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My daughter reacted immediately to augmentin and then zithro with rages and herxing. It's what brought me to this board and to the wisdom that you all have shared with me. Detox, detox, detox is what you told me. What about Advil? 20 mg per pound of weight 3-4 times per day for 10 days. See if that helps. Advil really helped my dd through the worst of her herxing. Also CBD hemp oil has become a lifesaver for us.

I just did genetics test through 23andme for my daughter and according to her specific gene make up, she shouldn't have melatonin so some people shouldn't use it.

My daughter is supposed to start at Rothman on the 14th. I made this appointment many weeks ago when we were in a deep hole. Now we are starting to see some light, and I'm wondering if it is "necessary." I guess this is my big question... if we get the infections under control that are causing the OCD symptoms (and also supplement to deal with the genetic mutations) will the OCD go away on its own (and through proper supplementation to address COMT/MTHFR mutations)? Her LLMD suggests that long term OCD causes bad habits with the central nervous system that are hard to undo and ERP is the best way to do that. But what is long term OCD? She's "only" had it now for six months or so, and it is really being helped right now by low dose SSRI (see below). I'd really rather not spend three weeks (or more) in St. Pete this summer. Of course we are all doing things we don't really want to do. But mostly I don't want to "waste" the time and the money if the OCD will eventually go away on its own. But if we're going to do it I'd rather do it during the summer. And we do not have an ERP therapist in our area. We do not have a PANS psychiatrist (none in our area) and we have never seen a neurologist (have an appt on the 16th that took three months to get), and we love and trust our LLMD so we are letting her drive the bus so to speak. She says Rothman is a good idea but I'm no longer feeling it in my gut. Thanks for your advice. I know no one can make this decision but me. And I know no one can tell me for sure that OCD will go away when infections are "healed." I'm just wondering what your experiences have taught you. For background, she was diagnosed with PANDAS in early March (after several months of increasing OCD behavior) and started Augmentim and then herxed pretty bad. She has high strep and myco p titers. Switched to zithro, started detoxing and switched to a LLMD who suggests a tick borne illness and possible bartonella (switched to PANS diagnosis). Will begin a pulsing abx protocol in a few weeks but first prescribed low dose Luvox to calm her nervous system down a bit. We are also supplementing with CBD hemp oil. That combo of 37.5 mg luvox and 10 drops hemp twice a day has her OCD symptoms under control to the point that most days of the last few weeks have seemed almost "normal" with only a flare every few days.

I also found a lot of good info on Yasko's book. http://www.dramyyasko.com/wp-content/files_flutter/1327512160_9_1_1_8_pdf_02_file.pdf My dd also has this. I'm still very new to this but seems much more straightforward to "just" have COMT and not COMT and MTHFR which for me seems to have opposite treatments.

Just got my daughter's 23andme results back. She is +/+ for COMT V158M and H62H as well as MTHFR A1298C. For COMT she should be taking hydroxyl b12 (or cyanocobamin?) but for MTHFR it is recommended methyl b12. So which do I do? It seems that everything that is recommended for one of the mutations is advised against for the other. She is also +/- for VDR Taq, MAO, MTR, MTRR (also suggests methyl b12), BHMT-02 and 08 and CBS A360A (she does not appear to be very sulfur intolerant). For background, she was diagnosed with PANDAS in early March (after several months of increasing OCD behavior) and started Augmentim and then herxed pretty bad. She has high strep and myco p titers. Switched to zithro, started detoxing and switched to a LLMD who suggests a tick borne illness and possible bartonella. Will begin a pulsing abx protocol in a few weeks but first prescribed low dose Luvox to calm her nervous system down a bit. We are also supplementing with CBD hemp oil. That combo of 37.5 mg luvox and 10 drops hemp twice a day has her OCD symptoms under control to the point that most days of the last few weeks have seemed almost "normal" with only a flare every few days. However, one thing that everything we're doing isn't helping is her anxiety. She is on edge all the time. We now realize this is from the COMT, CBS and MTHFR so I really want to address these issues to give her some relief. She is also still slightly constipated and only has a bm every few days. She is taking antifungals for yeast overgrowth. So, here is my question: anyone else have a child with COMT and MTHFR? What do you suggest? And what about folate? Is there one she should be taking? Her last test results showed low magnesium, selenium, manganese and molybdenum. She is taking magnesium daily and eating two brazil nuts (read that on Buhner's page) for selenium. Should we be adding manganese and molybdenum too? And I think I read something about P5P b6. What I'd love to start with is something that will make her less anxious b/c that's what is making her life so hard for her right now. My head is spinning. I've been limiting myself to just two hours of "research" a day for sanity sake. I just finished yasko's document and am now moving on to heartfixer. Thanks for reading and for your help. This group has been so good to me.

