ktdommer

My son's treatment from his ILADS doc covers Lyme,Bart, babesia and viruses all at one time. I don't understand why some docs feel they have to rotate what they treat. Son's treatment is intensive and has overlapping which is good. For example, plaquenil can work on babesia and help in other ways. You may want to investigate adding Artemesia to babesia treatment at some point. My boys hated mepron so they re doing malarone. Good luck.

I am sorry you are going through this. I know as a mother your heart must be breaking. I am new to PANS with my son but have been dealing with Lyme for nearly 4 years with 3 in the family. My son also had intense, over the top carb cravings as if he was being driven to eat. This doesn't sound like diabetes to me but more like parasites. My son has babesia with Lyme and when it rages, his cravings rage. I always felt it was like he was feeding something and now I know. He wasn't like that before. I am a teacher also and have found my sanity at work which is ironic when most teachers feel the opposite. I hope you find the answers soon and get help.

We take curcumin in a product called Enhansa from Lee Silsby Compounding Pharmacy. My sickest just went up to 6 a day after PANS diagnosis.

Three in my family vitamin D deficient. Doc says due to Lyme and deregulation of the body. He measures our floating D3 and it is in the body but we are not using it as measured by the 25-D hydroxy testing. I think that's the name. Anyway, two measures of D. The important one is how much is being used. My sickest child takes 12,000 IUs daily. Our prior doc said that once he sees normal D in his patients, he knows they are getting better. I can't report any negative side effects. Only youngest with PANS.

Three of us take 3 grams of valtrex a day. The pharmacist now orders the white tablets so we don't have to wash of the blue covering. Our compounding pharmacy works with special dietary or medical needs when compounding. Haven't needed it in liquid form. We don't seem to have any side effects from it. Been on it years! Good luck.

My son, 18, is having the worst luck with psychs. Now that he is declining, I'm finding it harder to find a good psych willing to take him on as a new patient. His dingbat psych announced last week that she didn't know how to help him and maybe it was time we found a new doctor. Then highly recommended psych said he didn't feel that he would be able to help and that my son needed something more. He doesn't need a hospital or a home, just a good doc willing to work with him to find the right combination. I haven't even asked a psych to treat bart or PANS.

Thanks everyone. I appreciate the feedback. I know the brands vary so much. Small gel cap would be best.

Five in my family see him. He is wonderful and brilliant. He is ILADS trained and has an incredible understanding of all the systems of the body. My sister flies from Tampa to Cleveland to see him. My nephew was treated by him and is doing well. He is agressive but very integrative. He listens and lets me ask my million questions. My oldest is at OSU so we see him in his Columbus/Worthington office. We started with the doctor in June after 3 years of doctoring with Chicago ILADS doc who lost his license. I wish we had switched earlier. My sister and my youngest are very complicated and sick. Private message me if you need any more information. I am willing to talk on the phone also if you want. Kari

My son's Cunningham panel showed probable PANS. He is starting vit. E, K2 fish oil and Enhansa. Is is on a full treatment for Lyme, bart and babs along with viruses. What brand of fish oil is best? Need a good price and odorless. Small potent capsules would be best. Barely room for regular size fish oil in his med trays. Thanks!

Thanks for sharing Ophelia. My son could not push a button consistently and with accuracy. He would be sleeping most the time. Not sure how he would even get there since he shouldn't be driving with neuro issues. I would think heavy focusing in an X-ray machine would give him migraines. We have tried to think of everything. New neuropsych testing shows huge memory deficits and processing speed is low.

My 18 year old son's results are just in. I have an appointment at 4 to go over results with Lyme ILADS doctor. I believe this clearly shows PANS. What do you think? 2 of the tests are incomplete due to temporary manufacturing supply problems. Hope those 2 tests are coming yet. Dopamine D1 at 8,000 norm range 500-2,000 shows high yellow TUB at 4,000, norm 250-1,000 CaM Kinase II 1t 157 range 53-130 Dopamine D2 incomplete Lysoganglioside incomplete Thanks for any insight you may have!

