mdmom

colleenrn - usually both the IGG and IGM are measured it's weird you didn't get an IGM result. We have been treating WA1 aggressively in our house for 19 months now. We are on our 3rd different protocol since it seems to still be lingering - all three protocols involved Mepron. rowingmom - Babesia seems to get angry very quickly when we add in a new med. We just added Proguanil Hydrochloride (one of the ingredients in Malarone) and saw a herx response in less than 24 hours. My son's CD57 started at 13 in May 2011 and has since dropped to 9. His WBC count is always below 3. Elevated liver enzymes are indicative of Babesia as well. We thought we were chasing mostly Lyme with my son for the last year, but since we are treating for Babesia again with him (mostly my daughter has been treated because she was IGG positive), he's finally showing some physical symptoms (most of his symptoms have been psychiatric). Put your seatbelts on - treating Babesia is a long ride I never knew how much patience I had until we started dealing with all of this.

You are in good hands connecting with other parents on this forum. It is quite possible your son might need another round of IVIG - many children talked about on this forum have needed multiple IVIG treatments for PANDAS. While you are searching for more help, you might try giving him ibuprofen. It reduces brain inflammation. Dose it three times a day during the PANDAS exacerbations. I cannot speak much more about IVIG, as we have not done this treatment yet; however, some others should be able to give you more information.

I sure wish I could say yes. But we are still fighting insurance for IVIG coverage. Both kids are still on IV therapy for Lyme and co-infections.

Our infusion company pharmacist told me the same about Gammaked. He said it is made on the same production line as Gammunex. Can't remember why - I believe he did say it was some political reason.

My husband and I take Flagyl 7 straight days per month (we have a different protocol the other 21 days of the month). We have been doing this for over a year. Take probiotics, drink lots of water, or whatever else you do to detox. We feel really crappy (sorry for the tacky word) on our Flagyl weeks, which the doctor attributes to herxing.

Her main Babs symptoms are dizziness, headaches, excessive sweating, low WBC, random attacks of itchiness, fatigue, anxiety She occasionally complains of air hunger (like she can't get enough air in her lungs), chest pain She has a lot of other symptoms, but these are the ones I believe are related to Babesia.

Not to be a Debbie-downer, but we've had a really tough time getting rid of Babesia in our house. We think we are dealing with WA1 because my daughter was IGM positive in May 2011. So we did the treatment that was commonly accepted - 5 months of Mepron+Azith (21days/month) and 7 days per month of Tindamax. Once we stopped and moved onto Bartonella tx, my daughter relapsed and her symptoms came back worse. So then we started all over again with 8 rounds of Mepron+Azith+Bactrim (21 days of month) and Flagyl (7 days each month). Mind you, we are all being treated in the house because our doc says that Lyme docs are finding Babesia in more than one family member, suggesting that it might be transmitted between family members. So we all down the Mepron and my son and daughter are also taking IV Clindamycin and IV Flagyl. Doctor also just recently added Paludrine (Proguanil) (had to get it from a Canadian pharmacy). Some docs are now thinking that to kill WA1 you have to use high doses of Mepron (3 tsp/day) + high doses of Proguanil. If you are familiar with Malarone, it is made up of Mepron and Proguanil. So, bottom line is if you decide to treat Babesia, patience is really important. Good luck.

Hopeny - I sent you a PM

Probiotics changed our lives after having constipation, diarrhea chronically for years. Even with all of the antibiotics, antivirals and antifungals we all take each day, our guts are in good health. We all take 450 billion cells of probiotics/day. We use VSL#3 powder. I know a lot of folks on here follow Dr. T's advice to stay away from strep thermophilus, but we do not see any flares with this strain. It's in VSL#3. JenniferG - you may want to try probiotics to see if they help you. Work up slowly to a full dose.

You can treat with Saccharomyces Boulardi, a beneficial yeast. We use New Beginnnings Nutritionals Sacc. Boul.

Have you ruled out infections? My daughter suffered from a headache for 6 months straight. It was a symptom of Babesia, a co-infection of Lyme.

This is true in my family as well - we should be a case study for a Lyme doc. My son presents only with neuropsych symptoms (sounds weird - but I almost wish he had some visible physical symptoms). My daughter presents with mostly physical symptoms.

Our LLMD told us that having high VEGF not only indicates the activity of Bartonella, but it also has other health implications as well. He said it can make the blood thick and he suggested my DD start taking Wobenzyme (it's commonly used in Europe instead of Aspirin). Anyone hear of this?

We use Sacc B which is in Florastor in combination with another probiotic, which as mostly bacterial strains. Like someone else said, you can take Florastor with antibiotics, but remember not to take it with an anti-fungal. It is hard spacing the dosing of things so that they don't cancel each other out

Would love a PM too.

My DD13 has Bartonella, diagnosed clinically from some of her symptoms and the tell-tale stretch mark rash on her back. LLMD just tested her VEGF level and no surprise, it is high. Before treatment her marks were horizontal stripes across her lower back. Since treatment started they have migrated to her buttocks (and are now vertical), wrapping around the sides of her pelvis and most recently have moved to the tops of her thighs. She tried to find humor in this the other day and told me they will probably travel down her legs and out her toes! Curious to know others' experiences using VEGF levels to monitor Bartonella infections.