Awesome! Thanks for this. I read a very hopeful thread and am going to buy some of the oil today. Can I ask how much does your daughter weigh, and what dose are you giving her? My dd is 12 but only weighs 56 pounds. We want to start low, of course.

We finally met an LLMD today (Jemsek Specialty in DC) who has given us a good plan and some hope. After six weeks on abx we are basically treating my daughter for co-infections due to the extreme herx reactions she has had with little improvement of her OCD symptoms except when taking round the clock advil. We are trusting her to drive the bus of our treatment plan rather than a PANDAS physician. My DD12's OCD symptoms are so bad right now, however, that the dr wants to put her on an SSRI to calm her anxiety down a bit. She is suggesting a low dose Luvox. After searching the forums, I am not encouraged. Has anyone had good luck with Luvox? And can you tell me what the side effects were? I see a lot of reference to things like "Luvox was awful for him; made things worse" but I'm wondering in what way things were worse and what was so bad. Right now she is afraid of everything all the time. Her anxiety is so high she makes herself nauseas and then it gets worse b/c throwing up is her worst fear. She barely eats or drinks. She has to closely examine everything she touches or uses like toothbrush, hair brush, medicine, food. She refuses medication most days. She has bouts where she fears there are bugs crawling all over her and hits herself and scratches and/or throws things. She wants to start a pulsing protocol of zithro, Bactrim SS and minocin (sp?) three days a week for two weeks and then off for a week. But first we want to control her OCD which I am all in favor of. I'm normally not a pharmaceutical person but she is living in such fear right now, and it, as you know, is controlling our lives. Anyway, your thoughts on Luvox would be most appreciated. Thank you!

Thank you to everyone for your kind words. After a few more good days we had another day from ### today. But we did see an LLMD from the Jemsek Clinic in DC and have a plan. I feel good about it, but alas, first night with the new medication, and she refuses to take it. She didn't take advil all day today, and OCD is back with a vengeance. I hate this.

I'm so sad today, and I know you are the only group of people on the planet who understand. My daughter had a great day yesterday. After a mild flare in the morning that she was quickly able to turn around, it was like we had our old funny, smart, happy girl back. She was laughing and telling jokes and genuinely seemed happy. Today, almost the exact opposite. Several flares, the same old OCD, some new bad habits like hitting herself and calling herself "bad." Yesterday for a split second in the tiniest part of my heart I thought maybe we were making progress (after only two short nightmarish months). Maybe her immune system is kicking in and kicking this thing. Maybe we're one of those families that wakes up and PANDAS/PANS is just gone. And today, I'm just sad because we're back in the hole that seems very dark and deep. Thanks for letting me share. I know you've all been there. Maria

I am interested to see where you went with this. Have you tried the herbs?

Thanks again to everyone for the info. LLM I am very interested in methylation. I read the link you mentioned. There is no way I am smart enough, patient enough, observant enough, "present" enough to do all this. Seven weeks on antibiotics and I couldn't even tell the doctor if there was an improvement in her symptoms. And I couldn't tell what was her "normal" (or what we had come to know as normal behavior) from herxing. What happens to the kids who don't have parents who can figure all this out? Do they just never get better? Because I'm seriously afraid I will never figure this out.

What is MTHFR?

First, I'm addicted to this board. I have learned so much from all of you, so thank you. I don't know how I would have made it through the last few weeks without all your advice and experience. My dd11 has never been a big water drinker but since her PANDAS diagnosis it is worse than ever. For her weight she should be drinking 30 oz a day. We're lucky if she gets 15 on most days and that is with constant nagging. If we don't tell her to drink, she would not. She won't drink anything so I can't even bribe her with sugary drinks not that we even have that stuff around. With all these abx and detox and advils and everything else, I know it is so important to drink. Is this a symptom? Any advice on what will make her drink? I know she's dehydrated. She complains of thick saliva and spits it out. And although she has a bm daily it's not easy for her.

She has always taken the same multivitamin. I guess I could stop it for a few days to see if I notice a difference but really every day is different right now so I don't know how I would even tell. Water is a whole other story. Ugh. She won't drink anything. She's always been that way but now it is worse. She drinks maybe 15 oz a day and that is with me practically forcing it on her. Is this a symptom?. It must be.

Can you tell me what you used to reduce anxiety? We are currently tiering up with inositol which seems to be working but I'm thinking it's actually aggravating her ADHD and when I looked online, studies have shown it can make ADHD worse so I'm reluctant to continue with it much longer. Not sure what else to try as NAC irritates the stomach, and she has stomach issues as it is.

