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Everything posted by ajcire

  1. This is interesting to me because I got a hep b shot as a requirement for college... That same year at the age of 18 I develped severe joint issues with my fingers on both hands. This was pre the internet and we honestly never made the connection that it could be the hep b shot. instead we were trying to come up with things like stress related, lyme, weather related (it was cold where I went to school but it was cold where I lived before so it didn't make much sense.. and it happens now at any season but more in the winter) My parents took me to a rheumatologist who at the time just said arthritic like conditions.. I can go many years and not have any problems and then all of a sudden out of the blue it starts.. I have seen different rheumatologists.. tested negative for everything they tested for (lyme, lupus and a million other things)... My ds who has pandas did receive the heb b vaccine as a baby..
  2. This might be a really dumb question. I recently read about something I had never heard of, oil pulling. Has anybody here tried it? Does anybody have any good credible information on it? I was reading about it pulling the toxins out, wondering if it would help possibly with strep as well. I also read about side effects from it as the body detoxed and was curious about that as well.
  3. Thank you!! Now that you told me and I looked, of course it seems so obvious.
  4. I looked at the help section and it said there was a search box. I am sure it's really obvious and I'm just missing it but can someone tell me how to search for a topic on here?. Thanks!
  5. Not suggesting your ds Needs his tonsils out but regarding small tonsils....two of my kids had their tonsils out and with both the ENT said their tonsils looked ok and were small... Then he took them out and said it was good that I did want them out because they were infected messes. He said sometimes the infected ones are squished and look small.
  6. Small bumps on their faces? What is that significant of? My ds has always had them... Ped just said it was nothing.
  7. Thanks.. Yes, Dr. T is very close to here but not what I need. I took my son to him several years ago. I really just need a local dr for the little things..and figured it was worth a shot when you mentioned Monsey My son is mild but sometimes little things come up that really a pediatrician could address if I could find one who would be comfortable doing so.
  8. Thanks.. I'm not far from Monsey so I was hoping you meant there was a doctor in Monsey.
  9. T. Anna, what do you mean a service in Monsey? Do you mean you heard good things about a dr. in Monsey regarding pandas or that you heard good things about Dr. Shulman in Brooklyn from a service in Monsey?
  10. Arial, goodness. That sounds pretty awful... a bit like the "Whose on first" routine. I am really afraid to go to an ID doctor and have them ask me what exactly I am there for because the titers don't mean anything. When my pandas believing (but not treating) pediatrician told me that my son's titers results were not at all concerning and that if I took those results to an ID doctor they would agree I had Dr. T on the other end saying the results were significant. That's where it's so hard... as you all know... when the pieces don't match up with each doctor. Of course at least with my son whose titers were high they could say well, he did have strep throat positive cultures several times to account for the titers... My first and only positive throat culture (with strep throat symptoms of severe sore throat as well) was several years ago. Another question... would my titers be high even if I don't have strep just because my kids have had it? Of course if this was normal than everyone would have high titers all the time because we are all constantly exposed to it. Sigh. I don't really understand most of this which is going to make it very tricky for me to try to get my concerns across to a doctor who might not "get it" As far as the HLA-B27... I would like to think that would be standard for them to check for then when someone comes in with joint issues but I'm not so sure that they checked that. I should have a copy of the results early next week. He had told me all the rest of the labs were normal except the strep but I'm not sure what else he checked for. It makes me really mad that years ago when this started that no doctor suggested the possibility of strep. I feel like no matter what now when a seemingly normal healthy child presents with a sudden onset of anything my first thought is check for strep.
  11. The rheumatologist mentioned reactive arthritis but he said that there is no evidence of inflammation in the bloodwork and that he doesn't visually see any right now so he wouldnt treat it. Told me I was welcome to go for a second opinion but he thinks another rheumatologist will tell me the same thing... he suggested if I was concerned about the strep titers which he says could be elevated just by my being exposed to strep that I should see an infectious disease doctor. I can't imagine seeing a doctor without discussing the fact that I have a son who does not get typical strep symptoms, who has pandas, with elevated strep titers as well but am very much afraid to go to a dr to hear I am crazy though. I am not sure what hla-b27 is. I don't know if it was tested for or not but I will be getting a copy of my bloodtest results any day (he is supposed to be mailing them to me) . I hear what you are all saying on the lyme. I am not quite prepared to go that route just yet. I know the standard bloodtests are not considered reliable but those have all come back negative. I do know that this might be something that I need to consider... How are wholistic/natural type doctors in regards to pandas and strep stuff in general? This is only an option for me if they take my insurance but I do know of a few here I could check into. Do my strep titer results even seem significant enough to be concerned? or do they need to be even more elevated to be concerning. What are pandas doctors philosophies on parents with elevated titers. Did anybody who had elevated titers that then were lowered notice a difference in symptoms within their themselves?
