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Posts posted by jtp

  1. Hi Jen,


    My DS 14 is a patient of Dr B's too. He has been on a maintenance dose for almost a year and it took us about a year to work up to that dose. His reactions to the shots only a happened a couple of times and it was just a tender area or swollen area where the shots were given. Mostly he reacted to the mold injections...His worst allergy is pet danger then dust and mold.


    It has definitely worked for us, but keep in mind this a commitment. Especially in the beginning but now he receives 3 shots once a month. I don't have another appt with Dr B until this summer, but at that time we will discuss how long we need to continue with the shots. I'm assuming a couple more years. He hasn't had a sinus infection for a least a year and half.


    Sorry I can't answer your other questions, but we are really pleased with the results of the injections.

    Hope this helps.

  2. I had allergy shots as child and they helped me tremendously. My DS(with PANS) is currently getting allergy shots and he is doing much better. The shots have not increased his PANS symptoms at all. He would develop sinus infections from allergens. So far since the shots have kicked in he hasn't had any sinus issues... I also tried the air purifier, washed linens each week. Vacuumed more often. Nothing worked as well as these shots. But he's on his second year and it takes a while to kick in.


    Everyone is unique so you may not have the same results as us. But we are happy with the outcome.

  3. Just curious did you ask if you can have a phone appt with his assistant to get the results? Sometimes you can get in quicker especially since you're an established patient... Also what about driving there for an appt...We used to have troubles getting an appt but lately it has been a lot better. From what I understand they opened up another day for appointments. But we haven't been there since July.


    We have not tried to get into Mass General but I would assume there would be a wait there as well.


    Hope you get your results as soon as possible.

  4. My DS takes this only 1 pill 2x a day for a few months now. Not for speech issues just because the Doc said it's a good quality fish oil. We may increase down it down the road, but dealing with infection at the moment so this is on the back burner. We haven't had any good or bad reactions using this.

  5. Nancy,


    Thanks for the info. I really dislike finding a therapist it's like a shot in the dark. Since my posting this morning I sent out a few emails asking therapists if they heard of PANS. Much to my surprise they did. Two therapists were very interested in our case and were asking me for more information. Apparently both therapists have been contacted by other families with PANS. I gave them as much info as I could and told them they could contact me again if need be. As much as I like to hear that PANS is finally reaching therapists I don't feel comfortable sending my son to them as a test subject. I will check into the OCD website. And I also received a PM with a name. Love this forum, it's a life saver!


    Thank you.

  6. My DS(diagnosed at age 12) is just about 14 and in 8th grade. He has been off of abx for a year and doing pretty well. He is being treated with allergy shots by Dr B. which has been very helpful with his sinus issues. I can still see that PANS is lurking in the background by a few signs and symptoms. We decided to give Dr O a try and she was amazing. We have a follow up with her next week to review all the lab work.


    Since puberty has now arrived and in full force he just doesn't seem right to me. I've noticed a bit of depression. He gets obsessed with video games or reading books. He spaces out, forget assignments etc. I have also noticed his leg is always moving, if he's sitting or standing up. Since most of our kids suffer with OCD I'm wondering if he has it. I have never been able to pin point OCD as the culprit, but from what I read on here it could still be an issue. I think he has a lot going on in his head and he distracts/or gets obsessed with other things to keep his mind off them. His answers to my questions are always, " I'm fine Mom". He said he is open to seeing a therapist.


    He is small for his age. He doesn't fit in with the rough & tough boys so he's a bit of a loner. But he has an amazing sense of humor, great writer does well academically(for now). He gets along great with teachers and adults.


    My question is what sort of therapy/therapist do I look for? Psychologist? Social worker? OCD? LMHC. He had a therapist for a time in grammar school but she said he was fine and we moved on. How do you find a therapist that is PANS friendly?


    If you are from MA, feel free to PM any suggestions.


    Thank you

  7. Like Missmom I get a little nervous saying my son(13) is doing well(Pans began at age 8), because yes I fear another backslide. He was on Azithromycin for a year helped a lot but then had gut issues. Still feel like some gut issues are hanging around (off abx since May). His allergies are improving with weekly shots prescribed by Dr B. his sinus issues are better and we believe that's where most of this began. So we're hopeful. Lyme is always in the back of my mind but I can't bring myself to take that route for him just yet. I've been told that if he had lyme he would not have gotten better on Azith. We've had minor flares off abx but managing. The fear of a major flare remains.

  8. I have a son with PANS and a daughter who was diagnosed with Lyme in May/June this year. My daughter has suffered severely with anxiety, depression, mood swings,add, slight ocd, eating disorder, allergies hives and so on. No psych meds have ever worked and she would have allergic reactions to meds. She's tried about 4 different birth control pills and had to stop them all for several reasons....4 months ago she tried Camila (progestin only bcp) and she's not perfect but she is soooooo much better. Still a bit moody at times but it's like night and day. She is now working more on her general health and mental health. So maybe there is something to this. hmmm.

  9. Wombat,My son and I are currently under Dr Lemke's care. She has never told me that we couldn't work with her if we were taking ABX. We really didn't discuss that too much since my son stopped abx a few months ago. I was also taking abx when we started but I was at the end of my prescription. I am trying to keep my son healthy enough so that he doesn't need to take an abx( it really messed up his gut). Only time will tell.


    I know we will continue working with her and our regular PAN's(Mycoplasma triggered) doctor and Integrative MD for now and see how it goes(she is aware of this). I don't think this post really helps since we are fairly new to homeopathy, but feel free to PM me before your appt and maybe I can update you further. For now both my son and I doing well.


    Good luck!

  10. Sounds like you are definitely moving in the right direction! Bentonite clay is an alternative to charcoal, but it's a yucky drink (tastes like liquid chalk), so it may not go over any better with your daughter. Charcoal can be taken as pills, so its easier. They are black though, so this will start a conversation... Maybe try telling her what they are for, rather than what they ARE. Our integrative doc, who's treating us for Lyme and mold toxicity, also says to drink plenty of water with fresh organic lemon throughout the day, exercise at least once a day, and do epsom salts baths for detox.


    Since your son has been off abx for 5 weeks, he can do the Advanced Labs test in another 1-3 weeks. I would push for that, as the Igenex tests rely on the immune system to react, which is not a good strategy for people who's immune systems have been ravaged by Lyme. I have never tested positive to repeated Igenex tests over the last 8 years, but tested positive via Advanced Labs this Spring. And when Lyme researcher Eva Sapi tested CDC positive blood samples with Advanced Labs' culture test, there were no false positives. There was a 4-6% false negative rate, which is far, far better than the western blot. Its $600, but well worth the cost. I've spent several times that on western blots over the years.


    Are you and your husband symptomatic?


    I wish you the best in pursuing this. Reading Cure Unknown will help immensely in clarifying all of this for you.

    Thanks for the info on Advanced Labs that is new to me, I will definitely check on that. As far as my husband and I being symptomatic, well maybe and possibly.


    It's hard for me to tell since I have suffered with a mycoplasma infection which from what i can tell has similar symptoms to lyme. I also have had off and on rosacia which seems to be in combination with my mycoplasma symptoms. So checking for lyme and co infections seems to be a good idea.


    My husband has(in our 19 years of marriage) removed many deer ticks from him and his clothing throughout the years. He has been tested annually for Lyme. But it has been the standard test at his PCP's office. A few times he was treated prophylactically. He has sore joints and just recently had a bout of night sweats. He is the one who has been exposed the most.


    Our symptoms haven't been severe but they still should be checked.

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