My son has done a fair amount of CBT and it has not worked, so I understand everyone's worry in finding just the right local therapist. And the therapist would have to see all aspects of the OCD - including the medical piece going on in our kids. We've been through many therapists- some at a world-reknowned pediatric institute. Nothing has worked to relieve OCD symptoms. My son has even been taught to use his "Mental Toolbox" when he has an intrusive thought. He is literally insulted by the idea of a mental toolbox. I cannot blame him. I am hoping to gain more concrete tools when we go to Rothman in Nov. And they will not live in the "mental toolbox" with the rest of the junk he has been taught.

Thenmama, How can I help? Glad to be a team member. Seriously.

MCnuggets... We are renting a house in St. Pete Beach that is affordable - we are getting a monthly rate for a 3 week stay, which is less expensive than the weekly rate. If you choose to rent something, go to vrbo.com and you will find lots of affordable condos - lots with pool access.

jts - Insurance company thinks my son doesn't meet their criteria for CVID, that's why they keep denying IVIG. Update on peds nephrologist visit -- It was a nightmare. We were scheduled to see one doc and waited 2.5 hrs so the head of the dept. saw my son decided to take the case. She was the most arrogant doc I have ever met and I've met many. She said that "all teenagers have protein in their urine." She refused to look at the big picture and consider all of other immune issues. She took my son's blood pressure and was giving him very specific instructions on where to rest his hands and feet while sitting in a chair. He was trying to make conversation with her and told her that he has his blood pressure checked weekly by our home health nurse. The doctor said "I guarantee you have NEVER had your blood pressure taken properly." Really? You mean to tell me that no nurse or doctor I have ever encountered knows how to take blood pressure properly??? I complained to the staff about the doctor's behavior and they encouraged me to report it to the medical director. They did not seem surprised. When the message that I was upset about the visit got back to the doctor we were scheduled to see, the doctor herself called me and fit my son into her schedule for a visit in October. Do doctors take Arrogance 101 in med school? Bottom line is that I still have no answers about kidney function.

No IVIG yet, although it's been recommended by 5 docs. Cannot get insurance to pay. I've been whining about not being able to get IVIG for him and my potato moment reminded me that he has made huge progress on agressive Lyme and Babesia treatment and an anti-viral (which we call the magic blue pill). He's been on IV antibiotics and IV antifungals since January. He's also been taking multiple supplements (methyl B12, Low Dose Naltrexone, among others) so it's hard to know what it really working. I imagine it's everything working together that is helping. Still lots of progress to be made and maybe IVIG will be a part of the story. Just not now until we can find a way to fund it. Thanks for understanding my moment

I received the new patient packet from Rothman a few weeks ago. It is the first time I have seen the question, "If you are the parent, are there topics that you would prefer not discussed in front of the child? For example, family history, the child's symptoms, peer relationships?" I was most impressed by their sensitivity in asking this question. Every psychiatrist or psychologist we have ever seen (and there have been many) has seemed surprised when I asked to speak privately about certain matters. We have even taken a babysitter with us to appts. so as to not torture my son with hearing about all of his "issues." Keeping his self-esteem intact over the years has been quite a struggle and not speaking about all of his symptoms in front of him has helped. We will be at Rothman the week after Thanksgiving and I have been nothing but impressed by my interactions with the staff and Dr. Storch so far.

This is nothing short of a miracle that only other parents on this forum would understand.... Yesterday morning I put potatoes in the oven to roast - I was taking them to a potluck at church. I did not set a timer, nor did I tell my family that I was cooking. When I returned to the kitchen 1 hour later, my DS15 was eating his breakfast and I noticed that the potatoes had been removed from the oven (and perfectly cooked, by the way). My son announced in a casual tone that he removed the potatoes from the oven so that they wouldn't burn. I started crying - stay with me here - and told him that I was amazed that he was tuned in enough to his surroundings to 1) realize that there was something cooking in the oven and 2) to take the initiative to remove the potatoes so they wouldn't burn. I hugged him and told him that his behavior was nothing short of a miracle and he looked at me in a suspicious teenage way (as if I was being sarcastic). But truly, I told him, it is a miracle that he is now so tuned into his surroundings. I hugged him and told him that we lost him for so many years and that it is a miracle that he has returned to us. He had one foot in the world of autism and slowly the other foot was following until we got the PANS diagnosis almost 2 years ago. Yes, you have all read my whining over this and that since I have joined this forum. But it's these "Potato Moments" that make me realize how lucky my family and my son are to have figured out what was causing all of his developmental/psychiatric issues. I hope you all have a potato moment today.

Why couldn't coxsackie cause PANS? If you read Swedo's paper on www.pandasnetwork.org you will see that it is now believed that any infectious trigger can cause PANS. My son made huge gains when we started Valtrex almost one year ago. We call it the magic blue pill. He has been on it continuously since Oct 2011. I had no idea he had a high viral load, as he never presented as a physically ill child - mostly psychiatric symptoms with fatigue. You should ask Dr. T about using Valtrex. Antibiotics will not reduce a viral load.

Beesknees.... When you get Dr. Elia's new contact info will you please PM it to me? Thank you!