I am looking for dosage info and side effects for NAC. I searched the forum but thought this might be easier than going through all the posts. My dd11 is only 58 pounds. PANDAS diagnosis two months ago for strep and mycoplasma pneumonia. Did four weeks of augmentin with no relief and just finished 9th day on zithro also no relief although a lot of die off. She is also taking Nystatin for yeast as well as chlorella for detox and a probiotic. We tried inositol, and I believe it is lessening her OCD symptoms but it seems to be making her ADHD so much worse so I want to try NAC instead but I heard it might be hard on the stomach. Everything she already takes is hard on the stomach. Thanks!

We do have a PANDAS diagnosis due to high strep titers. Also high mycoplasma pneumonia. The dr wants to start her on Mepron b/c of her herxing, specifically the rage/anger/throwing things. I guess she said other patients with babesia have reacted the same way. She tested negative but I guess there are only two strains of 100s that can be tested. She doesn't have another other symptoms of babesia or lyme for that matter except for the herxing. I can't get an answer if there will be herxing with mycoplasma pneumonia. Do you know? After four weeks on Augmentin and 10 days on Zithro we are seeing no reduction in her OCD symptoms. I was thinking the low doses of inositol I was giving her was helping but then I realized today I think it's actually making her ADHD worse so I'm thinking of tiering off the inositol and adding NAC instead. I'm only giving her (1) 125 mg tablet and most times she refuses. I don't know how I'm going to get 300 mg in her. It is an OCD thing. She thinks it will make her throw up. We do have an appointment with Dr. Latimer in Bethesda but not until June 18. I'm going to keep pushing with the zithro, detox and advil as much as we can until then.

Thank you, rowing mom. Unfortunately after 1-1/2 good days with no herxing it has returned, and she only made it to three classes at school today and she is refusing advil again.

Thank you, SF_Mom. We finally were able to get her herxing under control with some detox. She has steadily been taking Advil which I also think is working and we've worked up to 1.5 mg of inositol a day. I don't think her PANDAS symptoms are any better yet, but we are so grateful for the fact that she is no longer herxing that I'm ok with that for now. We had two days leading into the weekend where I thought I was going to have to have her hospitalized to keep her rage under control. Fortunately it's been 1-1/2 days since the last episode, and her overall mood is so much better, too. Hopefully we'll start to see some improvement of the anxiety, mood swings and OCD this week. I know the inositol is working b/c she is still saying some of the same things that bother her but she isn't responding to them in nearly the same way. Our dr still wants us to treat for barbesia... I've read that there isn't any die off if the infection is just strep. But she is definitely having die off, so I guess now we have to find out what else is causing the infection.

She is taking probiotics. Only once a day. Trying to get more in her but she refuses almost all medicine. It is a fight so I'm trying to get what is the most important although it's hard to figure out. Thank you to everyone who is helping to keep me sane today. This has been the worst two days so far. I know it's not going to get better fast. One day at a time. One hour at a time.

She is on Nystatin two tablets twice a day. Trying to get detox in her but she refuses to take it. So four more days on this abx... thanks.

How long do you give a new abx a try before you determine it's not working? My dd11 was diagnosed with PANDAS 6-7 weeks ago. After a month on Augmentin with only worsening symptoms we started her on zithro six days ago. Her symptoms are worse still. How long do we try the new antibiotic before we say this one isn't going to work? She has progressed from having flare ups once a week to several times a day and couldn't get to school on Friday and I'm doubtful she'll make it on Tuesday. We have finally started to get her to take some advil. Her defiance has made it nearly impossible to this point, so we got two 125 mg tablets in her yesterday and will try for more today. She only weighs 58 lbs. I am desperate for help as I know many of you are/were. I am trying to remain calm. How do you just watch as your child rolls around on the floor screaming that there are spiders on her? And throws everything in sight trying to break something? I want so desperately to drive her to the children's hospital and have them hook her up to some miracle cure but I know there isn't one. Bravo to those of you who are dealing with this all day every day and have been for weeks, months, years. It's only been a few months for us, and I am losing it.

Thank you so much! I just purchased the Jarrow this week, but she refuses to take it. I will keep trying. I also bought chlorella for detox but alas, she refuses that as well. Today she refused her abx for two hours but finally took it.

I just read through some of your other posts and realized you also responded very kindly to mine yesterday. I am glad to hear you are in with a good doctor and are getting what seems to be good help.

I'm curious to hear what you have found out here. My daughter has been diagnosed with PANDAS with high strep titers, and even though her mycoplasma pneumonia numbers are very high, they want to treat her for Barbesia. I don't want to go down the Mepron route just yet. Wondering if you had any luck treating the pneumonia or got a medical opinion.