  12. Finally got my bloodtest results on myself. ASO was 207 (normal being less than 200) and the DNase-B was 233 (normal being less than 120). The rheumatologist doesn't think this is connected to my joint issues (I think he's wrong) and since no inflammation showed in the bloodwork or is currently visable to him he said he wouldn't treat it as being caused by strep. He told me he thinks a second opinion from another rheumatologist will be the same but of course I am welcome to get one... He is mailing me the labwork I had done. He suggested instead that if I want another opinion regarding the titers to see an infectious disease doctor. Do most infectious disease doctors believe in pandas? I am asking to see one for myself, not my ds (although it might not be a bad idea if I could find one who gets it) but I have to think there is some relevance to my high titers, joint issues and my ds's pandas. I had a sudden onset of joint issues when I was 18...if I knew then what I know now I'd have obviously been checked for strep but that was not one of the things that they checked at the time. I have had issues with it on and off ever since. Just recently started thinking about the connection. I guess my question is will an infectious disease doctor likely think I am crazy or any chance of them trying to piece the puzzle? When I read about high titers in adults without a strep infection it seems many things say doctors don't believe it needs to be treated...
  13. Did it go down, did he realize in hindsight he had symptoms? Im worrying prematurely but I had written a previous post regarding joint issues in myself a few weeks ago.. now I saw a new rheumatologist and he ordered some bloodwork..standard stuff when testing for different types of arthritis and what not that I had done yesterday including strep titers... He doesn't do pediatric and wasn't well versed in pandas, had at least heard of it and he didn't call me crazy and told me strep is definitely not something to play around with.. I am very anxious about what the results will be. Im very concerned about how long I have had these joint issues without having found a reason. The dr. agreed that my previous diagnosis of osteoarthritis from a different dr. does not sound right to him either.
  14. Just curious if you had high strep titers if your dr. treated it and also if you had symptoms that caused you to check or if you were just curious due to your child's issues.
  15. I saw the rheumatologist today. Unfortunately today my fingers weren't really bothering me so he couldn't see how bad they get BUT he was open to talking to me about things. He agreed with me that it doesn't sound like osteoarthritis which the last dr diagnosed me with. I explained to him about my ds and pandas and he did at least know what it was. He doesn't do pediatric so I imagine he wouldn't come across it. I told him I had to question if my issues could be related. Ad he said, "I'm guessing you know all about strep titers" and he put that first on my bloodwork script. He had an explanation for why he wasn't testing me for mycoplasma and I know that I should have pushed him to anyway. BUT I still was happy with him because he still took the time to listen to me and talked to me like I was intelligent and not a crazy woman. Best of all he didn't think I was crazy trying to link anything together. He also told me that next time I was having a visible flare up to stop in the office if he was in regardless of if I had an appointment. Said he will discuss bloodwork with me as soon as he gets the results. He said it sounds like an arthritis that started with a P..lol, he had an accent and that this type sometimes ends up rheumatoid which needs to be treated ASAP. He said the bloodwork will help him figure that out....but that if it isn't likely to turn to rheumatoid to just keep doing what I do which is essentially dealing with the pain. We shall see. Past bloodwork didn't show RA.
  16. I'm so naive I don't even understand how these things can happen. I can not even imagine.
  17. I have an appt on Thursday with a new rheumatologist so I will see what his thoughts are. I'm actually prefer a diagnosis of arthritis to some of the other possible causes but I just felt unsettled with the osteoarthritis diagnosis I got years ago. I have to go regardless though because I currently have no way to manage the pain of it which has gotten bad.
  18. Thanks everyone. Certainly a lot to take in. Wile I do live in a high deer infested area I don't suspect it's Lyme for me but of course I know Lyme is tricky and it could be it. My knew issues started as a kid, both knees...they would literally lock sometimes. I was given knee exercises by a physical therapist that did help. I had long periods of remission from pain at different times. Same with my hands, I would go long periods of time with no issues. I never saw that video and never thought it was leaky gut or food issues of any sort simply because it wouldn't have occurred to me. If it was that wouldn't it be a more consistent problem? If my diet didnt change why would I go years with being fine, have problems, then have years of being fine again?