Not ready to accept this new reality I'm afraid. 4 years in April with Lyme, Bart, babs and myco diagnosis. The hardest part is having one son living a normal life as an engineering student at a great college and another one floundering with med and psych issues. This week that child, 18, filed for disability. Need to get to a happier place soon. Nothing has prepared me for nearly daily suicidal conversations. Read that that can be a obsession of PANS. Wish he had tics instead. I do reflect and know that this path we are going down has changed me also. Thanks for sharing your post. Crying in front of my iPad again. And yes, thanks to virtual friends. Would be lost without Lyme mothers.

My son had chronic throat issues for 1.5 years. Sometimes strep sometimes not. Sometimes with puss pockets and or what looked like ulcers. It was terrible. So much pain. No answers. 9 months of IV Rocephin cleared it all up and so far no return of any of it 2 years later. He is still on heavy Lyme treatment. Hope you can find an end to the family misery soon!

Prescription meds aren't tackling depression and bipolar type symptoms for my 18 year old son. A mother on this forum so kindly private messages me about her child's success with Deplin. Does anyone else use this supplement with their children? Any experiences to share? Kari

My son was up to 5 mgs of abilify with 2 other antidepressants. He refused it anymore. Said he didn't like the way he felt on it. Slowly trying to ramp back up on lexapro without side effects. Did anyone have huge weight gain with abilify?

I like your doc just by the fact he prescribed VSL. Not the norm. Does your son have any aches or pains? New stomach issues? migraines?

Not all fish oils are created equal. I usually shop at swanson's online with free shipping. I like to read their buyer reviews. They carry so many brands at great prices.

Thanks. I've spoken with a lawyer and a private advocate and have received good info. The advocate will use son's income of 0 with a slideing fee scale. She knows a lot about county programs. My son can be on my insurance until 26. He will apply for nmedicade though to help with copays etc. hard to imagine him living with us much longer and even harder to think of him living on his own. He literally is falling through the cracks.

trin- are you with an ILADS doctor?

Results of the MFE should go into the child's CUM and copies can be requested by parent or new school. My son is doing neuro-psych testing privately and our insurance is paying for it. It will be all day testing and more thorough than the school's testing. I am looking for things like processing speed and possible executive function disorder. Hoping doc will pick up behaviors also and document. Need an insight into his brain and how it works and what it is capable of to plan for the future. Good luck with your decision.

Thanks joybop. I know I have a lot to learn.

I made the hard decision yesterday that my son may need to go forward with applying for disability and medicade. I know he is sick psychically and mentally but I am near the end of my rope in dealing with his behaviors. Cunningham results won't be in for weeks. He is refusing to treat Lyme and last night he talked with his ILADS doc and will take 5 meds and that is it. I'm so worried that he will regress even more. It is like he can't think or process what he needs to do to get better. With depression, he sometimes just doesn't care about tomorrow. I feel stuck! Lyme was hard enough with minor psych issues. Now I am overwhelmed by just psych issues. Does anyone have any advice or suggestions for me? My though is to start with a disability lawyer because he is so complicated and cannot wait two years financially to get help. I don't know when or how he would ever work. Thanks!

My son and I are on mino. Hits both Lyme and bart for us. We take rifampin to target bart.

I just squeezed a lemon into a glass of water, added a little Stevia and alkaseltzer Gold. We order through Amazon but most pharmacies will special order it for you if not on their shelves. Milk thistle and alpha lipoic acid are supplements we take daily for detox. We learned this winter that we all (myself and boys) have MTHFR mutation so even more imortant to detox. Lots of water is a must. Baths with epsom salts help. Like lots of epsom salt. Buy in big bags. You can google Lyme and detoxing and get lots of information. Also at lymenet many people have posted what is working for them.

My son is in process of PANS testing. We blame bartonella for most of his pysch issues. All bipolar issues cleared up at 3rd month of IV rocephin. Anxiety went away. Depression improved. At 9 months everything was so much better but not perfect. Now he is backsliding. Herxing from antibiotic treatment can be severe. Learn how to detox. You may also want to look into MTHFR testing, if you haven't. There is so much to learn about Lyme. I hope you are having testing done through IgeneX Labs in CA.