DebC reacted to msegal7 in good news PANS /PANDAS LYME
I am an addicted reader here on the forum and have posted a few times but mostly dig for information. I have felt a little badly not sharing our successes and the moment I consider posting, the wheels seem to come off the bus. I wanted to post our progress now because my DS 14 is doing so well and I think it might be of help to some of you. I know I read and re read those hopeful success stories during the dark days of PANS.
My DS began treatment 2 years ago and we began to scratch at the layers thinking the sudden onset of tics, ocd, anxiety and sleeplessness was strictly strep related. Wishful thinking.....it has been quite a journey. There are moments it seems there isn't an antibiotic we didn't try. We found Dr. T, then we found another local doctor who is more familiar with Lyme and PANS in general and we were off. It has been a very long road and there have been a lot of ups and down. We tried so many different supplements I could run a vitamin shoppe from my pantry of things that held promise but didn't work or caused a rapid decline. Slowly but surely we began to peel away the onion layers. We used multiple antibiotics and we pulsed tindamax (2 weeks on and 2 weeks off). We tried every anti inflammatory supplement we could find and we really saw improvement. There were flares pretty often and just when I thought we were rounding the corner, he would turn back around and run the other way. It was very up and down.
Sometime, about 3 months ago, I realized that we were missing something. He was at about 85% but I couldn't find a way to get him all the way home. I didn't want to settle for almost back to normal. It didn't feel like antibiotics were going to get us there. I started thinking we were having a serious detox issue and that his gut was causing the problem also. I couldn't figure out what we had missed because it felt we had addressed so many angles.
I read the boards a lot but only squinted through anything on methylation. I was afraid to even consider it....thought my head would explode. Thanks to all of you (LLM) for your brilliant input and critical advice. I had my son on Quercetin, Garlic and anytime I gave him an epsom salt bath he itched for hours. He reacted to B vitamins with increased ticcing. I had to look at methylation. I ordered the 23 and me and sure enough we have some significant mutations that require us to alter the supplements we are giving. The main thing was a CBS mutation. I took him off all things that might cause a problem temporarily while waiting for our Dr. appointment to discuss the results and lo and behold he got to 90%. Then we started slowly adding in herbal remedies following Buhner (thanks Rowingmom.) We did this with the help of an herbalist and we went low and slow. I started to back down some of the western medicine (cefdiner, malarone) and we are now at 95%. I am slowly ramping up the herbal tinctures and watching in amazement as we see the re emergence of our boy.
I wanted to update all of you and give a little hope. There is a way out of all of this and it requires an ability to zig and zag and swear to something only to swear it off the next day. It requires flexibility and diligence and the support of all of the people out there who have been in your shoes and truly understand your pain. I wanted to let you know that we see the light here at the end of the tunnel.....and if it stalls out.....we will do something else.
Hang in there. You are all amazing and your kids are lucky to have you.
DebC got a reaction from Momwithacause in Any info on Dr Rao in Plano?
I'm the Dallas Area Support Group Leader. Our daughter just started seeing Dr. Rao in May and we have seen significant improvement! He ran quite a few tests. Our daughter was diagnosed 3 1/2 years ago and had improved until last fall when her anxiety and OCD increased once again even with a prophylactic dose of azithromycin provided by our wonderful ENT who also sees PANDAS patients. Since so many area support group members had a good experience with Dr. Rao, we decided to add him to our team of doctors. He ran a set of tests from Pharmesan Labs which checked our daughter's neurotransmitters (serotonin, GABA, taurine, glycine, glutamate, histamine, PEA, dopamine, norepinephrine, epinephrine)and found that our daughter's glutamate was high so she is currently taking GABA to lower the glutamate. He ran a NutrEval test which checked her antioxidants, B-vitamins, and minerals. This test showed that her CoQ10 enzyme was very low so we are supplementing that as well. He ran basic blood work that checked all sorts of things (lymphs, immunoglobulins A/G/M, Chlamydia pneumoniae (IgG/M), mycoplasma pneumonia (IgG/IgM Abs), immunoglobulin E, rubella antibodies, cytomegalovirus, all of her vaccine titers (to make sure she was covered as we've discontinued vaccinating for now and all was good). This test showed that although her titers were okay a year ago, her mycoplasma titer was now at 727 and should have been between 0 and 90. He put her on GABA, Zinc, CoQ10, and azithromycin 250 mg daily. She began the higher dose of azith the end of May and the other supplements mid June. Some of the tests were done with blood work. Others were urine tests. He also tested her yeast levels and those were fine.
We have seen quite an improvement. For the last year, her concentration in dance and school has been off. I was talking to her instructor about a week into taking the supplements and was just asking a general scheduling question. The instructor had no idea that we had changed anything but out of the blue said, "I just wanted to tell you what a change I've seen in your daughter the last few lessons. Her focus is back and she is picking up combinations with no problems." I nearly cried and told her what we were doing. In our case, adding Dr. Rao to our team of doctors has made quite a difference. We are only 2 months in and are hoping that this progress continues and that our daughter maintains what we have gained. She is at camp this week and we sent all four of her pill bottles along and I gave them to the nurse. I will be interested to see if it is easier for her to concentrate in school this year as well.
In seeing Dr. Rao, expect to wait for about an hour past your appointment time before you are seen. However, also expect that Dr. Rao will be with you for anywhere from 30 minutes to an hour. He is thorough and takes his time with his patients.
There is another family in our group that has had IVIG with Dr. Rao. This family convinced Dr. Rao to follow Dr. K's (Chicago PANDAS doctor) PANDAS IVIG protocol here locally. Please let me know if you have any additional questions!