  19. I'm starting to feel really sad thinking that I might be the cause of these issues for my son. Nicklemama, what kind of dr. did the myco testing for you? Your primary or a rheumatologist? I was the kid who had a cough my whole childhood.. constantly being told it was bronchial asthma.. My younger son's pulmonologist said chances are if I was a kid now like that I'd have been diagnosed asthmatic and given controller inhalers for it.. but goodness... what if it was more than that.. I think back to so many little things.. My knee issues started as a kid.. was always told growing pains.. they used to literally lock where I couldn't open them. Would a good rheumatologist know why I was asking to be tested for myco? Is it a common thing for a rheumatologist? I am just hoping I don't sound like I'm crazy on a wild good hunt just because I just don't think at the age of 18 for me that it was the start of just arthritis without something causing it. At the time I had just had the hep b shot for college and I see lots of online things about hep b vaccine causing it too... I doubt it was the cause of this for me but I have to wonder if there was something and then it triggered it. I'm probably really far fetched and it's hard to try to remember back 20 years to the details of it starting....
  20. I know I have seen many parents of children with pandas/pans mention their own joint issues. I am going to a new rheumatologist next week. In the past I was diagnosed by 1 rheumatologist as having osteoarthritis. It was many years ago and prior to all this pandas stuff with my ds. Another dr recently mentioned that they thought that diagnosis didn't seem right for me based on the age of onset and a few other things (I was 18 when it first started...severe in my fingers and then I had long periods, years of remissions with it seemingly randomly coming back. It's back again. My knees are a problem for me as well). Is there any information regarding my son and pandas that I should be discussing with the rheumatologist? Specific things I should ask him to check? What questions or info could I give him that doesn't make me seem crazy but that might help him diagnose me accurately? I had lots of bloodwork done several years ago to check for lyme, lupus, and whatever other stuff the dr. put on it. Should I be asking for strep titers to be checked? I don't want to sound crazy or to be asking for things that are not connected and wouldnt' be helpful. I don't really understand all the science behind this stuff at all so I'm not sure what information would be relevant.
  21. I'm trying to find the source of joint issues I've had since I was 18. One rheumatologist said osteoarthritis many years ago. Recently i was telling another dr I was at about something else this and she said she really doubted that's what it is. It's acting up again and I m headed to another rheumatologist...this time I'm gong to ask about the possibility of infections or other causes of it.
  22. Thanks kim, I am very curious to see what the dr. say sit is.. I was going to post a pic here but I don't know if it's possible or how to.
  23. No, my son first noticed it on Thursday night and we got slammed with snow on Friday so I didn't get to the dr yet. He might have had it and not noticed it for a day or so prior he said. Its on his thigh. I started using lotrimin yesterday because what I read sounded like it couldn't hurt to try. I think I will take him tomorrow morning to have it checked. I do have pictures of it that I took Thursday and today. It hasn't changed, looks the same. I know it's possible but I'd be surprised if this is a bite of any kind. We are in a high deer tick area but don't think this is that. However I completely just remembered my younger son a few years ago having what I would have bet was ringworm on his trunk a few years ago.. One round spot that looked just like the pictures. The ped had 2 other doctors in the office look at it.. All said it was not ring worm... They had me in a panic because he drew blood... WBC was off and I was very worried... They had me come back and recheck count... In the end they said the circular rash was just a strange reaction to a virus he must have had. Strange now that I'm seeing the same thing on my other son who is having some flare ups of pandas symptoms. Ok, definitely going to have it checked... I hope they do a finger prick on him because now I'm curious on if it would show he has an infection.
  24. I know this is very old... I just found it searching the site for ring worm to see if any one has dealt with it. I think my ds has it... Just started treating with lotrimin but then I saw this post which got me thinking. My son is having a flare (his presents most obvious at bedtime with sleep issues) and I'm trying to figure out if it could be from what I think is ring worm. I'm thinking its ringworm and not what's in the above post since its one spot and not changing? Sounds like the other changes and is not just one spot? He last had known strep in November.
  25. Thank you for that. It helps to hear others who chose not to get the shot.
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