri-Factor, 2 Transfer Factor Lym-Plus, 2 Adrenal Companion, and 1 Melatonin.

I do recommend testing for Lyme and co-infections through IGeneX BEFORE doing IVIg otherwise you will have to wait 2-3 months (I forget exactly how long). Many people do get reimbursed 60-80% depending upon their insurance plan, however you have to pay up front and then submit. IGeneX will give you the coded documentation you need.

As a doctor he is FANTASTIC - I highly recommend him. We have been seeing him for over 9 years. He treated my DD's allergies with monthly IV glutathione and supplements (specifically high doses of Querciplex and Transfer Factor, among others). She was allergic to almost every food and also had environmental allergies and severe colitis. After 2-3 years of monthly IV Glutathione her allergies were all gone and colitis healed. Now she can eat any food she wants, as long as there are no dye or additives in it. We did IVIg, abx, and supplements for PANDAS, which has been in remission for almost 2 years. Tics and violent rages (both were very severe by pre-pubescent years), as well as sleep problems 100% gone. He has been treating DD's Lyme and Bartonella, which he diagnosed in 2010 (as well as my Lyme and Bartonella). Also treating DD's KPU and methylation problems (DD has mutated MTHFR gene). The only neurological symptoms DD has left are anxiety/OCD, which seem to be the most difficult to eradicate. My daughter was the PANDAS case study in his book -- our pseudo names were Alyssa and Liza. One more thing...DD used to be on the moderate end of the autism spectrum. Today, you would NEVER know. She no longer meets the diagnostic criteria for ASD, thanks to Integrative medicine!

We started using IV glutathione long before my DD (now 16) was diagnosed with PANDAS (age 7) and Lyme/Bartonella/MycoP (age 15). She had severe colitis as a very young child and was allergic to almost every type of food. The IV glutathione, which DD did monthly for 2 years, cleaned up her gut completely and with the exception of dyes and additives she can now eat anything. It really helped her immune system! Because her MD is 4 hours away we no longer travel there monthly as we used to. Now, most consults are done on the phone. But when we do go there we make certain to do IV glutathione.

I give my DD both Milk Thistle (250 mg) TID and NAC (600 mg) 2 capsules BID. So she gets a total of 2400 mg of NAC. Her doctor said she can have up to 3000 mg but she does best at 2400 mg. She is 16 and adult weight.

Melanie, can you ask her how effective it is for anxiety and generally how long does it last? Has it ever helped OCD? Thanks!

Ahhh, I didn't think of it being a herx-like response but yes, it did resemble that. Makes sense to me too.

Melanie, Here's a FAQ on Auriculotherapy: http://www.auriculotherapy.com/faqs.html Nancy